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December 2018

From the 25% ME Group: A Patient’s Perspective – Information Leaflet for Professionals Caring for People with Severe M.E. (Myalgic Encephalomyelitis)


It is important for professionals and carers to remember that this illness can be made worse with physical activity, talking, trying to concentrate or indeed any kind of stimulation or exertion.

Unfortunately this is not widely understood and the misconceptions surrounding this illness can cause additional physical and emotional suffering for those with M.E.

Researchers have demonstrated numerous abnormalities of the immune, muscular, cardiovascular, and central nervous systems. The emerging picture is of a multi-system disease with a strong component of immune and neurological dysfunction. The World Health Organisation recognises M.E. as a neurological illness.

Myalgic Encephalomyelitis (M.E.) describes an illness characterised by a combination of muscle pain (myalgia), and neurological and cognitive symptoms such as memory loss and concentration difficulties (hence ‘encephalomyelitis’).

As with any illness, the symptoms and disability which results will be experienced differently by each individual. Symptoms can vary in severity and commonly include chronic pain and lack of stamina / weakness of the muscles and limbs, acute hypersensitivity to stimuli such as light and noise, cognitive and memory problems, vocal/muscular limitations, multi-joint pain, and severe migraine type headaches.

These are real physical symptoms, which also cause severe distress to the person suffering from them.

The vast majority of severely affected sufferers are virtually housebound or bedbound due to the effects of the disease.

This means their physical and mental limitations are very acute. Commonly the person will require to use a wheelchair to get around, help with transferring from seat to seat within and out with the home, and may have problems with sitting up, using their arms and hands for even simple tasks like doing up buttons on clothing, and have difficulties toileting and bathing themselves. Some very severely affected patients are unable to do any of these tasks because of very severe pain and muscle weakness (not due to misuse or under use) and even transient paralysis – normally down left side. This can leave the person unable even to swallow, or to turn themselves in bed.


• People with severe M.E. are asking for no more than other ill people. They need professionals to be aware of the devastating disabling effects of the illness, and its varied symptoms.

• Even severe debility may not be instantly apparent – for example a sufferer may be able to walk to the toilet when required, but unable to sit up in bed for more than a few minutes, watch TV or go out even in a wheelchair, and they may find that they expend most of their energy on something as simple as eating.

• M.E sufferers are happy to arrange for information to be given to any health care or social services professional, if this will help alleviate the current trend of being met with scepticism and disbelief.

• Sufferers need people to respect their experience and knowledge of their own illness. They want to get better – to regain what they have lost. Sadly, complete recovery is rare. Meanwhile the patients are the only ones who know where their limitations lie, and how much they can do without exacerbation.

• Conspicuous deterioration of symptoms after exertion or stimulus –often apparently trivial– is a key feature of this illness. In particular there is a body of research demonstrating abnormal response to exercise and many members of the 25% ME Group have only become severely affected after attempting this. It is important to be aware of the danger of steering patients towards an approach that is highly likely to cause more harm than good.

Please be a responsible professional and carer – to do this you need to listen to what is being said to you by the M.E. patient.


Most importantly, please listen to the person with M.E. There can be harmful consequences for M.E. patients when they are encouraged to push on through the symptoms.

Thank you for your time, please feel free to contact us at the 25% M.E. Group for more information or to use our service as a resource.

If you have any questions, opinions or general concerns that you wish to be addressed, we are more than happy to hear from you. Should you wish to make any comments or submit your views please do so using the form below and return to the address provided on the front of this leaflet. Or you can contact us by e-mail at:

December 2018

The truths of living with severe M.E.

Here Jessica Taylor-Bearman, who has M.E. and is the author of A Girl Behind Dark Glasses, describes her time in hospital from the age of 15 – and how she became determined to document her experience, despite being severe bouts of exhaustion…

When one gets admitted into hospital, it is always thought that it will only be for a short time, whilst they fix you and then you’re back into the whirlwind of real life, so when I was first taken in with very severe M.E., I thought that it would be the same. It wasn’t. Days turned into weeks, that soon became months and years. Four to be exact. I never imagined that I would be hospitalised for such a long time from the age of 15 but there really was no other choice. Despite it being detrimental to my health to be in hospital, my needs could not be catered for in the community.

Hospitals are anything but ideal when you are sensitive to noise to such an extent that even a pin drop hurts, and to light so much so that you had to wear dark glasses all the time, they are hell. It was made even more difficult by the fact for over the half of the time I was there, I could not speak, move or eat. Tubes kept me alive, whilst passive movements were keeping my range up. Being voiceless was the most difficult element because people didn’t understand my needs and unfortunately, didn’t want to give me the time of day.

M.E. is like living with a constant broken battery of energy. There are no Duracell batteries for this bunny! Everything you do costs, whether it be just talking to someone or sitting in a chair. It is all about pacing the day, so you can conserve energy at every opportunity. When I wake up, I must wait for my energy supply to see what will be possible with the day.

Sometimes, I will be able to do some of my paintings or go on a short wheelchair trip and other times, I can be in paralysis for over nine hours, unable to speak or move. One room is often my whole world, and I spend 23 hours at least in bed. This is a huge improvement for me and is one of the reasons I have managed to cope. Back in 2006, the very best I could do was five minutes concentrating on something and I spent all day every day in bed.

Coping with severe M.E. is difficult, and it is hard to feel like you are living a life and not just existing. I do this by concentrating on the really small things and finding joy in them. I had always said I was going to write a book, and to have accomplished that is a massive achievement. I paint through laughter, and this also gives me great happiness. It is incredibly frustrating to not be able to do exactly what you want and to never know how you are going to be on a given day. Life has become a case of surviving through the pain and suffering. We are like butterflies, fighting for our day to break through our cocoons and fly again.

Jessica’s book A Girl Behind Dark Glasses is priced £12.99 and published by Hashtag Press. Follow Jessica on Twitter @jayletay or see to follow her M.E. journey.

November 2018

The PACE Trial – A Short Explanation by Graham McPhee

The PACE Trial – A Short Explanation by Graham McPhee. Part 3 – Why it matters. 


The PACE Trial – A Short Explanation by Graham McPhee. Part 4 – Where do we go from here?

November 2018

Grandma with severe Chronic Fatigue Syndrome misses daughter’s wedding and grandchildren’s childhoods

The cruel condition affects 250,000 people in the UK

By John Siddle

An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness.

Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 years ago at the age of 60. She was just months into her retirement after a long and happy 40-year career saving lives.

The disease – also known as Chronic Fatigue Syndrome – is a chronic and fluctuating neurological condition that causes symptoms affecting many of the body’s systems. It most commonly attacks the nervous and immune systems.

One in four sufferers are so severely affected that they were effectively housebound or bedbound.

Debilitated and weak, Nancy finds daily tasks so many of us take for granted impossible and was forced to miss her daughter Sarah Jackson’s wedding in 2011.

She has also had to miss the childhoods of all seven of her grandchildren.

For five years, Nancy could not see anyone as she was so ill she couldn’t stand to pick up the phone.

“It was soul destroying,” a distraught Sarah, 46, said.

She continued: “I couldn’t see her due to the effects of her ME symptoms.

“Mum was in a lot of pain at the time. Just the brain strain of conversations with other people or even people speaking aloud in the same room was intolerable for her.

“The stress of anything outside of her routine was too much. The emotional toll of long term illness and her sadness of what she had lost and was missing out on. She just couldn’t cope.”

Sarah said her mum had had a series of operations and antibiotics prior to being diagnosed.

“Within a year of retiring she started having ME symptoms and it progressively got worse and worse and worse, and she’s now been housebound for about five years,” she explained.

“She’s 80, so it’s difficult to tell what health problems she’d have had anyway.

“She has seven grandkids and only one had been born when she retired, so she has missed out on them all growing up. The youngest is nine.

“She missed my wedding, the birth of my children, every Christmas. We cannot do anything as a family anymore because she cannot have noise, light, she cannot read or do any activities at all. She cannot do anything.

“It’s all just completely overwhelming for her to do anything.”

She added: “Not being able to see her or speak to her for a long period of time was quite soul-destroying and was really difficult. I almost couldn’t talk about it at all because it was too upsetting.”

Sarah now visits her mum every couple of weeks to wash her hair – a task Nancy is too weak to manage alone.

Although she has recently started to sit in the garden and soak up some sunshine, she hasn’t left the house for at least five years and is so weak, she cannot lift a bottle of milk.

Nancy was forced to stay at home when Sarah and Geoff, 44, tied the knot and watched the ceremony via a live link.

However, the sound broke, so she missed hearing their daughter declaring her vows to the love of her life.

Sarah said: “She used to say ‘when you have your children I will be there’ and it just couldn’t happen and she couldn’t be at my wedding.

“She wanted to be there, but just couldn’t.”

Nancy’s heartbreaking daily struggle is made marginally easier by a technique known as pacing.

Sarah explains: “She has a routine and sticks to it, minute by minute. There’s no moving away from the routine, it’s a horrible existence for her and my father.”

Every day, Nancy gets out of bed and dresses because “she thinks it’s important”.

“Everything is very slow and methodical,” said Sarah.

Sarah is sharing the story of how ME has ripped their family apart to raise awareness of the cruel condition so little is known about.

“The problem I think is that it’s not very well researched, it’s difficult to get a diagnosis and there’s a lot of scepticism around the condition – people think it’s psychological.

“It’s debilitating and those people [sufferers] are hidden, they are invisible to society.

“They lay around exhausted, and they may look alright but they’re not alright.”

Sarah said she believes funding difficulties and misinformation online – usually from people claiming they’ve been cured of ME – mean it’s hard for even medical professionals to fully understand what sufferers are going through and how to help them.

“The symptoms are collective and it is a constant battle,” she added.

Honorary medical advisor Charles Shepherd said: “Nancy’s story illustrates just how devastating ME can be and the effect this then has on all aspects of normal family life.

“At best, it leaves people struggling to work or go to school. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society.

“Sadly, many doctors are still uncertain about how to make a diagnosis of ME and how to manage their illness, especially for those like Nancy who have severe ME and are housebound, or even bedbound.

“So those at the severe end of the spectrum and up being severely neglected by both health and social services.”

For more information, visit

October 2018

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

[Professor Hooper’s peer-review comments were written to indicate the accurate situation that now obtains concerning the PACE trial raw data. People can judge for themselves if his comments were accepted by the BMJ by looking at their updated version of “Best Practice on CFS” released in September 2018.]

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

Professor  Malcolm Hooper          24th June 2018

NOTE:  I was asked by the BMJ Section Editor (BMJ Best Practice and BMJ Learning) to provide a peer review of Professor James Baraniuk’s document on “CFS”, to which I agreed. My comments below relate to the version sent to me. In my opinion, it indicated how dangerous the medical education programme about ME/CFS is in the UK. This was borne out by my face-to-face discussion with Professor Baraniuk himself on 1st June 2018 in London: he confirmed to me that his original report had already been sent by the BMJ to other referees and that he had received 156 comments which he was instructed had to be incorporated in his report. It was plainly obvious that those comments had been included in the version sent to me. Professor Baraniuk assured me that I should go ahead and respond as I wished, so it seems he knew his report was not as he intended it to be. In telephone discussions with the BMJ Section Editor, it was stressed to me that the BMJ had to have (quote) “equality”.

Current BMJ Best Practice for CFS/ME (October 2018):

My Review

My response to reading this long document of 102 pages is such that I am unable to carry out the review by simple annotations or minor additions to it.

I am grateful for the invitation to respond by means of a single document that sets out my major concerns which I hope the editor(s) will find helpful.

  1. Introduction

The document is far too long if it is intended to be a BMJ Best Practice reference tool help GPs and others to quickly diagnose and support their patients presenting with ME/CFS.

As it stands, it is not fit for purpose.  The document is badly presented: it needs to be clear and factually accurate.

It lacks focus and any critical awareness of the issues under consideration.

It shows little understanding of the latest research, or the social and political considerations (eg. access to social security payments) that patients and informed clinicians feel so strongly about.

The confusion and complexity of the Best Practice document is far from satisfactory and in need of a thorough overhaul.

It is a wasted opportunity to clarify a situation that has evaded medical education for the last three decades.

2. The Title

The report is entitled “Chronic Fatigue Syndrome” but throughout the text the term “CFS/ME” is used, yet the name myalgic encephalomyelitis does not even feature in the title.

Myalgic Encephalomyelitis (ME) has been classified as a neurological disorder by the World Health Organisation (WHO) in its International Classification of Diseases (ICD) since 1969, but there is no mention of this anywhere in the document.

Throughout the document there is confusion about terminology (ME, CFS/ME, fatigue) but it is essential to be aware that the terms are not clinically interchangeable.

On pages 11, 19, 22, 23, 28, 30, 51 and 102, Baraniuk refers to “CSF/ME”, which appear to be typographical errors, since cerebrospinal fluid (CSF) is not being discussed.

3. Historical perspective

The term myalgic encephalomyelitis was coined in 1955 (Lancet 1955:394-395) and in 1969 it was formally classified by the WHO as a neurological disorder; it was accepted by The Royal Society of Medicine as a distinct disease in 1978; in 1987 the term “chronic fatigue syndrome” was introduced at a meeting of CDC scientists for political, not medical reasons, at which it was decided to change the name from ME to CFS and “CFS” appeared in publications from 1988 onwards.

In 1992 the term “CFS” was included in ICD-10 as a synonym for ME (referable only to ME at G93.3), but in the UK, a group of psychiatrists intended to eradicate the neurological disease ME and introduced the term “CFS/ME” (in that order, as distinct from “ME/CFS”) with their stated intention of dropping “ME” from “CFS/ME” when expedient and then reclassifying “CFS” as a behavioural disorder (BMJ 2003:326:595-597).

In the UK, recruitment for the PACE Trial began in 2004 and the Patient Clinic Leaflet stated:  “Chronic fatigue syndrome” is “also known as postviral fatigue syndrome, myalgic encephalomyelitis (ME) or myalgic encephalomyelopathy….Medical authorities are not certain that CFS is exactly the same illness as ME but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they are one illness”.

To complicate things even further, despite his having received ethical approval and funding to include ME in the clinical trial, following publication in 2011 of selective PACE Trial results in The Lancet, the Chief Principal investigator, psychiatrist Professor Peter White, wrote to Richard Horton, editor-in chief of The Lancet, denying outright that the PACE Trial had been studying patients with ME: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.

CFS came to be applied to many different things and considerably broaden the meaning of CFS/ME making it virtually meaningless. Hence, it allowed consideration of other chronic infections, EBV and other herpes viruses, lyme, chlamydia, rickettsia, some vaccines, eg Hep B and latterly HPV and other intracellular organisms eg brucellosis, chemical and environmental toxins, organophosphates, Gulf War Syndrome, Aerotoxic Syndrome, some metals etc. This is ‘confusion worse confounded.’

