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Following suggestions from visitors to the website, this page has been set up to allow me to give details of items about M.E. and related issues, as well as other subjects, that will hopefully be of interest to those who visit the site. Do let me know what you think!


July 2017

CDC removes CBT and GET as recommended treatments for ME/CFS


http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/

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.
 



July 2017

THE SMILE TRIAL (part 1) – Author: johnthejack

Why the trial should never have been allowed in the first place.


https://johnthejack.com/2017/07/02/the-smile-trial-part-1/

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/
 



June 2017

Good News for ME patients in Northern Ireland


From the Hope 4 ME and Fibro Northern Ireland Facebook announcements page, posted on June 1

https://www.facebook.com/Hope4MEFibro/?hc_ref=PAGES_TIMELINE&fref=nf

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 –
http://hope4mefibro.org/seeking-solutions-conference/)
 



June 2017

12th Invest in ME International ME Conference 2017


http://www.investinme.eu/IIMEC12.shtml

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.
 



May 2017

12th May is ME Awareness Day

The Ambiguous Term “ME/CFS” Has Become a Problem for Research


https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-has-become-a-problem-for-research/1527608180644089/

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 2011 ME-ICC:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

The 2012 IC Primer:
http://www.name-us.org/defintionspages/DefinitionsArticles/2012_ICC%20primer.pdf

Patients can use this convenient guide, prepared by the MEadvocacy organization, to determine if they meet the ICC criteria for ME.
http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

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.

Myalgic Encephalomyelitis

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.”
http://www.name-us.org/DefintionsPages/DefinitionsArticles/Lancet1956.pdf

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."
http://www.name-us.org/DefintionsPages/DefinitionsArticles/Acheson1959.pdf

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
."
http://www.name-us.org/DefintionsPages/DefRamsay.htm

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."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/

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
."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/?page=1

To read the rest of the article, please go to –
https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-has-become-a-problem-for-research/1527608180644089/
 



May 2017

25% ME Group – ME Awareness (May) Information –

http://www.25megroup.org/campaigning_awareness.html#aware17

The care needs of people with Severe ME –
http://www.25megroup.org/Campaignging/Awareness%202017/CARE%20NEEDS%202017%20A3.docx

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:

M aximising
O the opportunity
M to meet
E each
N need
T tenderly

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.

Here :

• 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
http://stonebird.co.uk/Notes/index.html

Ref : Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011
http://www.meassociation.org.uk/2011/07/myalgic-encephalomyelitis-international-consensus-criteria-journal-of-internal-medicine-20-july-2011/

Article produced by
Stonebird
www.stonebird.co.uk
The 25% ME Group www.25megroup.org
 



April 2017

Banned from sleeping


From The TYMES Trust website

http://www.tymestrust.org/pdfs/ttbannedfromsleeping.pdf


Hi, I’m 15 years old.

Last October I suffered a huge ME relapse. I had been under the care of a clinic, but their advice seemed to make me worse. I desperately try not to sleep through the day, as I was told by the clinic. I’m not sure if this is right, though. Should I try sleeping in the day, just a little? I really need some advice I can trust. I have stopped trusting the clinic, as their advice just doesn’t help me.

Hannah Barnes


Hi Hannah,


Rest assured, you are not alone in finding this advice counterproductive. We receive many such comments.

Sleep problems in classic ME have for many years been known to be caused by disturbance of the hypothalamus gland in the brain, which controls automatic functions of the body. One of the main problems appears to be that, like you, people with classic ME are often counselled not to sleep in the daytime even if their brain is telling them to fall asleep. This advice seems to be given out of a misunderstanding that they will not sleep at night if they have slept in the daytime. However, because of hypothalamic disturbance, they often can’t sleep properly at night anyway, so they can then end up even more short of sleep.

Dr Darrel Ho-Yen once stated that patients who seem to do best are those who take naps. Consultant microbiologist Dr Elizabeth Dowsett, one of the most knowledgeable authorities on ME (now retired) always talked of ‘living within the rhythm of the brain’ as it works to heal itself. That means following the brain’s signals. Paediatrician and ME specialist Dr Alan Franklin maintained that it was downright cruel to wake children with ME when their brain had at last managed to sleep.

Although such a sleep pattern can be inconvenient, often necessitating a reorganisation of times spent studying and doing other activities, it does seem to assist the body to return to a more conventional sleep/waking cycle over time.

In Mummies Aren’t Supposed To Cry (www.tymestrust.org/pdfs/mummiesarent.pdf) you can read an account by a mother describing how she and her son managed his difficulties sleeping. I heard from her recently with details of his substantial achievements and exciting life these days.

The worst thing can be the stress caused by worrying that one ‘should’ be asleep at night. I believe that the sleep police have a lot to answer for, using terms like ‘sleep hygiene’ as though one is dirty if one cannot sleep during the prescribed hours. Such stress prevents relaxation and makes it less likely that sleep will come. You will probably be amused by the poem about sleep that I once wrote, also in Mummies Aren’t Supposed To Cry.

With best wishes,

Jane

Jane Colby FRSA
Former Head Teacher
Executive Director
The Young ME Sufferers Trust


Dear Jane,


Thank you so much for your email!! I had tears of relief streaming down my face.

I have just read the publication you suggested, so much of it was so familiar.

I have only just started to respect my ME, after 2 years of following the clinic’s advice.

Your poem is so funny, and yet so meaningful! It will help me get through tonight if I wake up.

Thank you so much for replying, you have no idea how much it has helped!

Hannah
 



April 2017

Stanford researcher develops tools to understand chronic fatigue syndrome


http://scopeblog.stanford.edu/2017/03/30/stanford-researcher-develops-tools-to-understand-chronic-fatigue-syndrome/

(I just wish they would call the illness by its proper name: ME, Myalgic Encephalomyelitis)

Holly MacCormick on March 30, 2017

Many scientists care deeply about their work. Yet for researcher Ron Davis, PhD, the drive to decode the mystery of chronic fatigue syndrome is all-encompassing: Davis’ 33-year old son, Whitney Dafoe, has been bedridden with the disease for nearly four years.

Since his son fell ill, Davis has worked to uncover the molecular mechanisms and biochemical processes that underlie chronic fatigue syndrome, or myalgic encephalomyelitis. In 2013, Davis launched the Stanford Chronic Fatigue Syndrome Research Center with the aim of definitively diagnosing, treating and curing CFS.

Now, Davis and his team are making strides toward creating a diagnostic test for CFS. They’ve crafted a nanofabricated cube, about the size of a sugar lump, that uses 2,500 electrodes to sense electrical resistance in human cells. A recent Nature article highlighted the work:

“When Davis exposed immune cells from six people with chronic fatigue syndrome to a stressor — a splash of common salt — the cube revealed that they couldn’t recover as well as cells from healthy people could. Now his team is fabricating 100 more devices to repeat the experiment, and testing a cheaper alternative — a paper-thin nanoparticle circuit that costs less than a penny to make on an inkjet printer.

The goal is to figure out exactly what is going wrong that current tests can’t identify.

“My son can’t read. He can’t listen to music. He can’t talk. He can’t write,” Davis said in the article. “But when the doctor does a battery of tests on him, they all come out normal.”

The preliminary findings of the nanofabricated cube study, and the next round of tests using a cheaper version in the form of a thin nanoparticle circuit (shown above), could help pave the way toward a test for CFS.

“This is not an academic exercise,” Davis said. “My son is in bad, bad shape.”
 



March 2017

Science, Politics, .......and ME: A health scandal in our generation


http://amzn.eu/i0e59tt

by Dr Ian Gibson (Author), Ms Elaine Sherriffs (Contributor)

The Dedication –


To all patients suffering from ME and their families and carers. You have been let down by governments, healthcare departments, the media and by those in positions of influence who could have made a difference but have totally failed you.

From the back cover –

Few diseases can have been so maligned by false information, so manipulated by an insidious establishment-controlled ideology, or so poorly dealt with by those holding the purse-strings for research into the disease, than Myalgic Encephalomyelitis (ME).

This book examines a scandal in our generation – a scandal still being played out by corrupt, apathetic, inept or ignorant attitudes in governments and Medical Research Councils and health services.

One of the authors (Dr Ian Gibson) in his ‘ Retirement’ has written this book with a political friend (Elaine Sherriffs). Ian Gibson has a passing interest in the current political scene across the world and regularly speaks on these issues. When it comes to universal health, he has pointed out on many occasions that governments often ignore scientific evidence. ME, as described in the book, is a major problem where evidence is relegated to psychiatric explanations. It is a desperate need for scientists as far as health issues are concerned to look for biomedical evidence and ME is a major example. This book describes the political manoeuvring which features just like those in the TV programme The House of Cards in the USA & the UK which described the games that are played in both parliaments. He has previously addressed these problems in an early book in 1981 – called ‘Class, Health & Profit’.

