Trial by Error: NICE Rejects My FOI Request

By David Tuller, DrPH

The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since the agency also recently rejected similar requests from the Countess of Mar and the ME Association. However, NICE’s response to the FOI request, which I received on Friday, contains some useful information and clarifies the decision-making process. I have included the NICE response below, but here are some key observations.

The 2007 guidance, called CG53, endorsed cognitive behavior therapy and graded exercise therapy as the treatments of choice. According to the FOI response, the surveillance team that drew up the recently published “consultation document,” which recommends no change in this guidance, includes four NICE staffers: a technical analyst, a technical adviser, a clinical adviser and an associate director. In developing their proposal, they consulted with seven “topic experts”–three psychiatrists, two neurologists, a pediatrician and a patient representative. The surveillance team’s provisional decision to leave the guidance as is triggered this month’s two-week period for receiving comments from stakeholders. The final call will now be made by a group of eight top NICE employees, collectively called the “guidance executive.” Among the eight are Sir Andrew Dillon, NICE’s chief executive; Mark Baker, director of the Centre for Clinical Practice; and communications director Jane Gizbert.

According to the FOI response, four of the topic experts consulted were members of the committee that developed the guidance in 2007. That list included Professor Esther Crawley of Bristol University, who could presumably be the pediatrician among the topic experts. (For those who have not followed this saga closely, Professor Crawley falsely accused me of libeling her in two high-profile lectures this year—her inaugural address at her own institution and a talk to the British Renal Society. Despite my multiple efforts to extract an explanation from her, she has failed to provide any documentation for this ridiculous allegation.)

It is inappropriate and unsatisfactory that psychiatrists were the largest group represented among the topic experts. Apparently NICE still fails to recognize that the disease in question is most emphatically not a psychiatric or psychological disorder; the agency apparently accepts without question the specious perspective of the cabal of U.K. psychiatrists, psychologists and others who have hijacked the debate for the last three decades. The 2015 reports from the U.S. National Institutes of Health and the Institute of Medicine (now the National Academy of Medicine) authoritatively documented that ME/CFS, as American government agencies now generally call the illness, is an actual organic disease and not a figment of patients’ fevered imaginations.

The PACE/CBT/GET counter-narrative—that deconditioning alone accounts for the perpetuation of the symptoms, and that patients harbor “unhelpful beliefs” about having a medical condition—is not grounded in legitimate scientific research. Despite the desperate attempts by the PACE investigators to defend their pet theoretical framework, it is now clear to the international scientific community that the study’s reported findings in The Lancet (2011) and Psychological Medicine (2013) were wildly inflated—the result of rampant outcome-switching and other egregious methodological lapses.

In addition to PACE and other Oxford criteria studies, the NICE document cites the Cochrane reviews of CBT and GET in support of its conclusion. First of all, Cochrane includes the illness it calls CFS in its mental health disorders section, which immediately raises questions about the organization’s biased perspective. Moreover, given the inclusion of PACE and other studies using overly broad case definitions in the Cochrane analyses, the NICE consultation document is seriously misguided to cite these reviews as reliable evidence. After all, the Cochrane analyses cannot be legitimate and accurate when the studies they include are not. (I plan to take on Cochrane in an upcoming post.)

Both CBT and GET involve telling patients that these approaches will help them get better—an obvious method of biasing the results, especially given that the study was not blinded. The treatments appear to provide modest boosts in subjective measures but no long-term benefits over other treatment or management approaches. Neither PACE nor other studies from this group of researchers have documented objective improvements to match these subjective results; indeed, objective measures have consistently failed to support the claims of improvement and recovery. The significance of these salient facts appears lost on the NICE surveillance review team, which apparently suffers from the same “dysfunctional cognitions” as the PACE investigators about the efficacy of their strategy.

