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Criticism of CCC - Smith and Wessely 2012 - Unity of Opposites

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Jan 21, 2014.

  1. Firestormm

    Firestormm Guest

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    I picked this up this morning. It's an essay from 2012 only now available I believe in full. It made me wonder if, as when the NICE Guideline Development Group for example found the CCC to be inadequate on the grounds of methodology, this might also be something we would have to overcome in order that the CCC were adopted - in whatever manner - by IOM.

    British Medical Journal
    Neuropsychiatry
    Patient Choice

    Review
    Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
    1. Charlotte Smith,
    2. Simon Wessely

    Extracts:

    There is more to read and I think it is important - if we had had time - to try and address some of these issues. Because the IOM committee will I am sure take such criticisms into account. And not all of them are without merit I don't believe.

    However, whilst I think at the end of the day, the IOM are more likely to return a definition and written language more akin to the NICE Guideline (which is not all bad in my opinion), I still think the CCC personally is worth fighting for; but I also think there are aspects to it that could have been better addressed over all of these years: namely taking it into the field and validating it as a clinical definition and overcoming these objections.

    If we had had the time and the ability, this kind of critique of our criteria/definitions would have been something worth doing ourselves I think. We need to acknowledge the weaknesses as well as champion the strengths and science and medicine simply have fallen short of doing the business and will continue to do so until such time as clear biomarkers can be established and we really know what we are dealing with. A critical appraisal of all the definitions/criteria/research would have been ideal - but as patients we can only do so much and I am out of my depth...
     
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  2. alex3619

    alex3619 Senior Member

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    This article makes even worse logical errors than those they accuse the CCC developers of. At some point I will be responding to this, but probably not soon as I am too busy. In particular they use appeal to irrelevant authority, they fail to advise of contradictory published evidence, and they overstate the case of the evidence for their preferred view. As a scientific review I regard this as very poor. As political polemic, engaging in medical politics, it seems more relevant.
     
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  3. biophile

    biophile Places I'd rather be.

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    The venerable CCC is 11 years old and obviously has its flaws. It felt like a revelation to me when I first read it, a vast improvement over the vague Oxford and CDC criteria, for the first time in my journey I felt like these people understood the clinical characteristics of what I had been experiencing. More recent work has been done since then.

    Carruthers later published some sort of addendum to how the CCC was supposed to work:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/

    Jason et al published an attempted operationalized update in 2009: http://thescipub.com/html/10.3844/ajbbsp.2010.120.135

    Carruthers et al published the ME-ICC in 2011: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    Followed up with the ME-ICC primer in 2012: http://www.hetalternatief.org/ICC primer 2012.pdf

    We do indeed need a critical appraisal of all the definitions/criteria/research available. I'm rusty at the moment on these issues. The CCC was based on extensive clinical experience and a formal study of symptoms in over 2,500 patients (De Becker et al). IIRC, the CCC was the first and is still one of the only criteria to be based on such empirical data. The ME-ICC was based on the CCC, with updates from the research and clinical experience.

    The CDC and Oxford criteria are woefully inadequate. NICE isn't much better. I do not want another "chronic fatigue plus maybe a vague symptom" type of criteria. I just want all the relevant people to get together and thrash out a consensus criteria based on both their extensive clinical experience, data on patients, and systematic reviews of the research in the proper context. Politics and differences in opinion is obviously hindering progress. I'm sick and tired of all the bungling.

    Wessely does raise the important issue of what "neurological/cognitive manifestations" should be acceptable. Obviously people who have neurological signs need further investigation , but people are often denied a proper neurological examination, so such neurological signs may not even be detected in the first place.

    However, he claims that the CCC should not have "[attempted to] synthesise patient views into the discourse". People who wish to sweep ME under the CFS rug must acknowledge and include the characteristics of ME outbreaks or admit that ME and CFS are not the same and should not be treated as such.

    What people with views such as Wessely's do not seem to understand is that the CCC and similar have such strong support because they resonate with the experiences of patients far better than vague criteria like CDC and Oxford. In his entire career, Wessely never contributed much to improving the definition of either ME or CFS.

    Some of Wessely's criticisms towards the CCC need addressing, but also seem to apply to the Oxford criteria that he apparently has supported throughout his career without much complaint.

    This is the extent of the robustness and peer-review of the Oxford criteria development methodology:

    That is it. And somewhat amusingly given Wessely's previous discussion about biases and funding from a drug company:



    Here are the details on developing the CCC:

    There is additional information in what Carruthers later published in 2007:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/
     
    Last edited: Jan 21, 2014
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  4. Esther12

    Esther12 Senior Member

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    Is that complete bollocks? Which section of the community is this? Where are they hiding?