Ian and Elaine have penetrated the murky world of politics which features in the world of ME. It is long past the time to treat this as a serious illness and the need for serious biomedical research. This will only come about when politicians and the media stop trivialising the illness.

Science, Politics …… and ME is a book which will serve as a reference for the dark times, when patients were ill-served by the clash of interests between truths and untruths. It is also a book which comes at a time where a brighter future may be in the making for people with ME and their families.
 



March 2017

Two ME Films


There are two short films about ME that have recently been produced and I would recommend them to you.

A 10 minute film on ME was shown on Carte Blanche, South Africa’s longest-running TV investigation show, on 20 February 2017. It has won plaudits from around the world for its straight talking about this illness, and choice of interview subjects – particularly Dr Ron Davis and David Tuller. The UK ME Association has made the film available on it’s website and you can watch it by clicking here.

In the other film, which lasts for 18 minutes, Dr Ron Davis presents an ME/CFS research update from his lab at the Stanford Genome Technology Centre in California, USA. The Centre has made significant breakthroughs towards understanding the molecular mechanisms of the disease and is now in a position to test chemical compounds for treatment.

The film is available to watch on YouTube, thanks to the Open Medicine Foundation – click here – and you can read a transcript of all that was said on the ME Association website by clicking here.
 



February 2017

Three New Items On The Margaret Williams website -

The Cost of Collusion?
(8 February 2017)
Margaret Williams
http://www.margaretwilliams.me/2017/cost-of-collusion.pdf

The Power Of Propaganda? (4 February 2017)
Compiled by Margaret Williams
http://www.margaretwilliams.me/2017/power-of-propaganda.pdf

Letter to the Countess of Mar from the Public Accounts Committee Chair (1 February 2017)
Meg Hiller MP
http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
 



February 2017

Opposing MEGA: Our Covering Letter to Mainstream Research Funders


https://opposingmega.wordpress.com/2017/01/31/our-covering-letter-to-mainstream-research-funders/

The OMEGA petition organisers wish to thank all supporters who have added their names to the OMEGA Petition as well as heartfelt comments about the way in which they as the service recipients of ‘ME’ research wish to see that research being carried out in their name. We would like to think the OMEGA Petition can stand as a documented challenge to ‘MEGA’ illustrating that those who support ‘MEGA’ do not have the mandate they claim. The following letter has been sent to many researchers and interested parties so that they cannot claim to be ignorant of this challenge. We will only update if or when a significant change occurs which relates to this petition. The petition therefore remains open for the time being. We invite everyone to continue to share and sign the petition in support – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Letter to Mainstream Research Funders

FAO: All persons with responsibility for research grant applications

CC: Any persons with an interest in the above

NB: This is a serious matter of public interest so please acknowledge receipt of this letter and note that correspondence will be in the public domain
To whom it may concern,

This letter is to inform you that a majority of people reject calls by the M.E./CFS Epidemiology and Genomics Alliance (a project of the UK CFS/ME Research Collaborative) to support their forthcoming submissions for funding for their research proposals.

MEGA created a petition addressed to ‘mainstream research funders’ on a public petition site and this petition was publicised on internet sites of CMRC member charities representing ME patients, from 28th September 2016.

A number of valid concerns about this call for funding were not allayed by subsequent correspondence with members of the board of CMRC. Thus a counter-petition was posted on 19th October on the same petition site as used by MEGA to provide an option to register rejection of calls for mainstream funding of their study proposals.

Supporters of the counter-petition were described by a charity representative member of the CMRC Board as ‘a vocal minority’ and the Chairman of the board wrote that they were ‘baffled’ by opposition to the MEGA proposals, in spite of having read carefully considered and in some cases, quite detailed explanations of the various concerns.

The ‘MEGA’ petition was open for 35 days. It closed on the evening of 2nd November and has 2,542 signatures. The counter-petition ‘Opposing MEGA’ had 2,912 signatures at 35 days (currently over 3,000). This shows that more people rejected the call by MEGA for mainstream research funding than supported it within the same amount of time.

It is understood that the MEGA petition was a means to demonstrate the weight of support from patients for forthcoming grant applications. In that respect it has not succeeded as it is now a matter of public record that the majority of patients have cast a vote of no confidence in MEGA and reject calls for mainstream research funding applications by an alliance formed by the CMRC.

It will not suffice for MEGA or CMRC to reassure research funders that patients are represented on their steering and monitoring committees and advisory groups or that patient concerns will be taken on board. Such measures have not served the best interests of ME/CFS patients over decades past and there is no reason to suppose there will be any change in this position going forward. Indeed great harm has been caused to many ME/CFS patients with the same establishment charities involved as are currently represented in the CMRC.

In addition we are informed that the children and young persons representation will be taken from an existing group working within the University of Bristol. We must assume that this group of young people will already be involved in other trials being conducted by MEGA applicant, Professor Esther Crawley – MAGENTA and FITNET-NHS – both of which are already embroiled in controversy. These young people will, therefore, be already subjected to bias and influence.

Dr. David Tuller, academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, explained:

“Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGA precisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)”

The PACE trial has been debunked internationally by leading clinicians and scientists, and 42 experts signed an open letter to The Lancet, condemning its egregious flaws and noting that they “have no place in published research.” The PACE trial has even been presented as a case study of bad science in graduate epidemiology seminars and at major scientific gatherings. MAGENTA relies on the PACE trial as evidence of efficacy of graded exercise therapy in adults. The PACE trial results have been shown to have been grossly exaggerated to claim positive effects of psycho-behavioural therapies, and in any case, had shown null effect at long-term follow-up. FITNET-NHS relies on a Dutch study, with methodologcal flaws, and which showed null effect of the treatment trial at long-term follow-up. As the MEGA team have consistently refused to answer all questions about PACE, and are even relying on it for funding of current treatment trials, we submit that the MEGA applicants are attempting to build a research project on crumbling foundations and should receive no further funding under any guise.

We would draw your attention to a number of parliamentary questions raised by Kelvin Hopkins MP regarding matters of conduct, policy, and funding, as these relate to individuals and organisations, including patient charities, involved in the MEGA proposal and on the board of the CMRC, and reflect the central concerns raised in the Opposing MEGA petition and the conclusion that we have no confidence in MEGA.

It is imperative that research funders are aware of the majority view in response to the request by MEGA for support of their proposals and the legitimate concerns behind this majority view. This is, of course, particularly important where those funds are from the public purse and when better value for money can be gleaned by using existing resources.

As Prof Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, stated on the Phoenix Rising Forum:

“Of course it would be nice to have a big study of lots of things in lots of patients but it needs to be done carefully and it will cost a vast amount of money to do that. I think it likely that the money would be better spent in other ways. We already have a Biobank resource and a method for recruiting cohorts – which could be improved but is a good start. I strongly suspect that several metabolomic and genetic and other projects are already being set up with reasonable sized samples elsewhere in the UK”.

The international scientific and clinical community is on the verge of establishing biomarkers for accurate diagnosis of this complex disease, known for research purposes as ME/CFS, and it would be foolhardy to fund a fishing expedition at this stage. However, we must emphasise that our petition is not primarily concerned with the details of the protocol, but rather with the insurmountable and serious matters of research conduct and integrity.

Patients and professionals alike were misled over the PACE trial from its inception to the present day. Children are among the patients suffering daily from the consequences. We cannot afford as a civilised society to repeat nor perpetuate this mistake.

Thus, we submit this letter and Opposing MEGA petition, along with its comments, as an outright rejection of calls by CMRC/MEGA for mainstream research funding and request that you ensure this letter and content is brought to the attention of all personnel in your organisation with responsibility for research funding applications.

We are willing to provide you with further information upon request. We would strongly recommend that you take note of the comments on the petition, the various updates posted and the Opposing Mega website
https://opposingmega.wordpress.com/

Yours faithfully,

A. Kirby

on behalf of

Organisers and signatories to the Opposing MEGA counter-petition –
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Opposing MEGA rejects this petition by MEGA to mainstream research funders –
https://www.change.org/p/support-this-huge-biomedical-m-e-cfs-study-and-its-application-to-major-uk-research-funders
 



January 2017
 
A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016

 
This is a long document, so I have just posted the first section. To download and read the whole document, please go to –
 
http://www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 
A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016
 
This document is in 4 sections: Professors Wessely, White, Sharpe and the PACE Trial
 
Compiled by Margaret Williams
 
17th December 2016
 
To assist the reader, as this document is quite lengthy, notable sentences have been highlighted in yellow.

 
In his power-point presentation on 29th June 2011 about the PACE Trial for the “Forward ME” meeting at The House of Lords, Professor Malcolm Hooper referred to the ME situation in the UK as: “The 3 Ts – Travesty of Science; Tragedy for Patients and Tantamount to Fraud”.
 
