I Am Stuck In The Prison That Is ME
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: www.meassociation.org.uk
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.
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.
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
Some of the media coverage –
Chronic fatigue trial results ‘not robust’, new study says
Findings of chronic fatigue study ‘not reliable’
The study faced intense criticism from patients and charities
Findings of chronic fatigue study `not reliable´
The mainstream medical community just declared war on people living with ME
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
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.
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.
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.
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
The Young ME Sufferers Trust – www.tymestrust.org
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(http://www.tymestrust.org/pdfs/shiningalight.pdf). 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.
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.
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.
ME/CFS Collaborative Research Center at Stanford University, funded by OMF
The ME/CFS Collaborative Research Center at Stanford will be led by Dr. Ron Davis, Professor of Biochemistry and Genetics at Stanford University, and Director of our Scientific Advisory Board. Dr. Davis has assembled a truly world-class team of researchers, many of whom have never before focused their expertise on ME/CFS, and has planned several innovative projects that will help us to understand the molecular basis of ME/CFS, develop better diagnostics, and discover new treatments. Given the number and quality of investigators that this grant would bring into the field, and the likelihood of groundbreaking discoveries coming from this research, OMF has decided to fund this highly promising proposal. Although the National Institutes of Health decided against funding this plan as one of their Collaborative Research Centers, we believe this work is too important and too promising not to pursue. We are not willing to miss the opportunity to actively involve a scientific team of this caliber in the field of ME/CFS research. OMF will, therefore, be supporting the first year of this groundbreaking research with $1.2 million, and we are actively and enthusiastically raising the funds needed to support the remaining 4+ years it will take to complete it.
The Center will pursue three distinct projects, all related to understanding and treating ME/CFS by developing and using cutting-edge technologies. This work will build on previous projects that OMF has supported. For more information about these projects from the scientists involved, please see the YouTube videos from our recent Community Symposium on the Molecular Basis of ME/CFS.
1. T cells and the molecular immunology of ME/CFS
Sequencing single T cells and discovering their targets
Many studies have shown that the immune system is affected in ME/CFS patients, e.g., low activity of NK cells, altered levels of cytokines (signaling molecules of the immune system), and the likelihood of a microbial infection preceding the illness. Now, scientists on this team have implicated T cells – the immune cells responsible for identifying and killing infected cells – in ME/CFS. Specifically, their discovery of T cell clonal expansion indicates that patient T cells are reacting to a foreign invasion (e.g., virus) and/or to the ‘self’ (autoimmunity). HLA genes play a part in this reaction, and personal variations in these genes may also be playing a role in the risk of developing the disease. Discovering what is triggering this T cell clonal expansion will help to determine immunological causes of ME/CFS, may explain the elevated cytokine levels, and could lead to new treatments.
The Collaborative Research Center at Stanford will investigate the immunological basis of ME/CFS using several approaches. Dr. Mark Davis’ team will investigate the clonal expansion of T cells in ME/CFS, including what they might be targeting – viruses, bacteria, or self (autoimmune). Dr. Ron Davis’ team has invented a highly accurate, cost-effective method for HLA gene sequencing and a very sensitive method for detecting viral DNA as a sign of viral infections, which he will use in this project. Dr. Lars Steinmetz’ team has developed effective methods for sequencing RNA from single T cells, which they will use to understand how T cell behavior may be different in ME/CFS. Overall, these methods will help to determine if ME/CFS is an autoimmune disease, and what immune factors may be triggering ME/CFS or sustaining it as a chronic disease. By helping to understand the immunology of ME/CFS, it may be possible to identify treatments that modulate the immune response.
2. Extended big data study in families
Genome sequencing, gene expression, metabolomics, cytokines, clinical features, and more
OMF has funded a big data study of 20 severely ill ME/CFS patients, encompassing a huge variety of molecular and clinical tests, the largest of its kind in this disease. Among many things, this study is helping to look for genetic factors and potential molecular biomarkers, and is allowing us to generate many hypotheses. The analysis of this dataset, led by Dr. Wenzhong Xiao, has yielded many interesting observations, but it is clear that more patients must be profiled in this way to validate and extend these observations to a less severe population. The Collaborative Research Center at Stanford will expand this big data study to patients of varying severities and their families.
It has been clear for some time that there are families with multiple members affected. This might be caused by a genetic predisposition to the disease. Studying these families is likely to yield a better understanding of the factors that make someone susceptible to ME/CFS. Fereshteh Jahanbani, PhD, a Research Associate with Mike Snyder, PhD, hypothesizes that using unaffected members of these families as controls will reduce the variance in the data between controls and affected, because of the similarities in their genetics, environment, and diet. The team anticipates that this study will help define meaningful subgroups of patients, biomarkers that could be useful in diagnosis and monitoring of disease progression, and molecular defects that could be targeted with new treatments.
3. Developing blood-based diagnostic and drug screening technology
Enabling fast, inexpensive diagnosis of ME/CFS and discovery of new treatments
One of the greatest obstacles in ME/CFS research and patient care is the lack of a biological diagnostic. Dr. Davis’ engineering team has promising preliminary technologies that can distinguish ME/CFS blood samples from healthy samples, and is currently refining these technologies and investigating what the results tell us about ME/CFS biology. The technologies include the nanoneedle biosensor, developed by Rahim Esfandyarpour, PhD, the magnetic levitation platform developed by Gozde Durmus, PhD, and more. The Collaborative Center will continue this work to engineer a blood-based diagnostic device that would also be useful as a reporter for drug screening. Dr. Davis’ team has already tested chemicals in two of our platforms, some of which have made the patient samples behave more like healthy samples. To validate these findings and test large numbers of samples and candidate drugs, they will further develop and optimize the technology. Eventually, the developed technology will be shared across the ME/CFS research community to accelerate its evaluation and adoption as a clinical diagnostic assay. The Stanford Genome Technology Center has developed a number of diagnostic assays that have been commercially exported and are now in clinical use. Dr. Davis’ team has experience in the complex process of developing and implementing an assay that becomes approved for clinical use, in the USA, as well as in Europe and other countries.
To carry out this ambitious work, Dr. Davis has assembled a team of extraordinary scientists with expertise in a variety of areas directly relevant to ME/CFS research. Most of these scientists are new to ME/CFS, bringing with them extensive knowledge and perspective from other fields and diseases.
ME/CFS Collaborative Research Center at Stanford Team:
Ron Davis, PhD, Professor of Biochemistry and Genetics, Stanford University School of Medicine; Director, Stanford Genome Technology Center; Director, Chronic Fatigue Syndrome Collaborative Research Center at Stanford University; Director, Open Medicine Foundation ME/CFS Scientific Advisory Board.
Mark M. Davis, PhD, Director, Stanford Institute for Immunology, Transplantation and Infection (ITI); Professor of Microbiology and Immunology; Howard Hughes Medical Institute Investigator.
Mike Snyder, PhD, Chair, Stanford Department of Genetics; Director, Stanford Center for Genomics and Personalized Medicine
Wenzhong Xiao, PhD, Director, Immunoâ€Metabolic Computational Center, Massachusetts General Hospital, Harvard Medical School.
Craig Heller, PhD, Professor of Biology, Stanford University, exercise physiologist.
Robert Phair, PhD, Chief Science Officer, Integrative Bioinformatics, Inc..
Lars Steinmetz, PhD, Co-Director, Stanford Genome Technology Center; Professor of Genetics, Stanford University; Senior Scientist, Genome Biology Unit, European Molecular Biology Laboratory.
Raeka Aiyar, PhD, Director of Communications and Development, Stanford Genome Technology Center.
Laurel Crosby, PhD, Engineering Research Associate, Stanford Genome Technology Center – multi-system integration
Rahim Esfandyarpour, PhD, Engineering Research Associate, Stanford Genome Technology Center – electrical engineering, device fabrication
Fereshteh Jahaniani, PhD, Research Associate, Stanford Center for Genomics and Personalized Medicine – multi-omics
Mohsen Nemat-Gorgani, PhD, Life Science Research Scientist, Stanford Genome Technology Center – protein biochemistry, enzymology
Peidong Shen, PhD, Research Associate, Stanford Genome Technology Center – biochemistry, cell-free DNA detection methods
Gozde Durmus, PhD, Postdoctoral Fellow, Stanford Genome Technology Center – magnetic levitation platform, bioengineering
Julie Wilhelmy, Life Science Research Professional, Stanford Genome Technology Center – experimental genomics, immunology
Robert Naviaux, MD, PhD, Professor of Medicine, Pediatrics, and Pathology, University of California, San Diego; Co-Director of Mitochondrial and Metabolic Disease Center
William Robinson, MD, Associate Professor of Medicine (Immunology and Rheumatology), Stanford University
Curt Scharfe, MD, Associate Professor of Genetics, Yale University
Lucinda Bateman, MD, founder and Medical Director of the Bateman-Horne Center for ME/CFS and Fibromyalgia
David Kaufman, MD, ME/CFS Physician
We are fortunate that many members of the scientific, medical, and biotechnology communities have offered their expertise and resources to this Center.