Clinically, ME is a separate disorder from what is now termed CFS or “CFS/ME”: ME is a recognisable post-enteroviral disease with specific features; it may also follow vaccinations (for which significant evidence already exists and more evidence is emerging).  However, there are a number of states of chronic fatigue which now fall under the “CFS/ME” umbrella and the resultant confusion is responsible for the heterogeneity of the patient population and hence the diverse research findings.

Unless the report author provides the contextual background, he affords a disservice not only to the physicians he is endeavouring to educate but – more importantly — to those patients who depend on those clinicians.

4. The way forwards

The term “CFS/ME” now has come to mean a behavioural disorder and this report repeatedly portrays CFS as deconditioning which can be effectively treated by cognitive behavioural therapy (CBT) and graded exercise therapy (GET), but there is no evidence whatsoever of deconditioning in patients with ME/CFS.  If this whole document is not based on ME/CFS as a neurological/neuroimmune disorder, then it is falsely grounded.

The report does mention biomedical research, but it appears to look on it sceptically, and the take-home message is clear: “Patients should be educated on how secondary physical deconditioning can emerge due to increased resting and activity restriction” (page 76).  This is misleading and it perpetuates the widely-disproven psychosocial dogma that “CFS/ME” is a mental disorder.

It is essential to gain the immediate attention of the reader seeking up-to-date information, so it would be better to start off with a high impact paragraph such as:

“Studies suggest that there is a risk of earlier mortality in ME/CFS and UK Coroners have recorded ME as the cause of death.  ME is a serious, disabling, chronic neuroinflammatory disorder: as long ago as August 2004 the US CDC added it to its top priority list of emerging infectious diseases.  It is not a behavioural disorder; it is not a form of chronic fatigue (which is not the same as chronic fatigue syndrome as listed in ICD-10 at G93.3), nor is it a form of depression and most patients have no psychiatric disorder. There is a state of chronic, low-grade immune activation, with abnormal T-helper/T-suppressor cells and extremely low NK cell numbers/function; brain abnormalities have been proven, as have neuroendocrine abnormalities. ANS dysfunction is integral to the diagnosis, as is disordered gene expression (important in energy metabolism – metabolomics have convincingly demonstrated defects in pathways converting sugars, lipids and amino acids into energy There is evidence of biochemical dysregulation in the 2-5A synthetase/RNASE L pathway (ie. an abnormally elevated anti-viral response). Cardiovascular abnormalities are seminal (including altered brain perfusion, reduced cardiac mass and low circulating blood volume), as is an abnormal response to exercise, with muscle weakness (enteroviral sequences being found in muscle), as well as evidence of impaired oxygen delivery to muscles, with recovery rates for oxygen saturation being 60% lower than in normal controls (Kevin K McCully  et al. Clinical Science 1999:97:603-608). Since 2000, patients with ME have been advised to consider taking legal action against health professionals when inappropriate exercise is prescribed. (ME Association). Inability to tolerate medication is well-documented as being virtually pathognomonic (Professor Charles Poser, Department of Neurology, Harvard Medical School, Dublin International Meeting on ME/CFS, 18th-20th May 1994, World Federation of Neurology). There is high occurrence of allergies and hypersensitivities.  25% of patients with ME are severely affected and are bed/house-bound.  80% of patients do not get better: published CDC statistics show only 4% in remission (not recovery) at 24 months (US CDC CFS Programme Update, 29th August 2001)”.

Physicians need to be presented right from the beginning of the document with a clear list of key physical symptoms, but as it stands, the document fails to do so and the author focuses on cognitive problems.  He does not mention immune, cardiovascular, neuroendocrine or gastro-intestinal symptoms until much later in the document, whereas from the outset there needs to be a prominent box listing the cardinal symptoms; these include:

post-exertional malaise (PEM); exhaustion; muscle pain and weakness; abdominal pain; diarrhoea; balance disturbance/dizziness; shortness of breath; palpitations; joint pain; easy bruising; allergies/hypersensitivities to foods previously tolerated; chemical sensitivities (including to therapeutic drugs); frequency of micturition including nocturia; visual problems; flushing (not the same as hot flushes); emotional lability; lack of restful sleep and cognitive problems.  Pain may be intractable but it may sometimes be absent; hair loss may be total or partial.

To read the rest of the document, please go to –

October 2018

The impact of profound Multiple Chemical Sensitivity in Severe ME

By Greg Crowhurst

A Painfully Nuanced Life: The impact of profound Multiple Chemical Sensitivity in Severe ME.

(Published in the latest edition of “MCS Aware Magazine”)

‘How can I convey to you that I live in a totally different world than you, even if I am in the same room as you, even if you appear to be in the same physical space as me, believe me I am not experiencing anything in the same way as you.’

This is a very short extract, from my new book: ‘Caring for ME’. It is a quote from my wife.

I am sure that everyone who experiences MCS can relate to what she is saying. Suddenly when you develop MCS, a whole invisible world, previously unknown and unimagined, opens up. Smells and chemicals that others tolerate or do not notice, perfumes that they adore, become a nightmare for you.

In the most extreme cases, it cuts people off completely from normality as it was known, on every level, leaving them totally isolated in a world that torments or harms them. Their symptoms are very painful and difficult to manage.

Suddenly you are in danger from letters in the mail, which often come doused in perfume, from shopping in bags covered in perfume, especially if it delivered via a home delivery scheme, from the fresh air even, saturated by laundry conditioners, barbecue smoke, deodorants that give you a severe headache or cause you to be nauseous, develop rashes and severe symptoms such as throat paralysis.

Suddenly your world becomes painfully nuanced by other people’s lives, in ways that you simply could not have imagined and which those who perpetrate the problem cannot imagine either!

MCS makes an impossible life a nightmare. I have had to become very good at asking any tradesman who has to visit, not to wear any aftershave or perfumed product.

If someone pats our irresistibly cute Corgi, who goes around wagging his tail and making eyes at everyone, it’s horrifying if they are wearing perfume. Hours of torment can follow.

We have not been able to find a mask that my wife can tolerate, her skin is so painful and sore to touch that she cannot bear the pressure. One that we did order had to be hung on the line for days, it smelled so much and was still unusable, sadly.

If I dare go anywhere, I need to shower and change very, very quickly.

MCS; it is a disabling lonely experience.

Into this world, the carer is thrown, having to learn what is unseen. Life with a person with MCS demands that you become acutely aware and sensitive, that you develop skills and practices in order to live with or help the other person to deal with all that is required. Not easy, especially when you cannot even smell the scent that your wife is getting so disturbed by, the one that is going to cause a devastating deterioration in her health and much more disturbance to an already painful and difficult life.

My new book is about caring for people with multiple sensitivities to chemicals, noise, light, movement, touch, food and the host of other agonising; all, disabling symptoms, that are found in Severe ME, yet are so often unseen and unknown by the normal world.

Many people do not have a clue how to approach someone safely. I have been caring for my wife full time for the last 25 years, I am still learning.

How to provide the best care then? It is only possible, we have discovered, by taking a moment by moment approach, seeing what is possible in each moment, dealing with issues that come up as and when it is possible – some moments are too incredibly difficult and painful to achieve anything. Even your presence with the person may be too much. In all moments the greatest possible tenderness and awareness, on the part of the carer is required.

This book is witness to a secret, hidden, tormented existence and unimaginable, intractable suffering, that never ends. That is its starting point. The book is part information, part a journey of self-discovery, through questions designed to challenge and hopefully affirm the carer, helping them identify areas they may need to develop further. I have answered many of the questions myself, to encourage and enable.

“Caring For ME” is a little pocketbook of encouragement and affirmation hopefully for difficult days and happier days alike.

By Greg Crowhurst

October 2018

Hospital Booklet

Strange as it may sound to some, one of the worst places for a person with ME to be is a hospital, not least because it often leads to a deterioration in health and an increase in symptoms. The noise, light, use of chemicals, a higher risk than usual of catching bugs / infections, and a general lack of understanding about ME, can all cause major problems.

If hospital treatment – either as an inpatient or an outpatient – becomes absolutely necessary, The Grace Charity for ME ( has produced a helpful booklet entitled “Information for patients and hospital staff regarding treatment of patients with ME (Myalgic Encephalomyelitis)”. The booklet includes information about ME and hospital environments, chemicals and drugs (including anaesthetics), surgery, exercise and ME, and diet and allergies.

To download the booklet as a pdf file –

To download as a Word document –

September 2018

Complaint Report offers hope for those living with ME in Ireland

[This is a long article but well worth reading. I’m posting some of it here; to read the rest, click on the link.]

Christine Fenton

In this post MEAI Advocate Christine Fenton describes her journey with ME and the HSE, elements of which we’ll all recognise. The Result? Recommendations for actions by the HSE.

I was diagnosed with Myalgic Encephalomyelitis (ME) in 1990 and retired from my career in teaching, a Deputy Head of a high school in the UK, in 2000. Two years later I moved to Ireland to renovate a derelict house and enjoy my passion for dogs and horses.

In 2003 I deteriorated and was surprised that my then GP was dismissive of the ME diagnosis and regarded it as a mental health issue.

By 2006 I was losing the use of my arms and legs, I’d suddenly find myself sitting on the ground as my legs gave way, often with a horse above me! My arms couldn’t manage any repeated use of muscles. I collapsed at an out of hours GP surgery and became paralysed for a short period. The attending GP said she’d never seen anything like this and I should go to Dublin to find the cause.

By chance I had an Out-Patient appointment the week after the collapse and was fortunate to meet with a Consultant new to the local hospital. He was willing to listen and regarded my presentation as an ‘interesting challenge’.

My health continued to deteriorate and from 2011-2016 I was spending approx. 3 months annually in acute care.

The difficulties in achieving a home care package to enable me to access the very limited life I was capable of were legion.

Given the limitations of my body, I needed everything available within arms-reach of my resting place. At that time a wooden steamer chair with settee cushions on it was my bed and day chair.

I also needed a consistent temperature as overheating caused me to be unwell very quickly. If my fingers got cold it would trigger severe pain throughout my body, then my legs would give way and I would end up sitting on the floor, sometimes in an unheated room with no ability to return to a warm, comfortable space. I had to resort to pulling ‘something’ from nearby to cover me to increase my core temperature so that I could recover and crawl/push myself, back to safety.

On the days I was too unwell to move, food had to be beside me, small, easy to digest quantities, taken when I had the energy to put food to my mouth, chew, swallow and digest – you’d never believe how hard the action of eating is, something I took for granted when healthy.

At home, as stairs were beyond me and the bathroom was upstairs I had no facilities available to me. Initially I tried a camping cassette toilet, but it was too heavy to empty and needed emptying too frequently. Often it was full on a day I was struggling to use it, never mind empty it. I needed a better solution which met my needs and capability. I decided to use coal buckets as my toilets. When you live in one room and everything, including eating, is done in that room, a steaming commode is just not welcome – we all know the gut problems which accompany ME. There are some indignities I am not willing to contemplate!

The HSE ‘experts on disability’ were nowhere in sight. My request for support at home had been refused without a visit or an assessment being undertaken, no reason was given to explain why I was not worthy of an assessment. Just a refusal letter from an HSE disability manager who made a judgement without any evidence of my needs on which to base it.

So, I was on my own and had no choice but to create a system which allowed my needs to be met, within the resources available to me.

To continue reading the article, click on –

September 2018

Letter to Professor Watt of MRC

By mrspoonseeker

This letter from Professor Fiona Watt of the Medical Research Council in support of the PACE Trial appeared a few days ago in response to the Times article about the growing pressure on The Lancet concerning the trial:


Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the treatment of chronic fatigue syndrome (also known as ME) was unsound. The Pace trial was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed. Other research groups have drawn similar conclusions. Chronic fatigue syndrome/ME remains a priority for the Medical Research Council (MRC), and it is important that researchers are not discouraged from working on the disease because of concerns that they could be subject to the level of hostility that Pace researchers have experienced. Medical research can only flourish when there is mutual respect between all parties.

Professor Fiona Watt Executive chairwoman, Medical Research Council

There have been other responses from patients. Here is mine, which I decided to send directly to Prof Watt.

Maybe she will see it. Maybe she will read it. Maybe she will do as I ask! I’ve sent it anyhow. You don’t win the lottery if you don’t buy a ticket…

Dear Professor Watt,

Like many patients with M.E. I was surprised and disappointed by your letter to The Times wholeheartedly supporting the PACE trial. There are so many misconceptions in the letter that it is clear that you have not investigated this matter yourself but have – apparently- assumed that what the PACE authors tell you about it is correct and what patients tell you is not. I can only assume that this is because they are doctors and we are merely patients.

Yet you say in your letter that ‘medical research can only flourish when there is mutual respect between all parties’. I would certainly not disagree with that. Please then show patients the respect of being open to the possibility that what we (and indeed many distinguished researchers and other informed parties) say about PACE may actually be correct.

I am not asking you to take us at our word, but please look into the matter yourself instead of simply believing what you are told by the PACE authors and their friends. It will not take you long. I have provided a few references at the end of this letter which you will find useful. For the sake of the patients you say you wish to respect, please take the trouble to do this.

Thank you,

Useful references:

Rethinking the Treatment of Chronic Fatigue Syndrome – A Reanalysis and Evaluation of Findings from a Recent Major Trial of Graded Exercise and CBT by Wilshire et al. – Jan 2018 (A comprehensive re-evaluation of PACE following the release of data from the Freedom of Information Act Tribunal.)

Journal of Health Psychology Vol 22 No.9 Aug 2017 – A Special Issue on PACE. “On the basis of this Special Issue, readers can make up their own minds about the merits and demerits of the PACE Trial,” writes Editor David F Marks.

A letter to The Lancet signed by over a hundred scientists, clinicians, academics, MPs and other experts plus over sixty local, national, and international patient organisations, calling for an independent re-analysis of PACE and setting out the reasons why.

The August 2016 PACE Trial Freedom of Information Tribunal Judgement has useful information about so called hostility to PACE researchers, an unfounded allegation which your letter unfortunately perpetuates.

Two notes relating to this issue:

• Allegations were made at the Tribunal by a representative of the PACE proponents that ME patients, described as ‘activists’ were ‘borderline sociopathic and psychopathic’ and posed ‘a serious threat of violence to trial participants and researchers’ but the Commissioner described these as ‘wild speculations’ which did the representative ‘no credit’ (see pages 22 and 36). PACE researcher Prof Chalder accepted that ‘there had been no threats made either to researchers or participants’ The Commissioner stated that the ‘assessment of activist behaviour was grossly exaggerated. The only actual evidence was that an individual at a seminar had heckled Prof Chalder.’ (see page 40)
• Your letter also suggests that researchers might be ‘discouraged from working on the disease because of concerns that they could be subject to the level of hostility that PACE researchers have experienced’. The idea that researchers are being discouraged in this way is another often repeated misconception which seems to be intended to vilify patients. Working for the MRC, you will be fully aware of how little funding M.E. has received over the years. Nevertheless there is research going on worldwide, strongly supported by patients and often funded by them. (Many of these researchers are critical of PACE and have signed the letter to The Lancet requesting its independent reassessment – see above.) Patients do however object – in the form of letters such as this and other peaceful means – to the squandering of funds on poorly conducted research such as PACE, money which is desperately needed for high quality biomedical research into the condition.