The tragedy for ME patients in the UK existed long before the PACE Trial: it has existed for the last three decades. Can it be attributed to the zealous proselytizing by certain psychiatrists – all of whom are involved with the medical insurance industry and who deem themselves “experts” on ME/CFS - to convert non-believers to their own beliefs about the nature of it?
 
As in “Quotable Quotes Updated” (which provided examples of unhelpful comments about people with ME/CFS from 1988 to 2005 emanating from psychiatrists Professors Simon Wessely, Peter Denton White and Michael Sharpe and can be accessed at www.margaretwilliams.me), this continuation provides more illustrations of their published views on ME/CFS from 2006 to 2016. It is not comprehensive but merely representative.
 
In order to understand the effect on patients with ME of the Wessely School’s beliefs and their total disregard of the mainstream biomedical evidence-base that has been shown to underpin the disorder (evidence which vitiates their beliefs), it is essential to be aware of that evidence-base, particularly of the widespread inflammation and the proven immunological, cardiovascular, endocrine, gastrointestinal and musculoskeletal dysfunction, summaries of which can be accessed at www.margaretwilliams.me
 
One would have expected that these psychiatrists would have kept up-to-date (which doctors are required to do) but their views have remained intransigent (ie. They continue to insist that ME/CFS is a behavioural disorder and that patients who believe they suffer from a physical disease perpetuate their own “perceived” ill-health).
 
Although some of these quotations are from ten years ago, they were published during the planning/execution of the PACE trial, whose interventions of CBT and GET were predicated on these psychiatrists’ beliefs.

To continue reading the document, go to
 
www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 



January 2017
 
A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”

 
https://qz.com/884658/are-chronic-fatigue-syndrome-ibs-and-crohns-disease-really-all-in-the-mind-a-psychosomatic-disease-diagnosis-is-a-doctors-way-of-saying-i-dont-have-a-clue/
 
Written By Jamison Hill
 
For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”
 
I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.
 
The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.
 
Similar theoretical concepts like somatoform disorder suggest that the body can only cope with a finite amount of mental factors before physical symptoms, like headaches, begin to show. But there is a substantial difference between an acute problem like a stress-related headache and claiming that a serious chronic illness is psychosomatic. With the exception of chronic migraines, a headache is generally considered to be an acute symptom, not a chronic illness.
 
The theory of psychosomatic illness is flawed. Many serious illnesses are initially tagged as psychosomatic because they are too complex for doctors to offer a singular explanation or because the patients have no physical symptoms. There may be a connection between the body and mind—the brain is, after all, an anatomical feature of the body—but this does not mean that physiological diseases can be manifested through mental factors. For example, a 2007 commentary published in the Journal of the American Medical Association concluded that while stress can be a factor in some diseases, “a causal relationship” could not be found.
 
Dr. Dale Peterson, former president of the Oklahoma Academy of Family Physicians, is even more adamant that physiological disease cannot be caused by mental factors. “Psychological and sociological dynamics may predispose an individual to illness or cause an illness to be much more severe, but other factors must be present to trigger the condition,” he says.
 
The idea that a disease can be generated from the mind not only lacks scientific evidence—it is belittling to those who suffer from physical illnesses. As Dr. Peterson explains, for someone in the medical field to say a physiological illness is psychosomatic is merely “a professional way of saying I don’t have a clue!”
 
I contracted myalgic encephalomyelitis after a bad case of mononucleosis in 2010 (an illness often jokingly referred to as the “kissing bug”). Within the first year, my condition had deteriorated to the point where I could no longer take care of myself; I had become bedridden, and eventually lost my ability to speak, eat, tolerate light, or lift my head off the pillow. Through a daily regimen of oral anti-viral medication and IV treatments, my health eventually started to improve. I can now speak polysyllabic words, chew soft food, and sit up in bed to see the sunlight streaming across my room.
 
But these improvements have had nothing to do with changes in my mental state; I did not will them to happen. Instead, my body was given the proper medicine to improve its physiological impairment.
 
Regardless, many doctors still disregard my ailments as some form of psychosomatic illness. But sometimes technology just isn’t advanced enough in order to reveal the true underlying physical symptoms behind a disease. For example, until the invention of the MRI in the 1970s, multiple sclerosis was believed to be a form of “hysterical paralysis.” Likewise, some forms of autism, particularly in children, were once thought by some psychologists to be due to a lack of maternal nurturing. Similarly, until inflammation could be measured, asthma was also commonly blamed on overbearing mothers. We all now know that these three diseases have true, physiological causes—not mental ones.
 
While these illnesses have largely overcome psychogenic theories, other physiological illnesses still face similar stigmas: Inflammatory conditions like Crohn’s disease, stomach ulcers, and irritable bowel syndrome (IBS) still carry psychosomatic overtones—usually stress-related—even though they have been proven to have physiological origins. Researchers at the University of Edinburgh, for instance, have compiled an overview of studies that link Crohn’s disease to factors such as genetics, immune function, and gut bacteria, not psychogenesis.
 
A lot of this misinformation has spread widely throughout popular culture despite being proven scientifically unsound. For example, a study published in 2011 in the Lancet, a prestigious UK medical journal, used psychosomatic theory to claim that cognitive behavioral therapy (CBT) substantially benefited people with myalgic encephalomyelitis. The study, known as the PACE trial, was eventually debunked and proved to be the product of bad science—but not before it had influenced public-health services to adopt treatment models, many of which actively harmed patients by prescribing exercise to severely ill patients based on psychogenic models.
 
There is hope, however. After all, multiple sclerosis and autism have managed to transcend the stigma of outmoded psychosomatic theory. But until the government and medical establishment realizes that psychosomatic theory has no place in modern medicine, diseases like mine will continue to be stigmatized, trivialized, and dismissed.
 



December 2016
 
Helen Roseveare (1925-2016) A Tribute

 
http://blog.christianfocus.com/index.php/2016/12/07/helen-roseveare-1925-2016-a-tribute/
 
By Catherine Mackenzie, Christian Focus Publications, 7 December 2016
 
Christian Focus Publications would like to extend its sincerest condolences to the family and friends of our dear Helen Roseveare, who passed away this morning. She dedicated her life to serving others even in the deep trials of life. She pioneered vital medical work in the rainforests of what is now the Democratic Republic of Congo and was an internationally respected speaker with WEC ministries. We are thankful at Christian Focus for Helen’s ministry through the books we have been blessed to publish. She spent her life in service for the Lord and today she is with Him, worshipping Him, in heaven.
 
Catherine Mackenzie, Children’s Editor at Christian Focus, shares the impact Helen Roseveare had on her life.
 
This morning a good friend and encourager Helen Roseveare passed away, she had been longing to go home to be with Christ. Now this has happened we who remain look back at her life and rejoice in the work that the Lord gave her and in the witness she gave to his worthiness.
 
It was eleven years ago that I met Helen Roseveare for the first time. She had not long celebrated her eightieth birthday. I’d read her books and knew her story and somehow or other I had been invited to stay with her in Belfast. It was great to actually meet one of my heroines. She was not only encouraging, she was challenging. It was an environment – all be it just for a weekend – where I felt safe to be honest with her and Pat, her friend, about the challenges and struggles of my own little life. Even though she had been through so much herself (if you don’t know what I mean then read her books) my problems didn’t feel too insignificant to share. And the words she gave me before I left on the flight from Belfast to Inverness were straight forward – just telling me to keep on going. And I’m thankful to her and to God that I have through His strength.
 
After that she came over to my congregation to do a conference. It was there that she gave, as part of her message, four little words that I believe were the backbone to her life and reinforced, for me, the message of her books, the message she gave me before I left Belfast and the message her Lord and Saviour, Jesus Christ, gives all believers.
 
“Jesus is Worth it”.
 
Towards the end of that conference I had the pleasure of taking her and Pat for a tour of the Black Isle – a Scottish peninsula near Inverness. What took place at lunch that day is one of several distinct ‘Helen and Pat’ memories that will stay with me for the rest of my life. If you’ve not met either of them – let me describe these two women of God… in two words (believe me I could pick another 100 words to describe them and I wouldn’t do them justice.)
 
Smart. They both graduated in medicine at a time when to be a female graduate in any discipline like this was rare.
 
Cosmopolitan. Both travelled extensively – before the easy days of online booking and satnav.
 
But if you had been the couple sitting beside us in the restaurant that day you wouldn’t have looked twice. You would have presumed ‘they’re just two little old ladies’. But that’s one point where the church and the world differs – God’s kingdom never puts the word ‘just’ before any category of believer – particularly little old ladies.
 
Our neighbouring diners were given a visual and audible lesson in this when, after lunch, Pat and Helen’s conversation went as follows:
 
“I don’t think we’ll ever be able to get back to Afghanistan but it is a beautiful country, and the Lord is at work there…” – or words to that effect.
 
As my chin dropped I could see the looks on the people at the table beside us as they turned and stared. Two women they had just spent the last hour ignoring were talking about a trip they had made to what was now one of the most notoriously violent countries in the world.
 