In normal circumstances, it might be appropriate to include committee members who worked on previous guidance as topic experts in the review process. But these are not normal circumstances. With this illness, relying on these committee members is a bad move. It stands to reason that those who developed the utterly inadequate and potentially dangerous 2007 guidance would be unwilling to challenge their own past perspective that GET and CBT are effective. This is especially true given that the PACE authors and other adherents of the biopsychosocial approach have consistently demonstrated their unwillingness to accept any criticism that challenges their viewpoint. They refuse to acknowledge, for example, that any study in which participants can meet outcome thresholds at baseline, before any treatment at all, has no place in the scientific literature, as many dozens of well-known experts have made clear in open letters to The Lancet and Psychological Medicine.

In Professor Crawley’s case, her research on the prevalence of the illness among children consistently conflates the symptom of “chronic fatigue” with “chronic fatigue syndrome.” This conflation serves to dramatically inflate the numbers of those purported to be afflicted. Her work, such as her proposal for the FITNET-NHS study of online CBT for kids, also misrepresents the NICE guidance that she herself was involved in developing, in ways that appear to render post-exertional malaise as an optional symptom rather than a required one. When called to account for these distortions, she chooses to insult her critics rather than provide satisfactory explanations of her flawed methodological choices. It is therefore highly troubling that the NICE consultation document cites FITNET-NHS as important new research that will inform future guidance.

The NICE response to my FOI request indicates that the agency reached out to the topic experts seeking their opinions on being identified. Three of them expressed concerns about having their names made public; a fourth could not be reached. The response does not indicate the answer, if any, from the remaining three; perhaps they didn’t object at all. Nevertheless, based on the responses from the three who objected, NICE has decided to keep all the names secret.

According to the NICE response, here’s why the three topic experts objected: “Reasons given include their experience, and that of other experts in the field, of being connected with this topic area. These included concerns about personal harassment, previous abuse and threats they have been subjected to when involved in work on this topic.”

It needs to be stated clearly that the PACE authors have routinely wielded this overhyped claim as a way of discrediting critics. However, the tribunal decision last summer that ordered Queen Mary University of London to release the raw trial data dismissed the claims as unfounded. The tribunal decision noted pointedly that the only reliable evidence presented to the court about such behavior involved an incident in which Professor Trudie Chalder, one of the three main PACE investigators, was heckled at a lecture. Professor Chalder herself acknowledged in her testimony at the tribunal that none of the investigators had received death threats, despite their habit of hyperventilating about the issue of abuse from patients. As has been previously documented, the wave of news stories about these purported death threats was a public relations stunt organized by the Science Media Centre.

So have some CBT/GET investigators received offensive e-mails or other communications that have upset them? I have no reason to doubt it. Perhaps some of these messages have even contained what could be construed as threats. But Professor Crawley and her colleagues have routinely deflected attention from the defects of their research by wrapping themselves in martyrdom, complaining vociferously that even the filing of freedom-of-information requests constitutes harassment—a preposterous argument, given that patients have a legal right to seek key information about publicly funded trials. And these researchers also frame accurate criticism as vexatious and illegitimate. That’s what Professor Crawley did earlier this year when she accused me of “libelous blogging” in a slide shown during her two speeches.

So despite its claims of valuing an open and transparent process, NICE is allowing the topic experts involved—including four whose names are already public as part of the 2007 guidance committee–to cloak themselves in anonymity. That is not acceptable. Given the enormous importance of this reassessment of CG53 and the huge public interest in understanding how the decisions are being made, NICE should reconsider this rejection of my request.

I am appealing to the agency to overturn its initial decision. Following the agency’s expected rejection of my appeal, I will then appeal to the Information Commissioner’s Office. Whatever the ultimate outcome of my request, the FOI response suggests that it is critical that the members of the guidance executive recognize that a pro forma ratification of the 2007 guidance will be a public relations disaster. More than 15,000 people signed the ME Association petition protesting the NICE provisional decision; that’s a lot of very, very unhappy patients. With PACE now exposed as a dishonest and even fraudulent piece of research, the ground in the debate has shifted. It is no longer time for business as usual.