August 2018

Having ME Is Like Being Permanently Encased In A Suit Of Armour

I have, for a long time, struggled to fully get across the impact this illness has on my life


By Jonathan Davis

I have been asked many times what it is like to have myalgic encephalomyelitis (ME) and I have, for a long time, struggled to fully get across the impact this illness has on my life. To say that I am sick, tired and sore is just too vague. Plus, the condition fluctuates and everyone’s experience of ME is different. But, for me, this is how I would describe what it’s like.

Imagine that you are permanently encased head to toe in a suit of armour. The suit is rusted, stiff, unwieldy and incredibly heavy. Simple tasks like getting out of bed require an enormous effort, even lifting your arms to wash your hair is often too much. Walking around is extremely strenuous causing you to rapidly deplete your glycogen reserves. Within moments you have “hit the wall”. Your muscles shake and cramp, you feel sick and dizzy. If you don’t stop, you will almost certainly collapse. Cruelly, you may feel a sense of accomplishment in your efforts only to look behind you to see you have moved from your chair to the door. Anger and resentment build as you recall how you once took moving with ease for granted. But such intense emotions will rob you of what little precious energy you have left, so you catch yourself, and breathe.

On the inside of the suit of armour are thousands of spikes that press and tear into you whenever you move. Everything you do has to be measured and is carried out with trepidation. The spikes are not clean either so you are constantly fighting infection. Your bones, muscles, and joints ache, your temperature fluctuates wildly. The helmet, instead of protecting you, massively intensifies light and sound. Everyday noises such as the stacking of crockery or a door closing are excruciating and frightening. Light disorientates and burns. You retreat into darkness and silence, where you are isolated, scared and lonely. The outside world is now a painful place to be. In time your home will become a prison; a mausoleum, occupied by a living corpse.

The suit has poisoned your body. Eating causes intestinal discomfort leading to multiple, exhausting and painful trips to the toilet. Your brain is also affected. Words are hard to find. You can’t recall the names of people, even those you are close to, places or everyday items. Conversation is as challenging as a finals exam and reading, even simple text, tests your concentration to the limit. Your short-term memory is poor and you forget important information, constantly having to rely on others for help. Those around you become frustrated because you can’t express yourself or your needs, so you withdraw so as not to be a burden. Lack of interaction reduces your resilience; despair and boredom start to overwhelm you. Your confidence is lost in a sea of self-doubt.

Although your body yearns for rest, there is no refuge in sleep. You are haunted by dreams and nightmares. Even past memories of happy times or achievements are a reminder of what the suit has snatched away from you. What you were once so proud of is now torn to shreds, like a spiteful playground bully destroying a fellow pupil’s prize-winning project.

In such discomfort, you plead with others for help, but there is very little to aid your plight. The suit is invisible to all except you, or others who have similar suits. There is no test yet developed that can detect it and nothing has been proven effective in removing it or mitigating its impact. You draw ire and derision from friends, family, colleagues, and peers who have no knowledge of the suit and what it does to you. Opinion-makers and celebrities mock your condition, even supposed experts in suit-related treatment cast aspersions, abandoning you to your fate. How can you be affected so badly by something that doesn’t exist, they cry, it must all be in your mind.

And yet, every suit of armour has a weakness; in this case, it is knowledge and acceptance. Knowledge through increased funding and medical research and acceptance socially through sharing experiences and education.

ME may be an invisible illness but the people who have it are not.

August 2018

GP system updated to reflect ME as neurological

August 01, 2018

The latest update to the electronic health records system used by GPs in England was launched yesterday, listing M.E. as a neurological disorder. Previously it had sat under two unhelpful and inaccurate headings, mental disorder and multisystem disorder.

The system, SMOMED CT, provides a standard mechanism for recording and collating data across populations which is important for public health monitoring, reporting and analysis as well as influencing decision making. The way it classifies illnesses influences how that illness may be perceived by doctors and other medical professions and others.

Until 2015, CFS (the term SNOMED uses for CFS and/or M.E.) had sat under two headings in SNOMED CT: mental disorder and multisystem disorder, which was clearly unhelpful and inaccurate. Following advocacy efforts made by the Countess of Mar and Forward M.E., the mental disorder heading was retired.

After discussion with Lady Mar, Action for M.E. agreed to take on the role of ‘Coordinator, Classification and Terminology Response Group’ on behalf of Forward M.E.

In February, SNOMED decided to retire the multisystem disorder heading too, leaving CFS (plus around 90 other concepts) without a heading.

With detailed technical advice from long-term SNOMED and ICD-11 advocate, Suzy Chapman, our Chief Executive Sonya Chowdhury contacted SNOMED CT in February to ask that:

  • a new parent term should be assigned given the conflict of classification between SNOMED and various versions of the ICD, the system used by the World Health Organisation (WHO)
  • based on the Institute of Medicine report (2015), CFS (and its related term, M.E.) should be assigned under the heading of Disorder of nervous system parent, until research provides an evidence base for a change.

We are pleased to confirm that this request has been granted, and are hugely grateful to Suzy Chapman, without whom this success would not have been achieved. A more detailed and technical description of how SNOMED classifies illnesses, and the changes made, has been published by Suzy.

July 2018

After the debate – Call for Change

Call for Change – Submission to the UK Parliament by the international ME/CFS community

The 21st June 2018 saw a truly amazing debate on ME research and treatment in the UK Parliament. Now with real hope for the first time, patients have got together to clearly lay out their hopes for the future, in a Call for Change to the UK government.

The full Call for Change can be viewed and downloaded here, though signatures are still being added and a cover page being designed. Call for Change document

Signatures are invited from the worldwide ME/CFS community. Signing this petition shows your support of the full content of the Call for Change document. Patient organisations may back this Call for Change by emailing your name, website and logo to

Let’s unite with a powerful voice that cannot be ignored!

Here is a summary of the outcomes we call for:

1. Stop CBT and GET immediately.

This is most urgent and must be done without any further delay in order to stop further harming patients.

2. A full public enquiry on how ME has been and is being handled in this country.

* The PACE trial and the conduct of its authors, the involvement of the Department for Work and Pensions and the insurance industry.

* The misrepresentation of science through the influence of the PACE authors and proponents of the biopsychosocial model of illness in scientific publications, improperly conducted research and peer review including Cochrane reviews, and the role of scientific journals and their editors.

* The misrepresentation of science through control of the media.

* The unethical use of children in dubious clinical trials of dubious and potentially harmful treatments.

* A close look at the phenomenon of so-called Medically Unexplained Symptoms (MUS) infiltrating our National Health Service, and the new Improving Access to Psychological Therapies (IAPT) programme.

* Examination of the so-called “secret” files on ME/CFS, held by the Medical Research Council and the Department for Work and Pensions in the National Archives at Kew.

* The persecution of doctors who have genuinely tried to help their ME patients with a biomedical approach to the illness.

3. Equivalent funding for biomedical research on ME.

This means stopping inappropriate “research” and having the funds diverted to useful research, providing commensurate funding based on disease prevalence and economic burden, and collaborating with existing important players in biomedical research on ME, such as the charity Invest in ME Research which is already setting up a Centre of Excellence at the Norwich Research Park.

4. Medical Education.

The content of medical education on ME should be developed in collaboration with:

* Practicing ME physicians who take a biomedical approach towards ME.

* Medical professionals who have ME, some of whom also have a background in Medical Education.

* NOT Psychiatrists who call themselves CFS specialists.

5. Appropriate and adequate specialist and community services for ME patients, social support and benefits payments.

* Specialist services should be run by physicians taking a biomedical approach to ME, not Psychiatrists or Mental Health providers.

* Appropriate inpatient care when ME patients are admitted to hospital, appropriately designed nursing home placements where required, and adequate support for the severely ill who live at home, such as with self-care, shopping, cooking, cleaning, and in some cases tube feeding.

* Social welfare assessment that is not only fair to ME patients, but avoids exacerbating their illness and worsening their disability. Assessment protocols and their evidence base should be made available for public scrutiny.

6. Appropriate and adequate care and support for children with ME.

This means correct diagnosis and recognition, and equal access to education. The Department of Health and Department of Education should speak to the UK charity Tymes Trust which has extensive experience in, and in-depth knowledge of, the needs of children with ME.

July 2018

You and ME: An Update on Myalgic Encephalomyelitis for Psychologists by Rose Silvester 

Calling it chronic fatigue is a bit like calling a pie “a crust”
Anna, age 16, personal communication, 2018.

Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and models of care for chronic illness. She is engaged with the global ME/CFS community of researchers, clinicians and advocates and has initiated a national carers support network (NZ carers of kids with ME/CFS and related illnessNZcare4ME) as well as a local carers support group.

This article was first published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP).

My son lives behind the closed door of a dark room. He has been there for two and a half years, he is 17, he has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I cannot unlock the door.

Unlike most other people who have this problem, his onset was not abrupt and not obviously triggered by an assault to the immune system, such as by one of the many associated viruses, or by vaccination, or any event that created significant stress for the body. Toward the end of his primary years, I found myself frequently making excuses for him, for why he was very bright but struggled to be on task, why he went from being in the top 10 in the school cross country to being hundreds of metres behind the last kid, why at soccer following the half time sugar hit that revved the other kids up, he was listless and just watched as the ball rolled past. I blamed it on the insomnia, night sweats, and headaches because they were certainly there, and I thought to myself “kids are weird—they grow out of it.”

And he did grow out of it—for a time. He had periods of many months where we thought the difficulties had stopped. By the time he reached high school, however, a small cold would see him confined to bed long after the cold symptoms had gone. There was nothing specifically wrong, no fever, vomiting, rash, or cough. He denied that he was tired or fatigued. Nothing. His batteries were just flat. These episodes began to get more frequent, more severe, and his recovery in between, less complete. During one memorable episode, I took him to the GP. He could hardly walk and had to lean against the wall of the corridor to make it to the office. He slurred his words, he was drowsy—he was clearly a very sick kid. After much shoulder shrugging and head scratching we were off for blood tests. While these revealed minor abnormalities (hypoglycaemia, slightly off thyroid function), a blood test could not possibly reveal the problem. These minor things, however, threw everyone off track. And there we remained for over a year. It was during this year that the door began to slowly close.

Most of the fourth term of year 10 at high school was spent at home. We tried to keep him going. He would get up, get ready for school, but be stopped in his tracks by body aches, headaches, and weakness. He was dizzy and fainted half a dozen times. His heart rate while standing would soar to 140 bpm and stay there. We know now that these early symptoms were the hallmark orthostatic symptoms of postural orthostatic tachycardia that often precede full syndrome ME/CFS. He spent most of the term at home and did gradually recover—enough to have a good summer. Again, we thought “it” whatever “it” was, was going to leave him alone. He was excited to go to school with his mates on the first day of year 11. At Wellington High School, year 11 kids are allowed to go to town at lunch time and he took full advantage of the freedom. He came home happy. That night, sometime while he slept, the door slammed shut. He has not been able to return to school.

Myalgic encephalomyelitis (my*al*gic + en*ceph*a*lo*my*eli*tis) (ME), is commonly referred to as chronic fatigue syndrome (ME/CFS). We eventually achieved this diagnosis, but too late to be aware of the cumulatively damaging effects of the episodes of unwellness that we now know were “crashes.” The need for careful pacing was never discussed. Too late too, to take advantage of the potential that managing his orthostatic symptoms more effectively may have reduced some of the stress his body was under.

The Institute of Medicine (IOM) describes ME/CFS is a serious, chronic disease that affects an estimated 0.5%–1% of people (Institute of Medicine, 2015). There is no known definitive aetiology or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before identification is made. Recovery of pre-illness functioning is rare. Seventy-five percent are unable to return to pre-illness levels of work or study. Many people with ME/CFS are more impaired in their functioning than those with other chronic and disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (Twisk, 2014). Women are more likely than men to be afflicted, and although peak onset is in adulthood, children also commonly get ME/CFS. It is estimated that as many as 90% of people (across all ranges of severity) are not diagnosed (Institute of Medicine 2015).

The cause remains unknown, but currently the most likely contender is that it is a systemic disease, and that in vulnerable (most likely genetically vulnerable) individuals, an assault to the immune system causes an abnormal immune response, which in turn causes an inflammatory reaction that affects the whole body right down to the level of mitochondrial energy production. In particular, it seems that the autonomic nervous system becomes unbalanced, leaving people stuck in a state of sympathetic overdrive—a constant state of fight or flight affecting heart rate and blood pressure (orthostatic regulation), temperature regulation, pupillary reaction, digestion, sensory filtering, emotional regulation, and so on. Pain in joints and/or the generalised ache of the first few days of the flu is usual. Cognitively, the effects can, for some, be devastating. Widespread endocrine abnormalities in many people suggest that the delicate balance of the hypothalamic-pituitary-adrenal axis has wobbled. Not surprisingly, sleep becomes inefficient and unrefreshing. Homeostasis is wrecked. It is exhausting. Post-exertional malaise is a hallmark symptom. It simply means that the window for tolerating any exertion, be it physical, cognitive, or emotional has narrowed. A marked worsening of symptoms occurs in the 12–72 hours following exertion. This worsening, sometimes called a crash, can persist for days, weeks, months, or years. Inter-episode recovery decreases with each crash. For around 25% of people, the window narrows to a point whereby activities of independent living are not possible. They are confined to their houses. Many are bed bound.

The pathophysiology of ME/CFS is very, very complicated. While recent research has identified a range of biomarkers and metabolic abnormalities in people with ME, these tests remain tools of research. Diagnosis is by symptom identification and exclusion of other illnesses that may present in a similar way. Over the last few decades, diagnostic criteria for ME/CFS have been widely debated. In 2015, the National Academy of Medicine published new diagnostic criteria for ME/CFS requiring the presence of: substantial impairment in activity that lasts 6 months or more and is accompanied by fatigue, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance (Institute of Medicine 2015). These criteria are, on the face of it, a massive simplification of a very complex picture in which the likelihood of multiple disease processes exists. Agreement and consistency of definition is, however, welcome.

The label “ME/CFS” has been similarly debated. Clinicians, researchers, and people with ME/CFS have pushed back, particularly against the label of chronic fatigue, arguing that it minimises the breadth and savagery of symptoms. It also has the unfortunate history of the misunderstanding and minimisation that came with derogatory labels such as “yuppie flu.” While the term CFS is rapidly on its way out, ME (for now) remains (grudgingly), and the IOM label of systemic exertional intolerance disease is on its way in (Institute of Medicine, 2015).

ME/CFS has not had an easy history, and it continues to sit uncomfortably. The diagnosis has fallen victim to the kind of stigma and marginalisation that is common when we are faced with things we cannot easily test or measure. The notion that ME/CFS can be formulated as a psychogenic disorder, such as conversion disorder or somatoform disorder has prevailed in both the medical and psychological communities.