Helen and Pat started reminiscing about people who had lived and worked in that region and about the brief time they had spent in a nation that was now in the thick of a conflict that threw up words like Taliban and Terrorist.
 
I drove them back to my parent’s house and before too long they were on their way back to Belfast discussing, no doubt, their plans for the development of the girl’s clubs they were involved in and the future fundraising for their local church.
 
So don’t make assumptions about little old ladies… especially when you hear the word church and missionary in the same sentence … they may very well have been where we will never go, have done what we wouldn’t dream of, and have given up what we just aren’t willing to.
 
Helen Roseveare was a little old lady, during the time I knew her, but really age didn’t come into it. She was a woman after God’s own heart and Jesus was the one that her heart longed after. She’s with him this morning – still part of the church as she worships more fully in heaven. We who remain, continue as she did once to long for home.
 



December 2016
 
Parliamentary Questions asked by MP Kelvin Hopkins

 
https://opposingmega.wordpress.com/2016/11/27/parliamentary-questions-asked-by-mp-kelvin-hopkins/
 
Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.
 
He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred; and if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted. The Department for Business, Energy and Industrial Strategy indicated on 25th November that it will not be possible to answer these questions within the usual time period and that answers are being prepared and will be provided as soon as they are available.
 
Two further questions by Kelvin Hopkins, which are currently awaiting answers, ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council’s policies towards ME research over the last decade; and if he will seek those people’s removal from positions of influence over future of ME research; and if he will review the policy of the Medical Research Council (MRC) in so far as it relates to addressing the dissatisfaction of ME patients with MRC’s approach in this area.
 
Kelvin Hopkins also asked questions of the Secretary of State for Health regarding review of the NICE guideline and treatment recommendations.  The answer was –

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.
 
NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.

You can find the parliamentary questions and answers here –
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome
 
Short link – http://bit.ly/2gyJ0il
 
The Opposing MEGA petition organisers have not been in contact with Kelvin Hopkins, but these parliamentary questions are relevant to our rejection of the call by MEGA for ‘mainstream research funding’ which stands to amount to at least £9m.
 
MEGA (M.E./CFS Epidemiology and Genomics Alliance) is a project of the CFS/ME Research Collaborative (CMRC).  The CMRC formed in 2013 following on from the last CFS/ME ‘Expert Group’ of the Medical Research Council (MRC).
 
The MRC co-funded the £5m+ PACE trial, designed to provide evidence that the psycho-behavioural and graded exercise therapies recommended by the National Institute for Health and Care Excellence (NICE) are effective and cost effective treatments for ME/CFS, along with the Department for Work and Pensions and other co-funders.
 
The PACE trial was led by Professor Peter White of Queen Mary University London (QMUL). The university spent some £200k of public funds appealing a decision by the Information Commissioners Office for release of raw data from the trial for analysis by independent researchers.  A tribunal upheld the ICO decision, published August 2016.
 
Professor Esther Crawley of the University of Bristol relies on the PACE trial as research evidence to support funding applications for studies into paediatric ME/CFS.  She stated, during the extensive media coverage of her new FITNET trial at the beginning of November 2016, that PACE was a “great, great study”, and further demonstrated a lack of comprehension by misrepresenting the results of the recent reanalyses of the PACE trial data.
 
Esther Crawley is Vice-Chair of the CMRC and is listed by MEGA as an applicant in their petition to mainstream research funders.  MEGA announced on 3rd October 2016 that Peter White had retired from the group and will have an advisory role.
 
Confusingly then, Chair of the CMRC Professor Stephen Holgate, has put in writing that MEGA and the CMRC have no connection with the PACE trial or Peter White now that he has retired.
 
It is refreshing to read that Kelvin Hopkins has asked such pertinent parliamentary questions, as the answers that various people are receiving in writing from members of the CMRC Board about MEGA sound as though they are coming from establishment politicians rather than scientists or medical doctors, and only serve to make us ever more certain that we are right to have no confidence in MEGA.
 
You can cast your vote against giving more millions of pounds of ‘mainstream funds’ to anyone connected to highly suspect research activities by signing our petition Opposing MEGA – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
 



November 2016
 
PACE part II? Esther Crawley and FITNET by Utting-Wolff Spouts

 
https://uttingwolffspouts.com/2016/11/01/pace-part-ii-esther-crawley-and-fitnet/
 
In case you missed it, unlikely but kudos if so, today (1 November) has seen considerable media coverage of the proposed FITNET trial [1] (of course the acronym has to include the word ‘fit’) being run by Professor Esther Crawley. Costing £1 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS) model of the disease rather than decent biomedical research. Crawley’s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up [2], though the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again the laziness and uncritical reporting of any story concerning ME, promoted as usual by the Science Media Centre (SMC), by the UK media is glaring. They even dragged out their old canard, supposed victimisation of the brave researcher (that would be Crawley) by nasty ME activists, said researcher ‘heroically’ carrying on despite abuse from a minority of patients. Such claims were conclusively debunked by the recent First-Tier tribunal Judgement [3], which ordered the release of the PACE trial data but apparently no one told the BBC.
 
Today’s coverage of FITNET cannot be treated in isolation and should be compared with earlier reporting of the PACE trial by the British media, which was unfailingly enthusiastic, one-sided and uncritical. Both trials have been strongly promoted by the SMC, whose press releases are repeated more or less verbatim by the media, without any attempt to investigate the accuracy of their claims. This is possible in today’s media due to a combination of laziness, establishment cronyism and a lack of scientific understanding amongst journalists reporting on these issues. The extensive coverage of studies promoting the BPS model of ME is in stark contrast to the virtual non-reporting of any biomedical research. The failure of the media to cover the recent dismantling of PACE, extensively covered elsewhere but barely mentioned in the UK press, was particularly revealing. One would think there was a media blackout, with such coverage as there was focused more on defending the PACE researchers than exposing their fraudulent study.
 
Had the media noted the flaws in PACE and the reasoning that underlines such studies so they might have been able to interrogate Crawley regarding the potential flaws in her study. The fact that the participants in the FITNET study will be children, makes it more morally questionable, though her focus on fatigue as the primary symptom suggests many trial subjects probably won’t have ME, as was the case with PACE. No doubt this will flatter her results if/when they are published, not always guaranteed with Crawley as demonstrated by the SMILE trial [4].
 
It was inevitable the exponents of the BPS model would push back, ably abetted by the SMC, given the recent disaster that was PACE. The timing seems convenient given the IACFS/ME conference that recently ended in Florida, revealing promising biomedical studies [5] which you’ll have no hope of reading about in the British media. I find professor Stephen Holgate’s comments about FITNET, in which he promoted the study as an example of ‘high quality research’ particularly concerning for two reasons:
 
1 Crawley’s study is the converse of quality research CBT has yet to cure anyone suffering from a debilitating neurological disease
 
2 Both Holgate and Crawley* are involved in the proposed MEGA study, given their views this does not instil me with confidence regarding how this study will be conducted

Those promoting the MEGA study [6], including several ME charities, are encouraging patients to sign a petition in its support, an unprecedented action in the field of scientific research and arguably unethical. To expect ME patients to put their trust in a study involving Crawley in such a powerful role is, in my opinion, expecting too much, whatever the quality of the other researchers involved. Especially as those new to the field of ME are likely to put their trust in researchers with the most experience in the discipline, lacking the knowledge of just how flawed that experience is with its strong bias towards the psychological model of the disease. Considering these circumstances, I would encourage people to consider signing the OMEGA petition opposing MEGA [7] instead and direct their energies towards gaining funding for high quality ME research, an increasing amount of which is taking place, especially outside the UK.
 
One final point about today’s coverage of the FITNET trial and the free publicity professor Crawley has received to promote her controversial views. Dr Charles Shepherd, Medical Adviser to the ME Association, was apparently unaware this issue was going to be covered by the media, claiming complete ignorance [8]. This is unacceptable. Our charities should be taking the lead in responding to such harmful propaganda**, as would be the case with any other disease, and their absence ‘missing in action’ on such an occasion, leaving us exposed to this reporting, is letting down the ME sufferers they are meant to be representing to an unforgivable degree.
 
Postcript.
 
Since writing this piece it has been brought to my attention that James Gallagher, the BBC’s Health Editor who so enthusiastically promoted FITNET, is on the advisory committee of the Science Media Centre that controlled today’s coverage (and pretty much all media reporting relating to ME). I don’t remember his pointing out this potential conflict of interest and I shall be making a formal complaint to the BBC (thanks to Jamie Sugg for bringing this to my attention).
 
 
 
*Needless to say the BBC failed to point out Holgate’s link to Crawley when reporting his comments
 
**Some charities are more culpable than others and I would exclude Tymes Trust from this description and recommend children suffering from ME to visit them for information about the disease (please avoid AYME)
 
1 http://www.bbc.co.uk/news/health-37822068 (Accessed 01-11-2016).
 
