Trial By Error: The NICE “Topic Expert” Reports

By David Tuller, DrPH

My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) was for information about the experts consulted in the current process of reviewing CG53, the 2007 guidance for the illness the agency calls chronic fatigue syndrome/myalgic encephalomyelitis. In its response, the agency explained that seven topic experts had been consulted in the process of preparing the surveillance document, which recommended leaving the guidance as is.

(I have previously written about the NICE review process on CG53 here, here and here. My e-mail exchange with Sir Andrew Dillon, chief executive of the NICE guidance executive, is described here.)

NICE, of course, declined to reveal the names of the seven topic experts, although it reported that four of them were members of the original 2007 guidance development committee. NICE also told me, as it told the ME Association, that the panel included three psychiatrists, two neurologists, a pediatrician, and a patient. NICE did not explain why the panel included more psychiatrists than other specialists, but the selection of topic experts certainly provides insight into NICE’s perspective on the illness.

My next FOI request was for any reports prepared by these topic experts–properly anonymized, of course. I recently received them and have asked for them to be posted on Phoenix Rising. If this is the full extent of the input provided by the topic experts, it seems like NICE made a remarkably anemic effort to seek outside advice. And it sought that advice from a relatively narrow spectrum of professional opinion, especially given the enormous complexity of the disease.

In its e-mail to me, NICE explained that the topic experts provided “three types of contributions.” Each person was asked to fill out two questionnaires. The first questionnaire sought suggestions on new studies or research that could impact diagnostics, interventions and other aspects of the guidance. The second sought input about two specific studies and whether the surveillance report should contain in-depth commentaries on them. These questionnaire responses were due last December. The questionnaires were sent to me as separate documents.*

(The previous sentence has been corrected. The sentence originally read: “The questionnaires, which were often only partially filled out, were sent to me as separate documents.”)

In March of this year, NICE surveyed the same experts about three 2015 U.S. reports—from the Agency for Healthcare Research and Quality, the Institute of Medicine (now the National Academy of Medicine), and the CFS/ME Advisory Committee to the Department of Health and Human Services. NICE wanted to know about the possible impact of these reports on diagnostic criteria and other aspects of CG53. Not all of the topic experts answered. The responses were all sent to me as part of a single document.

Strangely, the first questionnaire sent to all seven topic experts included this sentence in the first paragraph: “As a member of the committee that developed this guideline we welcome your views on any areas that need updating.” That suggests that all seven topic experts consulted were, in fact, members of the committee that developed the 2007 guidance–even though NICE had already informed me that only four of the seven were on the 2007 committee.

I have no idea whether NICE misinformed me that only four of the seven were on the original committee, or whether the wrong form was sent three topic experts who were not actually on the 2007 guidance committee. Whatever. NICE obviously has glitches in its fact-checking department. I hope that problem gets worked out soon.

The documents I received include some interesting and irritating statements from the experts, but nothing particularly surprising. Two of the six medical experts (#4 and #7) expressed modest concerns that recent events had rendered the current guidance somewhat out-of-date. For example, #4 cited the “considerable on-going public and media interest in this disorder” and advised NICE to have “a current and up to date view on this controversial area.” The other four (#1, #2, #3, #6) found that the research supported the current recommendations.

The patient in the group (#5) expressed personal opinions about the difficulties patients face as well as concerns about case definition–but did not fill out the questionnaires provided by NICE and did not make recommendations related to the guidance. #5 attached two additional statements from other ME patients to his/her/their submission to NICE; together they included many references to the emerging science and to critiques of the PACE trial.*

(The previous sentence has been corrected–originally I wrote that NICE did not send me these two additional attachments as part of the FOI response, but it turned out I didn’t notice them in the set of documents.)

Expert #6, an apparent CBT/GET hardliner, had particularly firm opinions about what was what: “This guidance has stood the test of time well, and has been instrumental in shifting thinking about the common problem of CFS/ME and medically unexplained symptoms (functional) symptoms in general. I hope that a new guidance on management of functional disorders will extend this process further.”

In response to the CFSAC suggestion that it was important to focus on biomarkers and diagnostic tests, #6 wrote this: “In the UK I think we would see what the HHS CFSAC see as a failure to undertake rigorous research, more as a failure of the biological model to explain the condition adequately. However, I can understand that an alternative reaction to the failure of biological models to explain the condition is to try and define a subset of patients with the condition who appear to share a common biomarker. This approach has failed so far.”