Early hypotheses of psychological causation have long since been countered by growing research showing biological correlates of ME/CFS not found in depression or any other psychiatric disorder (Stein, 2005). The prevalence of known psychiatric disorders among patients with ME/CFS is similar to the rates in patients with other chronic, disabling medical conditions, such as rheumatoid arthritis; approximately 30%–40% (Thieme, Turk, & Flor, 2004). The World Health Organization classifies ME/CFS in the International Classification of Diseases, tenth revision as a neurological disorder (ICD 93.3). Little evidence exists for any disorder in this category conforming to a psychogenic formulation (Wilshire & Ward, 2016). Healthcare providers, however, remain sceptical about the physiological—rather than psychological—nature of the illness. “Once diagnosed, patients often complain of receiving hostility from their healthcare provider as well as being subjected to treatment strategies that exacerbate their symptoms” (Institute of Medicine, 2015). Within the ME/CFS community, anecdotes of gas- lighting and exclusion from treatment are the norm. I would suggest, where scepticism or doubt exists for health providers, that these notions are grossly outdated and perhaps “all in their heads.”

Psychology, and particularly cognitive behavioural therapy (CBT), has for some time been positioned in the centre of this discomfort. In recent decades, the officially recommended treatments for chronic fatigue syndrome (ME/CFS) have been graded exercise therapy (GET) and CBT. These treatments are formulated to satisfy the premise that ME/CFS symptoms are precipitated by factors such as trauma, prolonged stress, or personality factors, and are perpetuated by avoidance of activity and aberrant illness beliefs (Wilshire & Ward, 2016). The idea is that graded desensitisation (to the anxiety produced by activity) will help the individual to appreciate that pain and fatigue are not harmful. I recently Googled ME/CFS and CBT—the first entry that came up sums up this position:

…illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled. Their marriages may break up; they may lose their jobs. The human consequences of these illness beliefs, in other words, may be considerable. Joining a sufferers’ support group that will irreversibly confer a label is really the last step on this pathway to disability. (Shorter, 2015)

Based on the assumption that psychological factors both precipitate and perpetuate the disorder, and in an attempt to provide evidence of the efficacy of CBT and GET, White and colleagues undertook a large-scale randomised trial (White, Goldsmith, Johnson, & Potts, 2011). This was colloquially referred to as the PACE trial. Reports published in reputable journals (including The Lancet) concluded that the PACE graded exercise and CBT protocols were moderately effective treatments for ME/CFS, leading to “recovery” in over one-fifth of patients. The trial’s size and subsequent promotion of CBT and GET as a gold standard treatment became hugely influential in the development of treatment guidelines, including the National Institute for Health and Care Excellence (NICE, 2007) and Centre for Disease Control (CDC) guidelines.

Soon after publication, however, there began a clamour of dissent. People with ME/CFS were perplexed, stating that the premise was incorrect and that, in their experience GET and CBT were not only ineffective, but were harmful. In forcing people with ME outside of their safe window of energy consumption, they risked a crash. The result, for many, was catastrophic. There also emerged significant concerns about the methodology of the trial. Sitting at the tip of this rather large iceberg of concerns was that the outcomes and analyses reported did not follow the original published protocol (Wilshire et al., 2018). This was troubling given that the purpose of a trial protocol is to prevent post hoc changes to methodology that may favour the study hypotheses. Also, it was doubtful whether the trial’s conclusions about treatment efficacy were justified by the evidence. David Tuller, a critic and prolific writer on the failures of the PACE trials reported a “bizarre paradox” (Tuller, 2015). The scores that determined whether someone qualified as disabled enough to enter the trial could simultaneously qualify them as “recovered” (by the definition of the outcome measures). A full 13% had “recovered” before the trial started, based on the change in protocol that occurred months after data collection ended (Tuller, 2015).

It is in this context that within a few years, the clamour turned into a furore, and accusations as strong as scientific fraud were levelled against the PACE trial authors by the ME/CFS research community. In 2015, an open letter was written to Richard Horton, Editor of The Lancet, by eminent researchers in the field of ME/CFS, including Ron Davis, Professor of Biochemistry and Genetics at Stanford University (and a current leading light in the ME/CFS research community as well as father to Witney, a young man with very severe ME/CFS). The letter raised concerns about “serious ethical breaches in the study” and stated that the flaws inherent in the study “have no place in published research.” This was strongly worded criticism, and went on to say the shortcomings were “of particular concern because of its significant impact on government policy, public health practice, clinical care, and decisions about disability insurance and other social benefits.” The Lancet was urged to “seek an independent re-analysis of the individual-level PACE trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design” (Davis et al., 2015).

While voluminous discussion and reanalysis has subsequently been published, reanalysis was hampered by the refusal of the original authors and PACE trial committee to release the original dataset for scrutiny. These data were, however, recently obtained as part of a Freedom of Information application, and made available to the public. In March this year, a new player walked onto this complex stage with the publication of a reanalysis of the PACE trial using this previously unavailable original data (Wilshire et al., 2018). Imagine my surprise when the author turned out to be Dr Carolyn Wilshire, from the School of Psychology at Victoria University. We talked about the big picture and her findings over coffee in Aro Street.

Carolyn Wilshire’s thorough and hopefully definitive reanalysis of the PACE trial concluded that, despite the power of the study afforded by the large sample size, the results were “modest, short- lived changes in self-report behaviour unaccompanied by objectively measurable changes.” She further commented that “it seems unlikely that further research based on these treatments will yield more favourable results” and “the time has come to look elsewhere for effective treatments” (Wilshire et al., 2018). Even the use of CBT for basic distress reduction has been called into question with the results of repeated patient surveys indicating that for many, CBT is harmful (Laws, 2017). Last year, in response to these contradictions, the CDC quietly changed its ME/CFS treatment guideline, removing any reference to GET and CBT, and clearly stating the likely harm (CDC, 2017). Similarly the NICE guidelines group announced a revision and specifically cited conflicts in the evidence for GET and CBT as a major basis for review (NICE, 2017). Current major National Institute of Health (the major US health research funder) research initiatives are focused on the pathophysiology of ME/CFS. The hope of the ME/CFS community is that these initiatives will play a key role in generating new treatment paradigms (Wilshire et al., 2018).

But the research initiatives to which Carolyn Wilshire refers are, in the scheme of things, in their infancy and comparatively poorly funded. Crowd funding and private donations for research remain common. For example, Ron Davis’ research has this year been funded by patients, and the Pineapple Fund, a fund provided by a private Bitcoin investor. Investigations into ME/CFS have lagged so far behind other disorders that some of the figures would be comical if they were not so tragic. Jorgen Jelstad (2016) quantified this inequity, and noted that although the measures of quality of life of people with ME fall below that of people with multiple sclerosis, more is spent on research into MS every year than has ever been spent on ME/CFS. Research into HIV/AIDS in the US attracts around 600 times the funding, although HIV affects similar numbers of people, with better outcomes. Male pattern baldness gets six times more federal funding than ME/CFS in the US (Jelstad, 2016). It is not so strange then, that it is taking time to find any credible answers to the ME/CFS enigma. Nancy Klimas, Professor of Microbiology and Immunology and one of the more prominent ME/CFS specialist clinicians (there are only a handful) was quoted in the New York times in 2009:

My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. (Klimas, 2009)

This lack of research is a barometer of a broader issue of the value that the health sector places on people with ME. Let me give you an example that is very close to home. A recent meeting for a very elderly relative who was moving to palliative care was attended by the geriatrician, rest home manager, charge nurse, dietician, social worker, and psychologist. While I am loath to sound petulant, my son, who is so very unwell, is seen by one physician around every 4 months. This physician has worked hard to consult and refer where possible. The waiting and time to get answers has however, been interminable. Even for some simple and commonly used specialist consultations it has been years. This is such a long time in a young person’s life at a critical developmental stage. Our health system is not designed to deal with complex problems involving multiple organ systems. If I had a magic wand I would conjure up specialist integrated teams of clinicians (physicians, cardiologists, endocrinologists, immunologists, neurologists, physiotherapists, occupational therapists, psychologists, and social workers) who would work together to optimise the management and quality of life for all people with ME.

So where does this leave psychology in supporting this population? Did you, like me, see the baby sailing through the air with the PACE trial bathwater? The downstream effect of the PACE study is that in all the fuss the real value of psychology for people with ME has been neglected and remains ambiguous. For myself, I know that there is a lot to be gained from acceptance of what-ifs of the past, the grief of the present, and the uncertainty of the future. De-fusing from the guilt and fear demons that come flapping in the night. It has become important to be mindful of the moment and to connect with what is present, here and now, in all its limitations as well as possibilities—and to find value in this. And…to remain open to a new identity as it emerges: advocate, activist, educator, supporter, and friend to the community of people with ME and their carers. The support my son needs, if he were well enough, would be very similar and would also include finding the window of energy tolerance, establishing a routine around this and developing values and an identity within his limitations. You may notice that none of this involves an assumption that if he just pushed a little harder he would be ok, or a focus on aberrant illness beliefs. We went there. It failed.

Late last year the face of ME/CFS changed. Completely. Unrest, a documentary by Jennifer Brea was released and subsequently avalanched with awards. Jenn (yeah it feels like she’s been in my living room), a person with ME wrote and directed Unrest, largely from her bed. It is brave, informative and heart-breaking. She collaborated with families, researchers and clinicians— including Ron Davis and his family—and provided a focus for people with ME and their advocates around the world. Unrest has been shown at thousands of public education events and is now being used as part of the curriculum at universities such as Harvard Medical School. From the momentum that Unrest unleashed, MEAction was born. This group works tirelessly to promote Unrest and to galvanise a community of activists. A clear direction for advocacy and education has now been illuminated. Please watch Unrest. It is on Netflix and Itunes.

So…what of my son? I wrote a paragraph on how he is now, then decided that he would not want you to know the details. He remains severely disabled. The door to the room that confines him is firmly shut and has a thousand locks on it. In our hands there are a thousand keys. Every 4 months or so, when we meet with his very caring physician, we get to choose whether we keep wriggling the current key in the current lock, or try a different combination. In the vacuum of knowledge about the real mechanisms that drive ME/CFS there is little to guide our choice. And so, we wait.

Thanks to my friends (NZcare4ME) who are along for the ride, and helped with references.


Center for Disease Control. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome. Retrieved from

Davis, R., Jonathan, C. W., Jason, L., Levin, B., Racaniello, V. R., & Reingold, A. (2015). An open letter to Dr Richard Horton and The Lancet. Virology Blog. Retrieved from open-letter-to-dr-richard-horton-and-the-lancet/

Institute of Medicine. (2015) Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.

Jelstad, J. (2016). The male pattern baldness disease? Chronic fatigue syndrome’s chronic lack of research funding. Retrieved from syndrome-mecfs-research/

Klimas, N. (2009). A virus linked to chronic fatigue syndrome. New York Times Laws, K. R. (2017). Distress signals: Does cognitive behavioural therapy reduce or increase distress in chronic fatigue syndrome/myalgic encephalomyelitis? Journal of Health Psychology, 22(9), 1177–1180. National Institute for Health and Clinical Excellence. (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. Retrieved from

National Institute for Health and Clinical Excellence. (2017). Surveillance report. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53. Retrieved from

Shorter, E. (2015) Chronic fatigue in the context of the history of medicine. Retrieved from

Stein, E. (2005). Chronic fatigue syndrome. Psychiatric Treatment Guidelines. Retrieved from

Thieme, K., Turk, D. C., & Flor, H. (2004). Comorbid depression and anxiety in fibromyalgia syndrome: relationship to somatic and psychosocial variables. Psychosomatic Medicine, 66, 837–844.

Tuller, D. (2015). Trial by error: The troubling case of the PACE chronic fatigue syndrome study. Retrieved from

White, P. D., Goldsmith, K. A., Johnson, A. L., & Potts, L. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet. 377(9768), 823–36.

Wilshire, C. R., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., & Levin, B. (2018). Re-thinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC, 6, 6. Retrieved from

Wilshire, C. E., & Ward, T. (2016). Psychogenic explanations of physical illness: time to examine the evidence. Perspectives on Psychological Science, 11(5), 606.

June 2018

Trial By Error: An Open Letter to The Lancet, Two Years On

19 June 2018

By David Tuller, DrPH

This morning, Professor Racaniello sent the following e-mail to Richard Horton, editor of The Lancet. The subject heading: “Another open letter about the PACE trial.” He cc’d the three lead PACE investigators and the public relations office at Queen Mary University of London. Virology Blog’s previous open letter to The Lancet about the PACE trial was sent and posted in February, 2016.


Dear Dr. Horton:

In February, 2011, The Lancet published an article called “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomized trial.” [1] The article reported that two rehabilitative approaches, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), were effective and safe treatments for chronic fatigue syndrome, also often referred to as myalgic encephalomyelitis, ME/CFS and CFS/ME. The PACE study received international attention and has had widespread influence on research, treatments prescribed for patients, and attitudes toward the illness of both the medical community and the public at large.

At the press conference promoting the Lancet paper, one of the lead investigators stated that twice as many participants in the treatment groups got “back to normal,” compared to those in the other study arms. [2] An accompanying Lancet commentary similarly claimed that these “back-to-normal” participants had met a “strict criterion for recovery.” [3]

In fact, we now know that 13 % of the participants qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures, self-reported physical function–even as they were simultaneously classified as disabled enough on the same measure to enter the study. [4] This anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claims that patients “recovered” or got “back to normal.” The overlap in entry and outcome criteria is only one of the trial’s unacceptable methodological lapses.

The treatments investigated in the PACE trial were based on the hypothesis that ME/CFS patients harbor “unhelpful” convictions about having an ongoing organic disease and that the perpetuation of their devastating symptoms is the result of deconditioning. In contrast, a 2015 review from the U.S. Institute of Medicine (now the National Academy of Medicine), reported that ME/CFS is a complex, multi-system illness characterized by neurological, immunological, autonomic, and energy metabolism dysfunctions. [5] The cardinal symptom, noted the review, is a systemic intolerance to exertion; if patients exceed their available energy resources, they can suffer serious and prolonged relapses.

After The Lancet published the first PACE results, ME/CFS patients and advocates immediately pointed out major flaws. But few people outside the field took notice until the science site Virology Blog published a 15,000-word investigation by David Tuller, a public health researcher and journalist at the University of California, Berkeley, in October of 2015. [6] Subsequently, in February of 2016, many of us signed an open letter to The Lancet requesting an independent investigation of the study. [7]

Since then, much has happened:

* In August of 2016, a U.K. tribunal, citing that open letter, ordered Queen Mary University of London to release raw trial data from the PACE study, sought by Australian patient Alem Matthees in a freedom of information request so that he and others could calculate the outcomes promised in the PACE trial protocol. [8]

* Analyses of these data [9], including a study published in BMC Psychology in March [10], have confirmed what has long been argued: The PACE investigators engaged in such extensive outcome-switching that they were able to report dramatically better findings than the null or minimal results obtained under the original measures they promised in their protocol.