**********

Here is the substantive part of the NICE response to my FOI request:

Thank you for your request for information under the Freedom of Information Act (FOIA), received at this office on 07 July 2017. You requested the following information about the review of the CFS/ME guideline (CG53):
 
1.       The number of people on the expert panel who will review input from stakeholders
2.       The number, if any, of these people who are the same as those who were on the panel that developed the 2007 guidelines
3.       The names of the people on the expert panel reviewing the CFS/ME guidelines, those currently serving and those who have served in the past year.
 
Background

There is no expert panel which reviews input from stakeholders in our review process. You can read more about how we check that published guidelines are current and accurate in our guidelines manual.
 
For this review we followed the process for the 4 and 8 year checks. It includes extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified are also considered if they fall within the referral of the published guideline. A literature search is conducted across a range of sources. These may vary from topic to topic. They are selected according to their relevance to the topic and are based on those used in the published guideline.
 
Topic experts and members of the original guideline committee are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the recommendations made and we publish the membership of them. We do not routinely publish the identities of topic experts because while they may express an opinion they are not part of the decision making body. 
 
NICE’s surveillance review team summarises the relevant evidence and highlights any studies that may have an important impact on our recommendations. The main themes of new, relevant evidence across the guideline are also summarised, along with any other identified information (such as changes in licensing indications for a medicine or updated national policy). The surveillance team is made up of NICE employees – a Technical Analyst, Technical Adviser, Clinical Adviser and Associate Director.
 
The information identified as part of the surveillance review forms the basis of a review proposal for NICE’s Guidance Executive. In this case the review proposal was a public consultation document. When the information summarised in the review indicates that a ‘no update’ decision should be considered there is a 2‑week consultation with stakeholders who are registered for the published guideline.
 
The final decision about whether an update is need is based on a balanced assessment of new relevant evidence published since guideline publication, the views of the topic experts, feedback during consultation and other sources of information on the continued relevance of the guideline. The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process (including sign‑off by the Associate Director and Director) before submission to NICE’s Guidance Executive. It is Guidance Executive that takes the decision to update the guideline or not.
 
Response to your request under the FOIA

Given the background above, in responding to your request, I have assumed that by ‘expert panel’ you mean the topic experts who were asked for their opinion on the relevance of the published guideline.
 
1.       The number of people on the expert panel who will review input from stakeholders.
Seven topic experts were asked for their opinion on the relevance of the published guideline.
 
2.       The number, if any, of these people who are the same as those who were on the panel that developed the 2007 guidelines.
Four of these people were also members of the original guideline committee.
 
3.       The names of the people on the expert panel reviewing the CFS/ME guidelines, those currently serving and those who have served in the past year.
We hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1). However, we consider that the names are exempt from disclosure under 2 sections of the FOIA. We explain these exemptions and why we have applied them below.
 
Section 40 – personal information

Section 40 provides an exemption from the right to know where the information requested is personal data protected by the Data Protection Act. Personal data is data that relates to a living individual who can be identified from that data. The names of these individuals is clearly personal data.
 
Under section 40(2) we are withholding the names of the topic experts because we consider that to release it would contravene the principles of the Data Protection Act. In reaching this decision we considered whether disclosure would be fair to the individuals concerned, the consequences of disclosure, the reasonable expectations of the individuals and any legitimate public interest in disclosing the information.
 
NICE does not routinely publish the names of topic experts who contribute to the review process therefore the individuals had no expectation that this information would be made public. We wrote to the topic experts to ask them if they had any objections to their identities being disclosed to the public, and if so, what those objections were. Three of them were strongly opposed to their identities being made public in this context and one could not be contacted within the time available.
 
Reasons given include their experience, and that of other experts in the field, of being connected with this topic area. These included concerns about personal harassment, previous abuse and threats they have been subjected to when involved in work on this topic. We were sent a link to a news story from the Guardian describing threats and abuse directed at researchers and professionals in this field.
 
NICE is also concerned that disclosing the identities of the topic experts would have a significant impact on our ability to get experts to contribute to our work on this topic in the future. This point was supported by Mr Justice Simon in the judicial review that followed the publication of the original guideline. While Mr Simon was referring to guideline committee members in his judgement we consider that the impact would be the same if the identities of the topic experts asked for their opinion in the review process were made public.
 