Of the six medical professionals, #7 adopted the most moderate view, suggesting that “some aspects of practice have moved on considerably so this guideline needs at least partial review in relation to interventions, diagnostics and prognostics.”

Moreover, #7 made some key suggestions about the guideline development group that should undertake these critical revisions: “It is important that the chair is someone who has no previous connection to CFS/ME practice or research. That person should not be a mental health professional if the guideline is going to be accepted by NHS clinics and patient organizations. However, I think there should be a mental health professional on the guideline development group.”

#7 was also the only one to offer specific concerns about PACE. Here’s what he/she/they wrote in discussing the research since the guidance came out in 2007: “There are some larger and more definitive UK RCTs of treatments recommended for CFS/ME by NICE in 2007 but these are controversial and one in particular PACE in over 600 patients, published in the Lancet, has been subject to legal challenge on the grounds that after the study was started the primary outcome was changed.”

That comment isn’t exactly accurate and it does not indicate a full awareness of the facts or of the widespread rejection of the PACE trial by the larger scientific community. But it’s more skepticism and concern than shown by his/her/their colleagues, who mostly toed the standard line and responded as you’d predict.

In response to safety questions, #3 provided more evidence—if any were needed—that the Cochrane reviews of GET and CBT continue to be major obstacles. Here’s what #3 wrote: “Whilst the patient community remain concerned about safety, recent Cochrane reviews suggest exercise therapy is safe and patients are more likely to improve with treatment.”

So Cochrane says it’s safe, and that means the patients are wrong. And yet the reviews include the studies featuring the methodological flaws that patients—and the worldwide scientific community—are challenging in the first place. Reviews can’t provide good evidence if they’re based on bad studies, of course, but #3 did not point this out.

In the second questionnaire, the Dutch FITNET trial was one of two being considered as the subject of an in-depth commentary in the surveillance report. The questionnaire briefly described the study and asked for input. Here’s what NICE included in its description of FITNET in the questionnaire:

“CBT is already recommended by CG53 and this study shows it can be delivered via the internet, indicating an alternative mode of delivery for this treatment for this age group. Although the study was from the Netherlands, a UK trial is underway. There were some issues with the study (blinding was not possible due to nature of interventions, and usual care varied because the quality and quantity of CBT differed according to local availability and was often combined with other treatments such as GET). These issues would be discussed in full in the commentary.”

It must be pointed out that lack of blinding is not just some small problem with the Dutch FITNET study. The lack of blinding combined with the reliance on subjective outcomes renders FITNET, and the bulk of studies from the CBT/GET ideological brigades, incapable of providing reliable or valid evidence of treatment efficacy. Yet the topic experts generally agreed with NICE’s positive assessment of FITNET and largely failed to address the study’s serious flaws in their comments.

Among those problems was that the “usual care” group did very poorly. Unlike in PACE, usual care was not just a few meetings with a clinician. In FITNET, the usual care group mostly received CBT or GET, or both—in other words, the treatments already recommended for the illness in the Netherlands as well as in CG53. And yet apparently these treatments largely failed to work. That raises this critical question: If CBT and GET are performing so poorly, why are they the standard of care in the Netherlands, not to mention the U.K.?

In its comments about the study in the questionnaire, NICE fudged this enormous problem by suggesting that the usual care in the study “varied” in quality—suggesting that the treatments performed poorly because they were not optimally delivered. That’s a very convenient and self-serving explanation, when the obvious and simpler answer is that the therapies simply do not work as promised.

Citing this study, Professor Esther Crawley of Bristol University has received approval to inflict the FITNET approach on British children. But NICE, Professor Crawley, the topic experts and the Dutch investigators themselves have not actually considered one obvious reason why the patients assigned to the FITNET intervention might have reported better subjective outcomes. For sick patients, it would involve much less exertion to have online CBT at home than to run around town attending multiple in-person sessions. It seems logical that patients treated while in front of their laptops and not forced to travel weekly to clinic might do better than those in “usual care” for that reason alone.

In the document compiling the responses whether the 2015 U.S. reports should impact the diagnostic criteria used to define the illness in the NICE guidance, this comment from #1 jumped out as particularly uninformed: “I am unaware of any concerns about the inclusion criteria of trials in CFS.” Wow. Given the enormous international controversy over the range of case definitions that have been developed for the illness, it is hard to know how to respond to such a statement.