2 https://www.ncbi.nlm.nih.gov/pubmed/23669515 (Accessed 01-11-2016).
 
3 http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
 
4 http://blogs.plos.org/mindthebrain/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/
 
5 http://niceguidelines.blogspot.co.uk/2016/10/breaking-news-cause-of-mecfs-is-in-blood.html (Accessed 01-11-2016).
 
6 http://www.meresearch.org.uk/news/mega-study/
 
7 https://opposingmega.wordpress.com/2016/10/20/invest-in-me-research-statement-on-omega-petition-october-2016/
 
8 https://www.facebook.com/ME-Association-171411469583186/
 
 
 
By Valerie Eliot Smith
 
https://www.facebook.com/valerie.eliotsmith/posts/10153807218071883?notif_t=like&notif_id=1478081831968482
 
Following yesterday's impressive media hijack by the Science Media Centre (there was no actual story; it was simply manufactured for the occasion, complete with misleading reference to the counterpart Dutch study), the total absence of a coherent media infrastructure within the UK's ME patient community became - yet again - painfully obvious. Alongside the urgent need to ramp up lobbying for an expedited review of the NICE Guidelines (in light of recent research developments outside the UK), this is arguably the most yawning gap within ME advocacy and requires immediate attention if this pattern of events is ever going to change (as anyone familiar with the last 60 years of our history will know).
 
There is little that individual patient advocates, bloggers or small groups can do to address this media imbalance; the only possible solution is to engage external expert, high-level professional advice and assistance to initiate a rapid, comprehensive media strategy. However, this could only be obtained via a broad coalition of the ME charities and groups who purport to represent the interests of patients. My attempts to negotiate that (as with the NICE Guidelines review) have yielded no results so far - and I think it's unlikely that they ever will.
 
I have been writing about this media lacuna for some time now. For example, in January 2015, I wrote this in a blog post:
 
"The complete absence of a visible patient narrative became painfully evident last week. The mainstream British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here). Journalists appear to have regurgitated mindlessly a press release from the Science Media Centre’s relentless propaganda machine and failed to make any responsible enquiry into the real story. Subsequent rebuttals from the charities limped in on the back foot; positive and corrective commentary was drowned out in the general furore; patients and supporters rallied but we were all too late to the party.
 
Why? How could this happen yet again? Because it can. Because that real story – patients’ actual lived experience – is invisible and therefore not officially documented. Accounts of individual patients’ experiences appear occasionally (usually in local media or the comment/blog sections of national media) but their impact is relatively low and they may even serve to normalise – rather than flag up the scandal of – the way in which the condition is treated and portrayed. Chronically sick ME patients are not up to the Herculean task of funding and managing a long overdue strategic initiative to disseminate our real story pro-actively and deflect negative publicity effectively. But without such a campaign in place, it will happen again; we will remain without a platform from which either to speak or to generate our own record for the archives.
 
 
Do media stories really matter? Yes, of course they do – because those stories are subsumed into the source materials which constitute our collective history. If there can be no aggregation of fair and accurate records, then history is falsely written and becomes a mere propaganda tool."
 
https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/
 



November 2016
 
Opposing MEGA

 
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
 
We vote 'no confidence' in MEGA research for M.E.
 
A UK medical research group called MEGA (M.E./CFS Epidemiology and Genomics Alliance) has set up a petition for public support to help them obtain millions of pounds (estimated minimum £9m) from research funding bodies for a prospective study of a neurological disorder known for research purposes as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
 
The professional ethics of petitioning the public for support in order to obtain research funds and petitioning support of a vulnerable community of patients/carers is questionable. 
 
The MEGA petition includes words such as 'biological' 'biomedical' 'big data' 'potentially game-changing' - clickbait for patients/carers desperate for definitive diagnostic tests and medical treatments, yet updates show how little thought and planning has been given by the research team to their own proposal. They had not even thought of including the 25% most severely ill patient cohort in their proposed 12,000 participants.
 
A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'. 
 
The BPS illness model of ME/CFS assumes that biological abnormalities and physical symptoms are caused or maintained by psychological or social problems and may be treated by changing the patient's thoughts and behaviours.
 
Decades of research shows that no matter how much 'bio' is found in ME/CFS (plenty has been found) it is interpreted by BPS proponents as due to psychosocial causes and amenable to behavioural therapies rather than signs of disease suffered through no fault of the patient or carer.
 
The BPS researchers and representatives involved in MEGA have already wasted millions of pounds of research funds in attempts to validate their model in ME/CFS by providing policy-based evidence for the psychosocial treatments recommended by the UK National Institute of Health and Care Excellence (NICE) prolonging suffering and causing immeasurable harm to patients and families.
 
There is no further room for The Wessely School, BPS model, or those advised by The Wessely School, in any context associated with the disease Myalgic Encephalomyelitis. 
 
Following the Tribunal Decision published August 2016 upholding the decision by the Information Commissioner in favour of Matthees and providing for the release of raw data from the PACE Trial, which has subsequently proved that Trial to be a sham, it would be unreasonable to trust the very same people to have the best interests of patients at heart.
 
Thus in signing this petition we reject calls from the ME/CFS Epidemiology and Genomics Alliance to create any proposal for a ‘big data’ study, or any study of any description, regarding it as inevitably and irrevocably tainted.
 
No more wasting time, money, lives – not in our name.
 
There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing'.
 
A site has been set up for further information –
 
https://opposingmega.wordpress.com/
 
ICO Tribunal Decision published August 2016 –
 
http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
 
UPDATE 20 OCT 2016
 
We have been asked by supporters to share links to endorsements published today and have posted both on our website.
 
Statement by UK charity Invest in ME Research –
 
https://opposingmega.wordpress.com/2016/10/20/invest-in-me-research-statement-on-omega-petition-october-2016/
 
Comment by Emeritus Professor Jonathan Edwards –
 
https://opposingmega.wordpress.com/2016/10/20/comment-by-professor-jonathan-edwards-about-omega-petition/
 
Thanks to all for your support.
 



October 2016

Karina Hansen 6: THE HOMECOMING by Valerie Eliot Smith


https://valerieeliotsmith.com/2016/10/26/karina-hansen-6-homecoming/ 

KARINA HANSEN, “PRISONER OF DENMARK”, IS HOME AT LAST.

On Monday 17 October 2016, after three and a half years of incarceration, Karina finally returned home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs.


In recent weeks, Karina’s condition had improved slightly and her parents were able to visit her on a regular basis (more detail in my previous post). As a result, meetings took place between those in charge of the Clinic at Hammel where she had been an inmate since February 2013 (see Karina’s Story below for background) and representatives of Karina’s family. An arrangement for Karina’s return home was agreed whereby her parents would take her home within the next few days and she would remain there for a trial period. If all went well, she would stay on at home permanently.

Significantly, Karina was well enough to sign a document saying that she wanted to go home with her parents. Although she was still unable to speak, she was able to communicate via gestures that she understood the plan and wished it to happen.

The trial period has now passed without incident and so Karina and her family have decided that they want to share the news with their friends and supporters all over the world.

Karina has finally come home.

A request for privacy

It is Karina’s birthday on 7 November, the first one she will have been able to enjoy at home with her family since 2012. Her supporters all over the world will be celebrating with her. There are various groups (on Facebook, for example) with more details of how to get involved.

The Hansen family is very grateful for the huge amount of support and many good wishes which they have received over the last few years. However, this is a time of enormous re-adjustment and they would like to request that, once Karina’s birthday is over, their privacy is respected. Karina has a long way to go with her recovery and her family members need time to adapt to their new situation and reflect on how to process the traumatic events of recent years.

********************

Regular readers of this blog will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally. However, for new readers, and those needing a reminder, here is a summary:

Karina’s story 

Karina (pictured top left, from her schooldays) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model; patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no recognized diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.]

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel  Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will; she was found by a court subsequently to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. Her condition deteriorated rapidly after her admission to the Clinic.

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I have written a series of blog posts chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.


********************

Official comments on Karina’s case

Regular readers may recall from earlier articles in this series that I contacted (via an academic colleague who is an expert on Open Justice in European countries) the Danish Ministers for Health and Justice and Hammel  Neurocenter. These requests for comment were made in February 2016.

* The Minister for Health replied two months after the original request and refused to comment on the basis of patient confidentiality (although the request was worded as a general inquiry rather than for specific information about Karina).

* The Minister for Justice sent standard acknowledgments and eventually responded in July (nearly six months after the original request). The reply simply referred the inquiry back to the Minister for Health.

* Per Fink replied within two days on behalf of himself and Hammel. In summary, he stated that all patients are there on a voluntary basis and that the clinic is very popular

The Clinic has been contacted again for comment about Karina’s return home. I will update this article when I receive a response.

Where are we now?

