Government-funded ME/CFS trial ‘one of greatest medical scandals of 21st century’ | 20 February 2018

 


A controversial medical trial part-funded by the Department of Work of Pensions will emerge as “one of the greatest medical scandals of the 21st century” an MP today claimed.

A trial which claimed exercise helped the estimated 250,000 sufferers of the devastating illness, M.E., (myalgic encephalomyelitis) to recover was deliberately flawed to “remove people from long-term benefits and reduce the welfare bill”, a parliamentary debate heard.

Carol Monaghan, MP, who led the PACE Trial debate today in Westminster.

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

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

More than just bad science

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

But the trial has faced intense criticism from patients, charities – such as the ME Association – clinicians and researchers, over how the results were obtained, analysed and presented.

After a long legal battle, unpublished data from the trial was released and, when independently analysed, it showed no difference between the different treatments being tested and that reported recovery rates had been grossly inflated.

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

Carol Monaghan, the SNP MP for Glasgow North West, worked with the ME Association to hold the debate in Westminster Hall today, and had received nearly one thousand letters and emails from people affected by the condition.

She said: “The failure of PACE… could simply be put down to bad science. But unfortunately, I believe there is far more to this.

“One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.”

Westminster Hall heard how people with M.E. struggle to obtain benefits because of treatment guidelines, which wrongly suggest that exercise can lead to recovery.

Former science teacher Ms Monaghan also told how a lack of medical education was leading to late and inaccurate diagnosis – along with absent, inappropriate or even harmful management advice – and that the M.E. field was plagued by a “woeful lack of research”.

She said: “Labels such as chronic fatigue syndrome and post-viral fatigue syndrome simply do not come close to the living hell experienced by many sufferers. A living hell made worse by a lack of understanding towards those seeking help.”

Complete rethink required

Speaking after the debate, the MP said: “The PACE trial was fundamentally flawed as it worked from the assumption that M.E. is a psychological condition.

“To describe somebody with M.E. as suffering from ‘fatigue’ is a gross misrepresentation of the symptoms they experience: debilitating muscle pain, excruciating headaches and exhaustion so severe that some sufferers cannot even chew solid food; is the reality for a person with M.E.

The controversial PACE Trial published in March 2011.

“There has to be a complete rethink of the medical advice given to sufferers of M.E. as even gentle exercise can set them back for weeks and, in some cases, months.

“However, unfortunately for many this is still the advice being offered. Discovering that the PACE trial was funded by the DWP, no doubt with the intention to reduce the amount of people on benefits, should cause great concern.

“As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community.

“I hope that this debate will be the starting point for new medical advice and guidelines for people suffering from ME. I thank all of those who have taken the time to get in touch with me regarding their personal experiences of both living with M.E. and the PACE trial.”

Listen to what patients have to say

A spokesman for the ME Association, which campaigns for more awareness into the condition, said:

“It is vital the voice of M.E. patients is heard, and we are grateful that their plight, and the flawed PACE trial, has been raised today.

“Many of our members are housebound or bedbound and we cannot allow them to be forgotten about by society.

“Many have seen a worsening in their symptoms after undergoing CBT and GET and it is vital that this advice is no longer given out by medical professionals.

The NICE guideline for ME/CFS is now subject to a complete review.

“M.E. patients are not hypochondriacs, hysterical or lazy – they are afflicted with a condition that is devastating and life-changing.”

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

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

An ME Association spokesman added: “We hope that NICE and the NHS will continue to listen to patients and adopt only practices that can truly help people with M.E.”

The government said it wants to put patients at the forefront of any new guideline and said it welcomed high-quality medical research applications into M.E.


  1. For more information about M.E., visit meassociation.org.uk. For press enquiries, contact 07598032845.
  2. To watch the recording of today’s debate at Westminster Hall, visit parliament.tv – it was heard from 11.00-11.30am.
  3. The official transcript from the PACE Trial debate has now been published (Hansard):

    Carol Monaghan: “Finally, I thank the Countess of Mar and the ME Association for helping me to prepare for today. I also thank those living with ME, whose voices are not being heard.”

  4. Dr Charles Shepherd appeared with Nathalie Wright on BBC Radio Scotland, to discuss the PACE Trial and other issues about M.E.

 


 

17 thoughts on “Government-funded ME/CFS trial ‘one of greatest medical scandals of 21st century’ | 20 February 2018”

  1. This is a wonderful effort from Carol Monaghan, we ME patients will be forever grateful that she stood up and was so bold and forthright. Just whats needed. Many thanks and congratulations to Carol and the ME association for this bold strategy.