Not surprisingly, this person expressed satisfaction with the criteria outlined in CG53: “I do not see any need to change the diagnostic criteria at present. From a clinical perspective, CG53 are pragmatic and useful criteria. In my clinical experience in a CFS/ME clinic over the 10 years since the guidelines were published, no concerns have ever been expressed by patients attending the clinic about the diagnostic criteria used in CG53.”

And here’s what #6, the CBT/GET hardliner, had to say about the U.S.-based reports: “I am suspect [sic] that there is a tendency in the USA to push towards an entirely biological explanation for the condition, whereas in the UK there is an increasing acceptance amongst patients and clinicians alike of a model that includes CFS/ME in the umbrella of functional neurological disorders, i.e. that it is an emotionally driven disorder.”

Ok, then. The notion that CFS/ME is “an emotionally driven disorder” is certainly a popular concept in specific academic and medical circles in the U.K. But #6 does not cite any data to support the claim that there is an “increasing acceptance” of such an idea among British patients and clinicians. That this pet theoretical project of a powerful clique of psychiatrists (and some others) is now presented to NICE as having popular appeal and clinical legitimacy is distressing.

And that this set of comments is the best NICE could drum up in seeking external guidance for this critical review process is deeply worrying.

Comments on this entry are closed.

  • Anton Mayer

    So not one of these “experts” is capable of understanding or expressing that the entire evidence base allegedly supporting CBT/GET is built on documenting a placebo effect and calling it treatment effect. There is no excuse for this.

  • Lady Shambles

    Good grief! Very shoddy. #’s 1 & 6 appear to be especially ‘numpty-ish’ ..can we deduce that they might be two of the psyches..or possible a psych and a paediatrician? 😉

  • Trish Davis

    So they do a review of new evidence since the last review and the only trial they think worthy of looking closely at is FITNET?
    Compare that with the 3000 studies the US looked at in their review.
    NICE is a very bad joke.

  • Anne

    Wow
    Really concerning…
    And seriously biased.

    “However, I can understand that an alternative reaction to the failure of
    biological models to explain the condition is to try and define a
    subset of patients with the condition who appear to share a common
    biomarker.”
    A defender of PACE talking of biological models as a failure is beyond irony.
    Hum, if a subset of patients presents with a common biomarker, the obvious thing to do is to take that into account not dismiss it as if it was anecdotal.
    #6 is a real joke.

  • GQ

    This is a very poor review process for a guideline which has significant ramifications and harm for millions of patients.

    I would hope that the Conflict of Interest disclosure forms (anonymised of course) are also requested. This would be an important part of the investigation.

  • Valentijn

    If these are the best “experts” NICE can provide, then the UK is screwed. I expect next they’ll find a panel of Freudians to create treatment recommendations for sexual dysfunction.

  • clark ellis

    “in the UK there is an increasing acceptance amongst patients and clinicians alike of a model that includes CFS/ME in the umbrella of functional neurological disorders, i.e. that it is an emotionally driven disorder.” This is entirely unacceptable. The expert demonstrates in his other comments that they are aware that this is a controversial disease which other experts consider to be biological. To make such a statement in that context means this is totally indefensible and made in the knowledge that patients would plainly consider such a statement to be highly offensive. NICE should remove this person from the process and disregard their opinion, it is totally unacceptable and I can’t imagine this would be tolerated in other diseases under review. It is purely blaming patients for their disease saying their symptoms are a result of their emotions.

  • clark ellis

    You can tell from the comments that at least some of these people are burdened by conflicts of interest, I would be astonished if they do not hold such conflicts and I think we have every right to know what they are. How else could this process be reasonable and legal? We also need to know from NICE how they are going to take those COIs into account when weighing the value of their expert opinion.

  • Peter Trewhitt

    Thank you David for continuing to pursue this issue.

    It is depressing how unrepresentative and ill informed these ‘experts’ appear to be. Those with some detailed knowledge are profoundly unobjective and demonstrate no understanding of the biomedical research. This hardly represents high calibre cutting edge analysis. This is hardly the level of debate you would expect national health policy to be based on.