Paul Berg, PhD, Professor of Biochemistry, Emeritus, Stanford University; Nobel Laureate
Mario Capecchi, PhD, Professor of Human Genetics and Biology, University of Utah; Nobel Laureate
Baldomero Olivera, PhD, Professor of Biology, University of Utah
Alain Moreau, PhD, Professor of Biochemistry and Molecular Medicine, University of Montreal
Øystein Fluge, MD, Department of Oncology and Medical Physics, University of Bergen, Haukeland University Hospital, Bergen, Norway
Olav Mella, MD, Department of Oncology and Medical Physics, University of Bergen, Haukeland University Hospital, Bergen, Norway
Jonas Bergquist, MD, PhD, Professor of Analytical Chemistry and Neurochemistry, Uppsala University, Sweden
Jonas Blomberg, MD, PhD, Professor of Clinical Virology, Emeritus, Uppsala University, Sweden
Maureen Hanson, PhD, Professor of Molecular Biology and Genetics, Cornell University
Chris Armstrong, PhD, Department of Biochemistry and Molecular Biology; Bio21 Molecular Science & Biotechnology Institute researcher at the University of Melbourne, Melbourne, Australia
Neil McGregor, BDS, MDSc, PhD, senior researcher, Bio21 Molecular Science and Biotechnology Institute, University of Melbourne, Melbourne, Australia; Adjunct Professor, Victoria University, Melbourne, Australia
Ronald Tompkins, MD, ScD, Professor of Surgery, Harvard Medical School; Founding Director of Center for Surgery, Science & Bioengineering at Massachusetts General Hospital
Catherine Blish, MD, PhD, Assistant Professor of Medicine and of Immunology, Stanford University
Christopher Garcia, PhD, Professor of Molecular and Cellular Physiology, Stanford University
Roger Howe, PhD, Professor of Engineering, Stanford University; Director, Stanford Nanofabrication Facility
Tom Soh, PhD, Professor of Electrical Engineering, Radiology, and by courtesy, Chemical Engineering, Stanford University
Robert Tibshirani, PhD, Professor of Biomedical Data Sciences and Statistics, Stanford University
Alan Light, PhD, Professor of Anesthesiology, University of Utah
Emmanuel Mignot, MD, PhD, Professor of Sleep Medicine and of Psychiatry and Behavioral Sciences, Stanford University; Director of Stanford Center for Sleep Sciences and Medicine
Gerald Shadel, PhD, Professor of Pathology and Genetics, Yale University; Director of Yale Center for Research on Aging
Jarred Younger, PhD, Associate Professor of Anesthesiology and Rheumatology and of Psychology, University of Alabama at Birmingham; Director, Neuroinflammation, Pain, and Fatigue Laboratory
John Ryals, PhD, President and CEO, Metabolon
Chunlin Wang, PhD, Chief Technology Officer, iRepertoire, Inc.
Michael Mindrinos, PhD, President of Sirona Genomics, an Immucor company
David Bell, MD, ME/CFS Physician
Kevin Tracey, MD, Professor of Neurosurgery and Molecular Medicine, Hofstra Northwell School of Medicine
Jennifer Frankovich, MD, Clinical Associate Professor of Pediatric Rheumatology, Stanford University
Jose Montoya, MD, Professor of Medicine, Stanford University; ME/CFS Physician
Susan Levine, MD, ME/CFS Physician
Harry Greenberg, MD, Senior Associate Dean of Research, Professor of Medicine, Stanford University
Bela Chheda, MD, ME/CFS Physician
We are very grateful for the support and contributions of the ME/CFS patient community, which has and will continue to play an integral role in moving research forward. We are committed to continuing to involve patients as participants and consultants throughout these projects, and maintaining open communication about our findings through a variety of venues. We are especially grateful to all the patients who selflessly volunteer to be subjects in our research, who generously donate to make our research possible and who send Dr. Davis their ideas, scientific analyses, and links to publications. Our patient partners are a significant and essential part of our team.
Professor Malcolm Hooper – Off the PACE
At a conference in November run by the Academy of Nutritional Medicine (http://aonm.org/) entitled “Waking to a New Dawn: The Emergence of 21st Century Acquired Immune Deficiences & Innovative Solutions”, the keynote speaker was Professor Malcolm Hooper, who is well known to people with ME, and who gave a talk called “OFF THE PACE: CMIs, BPS, PACE, GUIDELINES and CONSEQUENCES”.
To view the PowerPoint presentation of Professor Hooper’s talk –
To read his notes –
Well worth looking at by anyone interested in the background of all that has happened in the ME world over the last 30 years or so, and in finding out how things have ended up as they are now.
Will The UK Establishment Finally Stop Denying The Reality Of ME?
By Dr Simon Duffy, Director of the Centre for Welfare Reform
Jennifer Brea’s powerful film Unrest exposes the reality of Myalgic Encephalopathy or ME. This condition leaves people utterly exhausted, or as Brea puts it, like a broken battery, unable to charge beyond 10%.
ME is poorly understood and receives minimal research. Brea was repeatedly misdiagnosed and, on one occasion, even told that it was all in the mind – the result of some long-forgotten trauma.
Eventually Brea discovered that there was not only a name for her condition but that there are millions of other people suffering with ME. With the correct diagnosis she has managed to reduce the impact of ME on her life, but she also came to understand how this real disease creates double-barrelled suffering: first, it devastates your life by robbing you of energy; second, the failure of society to respect the reality of your illness makes you invisible and defenceless.
So, why has ME been so badly misunderstood?
Dr Charles Shepherd explains that in the UK two psychiatrists played a particularly damaging role, by treating an outbreak of ME (within a hospital) in 1955 as an example of hysteria. This dangerous desire to solve a problem by evading the problem, has been made all the easier by the emergence of something called the biopsychosocial (BPS) model: this is an all encompassing framework for rethinking illness – making it part biological, part mental, part social. This may seem reasonable, but it easily becomes a way of blaming the victim and claiming it’s all in the mind.
The PACE Scandal also demonstrates the powerful forces at work. PACE was a research programme to test two ‘therapies’ for people with ME – Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). Although these therapies did not prove effective, researchers amended the rules of the evaluation so that people who had got worse were counted as having benefited from these therapies.
Outside the UK the PACE research has been severely criticised; but the Countess of Mar believes that the UK media has been frightened into silence by the Science Media Centre whose board membersinclude Sir Simon Wessely, one of the psychiatrists connected to the PACE scandal. Even more disturbing is that Mrs May has now asked Wessely to lead an Independent Review of the Mental Health Act 1983 – a decision heavily criticised by independent advocates.
The UK Government also seems to have a stake in maintaining the belief that ME is all in the mind. Mo Stewart, in her book Cash Not Care, has shown how the US Insurance Company Unum has promoted the BPS model within the DWP, encouraging the UK Government to reduce disability benefits in order to grow the market for their own disability insurance products. Lord Freud cited the PACE research as important evidence to justify the use of BPS in their welfare ‘reforms’ and medical diagnoses have now been replaced with dubious catch-all assessments of ‘readiness for work’ or ‘level of help.’ The film I, Daniel Blake accurately captures many of the horrors of these mindless and inhuman processes.
Fortunately, in the USA, researchers are now taking ME seriously, and making important progress. CBT and GET are no longer recommended as helpful therapies and instead there is increasing recognition that excessive exercise can be extremely dangerous. The level of research is still inadequate, but no one doubts the reality of the illness and important and revealing tests have been developed.
Brea’s film, which is winning awards and being widely seen, may help undermine the resistance of the UK establishment, but there is still a long way to go. Even if there are research breakthroughs people will still be living with the disabling consequences of ME. It is for this reason that the Centre for Welfare Reform is supporting the Chronic Illness Inclusion Project. Our aim is to help the community of people suffering from chronic illnesses (including, but going beyond, ME) to find their own voice, to build alliances with other disabled people and to ensure that they are no longer invisible before the eyes of the powerful.
ME sufferers being shamefully let down by professionals
LINDA BURNIP and DENISE McKENNA from Disabled People Against Cuts spotlight how people with ME are having their health and welfare harmed by poor research and misuse of statistics
LAST week, over 65 deaf and disabled people’s organisations, campaigns and mental health professionals wrote to the Prime Minister asking her to urgently rethink her decision to appoint Professor Sir Simon Wessely to lead the much-anticipated independent review of the Mental Health Act as announced in her speech at the Conservative Party conference on October 4.
Wessely’s body of work on myalgic encephalomyelitis (also known as chronic fatigue syndrome), and his conduct in relation to people with ME, make him resoundingly unfit to lead an inquiry into the Mental Health Act.
ME is a poorly understood illness, believed by most researchers in the field to have a physical cause. But the “psychiatrisation” of ME through a cognitive-behavioural approach to the illness led by Wessely since the late 1980s has resulted in treatment (particularly graded exercise therapy, or GET) which can be harmful and even coerced, in the stigmatisation of patients and let to the frequent denial of their entitlement to social security and support.
Wessely has consistently promoted the unsubstantiated suggestion that ME is caused or maintained by patients’ false illness beliefs and abnormal behaviour.
As a result, the integrity of patients’ experience of this devastating illness been destroyed as their testimony is deemed unreliable.
This form of “epistemic injustice” (according to medical ethics scholars Blease et al) has seen people with ME derided within the medical profession and wider society for misperceiving, exaggerating, even creating their own illness.
Wessely’s approach to ME involves treatment with GET, aimed at reversing the physical consequences of what he sees as their dysfunctional behaviour.