    Is it true that NICE have removed advice to have CBT/GET from the guideline as Carol stated
    ” I am pleased that NICE is reviewing its guidelines on ME and has removed the recommendations to embark on harmful exercise”. If so it needs to be widely advertised.

    On another note I notice that there is a move from the CBT/GET brigade to suggest that these therapies are OK for mild and moderate sufferers. But these are the very people who have been damaged by them. ME patients are very fragile how is it possible for them to tell who will be damage and who won’t.

    1. Thank you for your comment.
      The NICE guideline in its current format does not recommend ‘harmful exercise’. It currently says, for example, ‘1.4.6.2 The following strategies should not be offered to people with CFS/ME: Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen symptoms.’ But it is unclear if this is what Ms. Monaghan was referring to. We have certainly received no indication that NICE has agreed to remove Graded Exercise Therapy from any proposed new guideline, although we will continue to do our best to demonstrate to NICE that such a therapy should not be applied to all with a diagnosis of M.E. and that the NHS needs to apply only management strategies that have been tailored and agreed to by the individual.

  2. The response by the Minister of State Caroline Dinenage shows that the Government still don’t ‘get it’. She says the trial wasn’t funded primarily by the DWP but by the MRC – but that isn’t the point. The question is, why were the DWP funding it at all. They obviously had a conflict of interest, because if CBT and GET could be shown to work then it would reduce their welfare spending.
    Nor did she have any knowledge that the PACE authors’ conflicts of interest were not shared with the trial subjects (violating the Declaration of Helsinki). Astonishingly, Carol Monaghan had to tell her this, which begs the question, where have the people briefing Caroline Dineage been for the past five years? Don’t they know what’s been going on?
    Again, she states that the PACE results were independently reviewed and commended by the Cochrane Review, but in the recent legal action under the Freedom of Information Act, Professor Chalder was forced to admit “…that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel…” !
    The response of Caroline Dineage, on the behalf of the Government, was considerably uninformed and misinformed, smacking of laziness and negligence. This is wholly unacceptable, because a primary function of Government is to correct institutional failure and deliver citizens from the suffering it causes.

  3. …..was deliberately flawed to “remove people from long-term benefits and reduce the welfare bill”, a parliamentary debate heard.

    Sadly, while it is wonderful that Carol Monaghan has raised this and taken the liberty (?parliamentary) to interpret the facts and present her opinion of them and while I agree with most of what she says, it is alarming that, as an MP, she does not have a better handle on social security benefits in relation to medical conditions! I am quite sure that the DWP were fully aware that if ME/CFS were to be fully and comprehensively determined to be a psychological disorder, (such as; borderline personality disorder, eating disorders, pseudo-seizures and a whole host of complex psychologically derived life and health limiting disorders) the sufferers would be being handed a licence to determine lifelong social security benefits, to the degree, duration and amount that they, the sufferer, wish to determine. Doctors, allied health and social professionals or benefit investigators would be unable to challenge this as the degree of disability and suffering, which is the determination of such related benefits as there are, would be purely based on the claimants description/perception of their suffering and disability (and their ability/desire to describe them) and could only be contradicted by observable behaviours being recorded! Having any illness determined as a “psychological disorder” is in effect tying the hands of the DWP in their ability to investigate and get people off of any benefit!

    We must remember that GET and CBT are very good therapies which can help a tremendous amount of people with just about every kind of illness, from viral infections, post operative recovery, neurological conditions, post-chemotherapy and cancer. These therapies, GET and CBT, can help people get very much more out of life, physically, socially and spiritually, producing significant improvements in their physical and mental functioning. They can help people learn to walk and run again (physically and metaphorically speaking!) and for them to do so much quicker than they might have otherwise. That is why it is so important to have these therapeutic tools in the palliative care setting, such as in hospices. It is so important that we, the ME community and those who advocate for us, do not completely ignore the potential for help through these therapies, when appropriately applied to the individual with a full appreciation of the therapies limitations and its potential power to cause harm or exacerbate the underlying physical condition. Being helped by these therapies does not mean that your condition is a psychological condition. Sadly the vast majority of doctors and journalists did not seem to understand this! We should not join them in their ignorance or reinforce their prejudice.
    The fact that these therapies are far more effective in patients with, for example, cancer or MS should emphasize to anyone that these are therapies for physical conditions rather than psychological ones.