    Also, whilst not doubting the good intentions of the patient member, it is worrying that the/she does not seem to be providing an informed response to the questions asked. It is very puzzling, if a genuine representative response is wanted, it would make much more sense using one of the patient organisations.

    Is NICE aware how out of line with international thought and research this largely pro PACE coterie are?

  • Anil van der Zee

    Wow. Ignorance is bliss they say…this explains a lot.

  • Peter Trewhitt

    I agree, further the Government has explicated stated that ME/CFS is a neurological condition, in line with the WHO. NICE is appears to be accepting this being contradicted without any meaningful debate.

    Why is NICE consulting people basing their comments on personal beliefs, albeit beliefs shared by some influential people, beliefs that have never been evaluated, indeed beliefs that are not even supported by successful clinical practice (the NHS clinics providing services based on the NICE guidelines, even on the evidence of Prof Crawley’s survey have been singularly unsuccessful in ‘treating’ ME/CFS (‘treating’ being used here by me as distinct from supportive management))?

  • clark ellis

    Instead of objective expert opinion, we are largely seeing preached dogma here, and it seems likely there are likely to be COIs behind some of it.

    There’s obviously a question here of whether this review process can be fit for purpose if for a recognized controversial disease you only have 7 experts, with some medical disciplines absent entirely and one discipline (psychiatry) disproportionately involved, especially as the current treatments which have been removed elsewhere have their origins and continued support from that same area of medicine.

    And worse, at least 4 out of the 7 are defending an existing guideline which they themselves created in the first place.

    This increasingly looks like a set up by NICE.

  • GQ

    ME and CFS are classified as neurological by the WHO as G93.3. Billions of dollars are saved by denying it as neurological with denied legitimate disability claims. They find it difficult to explicitly state ME is psychiatric now. This new label allows obfuscation of the disease by calling it MUS and functional neurological and is the latest con trick to save money.

    Major conflicts of interest here especially with the PACE trial authors serious undisclosed insurer financial conflicts of interest and the other government arm, DWP heavily involved in the funding being recently exposed and who have similar aligned motives. Transparency is of utmost importance because of this and instead all we have is secrecy and stonewalling.

  • CarolB

    “In my clinical experience in a CFS/ME clinic over the 10 years since the guidelines were published, no concerns have ever been expressed by patients attending the clinic about the diagnostic criteria used in CG53.”

    Well, this is hardly surprising is it? How many newly diagnosed patients, who are, only recently, trying to come to terms with a life-changing, debilitating illness that makes them incredibly ill and affects their energy levels and cognitive abilities, are able to research and discuss diagnostic criteria during the few sessions that are allocated to them at the CFS/ME Clinic?

    Most patients, at this point, are struggling to understand exactly what is wrong with them and most are unaware of the most basic details of the illness, let alone the politics of it. I find this comment astounding.

  • Matthew G Webb

    how can we get this subject in a legal arena where both sides have to prove their case based on scientific evidence. Thats the only way patients like me suffering every day and for the past 37 years will get the treatment we need. If anyone out there is saying that ME is an emotionally driven illness then PROVE IT or SHUT THE ,,,,,, UP! On saying that , please keep up the work you are doing David and thanks.

  • Scott Simpson

    The global ME community has to be asking themselves, “How much iatrogenic harm will my government tolerate?”

    Clearly, if you’re in the UK and have ME, the government is not about tolerating ME harm, but promoting ME harm.

    Thank you David, for continuing to expose the epicenter of the iatrogenic epidemic emanating from the UK.

  • Lady Shambles

    It has been tried. Quite a few articles about the infamous Judical Review (2008 / 2009) exist. This is one of many. The Establishment clearly had their ducks in a row back then: http://www.margaretwilliams.me/2009/jr_statement_2_hooper_5aug2009.pdf

  • Wendy Boutilier

    Thus despite popular opinion, there is in fact no evidence whatsoever which exists to show that Myalgic Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural problems, nor that therapies such as CBT or GET are appropriate, safe or useful in treating M.E. patients. The studies which support these theories and the use of these therapies have been conducted not on people with M.E. but instead on patients with an entirely unrelated and very different health problem – the symptom of fatigue. It appears that consultant #7 is the only one who would at least like to discuss it before closing the door. As far as the rest are concerned, they belong to what I call the “Lazy Doctor Syndrome” which includes the Authors of “PACE & Cochrane”. Rather than practise good science they throw it all in the ME or CFS bucket because they are too lazy to do the right thing.