Nearly 50 per cent of people with ME surveyed reported that treatment with GET made their condition worse.
Yet Wessely and his colleagues are silent on the subject or dismiss patient experience as unreliable evidence or poor treatment compliance.
As a result, thousands of people with ME have received NHS treatment informed by his model that has further damaged their health.
Wessely continues to defend the notorious Pace trial, a study into CBT and GET treatment for ME/CFS part-funded by the Department for Work and Pensions and widely condemned by academics for misuse of statistical methods in order to produce positive-looking results.
Wessely’s involvement in media discussions about ME has further suppressed patients’ voices. Following the publication of results from the Pace trial, Wessely and his colleagues responded to concerns about their work by taking part in media campaign which promoted prejudice and led to those patients who had identified serious methodological and statistical problems being dismissed as irrational extremists motivated by anti-psychiatry.
The Science Media Centre, for which Wessely is a trustee, has played a key role in promoting misleading information about the Pace trial, and smearing critics.
During the 1990s Wessely advised the DWP (then DSS) that classifying ME as a neurological illness, as the World Health Organisation does, would perpetuate patients’ false beliefs, prolong their illness and result in a deluge of disability claims.
The influence of Wessely and his colleagues on DWP training manuals on CFS/ME has undoubtedly resulted in a disability assessment system biased against people with ME and caused them great additional difficulty in accessing support with the extra costs of their disability.
The work of Jonathan Rutherford reveals how Wessely was among a group of medical and insurance industry professionals whose work on “malingering and illness deception” influenced the DWP’s understanding of ill-health and disability.
Wessely and his colleagues shaped the ideology underpinning the disastrous work capability assessment (WCA) known as the “biopsychosocial model.” According to Professor Tom Shakespeare and colleagues who have exposed the poor science underpinning the biopsychosocial model, this approach to disability effectively blames disabled people seeking social security support for their own misfortune.
The WCA has had a devastating impact on the lives of disabled people as part of a package of welfare reforms leading, in the words of the UN disability committee, to “human catastrophe.”
All of these activities amount to an abuse of power by Wessely against people with ME. His thoughts and actions have led to stigma, iatrogenesis and a denial of their rights to support, all of which have compounded the burden of this illness immeasurably.
UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project
Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project
By Russell Fleming, Content Manager, ME Association.
ME Association trustees and staff were over the moon when we heard that the CureME team at the London School of Hygiene and Tropical Medicine had received a new grant of $2.1 million from the National Institutes of Health (NIH) in America.
The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.
The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.
Dr Luis Nacul, who leads the CureME team, is also responsible for overseeing the UK ME/CFS Biobank, which has been built and maintained by charity support and the funding from America.
The new grant will enable the Biobank to increase in size as even more blood samples and clinical data will be collected from people with ME/CFS, multiple sclerosis, and healthy controls, and then made available to research applicants.
“The new grant from the NIH (US) will enable, for the first time, comprehensive prospective assessments of cases of ME/CFS at regular intervals.
“This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of this complex disease and the identification of much-needed biomarkers for the diagnosis of different sub-groups of patients.
“We very much look forward to continuing our partnership with the patient community, which has been key to the success of our research so far.”
Dr Luis Nacul, Principle Investigator, CureME team, LSHTM.
The Biobank is the only resource in the world able to include samples from those most severely affected – the house- or bed-bound – and is the premier resource outside the United States for the study of the disease. All participants are examined by a clinician and must conform to the Biobank’s rigorous protocols.
The ME Association has been a long-time supporter of the Biobank and provides funding to support its development. This longitudinal project, that in total will amount to some £2.56 million, represents one of the most exciting opportunities to learn more about this devastating disease.
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Chair of the UK ME/CFS Biobank Steering Group, commented:
“This is a significant and vital sum of money that will help scientists unravel the mysteries of this devastating illness.
“The irony is that the funding comes once again from America.
“What this seems to suggest is that the USA is far more serious about finding the underlying causes of M.E., while the UK seems most willing to invest in inappropriate studies using cognitive behavioural therapy and graded exercise.
“The fact that the NIH has decided to provide another major grant is an important endorsement of the ME/CFS Biobank, and we would like to congratulate all the staff who have been involved in setting up and developing what has become a vital new part of biomedical research infrastructure here in the UK.
“We hope that other research groups will also now start to make use of this unique resource to achieve desperately-needed breakthroughs into the cause and treatment of ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, ME AssociationChair of the UK ME/CFS Biobank Steering Committee.
Research: A longitudinal immunological study for ME/CFS biomarker discovery
What are the UK ME/CFS Biobank team proposing to do with this funding?
They will be studying 110 ME/CFS cases (half severe, half mild-moderate) meeting all of the CDC, Canadian Consensus, and Institute of Medicine, criteria.
They will focus on detailed immunological and clinical phenotypes (subgrouping patients by immune differences, such as the number of different immune cells and cytokines, and clinical differences, such as severity).
Analyse inter-relationships (the relationship between the immune differences and differences in severity/symptoms and changes over time).
Cases will be assessed every 6-12 months, over 5 time points, to record changes in biomarker expression and link these to clinical parameters (whether their condition has gotten better, worse or remained stable) in order to analyse biomarkers at different stages of disease progression and try to identify subgroups.
Cases will be grouped according to trends in symptom severity using scores relating to pain, fatigue and functional status.
In-depth Immunological Profiling (to try and identify biomarkers) will involve:
* Phenotyping Lymphocytes (T cells, B cells and NK cells) and monocytes from the blood samples.
* Measuring the functional response of NK (natural killer) and T cells after stimulation (by a virus, for example).
* Analysing secreted cytokines from the stimulated NK and T cells.
* Genotyping the donors for MHC class 1 (molecules that trigger an immune response to a specific toxin or foreign substance) and KIR (recognise MHC class 1 cells and activates the killing response of NK cells).
They then want to determine whether changes in immune parameters come before, after or predict the changes observed in clinical presentation (changes in symptoms and severity over time).
This will be done by quantifying correlations between immunological biomarkers and by identifying biomarkers associated with changes in ME/CFS clinical status.
Significance of the study
“This study is unique for its strict inclusion criteria and detailed clinical phenotyping, adding specificity and validity to our analysis.”
“This is, to our knowledge, the first long-term prospective study of ME/CFS to incorporate both ambulatory and severe cases and to include comprehensive clinical data and in-depth immunological profiling.”
“This research will contribute to the development of better diagnostic tools and treatments.”
“The inclusion of severe cases through home visits will allow for research on a subset of patients often neglected in ME/CFS studies.”
“Because 1- 2.5 million Americans have ME/CFS, this study has the potential to improve the lives of a large patient population in the U.S. as well as advance the state of the field in the U.S. and internationally.”
“Patients and stakeholders are involved in all aspects of the research.”
More study information, here.
“This is great news for quality research into ME/CFS. The Biobank team has always put the needs of the patient first and it’s fantastic that their good work can now continue”
Cecilia Finnerty, Patient Representative.
“Such wonderful news for people with ME. It is a privilege to serve on the Steering Committee alongside a committed professional team who have such a heart for people with this illness.”
Hannah Clifton, Director, The ME Trust.
“ME Research UK is delighted that the team has been awarded a new grant from the NIH worth $2.1m. The funding will enable further research on those affected by ME/CFS over the next 4 years and will ensure that the UK’s first biobank of human blood samples continues to be a valuable resource for all researchers in the UK and beyond.”
Sue Waddle, Vice-Chair, ME Research UK.
“Congratulations to the London School of Hygiene & Tropical Medicine team for their grant award from the NIH. This is the most important development in UK research into ME this year and all the more so because it shows the international standing of the group. Very well deserved.”
Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London
Individual Community Symposium talks available on the Open Medicine Foundation (OMF) YouTube Channel
The individual talks from August’s Community Symposium on the Molecular Basis of ME/CFS are now available as separate videos in a playlist on OMF’s YouTube channel.
Have a look to check out the speakers you are interested in hearing from, or the panel discussions where they answer questions from our worldwide audience.
The DVDs will be available soon and can still be ordered here.
From the OMF YouTube channel playlist –
The Community Symposium on the Molecular Basis of ME/CFS, sponsored by OMF, took place on August 12, 2017 at Stanford University. It brought together hundreds of researchers, clinicians, patients, caregivers, families, and advocates, and thousands more by livestream.
For more about the symposium, check out the following summaries:
To support ME/CFS research, please donate today:
When you beckon lightning and invite it in for tea
By February 2007, I had been receiving daily Nexavir injections (an antiviral) for six months and I was actually starting to see small improvements in my health for the first time in over two years of being acutely ill. But friends and relatives kept sending me newspaper cuttings of articles about the Lightning Process (LP) curing people with ME. I became under enormous pressure to do the LP (“What’s the harm in trying it?” “Don’t you want to get better?” “It has helped others so it’s worth a shot”). I was only 20 years old, vulnerable because of my desperation to get better, and didn’t know much about Myalgic Encephalomyelitis and what the illness actually was (a multi-systemic, neuroimmune illness). By that time, I also had been gaslighted by so many NHS doctors and private doctors about my illness and symptoms, that I was doubting myself. When so many people disbelieve you, you start disbelieving yourself, despite all physical evidence to the contrary. In the end, I buckled and, although sceptical, I agreed to do the LP. I was so ill and I just wanted to get better.