The status of Karina’s legal guardian will need to be resolved formally by the Court. Whether or not his role in these proceedings (see previous posts) is subjected to any further scrutiny is another matter. Only time will tell. And there are other issues such as ongoing medical treatment which will still need to be addressed so the story is not necessarily over yet.

However, the question which I asked in Karina Hansen 3: Update March 2016 remains unanswered: “In the absence of any clear explanation, the inevitable question arises: [was] her condition the direct result of a state-orchestrated plan which went horribly wrong?”  Perhaps this question will be addressed if there are any further legal proceedings in relation to these events.

How much damage has been done to Karina and her family remains to be seen. After three and a half years in an institutional environment, there will be considerable adjustments and adaptations to be made. It is to be hoped that plans have been put in place and that appropriate support will be made available to them.

********************

Significance of Karina’s story for the future

Karina’s story is horrifying. It is a story which should be of the utmost international concern, as a salutary reminder not only of a shocking breach of one young woman’s rights but also of the continuing scandal of the appalling treatment and stigmatization of ME patients all over the world.

It is also of supreme importance that a permanent record of these events is publicly available as reference material for the future. That is why I have invested so much time and effort into researching and writing this series of articles (always whilst battling through my own brain-fog, one of the hallmark symptoms of ME and, for me, the most difficult of all to live with).

But, for now, the international ME community can celebrate the fact that Karina is free at last.

********************

Acknowledgments

I would like to thank Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark) for keeping me up to date with the Group’s work in assisting Karina and her family.

I would also like to thank Rob Wijbenga from the Netherlands for his support and assistance.

********************

Disclosure

I have lived with the illness ME since 1981. For more information see About.
 



October 2016

A Response to Professor Fred Friedberg’s Editorial about CBT


http://www.margaretwilliams.me/2016/response-to-professor-fred-friedberg.pdf

Professor Fred Friedberg asks why cognitive behavioural therapy (CBT) is so vilified in the chronic fatigue syndrome community.

He opens his Editorial by stating: “Cognitive behaviour therapy (CBT) is a well-established psychosocial intervention for psychiatric disorders, pain management and stress related to medical conditions” (Editorial: Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue, Biomedicine, Health & Behavior 2016:vol 4: no:3:127-131) but ME/CFS is not, and never has been, a psychiatric disorder and CBT has no more role in its management than in the management of multiple sclerosis, MND, Parkinson’s Disease, malignancies or other autoimmune disorders such as lupus or RA.

CBT is not mandated as the primary management approach in those other disorders, so why in ME/CFS?

Patients with ME/CFS do not summarily reject any intervention that would help them: what they reject is a psychosocial intervention that is used with the intention of changing their correct perception that they are very sick with an organic disease, not with a behavioural disorder that is curable by “cognitive re-structuring” if they would only co-operate.

Friedberg appears to assume that, where there is stress related to a medical disorder, CBT supports patients to help them cope better with their disease.

However, a key consideration which he fails to mention is the significant difference between supportive CBT and directive CBT.

In relation to ME/CFS, in the UK PACE trial CBT was not supportive but directive: Professor Sir Simon Wessely, currently President of the Royal College of Psychiatrists, has publicly stated: “CBT is directive – it is not enough to be kind or supportive” (New Statesman, 1st May 2008). 

No amount of directive “cognitive re-structuring” can result in “recovery” from such a multi-system inflammatory disease process as has been demonstrated in ME/CFS.

The Centres for Disease Control (CDC) has archived its toolkit that recommended CBT and GET as interventions for ME/CFS (http://www.cdc.gov/cfs/toolkit/archived.html) and the National Institutes for Health (NIH) has produced  a  report which acknowledges the harm done to patients (http://annals.org/article.aspx?articleid=2322804); their conclusions were based on comprehensive reviews of over 9000 peer-reviewed research papers and testimony from expert researchers and clinicians.

Does this not provide the answer to Friedberg’s question as to why CBT is so vilified in the ME/CFS community?

Diverting scarce resources from biomedical research by funding psychosocial interventions that have been conclusively proven to be ineffective can only harm patients further.

Money must now urgently be made available by institutions such as the MRC for research that is relevant to the disorder; for example, Professor Faisal Khan (recently appointed to the Chair of Cardiovascular Sciences, Division of Molecular and Clinical Medicine at the University of Dundee) is working on NRF2 (nuclear receptor factor 2) in ME/CFS patients and his work ties in with the study by Japanese researchers who looked at index markers in ME/CFS patients with dysfunction of TCA  (the tricarboxylic acid cycle, also known as the Krebs cycle, which is the biochemical pathway used to generate energy) and urea cycles (http://www.nature.com/articles/srep34990).

Behavioural researchers who for over 30 years have shown disregard for the scientific process should have no influence on future research.

Patients with ME/CFS do not need “behavioural” guidance from a profession which has visited such harm upon them.

To spell it out: directive CBT does not work for patients with ME/CFS and it is time that those psychologists and psychiatrists who insist that it does returned to reality.
 
Professor Malcolm Hooper
15th October 2016



October 2016

The serious trust deficiency afflicting medical advice and what to do about it


http://healthinsightuk.org/2016/10/08/the-serious-trust-deficiency-afflicting-medical-advice-and-what-to-do-about-it/

By Jerome Burne

Trust me I’m a doctor has become a knowing, cynical catch-phrase but the underlying truth is that we do need to trust our doctors, not only because trusted doctors exert a beneficial healing effect but also because we are entrusting them with something precious – our health.

Several recent events however suggest that we would do well to keep our cynical streak on high alert when visiting. Unquestioning trust can have dangerous consequences, as some patients taking statins have found along with those with ME/CFS.

A reasonable summary of a recent HIUK post about statins would be: ‘You can’t trust claims about statins because they are based on secret data’. While a summary of last week’s post might be: ‘You can’t trust claims about the benefits of psychological treatment for ME/CFS because they have been wildly exaggerated’. Not only that but the authorities involved fought hard and expensively to prevent the facts emerging.

I do think there may be a way out of this long-running conflict between patients and authorities which I will come to later but what happened initially in the wake of these two posts caused my trustometer to plunge even lower.

Impenetrable mathematical wizardry

First was a post on another blog which explained that a trial of the great and good Mediterranean diet had arrived at its impressive conclusion with the aid of the sort of impenetrable statistical workings that has given a shine to statins. I knew that a similar form of mathematical wizardry had created things called ‘collateralised debt obligations’ that set off the banking crash but I’d never actually seen one at work.

Now I have and this is what it looks like:

We calculated PAF [Population Attributable Fraction] based on the formula of rate difference: PAF = (I0 − Ii)/I0, equivalent to I0 − HR × dMDS/I0, where HR was estimated continuously with adjustment for potential confounders as aforementioned, I0 is observed incidence per 10,000 person-years, and Ii represents a hypothetical, ideal incidence if the population achieved high MDS (95th percentile) (dMDS=MDSideal – MDSobserved). The CI of the PAF was derived from bootstrapping to estimate HR and PAF iteratively (n resampling = 100, after confirming no difference in results between n = 100 and 1000).”

Remarkable isn’t it? This one was found in a large nutrition trial published last week extolling the benefits of the Mediterranean diet (the comment originates from the blog).  I’m prepared to bet that no more than a handful of BMJ or Lancet readers could assess whether the answer it produced was right or wrong or how the conclusion was arrived at. You just have to take it on trust.

It might be described as a “statistical McGuffin” (A McGuffin is a term used in movie circles to describe something that propels the plot without having any further function.) Its purpose in the trial was to produce a result that would generate the impressive headline: ‘Mediterranean Diet could prevent 20,000 heart disease deaths per year.’

What you need to know about McGufIins

I’m grateful to the indefatigable Dr Zoe Harcombe, a hugely well-informed nutritionist with a clear grip on bio-medical statistics, for this explanation. She cheerfully admitted she didn’t understand the workings of this particular McGuffin, but that didn’t matter. She knew what its underlying assumptions were and what it was designed to do.

Its purpose was to translate the key finding of the research –that following the diet closely made you less likely to die from a heart attack – into the number of lives that would save in the UK as a whole.

The problem isn’t with the mathematical processes but, as with the financial statistical McGuffins, with the assumptions it was set to work on. Firstly, that the result of a study of a 24,000 people with an average age of 59 would be directly applicable to people of the average age in the UK which is 40. Secondly that 12.5% of the total number of heart attack deaths could be prevented with the diet. As Dr Harcombe explains there are good reasons why both are unfounded.

Without independent and informed experts like her, national dietary policy and drug guidelines can presented as objective and scientific when they are actually based on questionable assumptions.

Patients take unusual steps

But there is no need to reach for a McGuffin to give statistics a highly misleading spin. A quick change to the criteria for success can also do it effectively. This move was central to last week’s blog about the remarkable events in the world of ME/CFS where the issue of how best to treat patients is bitterly contested.