When individuals are members of a guideline development group (also known as a guideline committee) their identities are publicly available on our website because the membership, as a whole, is responsible for the recommendations made. As described above, in the review process, the topic experts are asked for their opinion but the review decision is taken by NICE’s Guidance Executive whose membership is publicly available on our website.
 
As 3 of the topic experts expressed concerns over their identities being made public and 1 could not be contacted we consider that it would not be fair to make the remaining names public as this could have the effect of unreasonably focusing activity on these individuals. 
 
We recognise the public interest in ensuring public authorities remain transparent, accountable and open to scrutiny. We also recognise that disclosure would enable individuals to understand decisions made by public authorities in more detail, however on balance we do not consider the public interest in disclosure overrides the interest in maintaining these individuals’ privacy.
 
We therefore conclude it would not be fair to disclose the information under section 40(2) of the FOIA.
 
Section 38 – health and safety

Section 38 states that information is exempt from disclosure if its disclosure would, or would be likely to
(a)    endanger the physical or mental health of any individual, or
(b)   endanger the safety of any individual
 
The topic experts, and other experts in the same field, have specifically referenced threats and harassment they have been subject to in the past, as described above.
 
We have also considered if some of this information is already in the public domain because of the individuals previous work in this or other fields. As 4 of the topic experts were also on the guideline committee, their interest in this field is already in the public domain. However, in the context of the review, consultation and the campaigning activity around NICE’s proposal, we consider that releasing the information at this time would create a direct link between the experts and the review proposal and would raise their profile. Therefore disclosure at this time is likely to increase the risk that these individuals would be targeted and that this could lead to additional harm.
 
Mr Justice Simon also referenced unfounded allegations made against guideline committee members and his judgement stated that ‘unfounded as they were, the allegations were damaging to those against whom they were made; and were such as may cause health professionals to hesitate before they involve themselves in this area of medicine. A perception that this is an area of medicine where contrary views are not to be voiced, and where scientific enquiry is to be limited, is damaging to science and harmful to patients.’
 
Given the volume and nature of the correspondence (enquiries, petitions, letters, activity on message boards, Freedom of Information requests) we have received to date we are concerned that the experts may be targeted individually by any campaign and that such activity would impact on experts’ wellbeing and on their and others’ willingness to contribute to the work of NICE in the future, especially when they are not part of the decision making body.
 
We can’t be certain that the release of the withheld information would put the individuals at risk but we consider that there is sufficient evidence to conclude that they would be singled out for harassment, intimidation and possibly threats of violence. 
 
This exemption is subject to the public interest test. We accept that there is significant public interest in being accountable and transparent for the decisions we take and for individuals under understand how we make our decisions. However, NICE also has a duty to protect the physical and mental wellbeing of the individuals concerned.
 
In this case the makeup of the decision making body, Guidance Executive, is already in the public domain. The review proposal is also publicly available and contains comprehensive discussion of the evidence including the feedback from the topic experts.
 
NICE operates openly and transparently. All of our guidance development processes are published in detail on the website. We believe the process and information on which the proposal is based is publicly available and subject to consultation. We consider that those with an interest in this guideline have sufficient information to be able to understand both the process and consideration of the evidence.
 
Given the concerns raised by the individuals and other evidence of previous incidents of experts in this field being targeted for harassment, including threats of violence, in the past we conclude that the public interest in disclosing the information does not outweigh the interest in maintaining the exemption in light of the likely risks to the health and safety of the individuals.
 
We therefore conclude it would not be fair to disclose the information under section 38 of the FOIA.

Comments on this entry are closed.

  • Erica Mogwai

    So harms to patients = fine.

    Actually expecting their “experts” to stand up to scrutiny and disclose their conflicts of interest = “hey there were once claims of harrassment, we will ignore that the courts ruled them false! Nope, we won’t tell you who they are!”

    Thanks NICE. I’ll remember to include you in my obituary as part of the reasons for my death since I now can’t get any help for my illness at all…

  • AndyPR

    Thank you for your continued efforts David, it’s very much appreciated.