Ironically, I wouldn’t have even been able to get to the LP practitioner’s house (he was an NHS doctor but did the LP privately) even a couple of months previously but because of the small improvements due to the Nexavir injections, I was able to get down the stairs and lie down in the back of our car to get there. There were consequences for my body but I thought that it would be worth it.
I’m not going to go into detail about the “mechanics” of the LP; other people have debunked the methods far better than I’m currently able to. Back then, I decided to throw myself into the LP and be totally committed to doing it properly. The results, however, were nothing less than disastrous for me.
First, the fully-qualified practitioner artfully gaslighted us (a group of four patients) with what I now know is pseudoscience quackery about M.E.; it was done in such a subtle, convincing and skilful way (even experienced scientists have been taken in by it). Using “science” to explain, he told us how we didn’t ‘have’ an illness but that we were ‘doing’ an illness; it was our thoughts, behaviours, and fears about post-exertional symptoms that were causing us to stop ourselves from living normally and causing us to believe that we had symptoms and to believe that we were ill.
He then put mechanisms into place in my brain, via neuro-linguistic programming, that made my own brain automatically gaslight me constantly and stop any thoughts of symptoms dead in their tracks. He added repetitive gestures/movements/phrases that I had to continually apply to my thoughts and body in order to reinforce the programming. This is brainwashing.
It’s hard to describe being brainwashed. The next six months in 2007 after the LP are still a hazy blur to me. Not only did the neuro-linguistic programming in my brain not allow me to ever mention any symptoms to anyone, I was not even allowed to think that I had any symptoms. I wasn’t allowed to be ill anymore. I pushed and pushed myself, even when in the most excruciating pain, even when I was in heart failure or experiencing seizures or passing out, because they didn’t exist. My illness didn’t exist [even though I was extremely ill, I honestly believed that I wasn’t ill anymore, that I was cured]. It sounds ridiculously idiotic but that’s what brainwashing can do. My body was becoming more and more damaged from the enforced gradual Graded Exercise Therapy that the programming in my brain was imposing on myself. It was completely out of my control; I felt glazed over and not with it.
As per what I’d been conditioned and instructed to do during the LP training, I told everyone that I was no longer ill and that I was recovering. I’m pretty sure that I told all my friends and family that I was in recovery, that the Lightning Process had been successful and had worked. I even had a huge 21st birthday/’I’m better now’ party in a village hall, celebrating recovery from illness. Remembering it now is upsetting. I had the biggest smile on my face the whole time and looked fine to everyone but would have to frequently escape into the toilets where I would almost black out and would collapse on the floor for a while. I was in oxygen starvation from being upright and from heart failure. I was very dizzy and everything was spinning around me because of my very low blood pressure. All my muscles were screaming at me. Nobody had any idea that this was happening to me; the LP programming prevented me from being able to tell anyone or from even acknowledging my symptoms to myself. They didn’t exist because I wasn’t ill. It’s just a haze to me now.
In the following months, I kept on pushing myself, doing insane damage to my body (I pushed myself to the point where I was going on a slow 5-minute walk every few days, which was a huge deal for me considering I had been bed-bound for two years) until one day in August 2007, when my parents were away, I pushed myself too far and went on a longer walk. At the end, my body failed and packed in completely; the six months caught up with me and I collapsed. I was never able to get up again. Ever since, I have been bed-bound, unable to sit up and unable to speak, struggling to breathe and swallow. The permanent organ damage that was done during March to August 2007 during the self-imposed GET due to the LP brainwashing, was devastating. I never recovered from it and my health has only deteriorated since. The hold that the brainwashing had over me was broken pretty quickly and thoroughly that August, thank goodness. But I can’t remember much from those six months.
Today it is being reported in the news that an experimental trial of the LP on children and teens with M.E. has been successful. The fact that the results are based on the children and teens themselves saying that they have recovered, is extremely worrying to me. During the six months that I was brainwashed with the LP, I would have said the same: that I was cured, that I was recovering and that the LP was successful. Those poor children. They are even more vulnerable than I was. What they have been subjected to is nothing short of abuse and should never have been allowed to happen in the first place.
Whatever you do, please don’t send news articles about the Lightning Process to anyone with M.E. It’s a dangerous thing. Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.
The Emotional Toll Of Not Being Heard
By Christina Baltais
This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.
I was out to eat with extended family members. It was my first outing in weeks, since I had been housebound due to symptoms. An outing after a long period of solitary confinement is a rather momentous occasion. I was so grateful to be out of that bed, out of that bedroom, out of that house. The vibrant world that felt so far away, I now found myself immersed in, taking in everything around me like a grateful sponge. I was basically a bear emerging from a den after a long, long hibernation (minus any refreshing sleep).
When I sat down, the usual catch-up conversation ensued. Updates on my health eventually came up. I said that its been my first outing in quite some time after a rough patch. This statement could have been followed by words that were supportive/empowering/neutral, but it wasn’t. This family member went on to comment that I looked fine, and was sitting up just fine at the table right now. I responded by saying that sitting up was actually very difficult for me because I was experiencing a great deal of weakness, and would need to rest after this outing when I got home. This was followed by a comment indicating that if I was sitting up now, why couldn’t I find a job where all I had to do was sit up and type? Why couldn’t I look for jobs like that? Was I not even going to try? After all that schooling, was I just going to waste my life?
You have got to be kidding me. (And some other words that I can’t say.)
A long uncomfortable silence ensued. I felt the familiar pangs of shame, humiliation, and judgement by someone who not only knew nothing about ME, but who also did not want to listen. No one at the table said anything in my defence, their passive silence feeling like implied agreement. I honestly believe this person’s intent was good, but how disconnected from my experience could they possibly have been to not realize the impact of their words and the implications of their statements. I really embrace the importance of talking about my body and ME as a source of education, but the first caveat always has to be that my voice and experience is heard, valued, and respected. This was another case where it clearly had not been. For if anyone was connected to the experience of ME, they would understand the absolute hell a person goes through. The depths of despair and grief this disease drags you through; it was never a choice. The inner turmoil of having a heart that wants the world everyday, but having a body constantly saying no; you forfeit any control over the direction of your life. I chose ME just as much as the millions of people around the world chose ME; we didn’t. I realize I’m preaching to the choir. The point is, I should not have to spend an outing defending and proving in hopes of understanding. I’m not wasting any precious spoons on that. It just hurts so much, still, even after 11 years.
As human beings we all need to feel love and connection. There is a deep-seated need to feel unified, to have approval, acknowledgement, acceptance—-to feel connected with, intimate and loved by, other human beings. When you are already so physically isolated due to illness, situations that make you feel emotionally and socially isolated take it to an entirely different level. It adds another layer of suffering. As if I didn’t feel disconnected and like an outsider enough already. It’s situations like this that make me realize how much during these 11 years I have not been believed or heard. It’s situations like these that make me realize how exhausting it is to constantly be vying for the understanding of others.
What’s even harder is when it comes from family, as this one did. What’s even more disheartening is that this individual is also a doctor. When I was undergoing medical training myself, some supervisors I highly respected displayed a clear lack of understanding about ME. One spoke of how you have to wonder how much of “the behaviour” is learned as it runs in families. I was told to recommend to an ME patient that they strap on a backpack full of weights and jump on a trampoline to increase bone mineral density. It was explained to me how a new physical symptom could only be psychosomatic “as anxiety is common in that demographic so that is the only plausible explanation for that extreme symptom.” Unbeknownst to them, I had ME and these comments illuminated the presumptions, assumptions, and rampant inaccuracies perpetuated by a lack of knowledge in our medical systems. They were extremely disappointing and painful to hear, as I’ve been on the receiving end of all these assumptions and exacerbating recommendations as a patient myself. The lack of knowledge and understanding is systemic; experiencing and bearing witness to how ME has been relegated to the margins of our medical system has been traumatic.
The history of ME’s constant invalidation and abhorrent lack of research funding is disturbing. I wish people would listen. I wish they would trust our experiences and accounts of our own bodies, or in some cases, of our children’s bodies. How healing the words, “I believe you,” would would be for all of us. Sometimes, the emotional toll feels worse than the actual disease itself.
We don’t know when the pathological basis of ME will finally be understood. We should not have to wait for that, to be shown the much needed empathy and compassion which we deserve. Why it takes “proof” in order to actually listen to literally millions of voices saying the same thing over decades of time baffles me. When I think of the millions of lives lived, and some ended, in complete suffering—-without voices, it enrages me. If their suffering had been validated and acknowledged, even if treatment was still not available, would it not have made a difference? The injustice of it all enrages me. Anger is often a signal something is not working, and that means something needs to change. Change is possible and can come soon for all of us. Change needs to come especially for those of us who are unable to use their voices, or even read this.
There are many ways to get involved in creating change for health equality and ME awareness. Be a part of the #TimeforUnrest global impact campaign. This campaign advocates for more recognition, education, research, and funding around ME. You can help advocate for our voices to be heard, by hosting a screening of Unrest in your community. You can join the #TimeforUnrest Facebook group, and share and promote the campaign on social media. For more ideas on how to be a part of the change, click here.