* The U.S. Agency for Healthcare Research and Quality (AHRQ) downgraded its recommendations for CBT and GET. [11] This downgrading occurred after the agency removed from its analysis the PACE trial and other studies using overly broad selection criteria that generated cohorts of patients with a grab-bag of fatiguing conditions. And while the PACE trial claimed that GET is safe, AHRQ found that the therapy was associated with more adverse events.

* Last summer, the U.S. Centers for Disease Control abandoned the recommendations that ME/CFS patients be treated with CBT and GET [12], having already removed references to the PACE trial. A couple of months later, the U.K. National Institute for Health and Care Excellence announced that it would pursue a full update of its 2007 guidance, citing concerns about the reliability and validity of the evidence base. [13]

* Earlier this year, a report from the Dutch Health Council recommended that GET should not be used in the Netherlands as a treatment for the illness. [14]

* In March, a group of leading American clinicians who specialize in ME/CFS unanimously agreed that the two PACE treatments are inappropriate and possibly harmful for patients with the illness and should therefore not be prescribed. [15]

Given the worldwide impact of PACE, we urge The Lancet to do what the open letter two years ago requested: commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design. The reviewers should be from outside the domains of psychiatry and psychological medicine and predominantly from outside the U.K. They should also be completely independent of, and have no conflicts of interests involving, the PACE investigators and the funders of the trial.

Thank you for your quick attention to this matter.


Dharam V. Ablashi, DVM, MS, Dip Bact
Scientific Director, HHV-6 Foundation
Santa Barbara, California, USA
Former Senior Investigator
National Cancer Institute
National Institutes of Health
Bethesda, Maryland, USA

Michael Allen, PhD
Clinical Psychologist (retired)
San Francisco, California, USA

Christopher Armstrong, PhD
Bio21 Molecular Science & Biotechnology Institute
Department of Biochemistry and Molecular Biology
University of Melbourne
Melbourne, Victoria, Australia

James N. Baraniuk, MD
Professor of Medicine
Georgetown University
Washington, DC, USA

Lisa F. Barcellos, PhD
Professor of Epidemiology
School of Public Health
California Institute for Quantitative Biosciences
University of California, Berkeley
Berkeley, California, USA

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA

Molly Brown, PhD
Assistant Professor
Department of Psychology
DePaul University
Chicago, Illinois, USA

Robin Callender Smith, PhD
Professor of Media Law
Centre for Commercial Law Studies
Queen Mary University of London
Barrister and Information Rights Judge
London, England, UK

John Chia, MD
Clinician and Researcher
EV Med Research
Lomita, California, USA

Lily Chu, MD, MSHS
Independent Researcher
Burlingame, California, USA

Joan Crawford, CPsychol, CEng, CSci, MA, MSc
Chartered Counselling Psychologist
Chronic Pain Management Service
St Helens Hospital
St Helens, England, UK

Janet L Dafoe, PhD
Child Psychologist in Private Practice
Palo Alto, California, USA

Todd E. Davenport, PT, DPT, MPH, OCS
Professor & Program Director
Department of Physical Therapy
Thomas J. Long School of Pharmacy & Health Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA

Lucy Dechene, PhD
Professor of Mathematics (retired)
Fitchburg State University
Fitchburg, Massachusetts, USA

Simon Duffy, PhD, FRSA
Centre for Welfare Reform
Sheffield, England, UK

Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London
London, England, UK

Valerie Eliot Smith
Barrister and Visiting Scholar
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK

Derek Enlander, MD
Clinician in Private practice
New York, New York, USA

Meredyth Evans, PhD
Clinical Psychologist and Researcher
Chicago, Illinois, USA

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA

Keith Geraghty, MPH, PhD
Honorary Research Fellow
Division of Population Health, Health Services Research & Primary Care
School of Health Sciences
University of Manchester
Manchester, England, UK

Simin Ghatineh, MSc, PhD
London, England, UK

Ian Gibson, PhD
Former Member of Parliament for Norwich North
Former Dean, School of Biological Sciences
University of East Anglia
Honorary Senior Lecturer and Associate Tutor
Norwich Medical School
University of East Anglia
Norwich, England, UK

Mike Godwin, JD
Attorney and Author
Distinguished Senior Fellow
R Street Institute
Washington, DC, USA

Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA

Alan Gurwitt, MD
Clinician in Private Practice (retired)
Associate Clinical Professor, Yale Child Study Center (retired)
New Haven, Connecticut, USA
Associate Clinical Professor, University of Connecticut Dept of Psychiatry (retired)
Storrs, Connecticut, USA
Lecturer, Harvard Medical School (retired)
Boston, Massachusetts, USA

Geoffrey Hallmann, LLB, DipLegPrac
Former Lawyer (Disability and Compensation)
Lismore, New South Wales, Australia

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA

Malcolm Hooper, PhD, BPharm, MRIC, CChem
Emeritus Professor of Medicinal Chemistry
University of Sunderland
Tyne and Wear, England, UK

Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois, USA

Michael W. Kahn, MD
Assistant Professor of Psychiatry
Harvard Medical School
Boston, Massachusetts, USA

Jon D. Kaiser, MD
Clinical Faculty
Department of Medicine
University of California, San Francisco
San Francisco, California, USA

David L. Kaufman, MD
Center for Complex Diseases
Mountain View, California
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Betsy Keller, PhD, FACSM
Professor, Department of Exercise & Sport Sciences
Ithaca College
Ithaca, New York, USA

Nancy Klimas MD
Director, Institute for Neuro-Immune Medicine
Nova Southeastern University
Director, Miami VA Medical Center GWI and CFS/ME Program
Miami, Florida, USA

Andreas M. Kogelnik, MD, PhD
Open Medicine Institute
Mountain View, California, USA

Richard Kwiatek, MBBS, FRACP
Rheumatologist and Independent Researcher
Northern Adelaide Local Health Network
Adelaide, South Australia, Australia

Eliana M. Lacerda, MD, MSc, PhD
Clinical Assistant Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Charles W. Lapp, MD
Medical Director
Hunter-Hopkins Center
Charlotte, North Carolina, USA

Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA

Medical Director
CFS Discovery
Melbourne, Victoria, Australia

Alan R. Light, PhD
Professor of Anesthesiology
Professor of Neurobiology and Anatomy
University of Utah
Salt Lake City, Utah, USA

Vincent C. Lombardi, PhD
Director of Research
Nevada Center for Biomedical Research
Reno, Nevada, USA

Alex Lubet, PhD
Professor of Music
Head, Interdisciplinary Graduate Group in Disability Studies
Affiliate Faculty, Center for Bioethics
Affiliate Faculty, Center for Cognitive Sciences
University of Minnesota
Minneapolis, Minnesota, USA

Steven Lubet, JD
Williams Memorial Professor of Law
Northwestern University Pritzker School of Law
Chicago, Illinois, USA

David F. Marks, PhD
Journal of Health Psychology
& Health Psychology Open
London, England, UK

Sonya Marshall-Gradisnik, PhD
Professor of Immunology
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Marlon Maus, MD, DrPH, FACS
DrPH Program Director
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Neil R McGregor. BDS, MDSc, PhD
Clinical Associate Professor
Faculty of Medicine, Dentistry and Health Sciences
Bio21 Molecular Science & Biotechnology Institute
University of Melbourne.
Melbourne, Victoria, Australia

Patrick E. McKnight, PhD
Professor of Psychology
George Mason University
Fairfax, Virginia, USA

Marvin S. Medow, PhD
Professor of Pediatrics and Physiology
Chairman, New York Medical College IRB
Associate Director of The Center for Hypotension
New York Medical College
Hawthorne, New York, USA

Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California, USA
Director, Palo Alto Medical Foundation Toxoplasma Serology Laboratory
National Reference Center for the Study and Diagnosisof Toxoplasmosis
Palo Alto, California, USA

Sarah Myhill, MBBS
Clinician in Private Practice
Knighton, Wales, UK

Luis Nacul, MD, PhD
Clinical Associate Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Heidi Nicholl, PhD
Chief Executive Officer
Emerge Australia
Melbourne, Victoria, Australia

James M. Oleske, MD, MPH
François-Xavier Bagnoud Professor of Pediatrics
Senator of RBHS Research Centers, Bureaus, and Institutes
Director of Division of Pediatrics Allergy, Immunology & Infectious Diseases
Department of Pediatrics
Rutgers New Jersey Medical School
Newark, New Jersey, USA

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Nigel Paneth, MD, MPH
University Distinguished Professor
Depts of Epidemiology & Biostatistics and Pediatrics & Human Development
College of Human Medicine
Michigan State University
East Lansing, Michigan, USA

Richard Podell, MD, MPH
Clinical Professor, Department of Family Medicine
Rutgers-Robert Wood Johnson Medical School
New Brunswick, New Jersey, USA

Nicole Porter, PhD
Psychologist in Private Practice
Rolling Ground, Wisconsin, USA

Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA

Arthur L. Reingold, MD
Professor of Epidemiology
University of California, Berkeley
Berkeley, California, USA

Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA

Michael Scott, PhD
Psychological Therapies Unit
Liverpool, England, UK

Charles Shepherd, MB BS
Honorary Medical Adviser to the ME Association
Buckingham, England, UK

Christopher R. Snell, PhD
Scientific Director
WorkWell Foundation
Ripon, California, USA

Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH
Durham, England, UK

Donald R. Staines, MBBS, MPH, FAFPHM, FAFOEM
Clinical Professor
Menzies Health Institute Queensland
National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Eleanor Stein, MD, FRCP(C)
Psychiatrist in Private Practice
Assistant Clinical Professor
University of Calgary
Calgary, Alberta, Canada

Staci Stevens, MA
Founder, Exercise Physiologist
Workwell Foundation
Ripon, California, USA

Julian Stewart, MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chairman for Patient Oriented Research
Director, Center for Hypotension
New York Medical College
Hawthorne, New York, USA

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

John Swartzberg, MD
Clinical Professor Emeritus
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Ronald G. Tompkins, MD, ScD
Summer M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

Barbara True, MD, FRACP
Private Practice
Wakefield Rheumatology
Adelaide, South Australia, Australia

Samuel Tucker, MD
Former Assistant Clinical Professor of Psychiatry
University of California, San Francisco
San Francisco, California, USA

David Tuller, DrPH
Lecturer in Public Health and Journalism
University of California, Berkeley
Berkeley, California, USA

Rosemary A. Underhill, MBBS, MRCOG, FRCSE
Physician, Independent Researcher
Palm Coast, Florida, USA

Derya Unutmaz, MD
The Jackson Laboratory for Genomic Medicine
Farmington, Connecticut, USA

AM Uyttersprot, MD
AZ Jan Portaels
Vilvoorde, Belgium

Rosamund Vallings, MNZM, MBBS
General Practitioner
Auckland, New Zealand

Linda van Campen, MD
Stichting Cardiozorg
Hoofddorp, The Netherlands

Mark VanNess, PhD
Professor of Health, Exercise & Sports Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Mark Vink, MD
Family Physician
Soerabaja Research Center
Amsterdam, The Netherlands

Frans Visser, MD
Stichting Cardiozorg
Hoofddorp, The Netherlands

Tony Ward, MA (Hons), PhD, DipClinPsyc
Registered Clinical Psychologist
Professor of Clinical Psychology
School of Psychology
Victoria University of Wellington
Wellington, New Zealand
Adjunct Professor, School of Psychology
University of Birmingham
Birmingham, England, UK
Adjunct Professor, School of Psychology
University of Kent
Canterbury, England, UK

William Weir, FRCP
Infectious Disease Consultant
London, England, UK

John Whiting, MD
Specialist Physician in Private Practice
Brisbane, Queensland, Australia

Sadie Whittaker, PhD
Chief Scientific Officer
Solve ME/CFS Initiative
Los Angeles, California, USA

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

Marcie Zinn, PhD
Cognitive Neuroscience and Data Science
Center for Community Research
DePaul University
Chicago, Illinois, USA
Associate Editor, BMC Journal of Translational Medicine


[1] White PD et al. 2011. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 377: 823–836

[2] Boseley S. 2011. Study finds therapy and exercise best for ME. The Guardian, 18 Feb. Available at: (accessed on April 23, 2018)

[3] Bleijenberg G, Knoop H. 2011. Chronic fatigue syndrome: where to PACE from here? The Lancet, 377: 786-788

[4] Wilshire C et al. 2016. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior, 14 Dec. Available at: (accessed on April 23, 2018)

[5] U.S. Institute of Medicine (now National Academy of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. The National Academies: Washington, DC, USA.

[6] Tuller D. 2015. Trial by error: the troubling case of the PACE chronic fatigue syndrome trial. VirologyBlog, 21-23 Oct. Available at: (accessed on April 23, 2018)

[7] Racaniello V. 2016. An open letter to The Lancet, again. VirologyBlog, 10 Feb. Available at: (accessed on April 23, 2018)

[8] Rehmeyer J. 2016. Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back. STAT, 21 Sept. Available at: (accessed on April 23, 2018)

[9] Geraghty K. 2017. ‘PACE-Gate’: when clinical trial evidence meets open data access. Journal of Health Psychology, 22: 1106-1112

[10] Wilshire C et al. 2018. Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychology; published online 22 March. Available at: (accessed on April 23, 2018)

[11] Smith M et al. 2016. Diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome; addendum. U.S. Agency for Healthcare Research and Quality. July. Available at: (accessed on April 23, 2018)

[12] Rehmeyer J, Tuller D. 2017. Why did it take the CDC so long to reverse course on debunked treatments for chronic fatigue syndrome? STAT, 25 Sept. Available at: (accessed on April 23, 2018)

[13] Whipple T. 2017. Mutiny by ME sufferers forces a climbdown on exercise treatment. The Times, 25 Sept.

[14] Health Council of the Netherlands. 2018. More scientific research on ME/CFS is needed to serve patients better. 19 March. Available at: (accessed on April 23, 2018)

[15] Tucker M. 2018. Much can be done to ease ‘chronic fatigue syndrome’ symptoms. Medscape, 12 March. Available at: (accessed on April 23, 2018)

(Many thanks to Mary Dimmock for helping to contact the signatories.)

June 2018

ME Association: The 2018 Invest in ME Research Conference Report – Dr Charles Shepherd

The 2018 Invest in ME Research Conference Report – Dr Charles Shepherd | 14 June 2018

Dr Charles Shepherd provides a summary report of the 13th Invest in ME Research Conference that took place in London on 1st June –

“The conference again took place at One Great George Street – an impressive Edwardian building, with equally impressive conference facilities, that sits opposite St James’s Park in London.

“As usual, the audience consisted of people with ME/CFS, carers, charity representatives, health professionals and researchers, from the UK and overseas. The conference was chaired by Dr Ian Gibson with his usual wit and enthusiasm.