  • Robert McMullen

    Thank you, once again, David.

  • Lou Corsius

    The National Institute for Health and Care Excellence do create very convincingly the impression that they have a lot to hide. Any institute with a public task has an obligation to be transparent. The fact that they refuse to do so is extremely disturbing. In the end the truth will come out, exactly what happened to the PACE-trial. Why not be honest right now? Be brave, and you will encounter more appreciation in doing so and you will spare yourself and many other a lot of effort, stress and money. Because in the end, be assured, the truth will prevail.

  • Bluesky

    So basically their only “evidence” of harrassment is a Guardian article, which will be this one, I assume:

    https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis?

    Or possibly this one :
    If my team’s research on ME is rejected, the patients will suffer

    https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research?

    Neither of which offer any kind of actual evidence at all apart from the assertion from the “researchers” themselves, and which have been thoroughly debunked by the Information Commissioner’s decision on releasing the PACE data.

    The sheer incestuousness of the British medical and scientific establishment is just unbelievable.

  • Valentijn

    It’s simply outrageous that NICE is interpreting a large number of legal and civil inquiries to mean that their experts’ “wellbeing” will be at risk, and even subject to threats and intimidation. They should be completely ashamed of themselves for even suggesting such a thing, and whoever wrote those disgusting accusations regarding patients should be looking for a new job.

  • 1SarahL1

    Do you think someone has contacted the accounts dept at NICE yet to see how much public money could be (mis)spent on defending the indefensible?

    Many thanks for your continued efforts David – so very much appreciated. Today should have been a good day with the publication of the JHP special issue dedicated to the PACE frauds but, as per usual with ME, there is never a good day. Tens of millions of children and adults worldwide must continue to suffer for the sake of the privacy of up to a total of 7 (SEVEN) people! Suffer… we suffer in a multitude of ways that must people cannot imagine, mainly thanks to the action of the Wessely/ BPS school who pay no heed to relevant research conducted outwith their moronic domain.

  • Brenda Vreeswijk

    I couldn’t read all of it, cognitive wise I’m a mess at the moment. But following this saga for a while now so I guess that all their arguments are based on nothing but their own lies.
    Thank you for keeping on fighting David.
    Try to read this later and see if my conclusions were right.

  • A. van Braak – van Remundt

    Thank you very much for all you do David Tuller!

  • Peter Trewhitt

    So depressing that NICE are still parroting the PACE appologists’ party line.

    When does bad science become criminal negligence or malpractice?

    Eventually the sheer number of contrary papers and the sheer weight of the biomedical evidence will force change, but it is so depressing that the British medical establishment are colluding to protect a handful of researchers’ failure to acknowledge any criticism at very real cost to many thousands of patients.

    It will take decades to repair the structural damage to research and patient care in the UK caused by PACE and related research, but further those patients suffering very real deterioration in health from PACE inspired ‘therapies’ may never recover.

  • Susanna Degaardt

    Thank you Dr Tuller. It is a scandal.

  • Paul_Watton

    Much as NICE might try to clothe their activities in a complicated cloak of legitimacy, their saccharine words still reek of something nefarious and putrid.
    Keep following the scent David. Well done.

  • Lady Shambles

    Urgh! Trotting out Judge Simon (let’s hope the whole story of the JR will be played out on the public stage one day soon) and that old chestnut of the Guardian article is absurd. Gaslighting par excellence! Surely the time really has come for some sort of ‘class action’ by patients who have been damaged by the Guideline? I just wish I felt as ill as I did in 2007 when it was cobbled together, my trajectory is only downhill now and the pace is gathering all the time (no pun intended). I want a life. I’ve wanted my life back since ‘normal’ stopped for me in 1969.

  • GQ

    As can be seen now from your investigation and the various other lines of investigation of the PACE trial scandal and the serious undisclosed conflicts of interest, the NICE judicial review of 2009 for CG53 was a travesty of justice.

    It is important given that these people have concealed their conflicts of interests including with insurers in the PACE trial and NICE in the past and abused those asking questions, that conflicts of interests need to be fully investigated and is imperative.