    For the DWP to have funded the PACE trial does not indicate that the DWP were trying to discredit ME/CFS sufferers as ‘fraudsters’, ‘cheats’ or lazy, weak willed, self absorbed malingerers, even if that is how we were made to feel by the largely ignorant medical profession and press. Taking a treatment that is effective in such a wide range of ‘life and living’ limiting conditions, from the purely psychological conditions to the physically lethal ones, and applying it to a severely ‘life and living’ limiting condition which we do not understand, and are struggling to find an effective treatment for, is not at all unreasonable or unscientific. What was wrong was the misinterpretation of the data, the harm that the therapy caused being covered up, the failure to disclose the raw data to peers and the all the lying and misinformation that went along with that resulting in scientific fraud, defrauding the funders financially and the subsequent harm to patients that resulted from this dishonesty.

    It would be far better if Carol Monaghan, instead of casting counter-intuitive accusations against the DWP, actually sore the DWP as the victims here also. She should be raising questions, perhaps in parliament, as to what the DWP intend to do about chasing down these fraudsters who defrauded the DWP of money (exactly how much was it?) for science that they did not do!

    1. Doctor Who, you say “We must remember that GET and CBT are very good therapies which can help a tremendous amount of people with just about every kind of illness, from viral infections, post operative recovery, neurological conditions, post-chemotherapy and cancer.”

      You need to be clear what you mean by “help”. Obviously if an illness is not a primary cognitive-behavioural illness then CBT can be merely of secondary help and only in patients who have cognitive-behavioural problems. And if an illness is characterised by systemic exertion intolerance then GET is contraindicated.

      Have you read Steven Lubet’s critique of defenders of the PACE trial? –

      “No reputable physician would claim that cancer is reversible through exercise and psychotherapy, much less boast about subsequent recovery rates. Thus, the experience of palliating cancer—or renal disease, or heart disease—with psychological interventions has no bearing on ME/CFS or the validity of the PACE trial (Wilshire, et al, 2016).”
      http://journals.sagepub.com/doi/full/10.1177/1359105317712523

      As for the DWP, I think you’re being naive. The DWP knew exactly what they were doing when they funded Wessely school psychiatrists to find ‘evidence’ of the effectiveness of CBT and GET in ME/CFS.

      1. mickeyd, I am sorry my post seems to have frustrated you in some way.

        By “help” I mean improve someone’s quality of life, avoid things that exacerbate a condition or its symptoms and learn ways of thinking or behaving to minimize the illness’s unwanted or restricting effects. The CBT and GET in the PACE trial, which seemed to be a ‘one size fits all’, was irrelevant, poorly designed and then misrepresented in its paper.
        I am a reputable physician who has employed individually taylored CBT and GET in patients with cancer, renal disease and heart failure to help reverse the life limiting effects of these illnesses. I have had patients who have dramatically improved and gone from bed-ridden, unable to think of doing anything enjoyable – to fit to walk, go home and enjoy life again, some for a considerable length of time. This is not through reversing their illness, but, ( through pragmatic pharmacy, OT and psychotherapy ) a reversing of, or dampening of, their symptoms. In a few cases, it has been through psychotherapy alone. In practice I found that many such hospice patients themselves had already gone a long way to improve their lot with various DIY psychotherapy techniques.

        I can assure you that ME/CFS is not any different to any other physical illness in terms of the patients mind and psyche being able to make the suffering and functioning of the patient better, or worse. In my experience, sufferers of ME/CFS tend to be better equipped than most to employ CBT in a positive and helpful way, as if the illness teaches them the skills they need, if they did not have them before. As for GET, well, the last thing an ME/CFS patient needs is someone else telling them how much their body can do! Which is what it would appear the PACE trial was doing. Remember, graded exercise therapy, where goals are set (but not necessarily attained) by the patient, the effect of the exercise monitored in the short term and monitored or recorded in the delayed term, so that the patient can determine how much, if any, exercise can be employed and with what effect, is what we do all the time. We call it pacing. Sometimes we do too much, out of some necessity or desire, and pay the price. Sometimes, in anticipation of such an event, we may go easy for a while. Always there is never enough ‘energy’ to do the things we need to do. Our lives change. The pain, the breathlessness, the ‘drunken fog’ tell us we will suffer more later, informing us, updating us, on whether the energy being expended and the discomfort being endured is worth it immediately and in the long run. The form of GET employed in the PACE trial was simply the ‘macho crap’ / lentil eating hill-runner version of ‘slightly more each time regardless’, as far as I can tell, or at least that is what everyone presumes. It signified a complete misunderstanding of ME/CFS.