  • Sandra

    After reading this, I find myself shaking my head in dismay and thinking “what fraudsters, what fraudsters.” The BPS CBT/GET proponents are nothing but “spin” doctors. Apparently the hippocratic oath means nothing to them. They should be so ashamed of themselves. They are so blinded by their own theoretical musings (and/or payments from insurance companies) and their careers built upon these musings that they can’t see or acknowledge the truth before their very eyes. But patients know the truth about the physiological neuro-immune disease ME. They live with it every day, some for decades. They know it from the inside out, and will never accept the “spin” put forth by these fraudsters, who are even trying to fool themselves about that. More and more scientists, clinicians, and the general public around the world are becoming aware of the house of cards (PACE trial), upon which their so-called “evidence-based science” is built. We are indeed locked in a great battle here. Patients will keep fighting. Biological research into the disease will continue. I believe good science will win out in the end. It is just such a tragedy that so many ME patients and their families have been or will be harmed in the meantime due to the stubbornness of the BPS brigade and their narrow-mindedness. They have a lot to answer for.

  • Sandra

    Just want to add to my last sentence: As will the UK government if they allow this charade to continue.

  • Sean

    “emotionally driven disorder”

    *shudder*

  • Jo

    I did the standard 23andME test and my brother had the results checked by 2 different groups of Australian researchers….both groups found genetic mutations consistent with what they think are diagnostic markers for CFS/ME. I’ve sent the test results to the USA as well. The lack of UK expertise and “dark void” from which UK experts are plucked says little about our health care system.

  • Jo

    Aren’t the subsets of patients with common biomarkers, patients with the same disease??

  • Graham McPhee

    Terrifying, isn’t it? In science, evidence is king, and young researchers are expected to challenge established beliefs. In fact most scientists make their names when they are young. In contrast, in the medical world, evidence seems to come a very poor second to status, seniority, established procedure and accepted belief. Should we suggest that NICE applies to be classified as a religion?

  • Orla Pwme

    The released documents have been posted on Phoenix Rising here http://forums.phoenixrising.me/index.php?threads/foi-comments-from-nices-expert-reviewers.54208/

    Someone has pointed to an addendum to comments by number 5 about a bad reaction to CBT (which was pushing GET) in a trial on so-called MUS patients (PRINCE Secondary Trial). It is awful reading how bad this person got and she kept being encouraged to do the exercise. I am hoping this is going to link directly to the post on this http://forums.phoenixrising.me/index.php?bookmarks/8805/view-item

  • Simone

    As we suspected, their “experts” are seriously lacking in expertise. They have a responsibility to be across the research, but many are blinded by preconceived notions. Not really a surprise.

  • tomkindlon

    Just to point out to anybody interested that two papers have been published by researchers on the outcomes from the CFS/ME rehab clinics in England and the results have not been good:


    BMC Health Serv Res. 2017 Jul 14;17(1):488. doi: 10.1186/s12913-017-2437-3.
    Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England.
    Collin SM1, Crawley E2.

    https://www.ncbi.nlm.nih.gov/pubmed/23538643

    Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
    Crawley E1, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database.

    https://www.ncbi.nlm.nih.gov/pubmed/28709432

  • Auctis

    “I am suspect [sic] that there is a tendency in the USA to push towards an entirely biological explanation for the condition, whereas in the UK there is an increasing acceptance amongst patients and clinicians alike of a model that includes CFS/ME in the umbrella of functional neurological disorders, i.e. that it is an emotionally driven disorder.”

    Not one UK patient I’ve ever corresponded with has ever evinced anything but the exact Opposite of this!

    At the very least these reviewers are dangerously out of touch with the “patient community” and at the worst (and let’s “be real” and assume the worst) they are the very clique of vested interests that surveys like these should make all efforts to avoid.

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  • Guido den Broeder

    ME is classified by the WHO – not as, but at G93.3. CFS has only been classified in the ICD-10-CM, which is not a WHO publication but a local extension used for hospital billing in the US, as R53.82. All the CBT/GET studies are CF or CFS studies.

  • Guido den Broeder

    The first thing that needs to be done is to recognize that ME is not CFS, nor in any way related to it.
    ME is not defined by fatigue, and delaying the diagnosis for six months is extremely harmful as with proper care in many cases the disease doesn’t need to become chronic.