    However by concealing and hiding the names this would allow these conflicts to also be concealed and make it impossible to expose them.

    This position and stance won’t stand up to scrutiny and legal challenge.

    NICE will have to defend itself in court…again!!

  • Diane Kirk

    Same old illogical rubbish as a refusal to your FOI request. Shame they ignore patients interests. Keep chipping away at them David, thanks.

  • Sean

    Who is the patient representative on the panel? One of the ME charities?

  • Samuel Eglington

    Yes I thought it was interesting that they referred to that. It’s a subject that David Tuller should well cover given the time to research it.

  • Art Vandelay

    Thanks again, David. Given that the (likely) members of NICE’s expert panel are involved in providing GET and CBT to those with ME/CFS, how can this not be a conflict of interest? The very survival of their empires depends on NICE continuing with the same flawed treatment guidelines.

  • Lisa Petrison

    Thank you for your work, David.

  • clark ellis

    No doubt this will end with another FOI tribunal and the judge asking again to see any actual evidence of harassment. That’s where we need to be, not these claims without evidence. I also think any evidence, if it exists, would have to be quite compelling to outweigh the interests of transparency and public interest. let’s not forget we are talking about how every person with ME is treated in this country, it’s a massive deal to hundreds of thousands of people.

    I do think it’s disgusting, this whole thing stinks. Unlike in 2007 though, we have learned how to challenge this sort of bullshit.

  • Wendy Boutilier

    The School of Wesseley claim “CFS” is a syndrome of “fatigue” (chronic fatigue being classified as a mental disorder in ICD-10 at F48.0) and that “CFS/ME” has dual classification. They do so despite the formal warning from WHO on 23rd January 2004 that dual classification is not permitted:
    “This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization’s International Statistical Classification of Diseases and Related Health Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive.”
    They don’t want to publish their sources because they don’t want to admit that they have been using ME/CFS despite being warned by WHO.
    The American IOM has added Myalgic Encephalomyelitis to the American ICD as of October 2015 and CFS was included under the SEID umbrella. The ICC 2011 is diagnostic criteria for ME only. The IOM has not published a criteria for CFS.
    It’s blatantly clear that people with ME and those with CFS are being targeted by the School of Wesseley as well as NICE. There is no accountability but I’m pretty sure thousands of us would be happy to sign up for a class suit.

  • Paul_Watton

    So, the NICE Guidance Executive have a difficult decision to make: Do they take notice of what the patient charities have very clearly told them in response to the ultra-short consultation, and order a complete rewrite of the guideline,
    or
    Do they stick by their supposed “expert’s” recommendation, and do nothing – thereby saving those people from professional humiliation?

    I don’t expect the outcome to be so straightforward, nor that the interests of patients will be held paramount in the decision-making process. What we can be pretty sure of is much obfuscation and delay by NICE.

    In the meantime, good luck with your appeal to the Information Commissioner David.

  • Andy Hugh

    There would certainly have a reasonable
    expectation of disclosure, particularly with respect to declarations of
    interests. Personal wishes for non-disclosure are irrelevant.

  • Maggie Wallace

    I was there. Unfortunately I didn’t even try to take notes – just being there as support was as much as I could manage. I do remember a lot of what appeared to be clandestine muttering between lawyers outside the courtroom though before the case finished. There were other supporters there too:
    https://www.flickr.com/photos/liverpool-leftovers/3272558378/in/album-72157613630803045/

  • Barbara Cohen

    It beggars belief that PACE trial authors are still peddling the ‘harassment’ excuse when it has been shown up as unfounded. Thank you for your work on behalf of ME/CFS patient, David. I look forward to reading what you have to say about Cochrane.

  • Sheila Campbell

    The UK medical establishment has no credibility what so ever, embarrassingly awful! They don’t seem to give a toss for the safety of patients or for scientific process. Thanks so much for your work on this, I’m sure it will have to go to the ICO.

  • Scott Simpson

    The depth of denial and cronyism in the cult of PACE never fails to astound.

    However, I’m excited with anticipation to witness their looming downfall for it will mean that millions of people with ME around the world will less likely be harmed by fraudulent research(ers).