  4. Doctor Who: “They can help people learn to walk and run again (physically and metaphorically speaking!) and for them to do so much quicker than they might have otherwise.”

    M.E. is not forgetting to how to walk and run (whether physically or metaphorically). Nor is cancer.

    1. I see what you mean. No I did not mean to infer that patients who are suffering from cancer, MS, heart failure etc. and who cannot walk have ‘forgotten’ how to walk. I was using the word ‘walk’ to represent, as it sometimes does; walk, jump, cook, drive, go to the toilet, climb stairs, sit in a chair and watch television or go to a pub or restaurant, perhaps even with a smile. In other words, anything that is the opposite of being bedridden.

      However, their physical capabilities can be so very different from before that to be able to walk they need to learn how to walk in a new, different way, with a different attitude and balance, within a new set of limitations or parametres. Some patients spent so much time grieving for how they used to be able to run up stairs, 4 at a time, and run for a bus, that they missed time they could have had going for a walk.

  5. Dr Who; You state “Having any illness determined as a “psychological disorder” is in effect tying the hands of the DWP in their ability to investigate and get people off of any benefit!”, Contrary to your statement when illnesses are determined to be psychological that allows the DWP to deny benefits! DWP as victims well after all we know about the DWP and its policy of removale of people from benfits that’s a very strange statement.

    Your argument in support of CBT & GET is another back to front case. GET is an abuse to ME patients and should not be allowed anywhere near ME and the CBT used in ME is not the same as used in other illnesses but a tool to further abuse patients by trying to persude them they are not ill.

    It’s well known that there has been collusion amongst government agencies and psychosocial researchers to commit fraud and it has been well documented over the years and exposed by FOI from ME researchers, patients and campaigners like the Countess of Mar.

    Carol Monaghan, needs all the support that we can give, everyone who fights for justice for ME is making a huge sacrifice of time, energy and much else. It is the time to be bold and Carol has done just that

  6. “…. when illnesses are determined to be psychological that allows the DWP to deny benefits! ”

    No it does not. What determines whether a person is entitiled to benefits or not is the effect the illness has on a claimants ability to work, or not, (JSA/ESA) and to undertake basic activities of daily living (DLA/PIP).

    There does not even need to be a diagnosis.

    So long as the claimant tells the truth, and has professional confirmation of their condition, it does not matter if the illness is entirely in their mind or their body. People with purely psychological illnesses, (pseudo-seizures, personality disorders, phobias, anxiety disorders etc.) do get benefits if their ability to work or undertake normal activities of daily living is affected.

    If you can find any guideline or legislation to contradict this I would be very grateful as I have had a long interest in this as a doctor, a patient/citizen advocate and a patient/claimant.

    As for the CBT / GET in the PACE trial, I think we are in agreement that the actual CBT and the GET in that trial were the wrong sort. The PACE CBT/GET would appear to have been based around the “you have lowered your pain threshold to dysfunctional levels and you are making yourself worse by avoiding exercise” hypothesis. This would seem to have been supported by various other poor quality ‘science’ being done to ‘demonstrate’ that ME/CFS sufferers don’t increase the firing of their neurons that inhibit the transmission of pain from the body to the brain as much as none sufferers do when given the same painful stimulus. Another case of someone trying to “misinterpret the data to please tha masta”

  7. I think you are indulging in very dubious circulatory arguments.
    Denying benefits and was the whole point of the PACE trial and that involved having ME patients redefined as suffering from a behavioral disorder. What would be the point in that if patients could still obtain benefits. ME patients lived experiences are totally at odds with what you are saying.

    Why are you doing this it seems a pointless discussion, I am always wary of long, long relentless posts of this sort, it seems aimed at wearing people down for no good reason.

    1. Where is your evidence that the DWP’s motivation for funding this trial, “the whole point”, was to deny benefits? Where is your evidence that having any behavioural disorder means that you do not get benefits? If you have any evidence you must share it as this would be ground shaking and people, civil servants and politicians/ex-politicians would face unemployment or even criminal charges.