Imagine how different the world’s perception of this disease could be; and for an end to the stigma and misconceptions we’ve all experienced. Imagine with research the pathological basis of ME understood, and treatments being offered. We can make this change happen, and we can make this change happen together.
About the author: Christina, 31, lives in Toronto, ON. She holds a Bachelor’s Degree in Science and has a fine arts background. She became ill with ME while completing her Bachelors. This inspired her to become a naturopathic medical doctor in order to better understand how to heal the body. One month before completing her medical degree, her ME progressed. She has been slowly recovering, using writing, music, art, and nature as a means for processing this experience.
At symposium, researchers and patients examine molecular basis of chronic fatigue syndrome
(Again, if only they would say ME, Myalgic Encephalomyelitis, instead of CFS)
Posted on: August 25, 2017
by Raeka Aiyar, PhD
Ron Davis, PhD, calls chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS) the “last major disease about which we know almost nothing.” That’s because at least a million Americans are debilitated by ME/CFS, and yet no clear cause is known, no treatments are approved; funding, understanding, and awareness are disproportionately limited. Yet thanks in part to a boost in advocacy and fundraising efforts, there is increasing cause for hope, many researchers and patients believe.
Earlier this month, several hundred researchers, doctors, patients and caregivers joined forces for the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME/CFS chaired by Davis at Stanford University, with another 2,700 worldwide joining online. Known for his contributions in biotechnology and genomics, Davis has rerouted his career to tackle this disease and save his critically ill son. He’s brought together an interdisciplinary team of collaborators, many of whom spoke at the symposium. “The Human Genome Project taught us that we can take on a large project like this and succeed,” Davis said.
The event focused on a new understanding of ME/CFS as a molecular disease. Davis’ team has taken this perspective in an omics and big data study of severely ill patients. Wenzhong Xiao, PhD, Davis’ collaborator at Massachusetts General Hospital and Harvard Medical School, presented a preliminary analysis of this dataset, including efforts to use it to define biomarkers and predict causative factors.
Davis presented his technology-driven approach to unraveling ME/CFS, noting that if sequencing technologies had been available at the time, “we would have figured out AIDS in a couple of weeks.” He presented a nanotechnology developed at the Stanford Genome Technology Center that can successfully distinguish patient blood samples from healthy ones, based on their response to stress in the form of increased salt concentration. This presents the potential for a blood-based diagnostic – a transformative prospect for a field reliant on lengthy, subjective diagnoses.
A core issue in ME/CFS is massive energy depletion, so much research is focused on the mitochondria, the organelles inside cells that are responsible for energy generation. Keynote speaker and mitochondrial physiologist Robert Naviaux, MD, PhD, from the University of California, San Diego, suggested that the ‘cell danger response’ to stressors, which prevents cells from returning to baseline function until healing is complete, is prolonged in ME/CFS, which is consistent with observations of reduced metabolism in patients.
Naviaux’s theory also syncs with reports of common infections triggering the development of ME/CFS. In fact, Davis’ cell-free DNA sequencing revealed no exceptional types or levels of pathogens in patients. “It’s not the stressors themselves, but an inability to resolve them and heal afterwards,” Naviaux said.
Stanford immunologist Mark Davis, PhD, presented evidence suggesting that ME/CFS could be an autoimmune disease: using single-cell sequencing, his lab has observed an increase in patient T cells that share a particular target, a signature of an immune response. He said he is investigating what these T cells are targeting.
Nobel Laureate Mario Capecchi, PhD, from the University of Utah, presented a study in mice that shows a connection between the immune system and the brain in a genetic condition that shares some traits with ME/CFS. He also noted how important patient participation is in studying any disease, and how impressed he was with the ME/CFS patient community.
With so much patient engagement, collaboration, and community spirit – not to mention the many theories and new datasets, researchers say it is an exciting time for the field. Many attendees said they were amazed at how much has been accomplished with such scant resources. The event closed with a standing ovation.
A version of this post originally appeared on the Stanford Medicine Scope Blog.
New Scientist: Blood biomarkers may help diagnose chronic fatigue syndrome
(If only they would say ME, Myalgic Encephalomyelitis, instead of CFS)
By Andy Coghlan
Inflammation biomarkers may help doctors diagnose chronic fatigue syndrome (CFS), a poorly-understood condition in which people feeling continually exhausted. These biomarkers could also give new clues to what causes the condition, and how to treat it.
The biomarkers were discovered when a team of researchers screened the blood of 192 people with chronic fatigue syndrome for cytokines – substances used by the immune system to control inflammation. The team compared the levels of 51 different cytokines in the people with CFS and 392 people who didn’t have the condition, and found that 17 cytokines rose in tandem with how bad a person’s CFS was.
“These 17 go up by various degrees in a straight line with severity,” says José Montoya, of Stanford University.
Overall, only one cytokine was consistently higher in people with CFS. But when severity was taken into account, the other 16 emerged from the analysis as being linked to the condition. For example, three-times as much of the appetite hormone leptin, which is part of the cytokine family, was present in people with very bad cases of CFS.
It is not yet clear whether the increase in inflammation markers could be a cause or result of the condition.
However, Montoya says the results support mounting evidence that CFS is a physiological condition, not a psychosomatic disorder. “There’s no question this is something that’s biologically based,” he says. “This is a disease that does not get cured with psychological treatments, counselling or anti-depression drugs.”
Montoya’s team want to use the biomarkers to develop ways to diagnose CFS, also known as myalgic encephomyelitis, and monitor its severity. These cytokines may also help identify new CFS treatments that dampen inflammation, Montoya says.
“The results and how they were obtained are encouraging, as finding markers for subsets and categorisations within the illness is much needed for future research and treatments,” says Chris Armstrong, of the University of Melbourne, Australia.
Armstrong’s own team have found that the fatigue of CFS may be caused by disrupted metabolism and energy production in the body. “The metabolic changes we found suggest a physiological stressor in the body is affecting the cells,” he says. “The cause of that stress is unknown, but is likely to be immune-based given the mounting evidence in that direction – this new study included.”
A team in Norway has had some early success in treating CFS by targeting the immune system and reducing inflammation. They have been using a drug called rituximab to wipe out the white blood cells that may make inflammatory antibodies.
Montoya says it’s unclear what causes the increase in cytokines they have seen in CFS, but he thinks something is triggering inflammation in the body – possibly an infection like the herpes virus.
Journal reference: PNAS, DOI: 10.1073/pnas.1710519114
A letter to Sir Andrew Dillon , Chief Executive, NICE
By Greg Crowhurst
27th July 2017
Sir Andrew Dillon,
Dear Andrew Dillon,
Re : Myalgic Encephalomyelitis
I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article “Supporting people with severe myalgic encephalomyelitis” is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry.
In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder.
The response, in a letter to me, dated March 2nd, from the Co-Chairs of the Expert Reference Group for JCPMH Guide on Commissioning for MUS and the Co-Chairs of the JCPMH claimed that the: “The content of the MUS guide is fully in line with NICE guidelines and with current practice. Should the relevant NICE guidelines alter, or the evidence in this area change, then we will revise the guide accordingly.”
On March 15, NICE assured me that CG53 does not list ME as a somatoform disorder. Therefore the MUS guidelines cannot be correct.
I raised the misinformation in the JCPMH Report with the Department of Health, who confirmed that the Government recognises the WHO classification of ME as a neurological disease. They advised me to take the issue up personally with you.
I am interested to know what you can do to correct the misinformation that the JCPMH has given to Commissioners, especially given the serious potential implication in regard to the current consultation on CG53?
I also have the following questions, given that NICE has confirmed that it does not consider ME to be a Somatoform Disorder:
1. Can you tell me why NICE itself lists ME under “Depression and anxiety disorders” on the IAPT webpage and can you reassure me that it will be removed? That surely is as great a misrepresentation of ME as the JCPMH document, especially given the recognition in CG53 that “the physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus and congestive heart failure .”
2. Can you explain the nature of IAPT’s involvement in ME, especially in light of the the CDC’s recent decision not to recommend CBT and GET?
3. Can you tell me what role, if any, IAPT played in the drafting of the recent CG53 Surveillance Document, which has been heavily criticised by all major ME Charities and thousands of patients for:
* its adherence to the widely disputed CBT/GET paradigm, which has been shown to make patients, especially the most severely affected, much worse. http://stonebird.co.uk/psurvey.pdf
* its many references to the universally discredited PACE Trial
* its reliance upon vague diagnostic criteria that do not clearly identify or separate ME from mental health Chronic Fatigue (WHO F48). A wide definition helps no one; surely it is time to acknowledge that ?
* its scant regard for biomedical evidence
* its extraordinary decision not to update the 10 year old guidance which not only was condemned as “unfit for purpose” at the time, but continue to deny patients, like my profoundly physically ill wife, equal access to health care
* its failure to accurately represent international clinical practice
* its failure to remove outdated treatment recommendations and its pronounced self-circular psychiatric bias.
4. I am very curious to know the composition of the Topic Experts and their knowledge base and impartiality. What biomedical representation, if any, did you have? What clinical input, outside of the biopsychosocial school, was involved for unbiased appraisal of the biopsychosocial content? Can you tell me who the Topic Experts were? Were any of the Royal College’s involved?
5. Can you tell me why NICE only gave stakeholders two weeks to respond to the 56 page Surveillance document, making it incredibly difficult for those people who have ME themselves or full time carers, to have enough time to contribute adequately or at all.