    Bravo David, keep tightening the screws.

  • weyland

    It doesn’t much matter which individuals are behind this as long as the NICE guidance for CG53 is managed by IAPT. There is no reason that the group that manages guidance for depression, OCD, anxiety, PTSD, etc. should be managing a proven neurological disease such as ME. How do they justify this? This is what needs to change before progress can be made on NICE guidelines.

  • 1989

    Thank you David!

    Once again we are hearing those old pro PACE/CBT/GET lines about how “deconditioning alone accounts for the perpetuation of ME/CFS symptoms” and that “patients harbor unhelpful beliefs about having a medical condition which prevents them from getting better”.
    Although gloriously unsupported by any kind of science, these convenient theories are still very popular in certain circles and the effects are disastrous.

    I myself have been part of “treatment programs” where we as ME/CFS-patients were told that we could all get better if we just left our “unhelpful beliefs” behind and embraced these new ideas that our illness was “all in the mind” and could be reversed with the right kind of thinking and some “graded exercise therapy”. Since these KBT/GET people were the only ones who offered us any hope of “recovery” we all BELIEVED them. We believed them with all our hearts, because we desperately wanted to. Our lives had all been destroyed by ME/CFS and we would all do ANYTHING and/or believe ANYTHING if there was a chance that it could make us better.

    And we kept believing as we went through the treatment programs filled with psychobabble and gradually increased physical exercise. We still believed as we got worse and worse. Even as some of us became completely bedridden and had to quit the program. We kept going. I personally told myself, over and over again, that it was just a question of “powering through” and that my old healthy life was waiting on the other side of all these “temporarily” increased symptoms. I was such a good soldier that I was even brought forward to be interviewed about the program by students of psychology and physical rehabilitation. I kept talking about how great the program was and how I was already feeling better. (Not because it was true, but because I so desperately wanted it to be…)

    A few months later I couldn’t even make it out of my apartment. My symptoms had increased to the point where I was in a state of constant pain, nausea and extreme fatigue. Only then did I finally accept the thought that this KBT/GET stuff might not be all it was cracked up to be. However, the damage was already done and my condition had been worsened. For good.

    Now, years later, those same ideas about what ME/CFS is and how it should be “treated” are still being put forward. Several institutions responsible for creating care programs for ME/CFS-patients are still using the PACE trial like a “how-to manual”, even AFTER it has been exposed as a fraud.

    This has to stop.

  • Erica Mogwai

    If you’d be able to (due to the ME/CFS) and willing to it might be worth noting this post made by ME Association recently:

    https://www.facebook.com/meassociation/posts/1458720357518951

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  • Milo Paradiso

    Thank you David. Knowing who did the review matters a lot and would be quite telling as of why status quo remains despite overwhelming evidence this is not a disease of the mind nor does pragmatic rehabilitation is helpful. The BPS has not shown they are attending international me conferences (or the Invest in ME conference every spring in London).

    Status quo is intenable for all patients, but especially for those living in the UK. The refusal to engage from the very same group that wrote the guidelines is telling of their allegiances and it is definitely not the best interest of the patients.

    Thank you for appealing this decision.

  • Steve Hawkins

    Wow! So the purpose of NICE is to protect the health and vested interests of a small number of maverick psychiatrists and psychologists over and above the health of all the thousands of people their misguided beliefs have harmed! NICE guidance is supposed to be for patient welfare: not a cosy club offering jobs for the boys!

    NICE itself is not fit for purpose and is not qualified to make any guidance on the diagnosis or treatment of M.E. It is plainly very obvious that there are hundreds of real experts in the disease who would be very willing to provide NICE with up to date evidence sufficient to produce a satisfactory new guideline: the only people who might be in the category of those who might be put off commenting, are the ones who are trying to hide their names but are *still commenting*! If only it were true that these dreadful people really were put off, patients would be rejoicing all over the World! Sadly: these have proved to be more unshakeable than the most tenacious of leeches or bulldogs!