      I remember, a few years ago now, it being debated in the media whether people with borderline personality disorder (a completely psychological disorder) who were receiving benefits for their inability to work and for the life limiting effects of their disorder, should have their benefits reduced or removed if they refused (as many BPD sufferers do) to engage with the psychotherapies offered. The idea ran aground on ‘human rights’ issues and the right for any patient to refuse treatment. The DWP are, through private companies with targets, denying benefits to all sorts of people who should be entitled to them, whether they have ME or not. Not one of those being denied benefits is being denied on the basis that their disability or limitation in due to a psychological problem. ME sufferers being denied benefits to which they are entitled has absolutely nothing to do with the PACE trial or who funded it (except for the prejudice and ignorance the PACE trial nurtured and reinforced in the incompetent and unempathic private assessors employed by the DWP which is a much bigger and more fundamental issue) To achieve a fair outcome of an application or reassessment of your benefit you need to be extremely good at understanding the forms, good at understanding the information booklets that describe what the forms really mean to say and to ask and to be good at remembering which “descriptors” are being referred to in which question or “box”. (There is a simple way to get round that last one by the way)

      You have offended me with presumptions about myself. “ME patients lived experiences are totally at odds with what you are saying.” My wife has had severe ME since 2003. Since being encouraged to undergo a brief, relatively gentle course of GET, which she had to abandon, she became bed bound by it, in 2010. She has been mostly bed-bound and 99% housebound since. I have suffered severe ME since 2010. I am not as affected as my wife but can still be house bound for weeks. I can be unable to self care, let alone care for my wife, and can be bed bound for days, pissing in milk bottles beside the bed and unable to make myself anything to drink or eat. My wife and I can identify many areas in our suffering where we employ, or have employed, CBT techniques to combat the pain, the breathlessness and the life limiting effects of our illnesses. I was without any benefit for a period of 18 months following an ATOS medical for my own ESA (Work Related Group), entirely dependent on my wife’s ESA (WRG) – yes she had been bed-bound for 2 years by then (!?). I was unable to claim JSA due to the fact that my GP and Hospital Consultant Refused to allow me to work, or even look for work. 2 Tribunals later, I was placed in the ESA (Support Group).

      The point to my raising this discussion is that if you, or anybody else, thinks that the DWP’s involvement with PACE was an attempt to “deny” ME sufferers benefits, you must provide proof because:-

      1. The DWP will in the first instance agree that they were, yes. They will say that they were doing so by hoping that ‘broad brush’ talking, perception and exercise related therapies that can improve the quality of life and daily living functionality of sufferers of almost all and every physical illness, as well as psychological illnesses, might be able to help sufferers of ME by improving their physical functionality and their employability and thereby reduce their genuine reliance on social security benefits.

      2. Obsessing over Westminster and Whitehall’s perceived or alleged covert complicity in the “disgrace that was PACE” is no longer helpful. It is unhelpful unless you want real justice for those of us damaged and disabled by it and/or wish to see those responsible for; the design and execution of the trial, for the intra-trial tampering, for the intra- and post-trial concealment of harm and the falsification of results, to be banned from using any public money (whether DWP, MRC or any other funding source) to do any research ever again and that such funds granted in future to those doing real research into the physical, immunological and physiological causes of the disease and the its symptoms.

      Personally, I would like those responsible for the design, execution and interpretation of PACE to be properly and fully investigated for, and charged with, defrauding the public purse. Attacking the DWP because they funded it, without proof that they were complicit in committing the fraud, will be counter productive for those of us who desire such justice and future support for real research. Attacking the DWP, making them allies of the PACE Defenders, when they can be seen as victims who were defrauded and potential allies in the quest for justice, does not help us acquire justice or funding for proper research from them, or from anyone else.

      If Carol Monaghan, SNP MP, has a genuine interest in ME sufferers and their fight for justice and research, then great. However, we need to be cautious and make sure that she is able do so without exercising the SNP Pavlovian reflex of barking and biting at every potential opportunity to make Westminster or Whitehall look stupid, unfair or criminal, whether based on fact or not.

      1. And Dear MayFly, we are on the same side, do not worry. My point is, in one sentence, let us not unnecessarily make an enemy of our potentially most powerful ally and empowerer simply because someone much smaller and weaker than them comes along, with an agenda of their own that is completely removed from that of ours, and says; “make my enemy your enemy and I will be your friend”.

      2. Doctor Who, have you ever considered that what you describe as “Obsessing over Westminster and Whitehall’s perceived or alleged covert complicity in the “disgrace that was PACE” ” is in fact an expression of justified anger? Are you aware that “…trial lead Peter White was an advisor to the Department of Work and Pensions (DWP) at the time the PACE authors applied for funding for the trial from the DWP (Faulkner, 2016).” ? (Keith Geraghty, Further commentary on the PACE trial: Biased methods and unreliable outcomes, http://journals.sagepub.com/doi/full/10.1177/1359105317714486). White & co had a track record of trying to psychologise M.E. and the DWP knew that.