“Overall, this was an interesting and enjoyable meeting that covered a number of important overseas research initiatives, as well as some clinical presentations that are more relevant to the here and now situation facing people with ME/CFS.

“Thank you to everyone who was involved in the organisation of the conference.”

To read and download Dr Shepherd’s report –

To order the DVDs from Invest in ME of all the conference talks, go to –

June 2018

What Doctors Don’t Tell You: ME: the cure that went away

Bryan Hubbard

June 2018

Chronic fatigue and ME could be dramatically improved with exercise and therapy, a landmark study discovered. But it was bad science, and the cure was never there.

Controversy has always dogged chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), the mysterious condition that leaves a patient tired all the time and exhausted from the slightest exertion. The minority of doctors who even believed their patient had an actual physical problem—as opposed to the rest who suspected it was more to do with mind than matter—were perplexed. Then, seven years ago, medicine thought they’d finally figured out how to treat it: patients could get better by combining exercise and cognitive behavioral therapy (CBT), the ‘talking cure.’

It was as if a light had been switched on in a darkened room, and it all came from one 2011 study, called the PACE trial, which concluded that the two approaches dramatically improved the sufferers’ fatigue—and around 22 percent went on to achieve a full recovery, the researchers claimed in a press conference. 1

But it’s all unraveling. Another research team has looked at the raw data that underpinned the PACE study and found that the therapies had “no long-term benefits at all.” The 60 percent improvement reported by the PACE researchers was reduced to just 20 percent in the reanalysis, and the 22 percent who had experienced a full recovery evaporated to just 8 percent. 2

To make matters worse, the data had to be crow-barred from the PACE research team. Freedom of information requests had been ignored, and it took two tribunals to get the researchers—who had recruited a $285,000 legal team to defend them—to conform with the request.

In a separate move, WDDTY columnist Dr Sarah Myhill is calling on the General Medical Council (GMC), which regulates the conduct of doctors in the UK, to mount an investigation. She is accusing the PACE researchers of scientific fraud and breaching ‘good medical practice.’


Looking at the raw data of the PACE study, researchers from the University of Wellington in New Zealand discovered that almost all the benefits of graded exercise—where the intensity and duration of activity slowly increase—and CBT disappear when the definition of ‘patient recovery’ is adhered to throughout the duration of the trial and when assessing patients’ outcomes afterwards.

The PACE researchers established what they meant by patient ‘improvement’ and ‘recovery’—which included established thresholds that were statistically measurable—before the study began. However, once the study was underway, they weakened their own protocols dramatically, and a patient would be considered to have ‘recovered’ even when their symptoms had worsened during the trial. The bar for good physical function was lowered so far that even an 80-year-old would have passed, other researchers noted.

Ultimately, the assessment of whether a participant had recovered was determined entirely by the patient—and this was after they had been shown glowing testimonials about the therapies they were getting halfway through the study.

When the original protocols for recovery were reapplied—along with other everyday measures such as returning to work—all the benefits announced by the PACE researchers disappeared. Rates of recovery were “consistently low,” the researchers said, and were hardly better than those being achieved by standard treatment. As lead researcher Carolyn Wilshere put it, the PACE researchers had “moved the goalposts.”

Legal pace

In Dr Myhill’s call to the GMC to investigate the PACE researchers, she is claiming that they have committed ‘scientific fraud.’ In a letter to Sir Terence Stephenson, GMC chairman, she cites three definitions laid out by the UK Fraud Act of 2006—fraud by false representation, fraud by failing to disclose information and fraud by abuse of position—which she wants the GMC to investigate.

She also argues that CFS/ME patients have been harmed by the therapies promoted by the PACE researchers, and she is urging them to also write to the GMC. “The PACE trial has effectively determined CFS/ME as a psychological condition. As a result, patients who suffer what is, in fact, a serious and debilitating physical condition have been subject to therapies which at best are ineffective and at worse exacerbate the condition,” she writes.

Keeping pace

Within months of the PACE results being published, doctors had quickly embraced the dual approach. In the UK, the National Institute for Health and Care Excellence (NICE) established it as the standard treatment, and, more bizarrely, the government’s Department for Work and Pensions (DWP) was also recommending it. But the DWP wasn’t an innocent bystander: it was shelling out millions in benefits to the country’s 250,000 ME sufferers, and it also happened to have funded the PACE trial to the tune of about $7 million. In the US, the Centers for Disease Control and Prevention (CDC), which had worked closely with two of the PACE researchers, Peter White from Queen Mary University in London and Michael Sharpe from Oxford University, also recommended the therapy as the way forward.

The PACE results had pleased both camps in medicine: those that believed that ME was ‘all in the head’ and others who suspected there had to be a viral cause. The PACE researchers were acolytes of psychiatrist Simon Wessely at King’s College London, who squared the circle with his hypothesis that a virus or some organic trigger may have kick-started the problem, but it was prolonged by the morbid thoughts of the sufferer. “The symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviors,” he said. 3

While doctors celebrated, the analysis just wasn’t ringing true for many sufferers, who couldn’t believe that either approach was of much use. In fact, whenever they exercised, they collapsed with exhaustion immediately afterward, and were often confined to bed, as ME sufferer Sally Burch related after she had been advised by her doctor to take three brisk walks a day. “Those short walks were causing me to get out of breath, and to feel light-headed and dizzy. As the days went by, I found I was able to walk shorter and shorter distances before I ended up in a heap on the ground, trying to make the world stay still. Something was very wrong.” 4

Pace of change

Other sufferers thought there was something very wrong with the findings of the PACE trial, too. CFS sufferer Alem Matthees in Australia put in the first freedom of information request to see the underlying data, and he was soon joined by six scientists from Stanford University, who demanded a full independent investigation.

Even though the raw data was being kept under wraps, other researchers were able to spot anomalies. David Tuller at the University of California, Berkeley, discovered that 13 percent of the 641 CFS/ME sufferers recruited into the original trial had ‘recovered’ even before the trial had started, at least according to the very loose definition of ‘recovery’ the researchers were using.

Stung by the mounting criticism, the PACE researchers claimed that their critics were “young men, borderline sociopaths or psychopathic”—hardly a fitting description of scientists from Stanford University—before claiming they had been threatened and harassed, which was later found to be untrue.

Finally, they issued a new analysis of their original data, in which they concluded that the participants who hadn’t improved were simply afraid of exercise. 5

All of this puts our understanding about CFS/ME—what it is, what causes it and how it can be treated—back to square one. It’s clearly not ‘all in the mind’—or ‘yuppie flu,’ as it was once disparagingly described—and this acceptance is at least allowing new theories about what it might be to flourish.


1              Lancet, 2011; 377: 823-36

2              BMC Psychol, 2018; 6: 6

3              Gen Hosp Psychiatry, 1997; 19: 185-99


5              Lancet Psychiatry, 2015; 2: 141-52

May 2018

ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP | 09 May 2018

An early day motion has been launched by Carol Monaghan MP, and she needs your help in asking other MPs to sign the motion increasing the chance it will lead to an actual debate in parliament.

What is an early day motion?

Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to EDMs very few are debated. However, many attract a great deal of public interest and media coverage.

EDMs are used to put on record the views of individual MPs or to draw attention to specific events or campaigns. Topics covered by EDMs vary widely. By attracting the signatures of other MPs, they can be used to demonstrate the level of parliamentary support for a particular cause or point of view.

What is this EDM all about?

The new EDM draws attention to ME Awareness Week and it is hoped that it will attract the signatures from those MPs who have an interest in M.E. or whose constituents have raised it as an issue with them.

Early day motion 1247


Session: 2017-19

Date tabled: 08.05.2018

Primary sponsor: Monaghan, Carol

Sponsors: Black, Mhairi ,Gibson, Patricia, Bardell, Hannah, Sheppard, Tommy, Brock, Deidre

“That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018, which aims to aims to highlight the impact this invisible illness has on 250,000 people across the UK; recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind; acknowledges the detrimental effect of the PACE trials and its results, and the work which is being done to reverse this; and encourages people to go blue for ME across the week, to further bring this illness out of the shadows and into the spotlight.”

The idea is that the more signatures this EDM attracts the greater the chance of an actual debate taking place in parliament on particular issues relating to M.E. Such issues are likely to be:

Medical Education

Need for an Early and Accurate Diagnosis

NICE guideline review

The PACE trial

NHS services postcode lottery

Problems relating to children (child care facilities)

Severe ME (lack of domiciliary services and specialised units and difficulties accessing social care)

DWP benefits

Biomedical research

Write to your MP

The ME Association, #MEAction and other charities have been working together to provide a comprehensive briefing document for those MPs who are interested, and we hope that with your help we can persuade more to sign the EDM and express their interest in a further debate.

So, please write or email your MP and ask them to support this EDM explaining why, in your own words, these issues are so important. You can find your MP’s details by visiting the parliament website and entering their name or your postcode.

Your letter or email need not be long or involved. This template might help, but feel free to personalise. Some people feel that a written (even typed) letter sent in the post achieves a better result, but choose whatever means is easiest for you.

Dear (Insert MP name here),

I am writing to ask that you sign EDM 1247, in support of ME Awareness Week.

As your constituent, this issue is very important to me, and I would be grateful if you could lend your support to this EDM.

(Insert personal message)

Kind regards,

(Insert constituent name)

(Make sure to include full name and address when signing off, i.e:

Joe Bloggs

123 House Avenue


X12 Y34)

May 2018

Pharmacological activation of AMPK [AMP-activated protein kinase] and glucose uptake in cultured human skeletal muscle cells from patients with ME/CFS


Audrey E Brown, Beth Dibnah, Emily Fisher, Julia L Newton and Mark Walker


Institute of Cellular Medicine, Newcastle University; Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK


Background: Skeletal muscle fatigue and post-exertional malaise are key symptoms of Myalgic Encephalomyelitis (ME/CFS). We have previously shown that AMPK activation and glucose uptake are impaired in primary human skeletal muscle cell cultures derived from patients with ME/CFS in response to electrical pulse stimulation, a method which induces contraction of muscle cells in vitro. The aim of this study was to assess if AMPK could be activated pharmacologically in ME/CFS.

Methods: Primary skeletal muscle cell cultures from patients with ME/CFS and healthy controls were treated with either metformin or 991. AMPK activation was assessed by Western blot and glucose uptake measured.

Results: Both metformin and 991 treatment significantly increased AMPK activation and glucose uptake in muscle cell cultures from both controls and ME/CFS. Cellular ATP content was unaffected by treatment although ATP content was significantly decreased in ME/CFS compared to controls.

Conclusions: Pharmacological activation of AMPK can improve glucose uptake in muscle cell cultures from patients with ME/CFS. This suggests that the failure of electrical pulse stimulation to activate AMPK in these muscle cultures is due to a defect proximal to AMPK. Further work is required to delineate the defect and determine whether pharmacological activation of AMPK improves muscle function in patients with ME/CFS.


Brown et al, Bioscience Reports, 2018 Apr 13; Epub ahead of print


The work was funded by ME Research UK and supported by the NIHR Newcastle Clinical Research Facility.

Comment by ME Research UK

Abnormal muscle fatigue is one of the most common symptoms reported by people with ME/CFS, and can occur even after periods of only mild exercise.

Since 2006, ME Research UK has provided pilot funding for a number of projects at Newcastle University exploring the mechanisms underlying this symptom, and one key study took a close look at muscle cell function using biopsies obtained from ME/CFS patients.

These muscle cells were cultured and examined in standardised laboratory conditions by applying a series of electrical pulses to simulate the muscle contraction that occurs during exercise.

The researchers found that the activation of AMP-activated protein kinase (AMPK) and the uptake of glucose were both impaired in these cells. AMPK has an important role in regulating energy in the cell and is normally activated during muscle contraction, while glucose is an important energy source.

Although AMPK was not activated by simulated muscle contraction in these cells from ME/CFS patients, later experiments indicated that it could be activated by treatment with metformin. This raises the possibility of whether a drug such as this could improve muscle function in patients.

To look at these abnormalities in more detail, and potentially to trace where they occur in the signalling pathway, the Newcastle team began a series of experiments funded by ME Research UK.

The first part of this work, published in Bioscience Reports, used a similar methodology to that in their previous study to investigate whether AMPK and glucose uptake in muscle cells from ME/CFS patients could be activated by treatment with pharmacological agents.

Skeletal muscle cells were obtained from eight patients with ME/CFS and from seven healthy control subjects. The cultured cells were then treated with metformin or with compound 991. Metformin is a drug commonly used to treat diabetes, and is known to activate AMPK indirectly via other mechanisms. Compound 991, on the other hand, was designed specifically as a direct activator of AMPK.

Treatment with metformin increased both AMPK activation and glucose uptake, and this was true for muscle cells from ME/CFS patients and from healthy control subjects. Similarly, compound 991 treatment also significantly increased both parameters in patient and control cells, and the effect on glucose uptake was similar to that expected following treatment with insulin.

Therefore, while AMPK in muscle cells from ME/CFS patients is not activated by electrical stimulation of the cells, it can be activated pharmacologically, and there are two important conclusions that might be drawn from these findings.

Firstly, this abnormality in signalling can potentially be bypassed by pharmacological treatment, and the investigators suggest that this adds further support to the idea of conducting a clinical trial of an AMPK activator in ME/CFS patients. Secondly, their results indicate that the signalling defect lies further up the molecular chain, possibly involving upstream enzymes such as LKB1 or CaMKK.

These findings represent the fascinating first steps of this project, which will continue to look more closely at the mechanisms underlying muscle fatigue in ME/CFS, and hopefully to identify potential targets for therapy.

April 2018

I Am Stuck In The Prison That Is ME

Ellie Bunce

I had hopes of being an Olympian – now I’m bed-bound with an illness some people think doesn’t exist.

ME, two simple letters that can rip apart everything you worked for and everything you ever dreamt of.

Myalgic encephalomyelitis is a soul destroying disease that leaves so many bedridden without anyone knowing.

I’ve had ME for two years now after coming down with glandular fever in Easter 2016. At the time I was 19, a student athlete – in my second year of university – with hopes of rowing internationally. I was fit, active, I ate well, I exercised. I was happy and positive and yet one day I woke feeling as if I was dying. It was like my whole body ached, in a way I’d never felt before – I felt drained of everything I had. I knew instantly something was wrong.

After calling 111 it was thought I had meningitis and an ambulance took me to A&E where various tests showed I had nothing wrong and was sent home with a suspected viral infection. However, that evening my tonsils went bright white and swelled so much I couldn’t breathe or swallow. Again I called 111 and was sent to an out of hours doctor where I was told I had tonsillitis.

A course of antibiotics cleared up my throat but I never felt the same again. Training was hard, I was always in pain and out of breath. After a week my tonsils flared up again. This time I was told in was glandular fever and to rest.

Months and months went past and I never got better.