    The absurdity of seeing NICE simply parroting the tired old disproven excuses we’ve been hearing for a decade or more from their favoured advisers, is both mind boggling and exasperating. If this is borne out in the widely discredited guideline being left unchanged, then there really must be an inquiry into whose interests the Institute is really serving: because it certainly is not that of the patients.

  • Paul_Watton

    The logic which NICE seems to be applying here is that the “experts” we have consulted are “experts” because we say that they’re experts.
    We won’t tell you who they are, in order that you can make your own value judgement on that score. You must just accept our decision that they are “experts”.
    If it then turns out that they don’t actually know what they’re talking about, or have vested interests in peddling a certain line, then “tough” – deal with it.
    Furthermore, if the advice that they subsequently give is actually a load of crap, we don’t care. Their advice isn’t important anyway, so we’ll leave it to the stakeholders to do our job for us and pull straws in a Guidance Executive meeting in a few months’ time.

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  • Fiona

    Thank you David for what, IMO, is your clearest, best argued and most strongly worded blog yet!

    Lemme see if I have this straight. Four of the ‘topic experts’ are the same ones consulted for the 2007 guidelines. Three are psychiatrists, and three objected to their names being made public because they feared intimidation and harassment based on what they say is past experience.

    NICE is only considering literature that falls within the purview of the 2007 guidelines – which are squarely based on the psychosocial CBT/GET model; a model demonstrated time and again to be utterly wrong, inappropriate and even harmful for people with the physical disease ME/CFS (as distinct from “chronic fatigue”).

    What’s more, NICE considers that the privacy of these three ‘topic experts’ overrides the public interest test. In other words, NICE is putting the welfare of three people ahead of the welfare of the UK’s 250,000 ME/CFS sufferers … not to mention millions more around the world whose health and future life prospects are affected by CBT/GET-based treatments. God help us!

  • Paul Fox

    Thank you David, once more. What they had in mind when they said that the “guidelines” were not based on PACE seems to be clearer from a parts of the reply to your FOI request. They refer to “experience” of “experts'” in the field, and to the judicial review. What that court ruling effectively did was give licence for NICE and its “experts” to include whatever they choose in their guidelines, whether scientifically justified or not. For the court, it appears that the GOBSAT basis for decisions, however mutually backscratching and mutually admiring the participants, is fine. Clearly, NICE are going to reply on that court ruling, despite the fact that they thought that PACE would settle the scientific argument in their favour but did anything but. The only way to crack this is probably for a further, successful, judicial review.

  • Lady Shambles

    I’m inclined to think the ICO now has a dedicated ‘Wessley School Complaint Team’ . I imagine the personnel at the ICO are becoming very familiar with the BPS MO.

  • Andy Hugh

    “experts in this field being targeted for harassment, including threats of violence”
    That is so very irrelevant.
    By being an expert, there’s a reasonable expectation their information would be shared.

    Esther Crawley habitually criminalises the victims of GET and CBT in her talks; victims who dare to speak out about the harms these treatments cause. It would be political suicide for Crawley and those in her psychosocially biased cartel to enter into proper scientific debate.

  • Nickstopheles Pilkington Riffe

    Surely just the results of the reviewed PACE data following the FOI court case constitutes ‘new relevant evidence’ in it’s own right regardless of anything else?
    That alone should disqualify anyone that had any involvement on either side being involved in any part of the surveillance process or the review process.
    If it hasn’t, either the committee is being deliberately mislead or it is biased in its own right.
    To project any form of transparency, honesty and integrity I would have wanted to see a neutral surveillance team and review team.
    This still seems to smack of the Government and various insurance companies having a hand in the outcome of the enquire.
    Finance over health. Never a good solution.

  • Paul Fox

    Here is a link to the judgement of the Judicial Review:

    http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html

    As you will see, it really is left up to those sitting around that table, whether worshipping at the feet of the emperor or not, to do exactly how they see fit.

  • Shirley Powers

    Thank you David! So many patients’ lives are at stake due to this fraudulent PACE research and treatmdnt guidelines. It’s quite telling that they have much to hide by refusing to be transparent.