        And in respect of your views regarding the efficacy of CBT and GET, are you aware that research in America shows that patients with M.E. have comparable mental health assessment scores to healthy controls? https://www.youtube.com/watch?v=y5s_Y12Zpck [Maureen Hanson, Probing Metabolism in ME/CFS, got ot about 5 mins into the video] https://www.youtube.com/watch?v=nU3__bp8DUk [Wenzhong Xiao, PhD and the Big Data Study of ME/CFS, go to about 4 mins into the video]

        How could CBT have any significant benefit for patients who don’t have significant cognitive-behavioural problems?

  8. I have had ME since 1991, and in that time I have deteriorated from moderate to severe. Like so many other people I could tell some horror stories about the attitudes towards me and the treatment I have received because of this sinister agenda to dismiss ME as a psychosomatic illness. I was sent to the mental health team in Southampton and assigned a keyworker whose training was in motivating people with clinical depression – worse than useless, and completely inappropriate, as ME is *not* a depressive illness. I was sent to a psychiatrist, despite the fact that ME is not a mental illness. The psychiatrist was convinced that a high dose of Prozac would cure me of ME, and got me addicted to it. I had to wean myself off it, very slowly, over eighteen months. I was sent to an OT nurse who was convinced that CBT would cure me. When it didn’t, she declared that I had been ill but I wasn’t ill any more – I just *thought* I was. I was sent to an ME clinic who could do nothing more than advise on pacing – advice that didn’t take into account the interferences and disruptions of life, as it advocated set rest periods at certain times of the day. One of the saddest things I saw there was someone who had had ME for 27 years (that would be 37 years now), who went there expecting a cure.

    I have since discovered that what has been done to me and so many others like me over the years stems from a drive to stop as many people as possible from claiming sickness benefit.They chose to ignore the inconvenient finding of the World Health Organization who categorized ME as a neurological illness way back in 1969. I’m not surprised that the likes of Professor Sir Simon Wessely is so much the darling of successive governments on this matter for so long. He has the gift of telling very powerful, influential people what they want to hear, even if it’s all lies or at best, bad science that leads to false conclusions and must be discredited. Wessely is a psychiatrist, not a neurologist. He had no business becoming involved with the care of people with ME at all.

    This attitude has been enhanced by inflammatory articles in the mainstream media – itself written by people who serve certain agendas – dismissing us as benefits fraudsters who are faking illness. We have been met with hostility, ridicule or at best, a lack of understanding, by people taken in by the lies and misconceptions.

    It’s way past time that the record was put straight, and that proper scientific research into the causes of ME – and perhaps ways to control the symptoms, if not cure it – was given the funding it needs. Battling chronic illness is bad enough, without having to fight the agencies and support networks who are supposed to help us. Evidently, people have forgotten that once, ME was nicknamed ‘Yuppie ‘flu’, because it seemed to target high-flying career people in pressured jobs. That label doesn’t jibe with Wessely’s claims that people with ME ‘enjoy being in the patient role’ and ‘have learned patterns of helplessness’, does it?

  9. Within benefits assessments, although the regulations may state that proper recognition of disabilities should take place, the practice remains largely that any indication of uncertainty around any presentation of incapacity / disability leads to discounting of the claimant’s needs and eligibility – and that often to an extreme degree.

    Prejudice around ‘unexplained’ or ill-established presentations comes from ‘both sides’, and, while it can be the case that claimants can succeed due on balance to psychological aspects affecting their disability, the continuing trend is to discount resulting disability (particularly in terms of chronicity), where attribution of psychological causality can be selected from the claimant’s presentation.

    While the DWP’s concerns were not necessarily a major driver of the PACE trial’s creation, compared to the preceding arguments over such development processes and publications as the 1996 “Chronic Fatigue Syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners”, there was significant cross-over in NHS, private medical insurance and DWP advisory responsibliities amongst the more prominent members of an overly influential minority amongst (particularly liaison) psychiatrists and likeminded psychologist, public heath advisors, etc – lobbying for the adoption of a reductive and restrictive recognition of presentations related to unexplained chronic fatigue plus other symptoms with unclear causality – who conceived PACE as a means to reinforce their position with a sizable ‘evidence base’.

    But the additional funding which the DWP provided allowed the trial to meet its budget, plus add on additional aspects. And, it the MP got her allocation wrong – citing the DWP as the major funder instead of the MRC – the minister was similarly wrong in stating the net, core project cost rather than the actual costs.

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