Eventually it was thought I had chronic fatigue syndrome (ME). Since then I’ve spiralled downhill, getting more poorly everyday. From what I know, ME is an inflammation in my brain and nervous system which has left me in excruciating chronic pain, poor cognitive function, a weakened immune system and chronically fatigued.

Day to day every inch of my body is in pain, I struggle to read and concentrate, I’m sick, I’m too tired to move, bright lights hurt my eyes, loud noises hurt my head. I spend upwards of 20 hours in bed a day in order not to “crash”. In my crashes, I scream in pain, unable to talk, or move. My whole body shakes, my eyes roll. It’s like my whole body is screaming at me to stop.

Some days, when I feel a little better for an hour or two, I’ll see a friend. I look well. Nothing looks wrong with me. They don’t see me lying in bed screaming in pain. No one understands what truly goes on behind closed doors. People will ask me if I feel a bit tired. Or stare at me if I stand up after using a wheelchair. I’m questioned if it’s my mental health. If I’m lazy.

Have you ever laid in bed and felt so ill that you truly thought you were going to die?

ME is a hugely misunderstood and unheard of illness.

For years it was misdiagnosed and not believed. I’ve struggled with various doctors not understanding the condition and suggesting treatment, which in fact, made me worse. The first ‘specialist’ I saw suggested it was my personality.

He said, I should make more effort to wake up at 9am get showered, dressed and then go on a long walk. This was my ‘treatment plan’. However, the more I pushed myself to get out of bed, the more ill I got.

Imagine how you would feel if haven’t slept in three days, you caught the flu, had the worst hangover of your life – and you had to run a marathon feeling like this. This is how I feel everyday.

Having ME can leave me feeling invisible, unheard and misunderstood. It has lead to me developing various other conditions, such as depression, anxiety, eczema, migraines and tonsillitis. Because my immune system has been weakened I also regularly get viral infections on top of this.

My mind often wonders what I wish I could do if I wasn’t ill. I am stuck in the prison that is ME. When you are stripped of your hobbies, talents, energy and work then who do you become?

ME has made me become stronger mentally. I now find joy in the little things – a cuddle with my puppy, the blue sky, the sound of birds singing, the warm sun on my face.

I extremely grateful for all my family, relatives and the close friends who understand. I know it is hard for them to see me crumble into a shell of my former self. I live in the hope that one day doctors will find a treatment, one day there will be funding for more research, and one day I will be better.

The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.

MEA medical adviser Charles Shepherd said: “Several quality of life research studies have shown that the level of disability in ME can be just as great than many other serious medical conditions, including cancer and multiple sclerosis.

“While some some people with ME do improve over the course of time, it is only a small minority that return to full normal health.

“Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital based clinics, many doctors still don’t know how to diagnose and manage ME/CFS and lack or research means that we still don’t have any effective forms of treatment.

“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that is costing the UK economy around £3.5 billion in lost taxes, healthcare and benefit costs.”

For more information on ME, or to donate towards research, visit the ME Association website:

April 2018 

Forward-ME Group Letter to the Science Media Centre, April 2018

Forward-ME Group Letter

Forward-ME Group Chair, The Countess of Mar, has written on behalf of the members of the Group to the Chief Executive of the Science Media Centre asking for the SMC “to retract and replace your factsheet on CFS/ME, published on 21 March 2018”. The letter continues that the factsheet, entitled “CFS/ME – The illness and the controversy” “……. includes numerous inaccuracies and distortions; it denigrates patients and some doctors; it fails to reflect the numerous peer reviewed papers, published since the release of some of the raw data from the trial following legal action, which demonstrate serious defects in the PACE trial, and it fails to take into account the extensive research from the USA published since 2014. This will all have been available to you.”

The full text of the letter is as follows –

“Re: Science Media Centre Factsheet – CFS/ME – The illness and the controversy.

On behalf of Forward-ME I write to ask you to retract and replace your factsheet on CFS/ME, published on 21 March 2018, following the publication of a paper by Dr Carolyn Wilshire of the University of Wellington, New Zealand, which found that the findings of the Principal Investigators of the PACE trial were ‘not robust’ and showed ‘no long-term benefits’.

The factsheet includes numerous inaccuracies and distortions; it denigrates patients and some doctors; it fails to reflect the numerous peer reviewed papers, published since the release of some of the raw data from the trial following legal action, which demonstrate serious defects in the PACE trial, and it fails to take into account the extensive research from the USA published since 2014. This will all have been available to you.

The factsheet states: “CFS/ME is highly controversial with longstanding disagreements between the mainstream medical community and campaigners about its cause and treatment”. It also states that “amongst the mainstream medical research community, CFS/ME and NICE recommend management that is not especially controversial.

These claims are patently inaccurate. The mainstream medical community in the USA concluded that the “campaigners” have actually been correct about the nature of the condition, stating that “ME/CFS is a serious, chronic, complex systemic disease” (Academy of Medicine), that it is not a primary psychological disease in aetiology” (National Institutes of Health). They state that guidance for managing ME/CFS should include a “declaration that the disease is not the result of fear-based avoidance of activity”, and a clear indication that the disease is not a psychiatric or somatoform disorder” (Chronic Fatigue Syndrome Advisory Committee of the Department of Health and Human Services). There certainly is controversy and disagreement at this time, but that disagreement is not between professionals and “campaigners”. It is between professionals in the UK and professionals elsewhere.

The factsheet claims that: “After sustained pressure from activists the CDC has removed mention of CBT and GET from its website”. This, too, is patently inaccurate and even a cursory investigation of the facts would make that clear. The CDC changed its recommendations at the urging of the Academy of Medicine, the National Institutes of Health, the Department of Health and Human Services, and the Agency for Healthcare Quality and Research, all of whom emphatically agree that the CDC’s former recommendations – that is, the current NICE recommendations – lack evidence based support.

The author of the factsheet states that existing evidence in favour of CBT and GET is “cited by the scientific community”, as if there are no reputable members of the scientific community, and no reputable health policy authorities who disagree. They go on to state that “those who disagree …. cite review articles and reanalyses of trial data published in low impact factor journals such as The Journal of Health Psychology and Fatigue: Biomedicine, Health and Behaviour”.

It is concerning that a reputable resource like the Science Media Centre would publish such a grossly inaccurate claim, one that can be so readily overturned. Those who disagree with the evidence for CBT and GET cite the extensive investigations of the US governmental health authorities. In particular they cite the Agency for Healthcare and Research Quality Publication No. 15-E001-EF, “Diagnosis and Treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome”. That document is readily available online and a quick investigation will reveal that it offers a very long and detailed list of unscientific practices and biases in the research that claims to support CBT and GET. There are a great many such reports by US governmental health organisations. It is unacceptable for the Science Media Centre to write as if these investigations did not take place; as if these documents do not exist – and it is unacceptable not to note that, by comparison, the professional reputations of these organisations far outstrip those of the PACE trial researchers.

The reality is that at this time there are no US governmental health authorities who agree that the PACE trial is “good quality”. It is absurd for any “Factsheet” on ME/CFS to overlook this fact.

Your Trustees’ Report for the year ended 31 March 2016 gives among the SMC objectives its overall goal to help to achieve the aim of the House of Lords Science and Technology Committee which sought to renew public trust in science “by working to promote more balanced, accurate and rational coverage of the important science, health and environment stories that appear in the media.” In the case of the promotion of the science relating to CFS/ME the Science Media Centre have singularly failed in its objectives over many years.

If you are not prepared to retract this factsheet I regret that we have no option but to report our concerns to the Charity Commission.

I look forward to hearing from you shortly.

Yours sincerely

Countess of Mar

Chairman – Forward-ME

Copy to: Professor Jonathan Baker, Chair of Trustees. ”

By way of background information, the Science Media Centre (a registered charity) has as its stated mission “To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs.”  It states that it provides “journalists with what they need in the timeframe they need it, from interviews with leading experts to timely press briefings on topical issues. We provide journalists with information about science and its related disciplines, making it easier for them to get access to the best evidence and expertise. Given our focus on science in the headlines, the SMC works mainly with science and news journalists in the UK’s national news outlets.” The Centre sends out quotes from experts, statistical analyses of scientific studies and Factsheets, in addition to running regular press briefings on the latest hot topic.

March 2018

The PACE Trial continues to unravel …

A major study has been released today (22nd March) which again looks at the PACE Trial, and this in turn has led to a lot of coverage in the media.

“The message is clear – CBT and GET are not effective ways of treating a serious neuroimmune disease. The sooner this message gets across to health professionals the better.” (Dr Charles Shepherd, The ME Association).

The study –

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

PDF download:

Some of the media coverage –


Chronic fatigue trial results ‘not robust’, new study says

Belfast Telegraph

Findings of chronic fatigue study ‘not reliable’
The study faced intense criticism from patients and charities

Daily Mail

Findings of chronic fatigue study `not reliable´

The Canary

The mainstream medical community just declared war on people living with ME

The Times

Findings of £5m ME chronic fatigue study ‘worthless’

The ME Association’s response 

Reanalysis of the PACE trial finds impressive claims for recovery following CBT and GET are ‘not statistically reliable’

ME Association Press Release, 21st March 2018

Benefits reported in a controversial medical trial part-funded by the Department of Work of Pensions were “not reliable,” a major study has found.

A large-scale, government-funded trial, known as PACE, claimed psychotherapy and exercise helped the estimated 250,000 sufferers of the devastating illness, M.E. (myalgic encephalomyelitis).

Manifesting as unrelenting fatigue and profound pain, the condition, also known as chronic fatigue syndrome, has no known cure and is made worse by exertion.

Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, days, weeks or longer.

When the results of the five-year PACE trial were published in 2011, researchers claimed that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) were “moderately effective” forms of treatment.

The trial concluded that both treatments led to recovery in over a fifth of patients.

But PACE has since faced intense criticism from patients and charities, such as the ME Association, over how the results were obtained, analysed and presented.

Parliament has previously heard claims that the data was deliberately flawed to “remove people from long-term benefits and reduce the welfare bill”

After a long legal battle, unpublished data from the trial was released and has now been independently reanalysed. The paper, published in the journal BMC Psychology, has found that the benefits reported for psychotherapy and exercise therapy are modest and not statistically reliable.

Lead author Carolyn Wilshire, said:

“Our reanalysis was designed to explore how the PACE trial outcomes would have looked if the investigators had adhered to the primary outcome they described in their original published protocol.

“We also looked into the published data on long-term outcomes to examine whether they had been influenced by the treatments patients had received after the trial had ended.

“We found that the groups receiving CBT or GET did not significantly outperform the control group after correcting for the number of comparisons specified in the trial protocol. Rates of recovery were consistently low and not significantly different across treatment groups.”

In surveys carried out by the ME Association, more than half of patients who had followed the recommended graded exercise programme saw a worsening in their symptoms.

Dr Charles Shepherd, Honorary Medical Adviser to the ME Association, today said:

“The ME Association has always been very critical of the way in which the PACE trial was designed, especially the lack of any objective outcome measures.

“And we have not been impressed by the way in which the results have been reported in medical journals, especially claims relating to recovery following CBT and GET.

“So, it comes as no surprise to find that a very careful re-analysis of some of the PACE trial data by Carolyn Wilshire and colleagues has concluded that impressive claims for recovery following CBT and GET are not statistically reliable.

“It is also very concerning to note that this data was only released through use of the Freedom of Information Act and a very costly Tribunal – which ordered the release of data.

“This sends a powerful message to the research community that they must be willing to share data where there are serious concerns about protocols or the reliability of results from a clinical trial.

“The ME Association believes that it is very important to encourage research data sharing and, where appropriate, independent reanalysis – which is why we made a significant financial contribution towards the processing fee for publication of this paper.

“The message is clear – CBT and GET are not effective ways of treating a serious neuroimmune disease. The sooner this message gets across to health professionals the better.”

The PACE trial data was used justify NHS recommendations of exercise and cognitive behaviour therapy and no changes were made as a result.

But a patient revolt has forced the government and NICE (the National Institute of Clinical Excellence) to review the guidelines used by UK doctors. That review may not be completed before 2020.

Forward ME Letter to The Times: Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists’ | 23 March 2018

Letter to The Times, 23rd March, 2018.

Treatment for patients with M.E.


The article by Tom Whipple, (“Findings of £5m ME chronic fatigue study ‘worthless’,” Mar 22) highlights a long-standing problem.

The National Institute for Health and Care Excellence (Nice) is in the process of replacing its guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but this will take time.

Patients with ME/CFS in this country continue to receive damaging treatment in the form of graded exercise therapy (GET). Despite evidence of disabling metabolic abnormalities in their muscles, patients are advised to “exercise back to fitness”.

They are not simply “deconditioned” as claimed by many psychiatrists. Forced exercise above very low levels characteristically incapacitates most patients.

The “exercise will make you better doctrine” applied to ME/CFS is profoundly incorrect and has no scientific evidence base.

The human cost is enormous, with many sufferers from ME/CFS rendered worse by inappropriate medical management.

Even worse, such management is inflicted compulsorily on some patients, both adults and children, with their informed consent being bypassed via the use of mental health and child protection legislation.


Countess of Mar, Forward-ME; Dr William Weir, infectious disease consultant; Dr Nigel Speight, paediatrician; Dr Charles Shepherd, ME association; Dr Vance Spence, ME research UK; Jonathan Davies, ME research UK; Dr Gareth Tuckwell, ME trust; Dr Paul Worthley, ME trust; Jane Colby, Tymes trust; Helen Brownlie, 25 per cent ME group; Tanya and Christine Harrison, Brame; William and Janice Kent, Remember; Hannah Clifton, ME trust; Clare Ogden, Action for ME

March 2018

Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study

(This very much fits in with the research showing that ME is a hypometabolic disease e.g, the research at Stanford University, California.)

Begoña Ruiz-Núñez 1, 2*, Rabab Tarasse 1, Emar Vogelaar 3, Janneke Dijck-Brouwer 1 and Frits Muskiet 1

1 Laboratory Medicine, University Medical Center Groningen, Netherlands
2 Healthy Institute, Spain
3 European Laboratory of Nutriënts (ELN), Netherlands

Chronic fatigue syndrome (CFS) is a heterogeneous disease with unknown cause(s). CFS symptoms resemble a hypothyroid state, possibly secondary to chronic (low-grade) (metabolic) inflammation. We studied 98 CFS patients (21-69 years, 21 males) and 99 age- and sex-matched controls (19-65 years, 23 males). We measured parameters of thyroid function, (metabolic) inflammation, gut wall integrity and nutrients influencing thyroid function and/or inflammation. Most remarkably, CFS patients exhibited similar TSH, but lower FT3 (difference of medians 0.1%), TT4 (11.9%), TT3 (12.5%), %TT3 (4.7%), SPINA-GD (14.4%), SPINA-GT (14.9%), 24-hour urinary iodine (27.6%) and higher %rT3 (13.3%). FT3 below the reference range, consistent with the ‘low T3 syndrome’, was found in 16/98 CFS patients vs. 7/99 controls (OR 2.56; 95% CI=1.00 – 6.54). Most observations persisted in two sensitivity analyses with more stringent cut-off values for BMI, hsCRP and WBC. We found possible evidence of (chronic) low-grade metabolic inflammation (ferritin and HDL-C). FT3, TT3, TT4 and rT3 correlated positively with hsCRP in CFS patients and all subjects. TT3 and TT4 were positively related to hsCRP in controls. Low circulating T3 and the apparent shift from T3 to rT3 may reflect more severely depressed tissue T3 levels. The present findings might be in line with recent metabolomic studies pointing at a hypometabolic state. They resemble a mild form of ‘non thyroidal illness syndrome’ and ‘low T3 syndrome’ experienced by a subgroup of hypothyroid patients receiving T4 monotherapy. Our study needs confirmation and extension by others. If confirmed, trials with e.g. T3 and iodide supplements might be indicated.