  • Hominy642

    Why do I feel like the world is topsy turvy in the UK these people live in- reports from the UK saying depression (can) be an inflammatory- not mental illness. But me/cfs, let’s start with the cbt and get and then fire up the electroshock! (Joke) What???

  • Matthew G Webb

    thanks for that. I had a quick look and it seems to me that its time for another try ? I suppose the first stop is getting our MPs to support the early day motion 271 for a public enquiry . I think this should be a priority for anyone who really wants victory and treatments for this life stealer ME. Its unbearable sometimes the way we in the ME community are forced to go round and round in this quagmire being driven by what we know is truth and a blatant case of corruption, I guess i should try and imagine courage of others faced with lies from powerful people and institutions who have finally after years and years emerged victorious, there are many examples of great courage . I think we need to come up with ways of getting the general public to understand what has happened in the Uk within the ME world, I think its time for a hard hitting documentary which can take momentum off of “Unrest” which elevates the subject beyond that of “is ME real” and get on with the reality facing UK patients and how the cover up is sustained ??? There must be someone in the field who has family members or who has been affected who could crowd fund for the money. If Jen Brea can do it we can do it??????????????

  • Olivia Beatty

    If NICE use the same experts that drew up the original guidelines,then those experts will not be independent. This is exactly the same as the PACE trial being reviewed by the original researchers. I think that those of us who have lived with ME for decades in the face of such hostility are actually emotionally strong.

  • Olivia Beatty

    PS. Thank you David for continuing the battle for us. You deserve the knighthood not Wellesley.

  • Lady Shambles

    I think a ‘hard hitting documentary’ to shame NICE into behaving itself would be far cheaper and possibly the court of public opinion would be more effective. I’m not sure another JR wouldn’t also be nobbled as the last one was.

  • Lady Shambles

    This paper: https://www.ncbi.nlm.nih.gov/pubmed/23538643
    (Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
    Crawley E1, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database)

    uses this REC number: 07/Q2006/48 which was first raised as an issue in this PR post here:
    http://forums.phoenixrising.me/inde…review-of-crawley-school-absence-study.53544/
    and then later also covered by (but not specific to) David Tuller’s blog here: http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/

    In the case of this QJM paper the problem is considerably more black and white (excuse the pun!) in that the REC number refers to a paediatric longitudinal study whereas it’s easy to see that this paper actually refers to adults only. I would be inclined to ask: “How is it that this paper has not been retracted, given it was published in the first place? Why is it possible for Crawley, Collin, White et al to have a paper published which uses an adult cohort but refers to a solely paediatric REC number which justifies it being considered ‘service evaluation’ ..or tbh justifies anything at all. The REC number might as well be ‘Noddy goes to Toytown’ in that it makes just as much sense.

  • Anna

    Thank you, David for obtaining these very useful documents for the class action to come!

  • JustinReilly

    Thank you once again for your excellent work on this, David!

  • Leigh

    I queried with NICE the availability of the minutes from meetings associated with the guidance so far. They were not published on their website as those for other guidance’s have been. They have now found the documents but will not make them available as they have the “experts” names in them. I will reply suggesting that they redact that information. It might be another good FOI request to put in though. Although the meetings were years ago it might give insight into the discussions and how many people voted that they though it should be categorised as per WHO and how many disagreed.

  • Lady Shambles

    Surely if the minutes to other deliberations have been made public they must have already catered for redacting the names of the participants? Or is it just that ME people are so violent the NICE Guideline for this disease requires special provision (sarcasm). ?

  • janvier25

    They aren’t paid by insurance companies in other countries. It’s all hubris.

  • JCB

    Indeed. With you 100%. How many people in the general population are even aware that there is a concept of diagnostic guidelines? There is not a general understanding of such a process. I would think that the man or woman on the street would simply think that you arrive at the doctor and they recognise your problem because they are a doctor.

    On my own part, I first came across the idea of diagnostic criteria when my GP said I had depression. I did my own reading and discovered that there were criteria for clinical depression and that they simply did not match my condition.

    Fortuitously the same article I read compared depression to CFS, a condition that I had never heard of previously. It also compared the symptoms of depression and CFS side by side, and to me it was clear that what I had was much more likely CFS (this was an article by an American doctor). I discussed it with my GP and he said it was very interesting. However he clearly took no notice.