For those starting here the story centred round a standard clinical trial that, five years ago, had found that the official treatment –psychotherapy and graded exercise – was effective in improving many patients’ lives and helping a significant number to recover.

When it was published something unusual happened. Not only did a considerable number of patients not believe the results but they wrote letters and compiled reports setting out their reasons and demanding to see the original data. Last month five years of campaigning produced two totally unexpected results. The psychologists who ran the trial were forced to release the data and when it was analysed the patients concerns appeared justified.

What triggered a further drop in my trustometer was the response to this bombshell. Serious questions had been raised about the accuracy of the data underpinning a NICE approved treatment which affects around 200,000 patients. And nothing happened. No TV coverage, no headlines just an uneasy silence like a car crash in slow motion.

The curve ball here was that the re-analysis had been driven by the patients rather than the regulator. That’s unheard of, although there is no reason why the results shouldn’t be correct. In fact there is obviously a case for involving patients in any such re-assessment. They are certainly stakeholders in the business here and I describe a way it might happen below.

Nothing to do with me guv.

The BMJ covered this dramatic story in a misleadingly low-key way. It didn’t spell out the long campaign to get the data or convey how damning was the dismissal of the reasons given for not releasing the data. This was especially curious because the journal has been campaigning for the release of hidden statin data for at least two years. Surely a patient’s successful use of Freedom of Information could have been hailed as a significant victory and maybe a strategy to try?

The Guardian was the only national paper to cover it but it didn’t even attempt to set out the details or provide any context. Instead of dishing out the forensic treatment given to wealthy tax dodgers or regulation busting banks, it handed over half a page to the lead author of the disputed trial to explain how hard he worked to help patients – most likely true –but which he followed with a curious use of the passive tense:

‘There are claims of foul play,’ he wrote ‘with issues over freedom of information and sharing of trial data.’ The fact that he is one of the central figures in these issues doesn’t really come across. It would certainly leave the casual reader no wiser as to what had been happening.

What this limited and downbeat response highlighted was that once a treatment is out there approved and being used, it is virtually impossible to get any kind of reassessment until people start dying as with Vioxx. And that even evidence based critiques are unwelcome.

Cholesterol data fiddling goes back a long way

Resisting any kind of challenge and dismissing critics is also the way the current statin debate has been handled. What I hadn’t appreciated until I started reading a remarkable new book this week, was just how far back the fiddling of statin data and refusal to engage with critics goes.

It has one of those does-what-it-says-on-the-tin titles: ‘Fat And Cholesterol Don’t Cause Heart Attacks And Statins Are Not The Solution’ and contains contributions from 22 leading clinical and academic critics of the widespread use of these drugs.

It builds a detailed case for the way evidence has long been ignored or twisted, detailing, for example, the early shenanigans around the long running Framingham study investigating the links between diet and heart disease. One influential paper claimed that for every 1% reduction in cholesterol there was a 2% reduction in the risk of heart disease. This was seriously misleading. Years later when the study was re-examined it emerged that the study had actually found that for every 1% drop in cholesterol there was an 11% increase in coronary and other causes of death.

The book details other long, large scale trials such as MRFIT (Multiple Risk Factor Intervention Trial) and WHI (Women’s Health Initiative) both of which found that a drop in cholesterol had no effect on CHD. There’s a description of a randomised controlled trial of a cholesterol lowering drug called Cholestryramine, which claimed to have found the same 1% reduction leading to a 2% reduction in CHD events. Again, a subsequent review found no difference between the placebo and drug groups. 

Critics warned off having a meeting

But the failed trials were not enough to counter the major PR offensives against cholesterol and the facts about the unreliable ones came out later. Persistent and informed critics were ruthlessly treated. One of these was George Mann, a professor of Medicine and Biochemistry who had done research in 1960 which failed to find a link between lower cholesterol and heart disease rates, which was never published at the time.

When he attempted to organise a conference to discuss flaws in the cholesterol hypothesis only 12 delegates turned up. The rest had been either fooled by false announcements saying it had been cancelled or warned their funding would be cancelled if they attended.

A big difference between then and now is the internet, which makes it far harder to stifle criticism as both ‘Statins Are Not The Solution’ and the ME/CFS re-analysis shows. The opportunities it throws up are leading to more formal involvement by cancer patients, for example, in their treatment under the mantra: ‘Nothing about us without us’. This could be expanded to other diseases.

Patient representatives have long had a place on committees run by companies and organisations but the latest idea, dubbed ‘evidence based advocacy’, is that they should be more involved, informed and proactive. The sorts of things being suggested include ‘conducting online surveys though software such as Survey Monkey, gathering opinions at conferences and conducting Facebook polls.’ Might some such formal feedback system have made action on the demands of ME/CFS patient less of a frustrating battle for both sides?

One organisation called Europa Donna, which involves breast cancer patients, is now being asked to serve on the committees that run clinical trials. Since these can involve highly technical decisions, Europa Donna is providing training, particularly in the research field. ‘The result,’ a spokesperson is quoted as saying ‘is they can do an effective job and not just rubber-stamp what is handed to them by the scientific investigators.’

Is it wildly optimistic to imagine patients sitting across a table from researchers discussing the release of the full data on statins- maybe some had been in the original trials – or making informed critiques of the trial of a new treatment for ME/CFS. Certainly something needs to change.
 



September 2016
 
Key points from the analysis of the PACE trial raw data for “recovery”

 
http://www.margaretwilliams.me/2016/key-points-from-raw-data.pdf
 
Margaret Williams 21st September 2016
 
The following extracts are taken from:
 
“A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data”.
 
(The article referred to includes: "The recovery rate is … 6.8% for cognitive behavioural therapy, 4.4% for graded exercise therapy, 1.9% for adaptive pacing therapy.")
 
(http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf)
 
by Alem Matthees (1), Tom Kindlon (2), Carly Maryhew (3), Philip Stark (4), Bruce Levin (5)
 
1. Perth, Australia. alem.matthees@gmail.com
2. Information Officer, Irish ME/CFS Association, Dublin, Ireland.
3. Amersfoort, Netherlands.
4. Associate Dean, Mathematical and Physical Sciences; Professor, Department of Statistics; University of California, Berkeley, California, USA.
5. Professor of Biostatistics and Past Chair, Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, USA.
 
http://www.virology.ws
 
Key Points
 
1. There was no committee approval for the re-definition of “recovery”.
 
2. “Recovery” rates for CBT and GET were not statistically significant.
 
3. The PACE PIs originally reported “recovery” rates of 22% for CBT and GET.
 
4. The published “recovery” rates were based on thresholds that deviated substantially from the published protocol and were inflated by an average of four-fold.
 
5. In contrast to the published paper by the PIs, the recovery rates in the CBT and GET groups are not significantly higher than in the SMC (standard medical care) group alone.
 
6. APT (adaptive pacing therapy) was a highly modified version of “pacing” (preferred by patients).
 
7. 13% of participants at baseline simultaneously met the trial entry criteria for “significant disability” and the revised “recovery” criteria.
 
8. The Investigators excluded drop-outs, which is not recommended practice in clinical trials.
 
9. Logistic regression (used by the PIs) has been shown to be an inappropriate method of analysis in randomised trials.
 
10. The figures originally given by the PIs for the four groups were:
 
SMC 7% (but according to the protocol are 3%)
APT 8% (but according to the protocol are 2%)
CBT 22% (but according to the protocol are 7%)
GET 22% (but according to the protocol are 4%)
 
11. “Our findings therefore contradict the conclusion of White et al (2013) that CBT and GET were significantly more likely than the SMC group to be associated with ‘recovery’ at 52 weeks”.
 
12. “The multiple changes to the recovery criteria had inflated the estimates of recovery by approximately 2.3 to 5.1-fold, depending on the group, with an average inflation of 3.8-fold”.
 
13. When using the revised recovery criteria, 8% of the “recovered” participants still met trial eligibility criteria for “significant disability”.
 
14. “The changes made by the PACE investigators after the trial was well under way resulted in the recovery criteria becoming too lax to allow conclusions about the efficacy of CBT and GET as rehabilitative treatments for CFS”.
 
15. “This analysis, based on the published trial protocol, demonstrates that the major changes to the thresholds for recovery had inflated the estimates of recovery by an average of approximately four-fold”.
 
16. “It is clear from these results that the changes made to the protocol were not minor or insignificant, as they have produced major differences that warrant further consideration”.
 
17. “The PACE trial provides a good example of the problems that can occur when investigators are allowed to substantially deviate from the trial protocol without adequate justification or scrutiny”.
 
18. “It seems prudent that the published trial results should be treated as potentially unsound, as well as the medical texts, review articles, and public policies based on those results”.
 