6. Can you explain why NICE has relied heavily on an unfounded psychiatric theory of ME that is nothing more than that, with no real evidence itself, while ignoring the more than 9000 published papers that have been published world wide, detailing the biomedical abnormalities in ME?
7. Can you explain, given the statement in 2014 by Professor Mark Baker, Director of the Centre for Clinical Practice, at a Forward- ME meeting, that the Guideline failed to address the real issues in ME/CFS, does not promote innovation and has had a disappointing impact on specialist care and commissioning issues, why NICE has continued to stick to its outmoded, inappropriate, dangerous guidance?
The Surveillance document does nothing, in my opinion, to challenge the misperception that ME is a mental illness, in fact it’s decision to come off the static list, not for medical reasons, but because of the FITNET CBT/GET Trial reinforces the apparent psychosocial bias of the whole document and attitude of NICE.
If CG53 continues to contribute to a situation where people with ME are:
* misinterpreted as having a mental health issue
* where biomarkers are not sought for and relevant tests are proscribed
* where health professionals of every level are misinformed and their awareness skewed wrongly towards a biopsychosocial interpretation of a serious physical disease with ignored multi-system dysfunction, endangering lives and leading to mistreatment, misinterpretation, neglect and harm
* where the guidance on Severe ME fails to recognise the terrible suffering and multiple physical symptoms patients experience, making it dangerously irresponsible. http://www.stonebird.co.uk/principles%20of%20care.pdf
* where ME is still not separated from and confused with mental health Chronic Fatigue and other poorly diagnosed diseases
* where services are geared towards a psychiatric diagnosis of wrong illness thought and deconditioning
* where patients are offered treatments that are inhuman, cruel, inappropriate and dangerous, because they are in direct denial of their physical reality- the potential for harm is enormous and terrifying in ME
then surely that is in contravention of your obligations under the Human Rights Act and the Equality Act?
The ME Community has been insisting for years that CG53 is not and never has been appropriate for patients with Myalgic Encephalomyelitis; the way forward is for ME to have its own biomedical Guideline and pathway, categorically without psychiatric interpretation and involvement.
CDC removes CBT and GET as recommended treatments for ME/CFS
In America, the Centers for Disease Control and Prevention (CDC) has updated its website information for ME/CFS, improving diagnostic criteria and removing previous recommended treatments – CBT and GET.
While it seems that we must wait to see if this new information is reflected in updated guidance for medical professionals, it is nonetheless being heralded as an important development.
Yesterday, in the UK, NICE published its consultation document which confirmed the recommendation to take no action with regards to the current guideline.
The ME Association is protesting this decision and is currently considering its written response as a stakeholder in the consultation process.
We feel there are many aspects of the current guideline that warrant review including the continued recommendation of CBT and GET.
The ME Association’s online petition ‘The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision‘, has attracted over 4,000 supporters in less than 24 hours.
It will close on Monday 17th July at 5pm, when we will present it to the review committee for delivery to Sir Andrew Dillon (chief executive, NICE guidance executive).
David Tuller in his latest blog, Trial By Error: The CDC Drops CBT/GET, explains in more detail what has happened at the CDC and why this may herald an important and fundamental change for ME/CFS.
We have selected pertinent extracts from his blog, and reproduced them below:
“Just as The Lancet has published more “evidence” for graded exercise, the CDC has moved decisively in the opposite direction. In revamping the information on the part of its website geared toward the general public, the agency has “disappeared” all mention of CBT and GET as treatment or management strategies. Patients and advocates have long pushed for this step, as did Julie Rehmeyer and I in a New York Times opinion piece in March. Although the revised text is dated as having been reviewed on May 30th, it apparently went live sometime during the first week of July. (The CDC has still not revised the pages designed for health care providers, although old information has been removed. The agency calls the illness ME/CFS.)”
“For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website. Given the agency’s stature, she added, the decision could have widespread impact, not just in the U.S. but internationally as well. Many health care providers and institutions here and abroad look to the CDC for guidance in public health matters.”
“So many patients have been made worse by the treatments,” said Dimmock, who became an advocate after her son became seriously ill several years ago. “While there is more to be done, removing these recommendations is a significant step forward in protecting ME patients from harm.”
“In the revision, the CDC website has dropped the agency’s 1994 definition of the illness. The new definition, based on the one proposed in a 2015 report from the Institute of Medicine (now the Academy of Medicine), requires the presence of “post-exertional malaise.” In the 1994 definition, that was only one of eight optional symptoms. The immediate implication of the shift is that GET should likely be considered contraindicated, given the premium this intervention places on steadily boosting activity levels. The form of CBT prescribed in PACE could also be contraindicated, since the ultimate goal of that intervention is likewise to increase activity. (The CDC has not adopted the name proposed by the IOM report, “systemic exertion intolerance disease.”)”
“In addition to symptomatic relief, the revised CDC website suggests such management strategies as a balanced diet, nutritional supplements and complementary medicine.”
“Of course, avoiding “push-and-crash” is what patients already do when they practice pacing. The “push-and-crash” language itself appears to be closely aligned with the arguments provided by the PACE investigators and their colleagues; many patients might describe their experiences differently. Nevertheless, removing the CBT/GET recommendations is a welcome step, if overdue. For years, patients and advocates pointed out the problems with PACE and related research, and also cited the evidence that too much exertion caused harm because of physiological abnormalities, not the deconditioning presumed by CBT and GET. But until now, the agency refused to make the necessary changes.”
“The CDC has another urgent obligation: To communicate with the U.K.’s National Institute for Health and Care Excellence, which develops clinical guidelines for various medical conditions. NICE is currently debating whether or not its recommendations for the illness—which it calls CFS/ME–need to be reviewed; of course, these recommendations include CBT and GET as indicated treatments. NICE is soliciting input this month from stakeholders, but the expert panel assessing the situation has apparently made a provisional decision that no review is required.”
“The CDC has a long history of collaborating with key members of the PACE team and others in the U.K. medical and public health establishments; it is not surprising that prescribing CBT and/or GET should have become standards of care in both countries. It is now incumbent on U.S. public health officials to alert their British colleagues, including those at NICE, that they have just abandoned these longstanding recommendations. They should also explain why they have taken that major step, and why NICE should consider doing the same. (More on the NICE guidelines later this week.)”
David’s latest blog can be read in full, here.
THE SMILE TRIAL (part 1) – Author: johnthejack
Why the trial should never have been allowed in the first place.
There is no evidence the Lightning Process (LP), a mish-mash of elements of cognitive behavioural therapy, neurolinguistic programming, hypnotherapy, life coaching and osteopathy, is anything other than quackery. For decades Phil Parker has made claims for its efficacy, including as a treatment for myalgic encephalomyelitis (ME), but no proper trial has ever supported these claims.
The Advertising Standards Authority (ASA) guidance is clear:
To date, neither the ASA nor CAP has seen robust evidence for the health benefits of LP. Advertisers should take care not to make implied claims about the health benefits of the three-day course and must not refer to conditions for which medical supervision should be sought.
There are people who claim to have been helped, of course, but such claims are made for all bogus therapies. It seems that some people are simply amenable to these interventions. In addition, perhaps there are those who have become stuck in a rut, experiencing a generic chronic fatigue, believing themselves to have ME, and who are helped to kickstart their lives again by the LP. Since there is no biomarker for ME, diagnosis of the illness can be difficult: 40% of patients in an ME clinic may not actually have ME.
There is currently no treatment for ME, so it is understandable that some patients would be easy prey for and would seek more information about interventions hawked about with exaggerated claims.
Parents of children with ME were apparently contacting the charity Association of Young People with ME (AYME) (1) and asking whether it was worth trying the LP. Bewilderingly, Esther Crawley, a Bristol paediatrician and then medical adviser to AYME, instead of telling patients and parents that the LP had no scientific basis and was not worth the considerable amount of money it costs, decided to do a trial. Just as bewilderingly, the SMILE trial received funding and ethical clearance.
First, this trial should never have been allowed. Good science is not just about evidence, but about plausibility, so any such trial immediately gives a spurious credibility to the LP. Asking a question, even sceptically, can offer an implicit endorsement of its premises.
Second, it was the first study of any kind to use the Lightning Process, and it was doing so with children. There had been no opportunity to measure harms: there have been reports of patients who do not respond to the LP who then blame themselves and in desperation contemplate killing themselves. Exposing vulnerable adolescents to such a potential risk would seem particularly irresponsible.
Third, LP patients are made to accept a number of onerous conditions (such as taking responsibility for their illness) before taking the course. It is ethically questionable to ask trial participants to agree to such conditions in order to take part in a trial of a possible treatment for their illness. Making these demands of children would seem even more ethically dubious.
Fourth, patients are told to ignore their symptoms and to resume normal activity (from SMILE study):
‘It has been a bit confusing, I have to say, because obviously we have got the [Lightning Process practitioners] approach, where, “Right, finally, done this, now you don’t need to do the pacing; you can just go back to school full time.” I think, the physical side of things, YP9 has had to build herself up more rather than just suddenly go back and do that’.