March 2018

DNA gets away: Scientists catch the rogue molecule that can trigger autoimmunity

(This is not specifically about ME, but may be of interest as many believe that ME may well be an autoimmune condition.)

A research team has discovered the process — and filmed the actual moment — that can change the body’s response to a dying cell

Date: February 22, 2018

Source: Monash University

Summary: A research team has discovered the process — and filmed the actual moment — that can change the body’s response to a dying cell. Importantly, what they call the ‘Great Escape’ moment may one day prove to be the crucial trigger for autoimmune diseases like arthritis.

Full Story

A research team has discovered the process – and filmed the actual moment – that can change the body’s response to a dying cell. Importantly, what they call the ‘Great Escape’ moment may one day prove to be the crucial trigger for autoimmune diseases like arthritis.

The research team, led by Professor Benjamin Kile from Monash University’s Biomedicine Discovery Institute (BDI), has discovered – and filmed – the exact moment when DNA escapes out of the mitochondria (the organelles inside cells that produce energy) during cell death. The study, published today in the journal Science, involved major collaborators from the Walter and Eliza Hall Institute and the Howard Hughes Medical Institute’s Janelia Research Campus in the US.

Mitochondria are the ultimate double agent; they are essential to keep cells alive, but when damaged, they can trigger the body’s own immune system with potentially devastating consequences. Because the DNA inside mitochondria (mtDNA) has many similarities with bacterial DNA (they share common ancestry), the body reacts to its presence outside the mitochondria, or indeed, outside the cell, as if under attack from invading pathogens. It is a similar failure to distinguish ‘self’ from ‘non-self’ that underlies inflammatory and autoimmune diseases.

While the release of mtDNA is thought to contribute to autoimmune diseases such as lupus, how it escapes from the mitochondria has never been explained. Monash BDI researcher Dr Kate McArthur, while completing her PhD at the Walter and Eliza Hall Institute, used a revolutionary new microscope at the Janelia Research Campus in the US to capture the moment when mitochondria form a ‘hernia’ that balloons out of the mitochondria expelling the DNA into the rest of the cell.

The live-cell lattice light-sheet microscopy (LLSM) system developed by Nobel Prize winner Eric Betzig is a new technique that allows scientists to observe living cells at groundbreaking resolution. Dr McArthur travelled to the Janelia Research Campus in Virginia multiple times between 2015-2017, and remembers the moment when she witnessed, for the first time, the mitochondria actively expelling its DNA.

“As scientists, we are taught to be quite sceptical when we see something unexpected, so I think my initial reaction was ‘no way…’

“It was only after I had carefully repeated the experiment many times that I began to realise what we had found,” Dr McArthur said.

According to Professor Kile, when a cell commits suicide (a normal part of the human body’s balancing act to control blood cell numbers), two proteins called BAK and BAX are triggered.

“What we witnessed – in real time – was these professional killer proteins opening up huge ‘macropores’ in the outer membrane of the mitochondria, leading the inner contents to herniate out, bringing the mtDNA with it,” Professor Kile said.

“BAK and BAX deliver the ‘kill shot’ designed to permanently disable the cell. But in doing that, mtDNA is lost from the mitochondria. In essence, this is collateral damage, which, if it isn’t controlled properly, triggers the immune system to drive pathological inflammation,” he said.

The discovery was cemented by images captured by Monash University’s Titan Krios cryo-electron microscope, currently the most advanced microscope for biological electron microscopy, and the Walter and Eliza Hall Institute’s new lattice light-sheet microscope, custom built by collaborators in the Institute’s Centre for Dynamic Imaging.

Professor Kile stressed that, in research, “fundamental discoveries such as this are rare, and this one has profound implications for the understanding of a wide range of autoimmune diseases and infections.

“This has been a brilliant collaboration – between Monash’s Biomedicine Discovery Institute, the Walter and Eliza Hall Institute of Medical Research here in Melbourne and the Janelia Research Campus in the US – which has brought together cutting-edge technologies and first-class expertise to address questions that before now, had never been asked, and would have been impossible to answer,” he said.

February 2018

Neurologic Abnormalities in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Review

Komaroff AL 1, Takahashi R, Yamamura T, Sawamura M.

1 Department of Medicine, Brigham & Women’s Hospital, Harvard Medical School.


Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is an illness characterized by fatigue lasting for at least six months, post-exertional malaise, unrefreshing sleep, cognitive impairment and orthostatic intolerance. ME/CFS has been a controversial illness because it is defined exclusively by subjective complaints. However, recent studies of neuroimaging as well as analysis of blood markers, energy metabolism and mitochondrial function have revealed many objective biological abnormalities. Specifically, it is suspected that the symptoms of ME/CFS may be triggered by immune activation – either inside or outside the brain – through release of inflammatory cytokines. In this review, we summarize potentially important recent findings on ME/CFS, focusing on objective evidence.

PMID: 29348374 DOI: 10.11477/mf.1416200948

February 2018

The Young ME Sufferers Trust –

No Reported Harassment at Bristol University (Information Obtained Under FOI)

There has been no reported harassment of staff at Bristol University.

Yes, you read that correctly.

We have all become accustomed to the increasingly shrill ‘harassment’ accusations against ME patients and ‘activists’, both via the media and in lectures. This campaign appears to have originated at that now infamous meeting of the Science Media Centre, revealed by our original 2014 Freedom of Information Report, now updated under the title Shining a Light on the CMRC Setup( Members of the UK Research Collaborative have continued to spread these allegations ever since its launch.

In Shining a Light we stated: In the records of the meeting where ‘harassment’ of researchers was discussed, no mention was made of personal threats such as have been reported in the media. Freedom of Information (FOI) requests were listed as the most damaging type of ‘harassment’. The 2016 tribunal appeal Judgement ordering QMUL to release the PACE trial data highlights that Professor Trudie Chalder accepts that “no threats have been made either to researchers or participants”.

And yet the accusations persist and have even escalated. Tymes Trust has found this constant narrative so abhorrent that we have sought some answers. We have, once again, sought evidence.

A Freedom of Information request was submitted to Bristol University, as that is where many of the accusations are coming from, to find out just how bad this claimed harassment has become. Was it just in the field of ME and CFS that this was happening, or was it more widespread?

The request was submitted to Bristol University on 19th March 2017 asking for: the number of reports of harassment that members of staff have officially recorded with Bristol University between July 2015 and January 2017. I am only interested in those reports where the harassment came from outwith the university.

Five days before the deadline for the FOI response on 13th April, the University emailed back: The University has made an initial assessment of your request, and in order to progress it further we first require clarification from you. Specifically, can you please confirm whether you require details of a third party harassing members of staff at the University, or matters where members of staff at the University have been harassed by a third party? [SIC]

Confirmation was provided on the 17th April that the harassment should be by a third party.

Bristol University finally responded to the 19th March FOI request on 9th June, stating:

We have received no recorded instances of harassment of staff by a third party between July 2015 and January 2017.

We decided that this response required further investigation and a second FOI was then submitted to Bristol University on 12th June asking: Can you please provide the number of reports of harassment that members of staff have officially recorded with Bristol University between September 2010 and June 2015? I am only interested in those reports where the harassment came from outwith the university; that is, harassment of university staff by a third party.

After the 20 day statutory deadline passed with no response, a request for an internal review by Bristol University was submitted on 11th July.

Again, no response was received from the University and on 9th August an email was sent to the Information Commissioner (ICO) requesting that the appeal process be started with regard to this failure to respond.

The ICO replied on 12th August, saying that they had: written to the public authority to provide them with a copy of your original request, reminding them of their responsibilities and asking them to respond to you within 10 working days of receiving our letter (that is, by 29 August 2017). The ICO added that if you do not receive any response within 10 working days, please contact us.

By the 30th August, one day after the 10 working day deadline, no response had been received from Bristol University and a further email was sent to the ICO advising them of this fact.

At 5.21pm that same day, Bristol University then responded to the FOI request of 12th June, stating: We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015.


The 2016 tribunal appeal Judgement ordering QMUL to release the PACE trial data, which had found, in the Judge’s words, no threats have been made either to researchers or participants, taken together with this new information that Bristol University have no reports of harassment of University staff by a third party between September 2010 and January 2017 raises questions about such accusations and about those who make them.

Why did we use Freedom of Information?

Freedom of Information requests provide the public with access to information held by public authorities. The aim of the Freedom of Information Act was a more open government based on mutual trust.

The ICO website states that Public authorities spend money collected from taxpayers and make decisions that can significantly affect many people’s lives. The decisions and actions of researchers in the field of ME and CFS do significantly affect many people’s lives. The Government White Paper Your Right to Know: Freedom of Information 1998 stated: Unnecessary secrecy in government leads to arrogance in governance and defective decision making.

January 2018

Why study metabolomics in ME/CFS?

January 3, 2018

From the Open Medicine Foundation –

Happy new year, and happy #OMFScienceWednesday! As many of you out there are recovering from the holidays, today’s topic is metabolomics. Metabolomics simply describes a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.

Metabolomics has become a very hot topic in ME/CFS research, and one that we are involved in supporting, because Dr. Ron Davis and several independent teams have used it to show metabolic differences between patients and healthy controls. This certainly makes sense based on what we know about the disease and patients not having the energy to perform the functions they always could. Metabolism is incredibly complex and can vary a lot even in healthy individuals, so it’s important to collect as much data as possible from patients. More metabolomics data will help us to understand what exactly is going wrong in ME/CFS metabolism (or if different things are going wrong in different patients), help identify metabolic biomarkers, and hopefully point to treatments that can compensate for any defects in metabolism. That’s why we are funding studies like those of Ron Davis’ lab at Stanford and Bob Naviaux’s lab at UCSD.

To learn more about metabolomics and metabolism, check out this training link.

To keep up with the latest #OMFScienceWednesday posts, follow us on Facebook.

January 2018

They told me my illness was all in my head. Was it because I’m a woman?

Why doctors must stop disbelieving women’s symptoms and institutions must do more research on diseases that primarily affect women.

By Jennifer Brea
December 27, 2017

Five years ago, at a restaurant in Cambridge, my waitress brought me the check. I stared at the signature line, pen in hand, and froze. I was 28 years old, a Harvard PhD student studying political economy and statistics, and I had forgotten how to write my own name.

More than a year before, my temperature had spiked to 104.7. I thought I had a bad flu. After the fever subsided, I kept getting common ailments: sore throats, sinus infections, low-grade fevers. Except I would wind up in bed, inexplicably dizzy, for days on end. After the restaurant incident, I got to the point where I could leave my house only in a wheelchair. Some days, I did not have the strength to lift my head.

Seeking answers, and care, I would eventually see a dozen specialists at Massachusetts General Hospital and Brigham and Women’s. All of their tests came back normal. As my symptoms grew in complexity, my doctors started to use words like “anxiety” or “depression.” On instinct, I started taking my then fiance, now husband, Omar, to my appointments. (I thought I might be treated better if I had a male witness.) Then a neurologist gave me a diagnosis: Conversion disorder, which prior to 1980 was called “hysteria.”

In other words, it was all in my head.

So I tested the hypothesis, walking the mile from the clinic to home, ignoring the pain in my legs. Once home, I collapsed. My brain and my spinal cord felt like they were burning. I was bedridden for months, and have never been the same since.

It turned out I have myalgic encephalomyelitis, ME, more commonly called chronic fatigue syndrome. An estimated 1 million Americans have it. Twenty-five percent are homebound or bedridden and 75 percent can’t work. And yet every day I hear from patients with ME who struggled to receive a diagnosis. On average ME patients need five years to get diagnosed, and many sufferers report spending much of that time being told their symptoms are psychological. In general, women are 2 to 10 times more likely than men to receive a diagnosis of hysteria. And while globally, ME affects millions of men, 80 percent of people who have it are women.

The phenomenon of disbelieving women’s symptoms extends far beyond ME. Forty-five percent of patients with autoimmune disorders — the majority of whom are women — are initially told they are hypochondriacs before being accurately diagnosed.

We endure such waits, I believe, not because my disease is inherently inscrutable but because we have chosen not to invest in understanding it. For more than a decade, ME has received just $5 to $6 per patient annually in research funding from the National Institutes of Health, the second lowest of any disease for which NIH reports categorical funding. (The lowest, fibromyalgia, has a patient population that is 90 percent female.) Less than a third of medical schools even incorporate ME into their curricula. You cannot find answers to the questions you don’t ask — or don’t fund.

Here’s what we do know: The disease is frequently triggered by an infection, and many symptoms, including dizziness, appear or worsen when a person stands up (doctors call this orthostatic intolerance). ME patients have immune abnormalities, and some may have an autoimmune disease. We also have a defect that limits our metabolic ability to convert sugar into energy. ME’s hallmark feature is “post-exertional malaise” — after cognitive or physical exertion, every system of the body is affected so severely by symptoms that we call it a “crash.”

I’m lucky. I got diagnosed and have improved with treatment. I was able to give a TED Talk and, from bed, make a documentary, Unrest, about my experience. I can leave my house now, albeit in a wheelchair. But complete recovery from ME is rare.

When I first got sick, I thought maybe I had a rare disease — something doctors had simply never seen. Then I came to understand I was part of a community of millions living with ME who had been systematically disbelieved and marginalized. What I now know is that around the world, hundreds of millions live with autoimmune diseases. These are often complex, difficult-to-diagnose conditions that modern medicine is ill-equipped to treat. They disproportionately affect women and their incidence is rising. We need to band together across the borders of our diagnoses to build a movement for more investment in research and better care.

And in the meantime, it’s important that doctors tempted to offer a patient a psychological cause for their symptoms stop and ask themselves about the assumptions they might be making based on gender. Conversion disorder affects perhaps 14 to 22 people out of 100,000, so the chances a doctor will ever see a patient with it are not high. It would be far better, when confronted with a puzzle that defies diagnosis, to say, “I don’t know.” For patients like me, those words can be as lifesaving as medicine.

Jennifer Brea is a health activist and filmmaker whose 2017 documentary, “Unrest,” is on the short list for an Academy Award It premieres on PBS January 8.

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