    I went to see a different GP in the same practice and she agreed to send me out of area to an infectious diseases specialist in London. This doctor was absolutely clear that I had ME. But as it was out of area, I did not get beyond a diagnosis there. However the specialist made it clear there was very little that they could do anyhow. So I was back with the GP practice and they did even less than that.

    But on the whole I don’t think a doctor on the coalface uses clinical guidelines. They do use their experience.

    How far would I be wrong if I assumed that Dr #1 is Esther Crawley? The commentary that I have read on EC’s papers suggests that she does not have a high regard for diagnostic guidelines anyhow.

  • JCB

    Expert witnesses are often used in criminal trials. In that context, the witness is there to support the court. The witness is not there to act for either the prosecution or the defence. They are supposed to be neutral in that respect. The expert is there to present the current state of the science without prejudice. If an expert is later found to have presented the science with a bias towards the prosecution, that would be grounds for appeal and it could result in a conviction being quashed. To present the science in such a twisted way as the experts described here have, that would be tantamount to contempt of court.

    Why are the expert witnesses here allowed to operate in such a prejudiced, biased manner?

  • Hominy642

    I wonder how bad this problem is in the UK— in the US the consensus is the average PCP/GP is 20-30 years behind the times on current medical understanding. My experience with them verifies that to me and many people I know.

    Weirdly in the US I have found mental health professionals who readily are like “this is not a mental health concern. We can’t fix this. It is b.s. your doctors aren’t doing!”

    Yet the physical doctors (except my specialist) are like: “have you tried exercise? Go on antidepressants? Birthcontrol pills? Yoga? Just don’t think about being sick? Hypnotherapy (joke)”

    I think mental health doctors I have met are better at listening- they get paid to after all.

    In the UK it sounds like you can’t even get that, from the blogs I have read. 🙁

    Meanwhile I am still waiting for an apology all the suffering that has been caused in various illnesses that have been treated like nonsense and neglected. If it turns out depression is an inflammatory disorder and not mental at all, I still wonder when they will formally apologize for all the people they intentionally gave brain damage.

    Doctors seem to be the worst at learning from our history.

  • Hominy642

    I propose a bet: whoever js wrong in the end has to hand in their medical license and never treat another patient. I bet the biological researchers would be up for it. 🙂

    Also this whole “the pursuit of a biomarker has failed” is bullshit, turns out to find a biomarker you need to have an agreed limitation, money (you know like the millions stolen from funding this illness), and doctors/researchers who care from the beginning, and governments who refuse to accept the illness exists. Yikes! Tally it up and they’ve only been looking for a little while.

    Though some claim MS has a biomarker that is clear- it does not have a very accurate one. Same goes for rheumatoid arthritis/RA, SLE/lupus, MG/myasthenia gravis and many other autoimmune illnesses.
    They may have tests, but many are not accurate (some about 50%) the biomarkers appear in healthy populations, and other tests must be performed (including some that I believe should fall under torture for MG).

    No one would debate these are physical illnesses that can debilitating and even deadly. We aren’t looking to prove that ME is genetic and has one clear cut way to diagnose- a gene that is either on or off. We want a decent screening test like many other illnesses, which takes decades typically to come up with.
    It’s asking the impossible for a neglected and derided illness to come up with a biomarker over night.

  • Hominy642

    I believe “incestuous” is an applicable term for their conduct.

  • Hominy642

    Does being unable to read count as a conflict of interest? I feel like it does, so they should disclose that… 😉

  • George

    NICE should not be involved in formulating treatment guidelines until there is evidence that at least one truly effective treatment exists for a condition. And preferably a curative rather than palliative one.
    Guidelines otherwise merely allow ineffective therapies to survive and serve as a barrier to doctors trying new and possibly more effective ones.
    In the absence of such effective treatment, no condition should be shoved into the “emotional or other psychiatric” basket of despair.

  • Margaret Smith

    My thoughts as soon as I read that comment Carol.

    99% of what I know about ME and 100% of what I know about the debacle surrounding it were learnt post CFS clinic appointments. I say CFS because there is no way UK CFS clinics know diddly about ME.

    Besides, its a bit of a self evident statement isn’t it, because anyone who knows about the truth about the ‘efficacy’ of CBT and GET on ME, isn’t going to set foot inside an NHS CFS clinic in the first place!