Research, backed up by patient surveys, shows the harms caused by exertion in patients with ME (see Kindlon). The recent report to the US Institute of Medicine found post-exertional malaise to be so central to the illness that it suggested a new name: systemic exertion intolerance disease or SEID. Even in disputed clinical trials such as PACE which use graded exercise therapy, patients are monitored by physiotherapists and nurses and plan a gradual increase in activity. Here service providers with no professional qualifications simply tell child patients that after three sessions in three days they should return to normal activity. It is deeply irresponsible.
Fifth, to anyone with genuine ME, that is ME as defined by the International Consensus Criteria, the Lightning Process is a form of torture. It is a physical torture simply to complete the course, again from the SMILE study:
In addition to specialist medical care, children and their parents in this arm were asked to read information about the Lightning Process on the internet. They then followed the usual LP procedure (reading the introductory LP book or listening to it in CD form) and completing an assessment form to identify goals and describe what was learnt from the book. On receiving completed forms, an LP practitioner telephoned the children to check whether they were ready to attend an LP course. The courses were run with two to four children over three sessions (each 3 hours 45 minutes) on three consecutive days.
That is a very heavy burden. The homework is taxing enough but then to undergo 3 sessions of almost 4 hours each on 3 consecutive days is immense. The effort, the intensity and the busyness, would be punishment to anyone hypersensitized by the illness.
It is also a form of emotional torture as fundamental to the process is that patients take responsibility for their health, their illness and their recovery, from here, here, here and here:
LP trains individuals to recognize when they are stimulating or triggering unhelpful physiological responses and to avoid these, using a set of standardized questions, new language patterns and physical movements with the aim of improving a more appropriate response to situations.
* Learn about the detailed science and research behind the Lightning Process and how it can help you resolve your issues
* Start your training in recognising when you’re using your body, nervous system and specific language patterns in a damaging way
What if you could learn to reset your body’s health systems back to normal by using the well researched connection that exists between the brain and body?
the Lightning Process does this by teaching you how to spot when the PER is happening and how you can calm this response down, allowing your body to re-balance itself.
The Lightning Process will teach you how to use Neuroplasticity to break out of any destructive unconscious patterns that are keeping you stuck, and learn to use new, life and health enhancing ones instead.
The Lightning Process is a training programme which has had huge success with people who want to improve their health and wellbeing.
This responsibility is an enduring one: patients must continue to apply the training to their lives after their course and accept that improvement in their health lies entirely within themselves.
To take chronically ill patients, who want only to get better, and spend three days attempting to brainwash them into believing their illness and recovery lie within their control is deeply unethical. Adult patients in the days after enduring this nonsense, blaming themselves for lack of improvement, have been left in such depths of despair as to want to take their own life. To expose chronically ill adolescents to such a danger was extraordinarily irresponsible.
Of course, with the broad criteria and the self-selection involved in determining who took part in the trial, it may well be that not a single participant actually had ME but had instead simply ‘chronic fatigue’. That would be even worse, though: the results may show that the LP has some effect with ‘chronic fatigue’ but would be used to claim effectiveness for patients with ME. Many children who genuinely do have ME could be gulled into paying for this nonsense only, potentially, to do themselves considerable harm.
This trial was unnecessary, gave spurious credibility to quackery and was unethical. It was also very poorly conducted, as will be shown in part 2.
AYME has now ceased trading and its role has effectively been taken over by Action for ME https://www.actionforme.org.uk/children-and-young-people/introduction/
Good News for ME patients in Northern Ireland
From the Hope 4 ME and Fibro Northern Ireland Facebook announcements page, posted on June 1
We have some very important news to share, with permission from the Health and Social Care Board Lead Commissioner for ME and fibromyalgia, Mr. Iain DeBoys.
Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed, ALL 365 General Practitioner (GP) practises in Northern Ireland will receive new updated informative on ME and fibromyalgia, including biomedical research, confirming the very physical nature of the diseases. This decision was agreed, by DOH officials attending the Stormont conference, immediately after the speaker’s presentations!
Further, more detailed information, will be posted as soon as possible, when confirmed.
We expect this breakthrough to happen within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency.
Hope 4 ME & Fibro Northern Ireland, has been bringing world experts and researchers from around the world to N.I. since 2011 to educate decision makers, effectly, it has taken six years to bring us to this welcome and much needed move by the Department of Health.
We can again thank this year’s speakers at our Seeking Solutions for ME and Fibromyalgia’ conference,
Professor Mella, Linda Tannenbaum, David Tuller and Dr. W. Weir, Dr. Christine McMaster and the others before them.
Previous educational conference speakers have included Professor Mark VanNess, Dr. Derek Enlander, Dr.Judy Mikovits, Dr. Vance Spence (MERUK) Dr. Gregor Purdie and Dr.Charles Shepherd (MEA), Dr. Pamela Bell, Louise Skelly (P&CC) and Dr. Joe McVeigh, who have presented educational information and groundbreaking research to the heart of our government and healthcare decision makers in Northern Ireland.
Thanks too to Invest in ME and the Irish ME Trust who have helped and supported our efforts in bringing international experts to Northern Ireland.
A more detailed report is being complied on the speaker’s presentations at our recent ‘Seeking Solutions for ME and Fibromyalgia’ educational event, held in Stormont government headquarters, Belfast, 30/5/2017.
(A short summary of the conference can be found at –
12th Invest in ME International ME Conference 2017
This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME. IIMEC12 will be the twelfth conference and has attracted researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event on Friday 2nd June from 09.00 to 17.30.
The agenda for the day can be found by clicking here.
Speakers for the conference include –
Dr Ian Gibson, Former Dean of Biological Sciences, University of East Anglia
Prof Ian Charles, Director of Institute of Food Research, Norwich, UK
Dr Vicky Whittemore, National Institutes of Health, USA
Professor Sonya Marshall-Gradisnik and Professor Donald Staines, Griffiths University, Australia
Professor Nancy Klimas, Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami, USA
Dr Jakob Theorell, Department of Medicine, Karolinska Institutet, Stockholm, Sweden
Dr Jo Cambridge, Principal Research Fellow Inflammation, Div of Medicine Faculty of Medical Sciences, UCL, UK
Professor Simon Carding, Professor of Mucosal Immunology at UEA-MED and leader of the Gut Biology Research Programme, Norwich, UK
Associate Professor Mady Hornig, Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA
Professor Olav Mella, Haukeland University Hospital, Bergen, Norway
Dr Øystein Fluge, Department of Clinical Science, Haukeland University Hospital, Bergen, Norway
Professor Warren Tate, University of Otago in New Zealand
Professor Ron Davis, Director Stanford Genome Technology Center, Palo Alto, California, USA
Happily, for those of us unable to attend, the talks will be recorded and available to purchase on DVDs.
12th May is ME Awareness Day
The Ambiguous Term “ME/CFS” Has Become a Problem for Research
JERROLD SPINHIRNE – WEDNESDAY, 10 MAY 2017
For International Awareness Day, May 12, 2017
Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research of the neurological disease myalgic encephalomyelitis, ME, ICD G93.3.
Additionally, patients diagnosed with chronic fatigue syndrome, CFS, and not meeting the more specific diagnostic criteria for ME, are also adversely affected by the use of the mixed “ME/CFS” term in research. Non-ME CFS while combined with ME under a single term cannot rationally be researched to identify other coherent patient groups, which could then be renamed and removed from the more encompassing CFS group. This rational strategy for resolving the current impasse in research was called for in the 2011 ME International Consensus Criteria paper, published in the Journal of Internal Medicine, and the 2012 International Consensus Primer, based on the ME-ICC.
The IC Primer states:
“The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”
The 2012 IC Primer:
Patients can use this convenient guide, prepared by the MEadvocacy organization, to determine if they meet the ICC criteria for ME.
Understanding the problems created by combining the two disparate terms ME and CFS together as a single mixed diagnosis “ME/CFS” requires an understanding of how the two terms originated.
The term “encephalomyelitis” was used in a 1956 paper by Dr. A. Melvin Ramsay describing an outbreak of infectious disease at the London Royal Free Hospital in 1955, “Encephalomyelitis simulating poliomyelitis,” published in the Lancet. In the same May 26, 1956 issue of the Lancet, an editorial attributed to Dr. E.D. Acheson suggested use of the name “benign myalgic encephalomyelitis.”
“The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term “benign myalgic encephalomyelitis” may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndrome characterized by (1) symptoms and signs of damage to the brain and spinal chord, in a greater or lesser degree; (2) protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp; (3) emotional disturbances in convalescence; (4) normal C.S.F.; (5) involvement, in some variants, of the reticuloendothelial system [part of the immune response system]; (6) a protracted course with relapses in severe cases; and (7) a relatively benign [death was not immediate] outcome. It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria.”
It is important to note that fatigue of any kind is NOT mentioned in this early description of ME, based on the systematic clinical observation of patients with related symptoms identified during outbreaks of disease.
Acheson, writing later in a 1959 paper based on clinical observations made during 14 related outbreaks of disease, again did not mention fatigue of any kind as a commonly observed or diagnostically useful symptom:
“All the outbreaks shared the following characteristics: (1) headache; (2) myalgia; (3) paresis [muscle weakness, partial paralysis]; (4) symptoms or signs other than paresis suggestive of damage to the brain, spinal cord or peripheral nerves; (5) mental symptoms; (6) low or absent fever in most cases; (7) no mortality. In addition, (1) a higher attack frequency in women; (2) a predominantly normal cerebrospinal fluid, and (3) relapses have occurred in almost all outbreaks. In eleven of the fourteen epidemics symptoms which suggest activity of the disease have persisted for months or years in a few cases, and in eight instances there was an apparent predilection for the nursing or medical professions. Lymphadenopathy was a feature in four outbreaks.”