 
PROOF POSITIVE ? (REVISITED)
 
http://www.margaretwilliams.me/2016/proof-positive-revisited.pdf
 
Margaret Williams 14th September 2016
 
The PACE trial was instigated and carried out mostly by a group of psychiatrists well-known for teaching that ME/CFS does not exist other than as an aberrant belief: their assumption was that ME/CFS is a behavioural disorder that is amenable to behavioural interventions. The Investigators had no evidence for their assumption and despite abundant scientific evidence to the contrary, it remained their firmly-held belief. They favoured two interventions in particular: cognitive behavioural therapy (CBT), which was to “change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability” and graded exercise therapy (GET), which was to correct the assumed deconditioning resulting from avoidance of activity.
 
The original (selective) results on the PACE trial were published in The Lancet in early 2011; they were accompanied by press releases from The Medical Research Council, King’s College London and Queen Mary University of London, all of which proclaimed: “Two effective treatments benefit up to 60 per cent of patients with CFS/ME”. Importantly, this figure was achievable only because the Investigators used a much less demanding definition of improvement than they had stated in their published protocol.
 
Following lengthy Freedom of Information (FOIA) requests, all of which were refused until the final one, the raw data from the PACE trial had to be released, following which the Investigators re-analysed their data according to their own published protocol.
 
Those results were different from what had been published in The Lancet to such loud acclaim (orchestrated by the Science Media Centre, of which Professor Sir Simon Wessely, one of the PACE team, was a founder member).
 
It revealed that the improvement figure was only 21% for the GET group and 20% for the CBT group versus 10% for those who received usual medical care alone, meaning that for every ten people treated with CBT or GET, only one person would show protocol-defined improvement. All participants received what was described as standardised “specialist” medical care (SSMC), but those receiving SSMC alone may have seen the Fatigue clinic doctor only three times for 30 minutes each time during their participation in the trial, a total of 90 minutes throughout the trial.
 
Hence the protocol-specified figures are that CBT and GET helped only an additional 10% of participants over usual medical care and not the widely reported 60%.
 
To read the rest of this article, please click –
 
http://www.margaretwilliams.me/2016/proof-positive-revisited.pdf
 



September 2016
 
New research: distinct biological differences in M.E.

 
https://www.actionforme.org.uk/news/%E2%80%8Bnew-research-distinct-biological-differences-in-me/
 
September 02, 2016
 
Findings of research facilitated by the Open Medicine Foundation could be set to rock the world of medicine, writes Action for M.E. Volunteer Pharmacist Emily Beardall.
 
Published online in Proceedings of the National Academy of Sciences of the United States of America, and reported in UK press including the Telegraph and the Economist, the study looked closely at the blood chemistry in people with M.E. with a research technique called “metabolomics.” This involves measuring the chemicals in our blood created by the different steps and by-products of metabolising, or breaking down, the energy and nutrients from our food into the chemicals that can be used for energy, hormones and building blocks of new cells.
 
The research found 20 abnormal metabolic processes in people with M.E.; nine in both men and women with the illness, and a further eleven which varied between gender. This means normal metabolites found in healthy people were found to be low in M.E., so the illness could be described as a “hypometabolic” disease and the body is effectively in hibernation.
 
The researchers suggest that many of these abnormalities might be part of the body’s own response to try to limit the spread and effect of viral or bacterial infection because cells are using alternative pathways to create the substances it needs. This is normally only seen in acute infection but this state is ongoing in M.E. patients.
 
What abnormalities did the researchers find?
 
The disrupted processes that the researchers have found affect:
 
- cell building blocks sphingolipids and glycosphingolipids which are used by the body to form cell membranes in brain and nerve tissue
- cholesterol, which is needed for the production of cell membranes and steroid hormones such as cortisol and aldosterone
- bile acid, which is important for normal fat digestion; not enough bile acid secreted into the bowel can lead to a “leaky gut” where nutrients aren’t absorbed as efficiently
- mitochondria, the powerhouses of cells, leading to a lower reserve of energy and an inability to replenish high-energy stores after exertion
- the body’s ability to convert vitamins from food into the form needed by cells; those affected are vitamin A and the B vitamins riboflavin (B2), niacin (B3), pyridoxine (B6), folic acid (B9), and - cobalamin (B12). These vitamins are essential for energy production, new cell development such as red blood cells, and for normal nervous system function.
- a substance normally produced by the body as an antifungal and antibacterial, called HICA

A quarter of the abnormalities found were common to all the M.E. patients but the rest varied between individuals, giving each person their own characteristic pattern of abnormalities. The authors suggest that instead of focusing on the common disrupted processes in M.E. for developing a treatment, a personalised medicine approach, ie. giving each person a treatment for their own specific metabolic abnormalities, would be more successful.
 
The study also uncovered five different types of triggers for the illness:
 
- biological infections (viral, bacterial, fungal, and parasitic infections)
- exposure to toxic chemicals
- physical trauma
- psychological trauma
- and a category of unknown triggers.
 
Regardless of what triggered someone’s M.E., the underlying disease process was found to be exactly the same, contributing to the distinct chemical signature found for the condition.
 
Such a huge amount of biological processes in people with M.E. being affected could be the game-changer so desperately needed to move research forward to find treatments and change attitudes towards M.E.
 



September 2016
 
Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis.

 
(It seems that some of them are just starting to catch up with what we, the patients, have been saying for years!)
 
http://www.ncbi.nlm.nih.gov/pubmed/24510231
 
Abstract
 
Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis. A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues' chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues' criteria. The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology.
 



August 2016
 
Prof Malcolm Hooper, Margaret Williams, and the PACE Trial
 
From an email I received - and I am sure this will be a valuable resource for anyone interested in ME -
 
We are pleased to announce the launch of a website containing a catalogue of all the articles on ME written by Margaret Williams and Professor Malcolm Hooper:

http://www.margaretwilliams.me/
 
The articles in this catalogue have been available on the internet or elsewhere for many years but now for the first time have been brought together in one place. The intention is to provide a valuable historical resource for researchers, advocates, patients and anyone interested in the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. These articles illustrate how the "Wessely School" have ignored the biomedical science on ME/CFS for almost 30 years.
 
Margaret Williams is the pen-name used by someone who spent her professional life in the British National Health Service (NHS), latterly in a senior clinical capacity for many years until severe ME put an end to her career. For professional and personal reasons she does not wish her own name to be in the public domain.
 
Malcolm Hooper is Professor Emeritus of Medicinal Chemistry at the University of Sunderland in the UK, and is an advocate for ME/CFS patients. He chaired the International Invest in ME Conference in 2008, 2010, and 2011. He is also the Chief Scientific Adviser to the British Gulf War Veterans Association.
 
With contributions from Eileen Marshall (1994-2007) and others.
 
http://www.margaretwilliams.me/
 
 
Please see also by Valerie Eliot Smith -
 
Tribunal Orders Release Of PACE Trial Data (QMUL v the IC and Matthees)
 
https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
 
The First-Tier Tribunal judgment in this case (click on that link to read full judgment) has just been published. QMUL’s appeal has been roundly dismissed and therefore the Tribunal has decided that the requested data from the PACE trial should be released.
 
I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial. Alem Matthees (the original requestor of the data) has done an extraordinary job.
 
However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so it will be a bit longer before we can be absolutely certain that this judgment will stand.
 
I will write a longer post with a more detailed analysis in due course (health permitting).
 
 
Some further encouraging news -
 
AHRQ Evidence Review Changes Its Conclusions
 
In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations.
 
 
The final paragraph reads -
 
There is no evidence that CBT and GET are effective treatments for us, and therefore, these treatments can no longer be recommended. If CDC and others persist in recommending treatments for which there is no evidence of effectiveness in ME/CFS patients, it will not only perpetuate confusion but also put patients at risk. Such an unscientific recommendation goes against the principles of evidence-based medicine and is not accepted in other diseases. It will not be tolerated here.
 
 
To read the full article, go to -
 
http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/



August 2016
 
Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

 
(This petition was not set up by me, but I would encourage all to sign it.)
 
https://petition.parliament.uk/petitions/131679
 
The NHS offers treatment for chronic fatigue syndrome (CFS) and tells us that CFS is "also known as" Myalgic Encephalomyelitis (ME) in order to justify treating ME the same as CFS. It is unethical to treat one condition as another; it makes patients more ill and is a waste of time and money.
 
Myalgic Encephalomyelitis means "muscle pain + inflammation of the brain and spinal cord", in other words it is a neurological illness. It is accepted as such by the World Health Organization (WHO). The term CFS was coined in the USA and seized upon by psychiatrists in the UK, and today the psychiatric view of ME (that ME does not exist but is really a "fatigue syndrome") now dictates the Department of Health, Nice, and NHS policy. While this policy remains in place, ME patients are untreated.
 
To sign the petition: https://petition.parliament.uk/petitions/131679/signatures/new
 
NB Only British citizens or UK residents have the right to sign.

 


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© Hazel Stapleton 2000 - 2017
E-mail: hazel <at> oneagleswings.me.uk