Neither does Dr. Melvin Ramsay in his 1986 case definition of ME mention fatigue of any kind:
“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:
(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.
(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.
(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)
(4) A characteristically chronic relapsing course.”
In the last paper published by Ramsay in 1990, and with Dr. Elizabeth Dowsett, this was the ME research case definition they used:
“We adopted the following clinical criteria for investigation of ME: a syndrome commonly initiated by respiratory and/or gastro-intestinal infection but an insidious or more dramatic onset following neurological, cardiac or endocrine disability occurs. The pathognomonic features are: a complaint of general or local muscular fatigue following minimal exertion with prolonged recovery time; neurological disturbance, especially of cognitive, autonomic and sensory functions; variable involvement of cardiac and other systems; a prolonged relapsing course.”
The symptom of post-exertional muscle fatigue used here is very different from the symptom of perceived general fatigue, the subjective feeling of tiredness, that is used as the basis for making a CFS diagnosis. Muscle fatigue can be objectively measured. Perceived, general fatigue can only be evaluated by psychometric questionnaires – an important distinction.
People with ME may experience episodes of profound fatigue, but many people with ME do not have a feeling of persistent, chronic fatigue. Dr. Elizabeth Dowsett said in an 1992 interview:
“One of the most striking features of ME is that the patient is not tired all the time! Extreme and sudden variability of energy levels both within and between episodes of illness differentiate this syndrome from other diseases associated with fatigue. One can only deplore the current fashion in the United States as well as the United Kingdom to redefine and rename a disability which has been clearly described in the literature for at least 100 years.”
“There is nothing to be said in favour of the American acronym CFIDS (chronic fatigue immune deficiency syndrome) with its connotation of a primary immune dysfunction. The term ‘chronic fatigue syndrome’ recently adopted in this country also is nonspecific and non-descriptive because most of the definition is based on a vast number of exclusions (some of which, for example, endocrine disturbance, are actually found in ME).”
“‘Post-viral fatigue syndrome’, another British name, describes one essential feature (the association of the illness with viral infection) but gives the impression that the infection was antecedent rather than, as we now know, persistent. I prefer to use the more specific term ‘myalgic encephalomyelitis’ as it emphasizes the essential encephalitic component of the illness, the muscle pain, and the close clinical and epidemiological similarity to poliomyelitis.”
To read the rest of the article, please go to –
25% ME Group – ME Awareness (May) Information –
The care needs of people with Severe ME –
With so much misinformation, misinterpretation and misunderstanding about ME in the public domain, it is important that Carers and Agencies providing care are in receipt of accurate and safe information on how to provide care in the best way.
First and foremost it is essential to know that Myalgic Encephalomyelitis is a serious physical disease, with complex multi-system dysfunction.
Enormous harm can be done by someone who is not fully aware that the person with Severe ME is seriously physically ill and that they are not going to be “made well” by changing their thoughts or increasing their activity in a graded way.
When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The physical frailty and the high risk of deterioration, of someone with Severe/Very Severe ME, cannot be exaggerated nor adequately described. You need to take the greatest of care.
The most important aspect of caring for a person with Severe Myalgic Encephalomyelitis (ME) is the ‘how’ of caring; the basic core beliefs the carer has about caring and the person to be cared for. What the carer believes will subtly or overtly impact on how caring is provided and has a huge effect on the relationship, quality of care and health of the person receiving the care.
The basic principles behind Severe ME-aware care are:
1. Never define the person by their behaviour.
2. Acknowledge the serious and severe physical illness underlying the person’s symptom experience.
3. Adhere to a strictly defined definition of ME (The International Consensus Criteria).
4. Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.
5. Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.
6. Honour what the person says regarding their physical and cognitive needs.
7. Listen to the person and to only interact at the correct time in the correct way. We call this the MOMENT approach, honouring the severe illness the person has whilst maximising the opportunity to engage safely in order to help, not harm them, when undertaking all care needs.
8. Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.
9. Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. A flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred not goal oriented approach at all times is critical. Being aware of the after impact of any interaction is essential; that even something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.
10. Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. Psychiatry has no right to first hand intervention in this disease which requires a biomedical response and care pathway.
It is vital to ensure that that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.
Why a Moment by Moment approach is required
When your whole body and head is on fire with multi- level pain and you have unimaginably complex multiple system dysfunction, resulting in complicated hypersensitivities and massive indescribable cognitive disruption, blanking out your mind, with a high risk of deterioration, just by someone being in the room with you, a Moment by Moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve.
If you take the first letters of the word “M.O.M.E.N.T, you could say that it means:
O the opportunity
M to meet
We call this the MOMENT approach.
Maximising the Opportunity to Meet Need Tenderly
If you are to care for someone at this level of illness, you must learn what is tolerable to the person, when it is more tolerable, if at all and how you might safely approach the person and engage in practical care such as cooking, cleaning, washing, shopping or more intimate care such as helping the person eat, wash, dress, move, urinate or evacuate their bowels.
Every instant counts when you are caring for a person with Severe ME. Every single movement you make, every noise you make, every activity you undertake impacts them.
In order to truly interact in the right way, you need to be committed to learn more about yourself and develop real body awareness, not only when you are with the person but when you are anywhere in the home, so that you perform everything gently, carefully, with awareness of the potential impact.
You must also develop an acute awareness of sound, movement, light, chemical sensitivity , so that you can see, feel, recognise danger instantly and so help protect the person from harm and further deterioration, by reacting quickly and effectively.
You need to notice how you do things, then determine whether you can be more careful in the way that you do them in future, so that they perhaps take less time or can be done with more care to keep noise to a minimum. It might involve slowing right down and taking longer than normal, especially in first hand, direct care.
It is surprising how loud footsteps can be and how easy it is to bang a cupboard door too loudly or cut food too noisily without any awareness that it could be quieter. Obviously no noise at all is impossible to achieve; nevertheless you must grow in awareness of how every single thing you do might inadvertently cause pain and increase in symptoms.
You need to consider how you are going to avoid chemical, perfume exposure and unnecessary harm from light; this is not as easy as it sounds.
You need to be incredibly sensitive to the person when you are moving around the home, especially the room they are in and even more especially when you are close to them. The slightest quick movement or action, cough or head scratch, unnoticeable to you possibly, can cause tremendous pain and trigger other symptoms.
With Severe ME, natural responses are foreign now.
Nothing seems as it is, for the body does not respond in the normal way to the expectations of most people in the ordinary world. Here you enter a different landscape; the terrain here needs careful investigation and traversing. You may need to adjust your assumptions and presumptions.
• rest does not bring relief
• friendly chatting and conversation are often if not always intolerable
• information is not easily received, understood or remembered
• movement leads to deterioration
• touch hurts
• ordinary light is painful to agonising
• your favourite perfume or deodorant can nauseate and harm
• even quiet noise can torment and at worst paralyse
• movement can irritate and confuse, can even cause pain
• communicating need is not easy
• speaking may even be impossible
• the possibility even of simple movement may come and go or not materialise
• the way you cook things may not be appropriate, delicious -seeming food to you, is simply not what it seems and may be inedible or harmful to the person, especially if you add ingredients not tolerated or cook with the wrong method
• gifts, unless incredibly well thought through, can lead to illness deterioration
• visitors calling unannounced may be far too much to deal with
• the telephone ringing with a friendly message may be an unintentional torture
Everything is turned on its head with Severe ME, where there is not necessarily even enough energy in the body for organs to work effectively and even things kindly, yet ignorantly done, are dangerous.
The result is isolation, from normality and people, on every level. Any interaction can literally be a torment and potential for distress and deterioration.
Nothing is simple; it is rarely obvious what to do. Follow any instructions or guidelines the person provides.
Your focus must be on the person and how they are experiencing your interaction with them. You need to be present mentally, emotionally and physically to the person. You need to be able to sense when the person cannot tolerate your contact or presence. They may not necessarily be able to tell you directly. Some people cannot speak. For others it may be unpredictable. You must learn the subtly of communication and develop understanding together.
With Severe ME everything is unpredictable and relentless, you simply cannot control the illness itself and neither can the person experiencing it themselves.
It is easy to get frustrated when the action you want to do, seemingly quite simple and easy for a well person, is impossible in that moment for the person with Severe ME.
It is a matter of waiting, looking, hoping for the best moments to arise before you can act. It is essential that you understand that the symptom experience is beyond the person’s control or you may fall into false expectations or wrong interpretations. The relationship will deteriorate if you do not understand or at least accept their inner reality, the complex, intolerable symptoms they are experiencing, the difficulties with the environment and even with you, being near them.
There is nothing more wonderful than connecting and flowing together, especially in difficult circumstances and feeling good about yourself as a carer. If you can get it right you can bring comfort and reassurance, trust and valuing to both your lives. You can genuinely help, not inadvertently harm.
Adapted from “Severe ME : Notes for Carers”
by Greg Crowhurst
Ref : Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011
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