    Don't worry about it. I'm sure you can just churn out some staw-man to pick apart...

    This is pretty funny considering their refusal to release data from PACE:

    It just reads like a propaganda piece. It's easy to pick apart any of the criteria for CFS, but this seems rather lacking in a defence of the Oxford criteria.
     
    Last edited: Jan 21, 2014
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  5. Bob

    Bob

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    That's what he specialises in. Very successfully.
     
    Last edited: Jan 21, 2014
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *pulls down zipper.... pssssssssssssssssssssssssssssh! *

    Think that about sums it up, hm? :p
     
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  7. Ember

    Ember Senior Member

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    From the ME Primer (2012): “The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology.”

    From “The New International Consensus Criteria for M.E. - content and context” (2012) by Professor Bruce M. Carruthers, MD, CM, FRCP(C):
     
  8. Esther12

    Esther12 Senior Member

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    I just saw that the response section for this paper says:

    I found the response of prohealth: http://www.prohealth.com/library/showarticle.cfm?libid=17709

    Not read it yet, but thought I'd post it here to help make it more available to others.


    Dear Mrs. Smith and Mr. Wessely,

    As a Scottish man who has a family member with ME/CFS, I wish to respond to Mr. Wessely’s paper, ‘Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development’ published in February 2014 which unfairly criticised the Scottish authorities, ScotPHN and it’s Health Care Needs Assessment Group and their criteria for ME/CFS. I wish to refute Mr. Wessely’s argument and paper in a logical, rational and measured manner. I have drawn on evidence and facts to support my case. The Scottish health authorities have made their decision and I and many others support it on scientific and medical grounds, while repudiating the presumptions and assumptions of some psychiatrists who have shown a strong disregard for scientific evidence and facts in the past. And further representations of support, including this letter, will be given to the ScotPHN and other Scottish parliamentary bodies and medical bodies. The English and Welsh health authorities and doctor and patient organisations are welcome to copy our example in this.


    Resolving of issues raised in Mr. Wessely’s paper


    “it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.”

    “What happens when, at first sight, the results of a considerable quantity of what we now call evidence-based medicine firmly point in one direction, while the narrative and individual accounts, at least those that are readily available, perhaps even more vehemently say the opposite. How and why can this happen, and does it matter?”

    Mr. Wessely’s career has been built on subjective assessments and on assumptions and presumptions about ME/CFS, which by their very nature are subjective. He has no lab tests or objective evidence to support his own case. In fact, and quite ironically, he strongly discourages lab tests and objective evidence. His obsession with preventing the diagnosis / identification of objective evidence via lab tests and other biological based tests in ME/CFS and Fibromyalgia is his most serious defect and flaw, in a medical and scientific sense. The NICE clinics’ refusal to do necessary lab tests and other hospital tests for this illness being the most obvious example of psychiatric interference in the NICE guidelines on ME/CFS and their operation. Depriving patients of the objective evidence means Mr. Wessely and his ilk can conveniently claim that the objective evidence does not exist / is not there, and this forces a reliance on subjective data which can be viewed and interpreted in many different ways. In most cases a psychiatrist will interpret this to suit his own agenda.

    Furthermore, Wessely rejects most of the objective scientific evidence and research into ME/CFS as it contradicts his own personal subjective views and subjective data. So Mr. Wessely himself is the living embodiment of the contradiction between subjective and objective. He is in effect condemning himself in the above sentences.



    “We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.”

    “The criteria that the Canadian consensus group have produced have not been operationally defined or validated”
    “The document itself seems to have fallen foul of the key to guideline development in that there is a lack of robust peer review”

    How very convenient of Mr. Wessely to mention dangerous diagnostic criteria. His own Oxford criteria which has strong psychiatric bias and excludes biological evidence accumulated over many years of research, has proved very dangerous. Similarly, the Fukuda criteria in 1994 also omitted important biological evidence and facts, and had psychiatric bias. This was recently proven in the release of letters exchanged between Dr. Straus and Dr. Fukuda in 1994. Here is a listing of people who have died as a result of medical neglect based on the premise that ME/CFS was a psychiatric illness, “all in the head” or a “non illness” as Mr. Wessely claimed in the past - http://www.ncf-net.org/memorial.htm . Yes indeed, Mr. Wessely, it is your own criteria and the psychiatric definitions of CFS which have proved most dangerous.


    As regards patients making “informed decisions”, well that depends on who is doing the informing, is it medical doctors and researchers with many years experience of the illness and of the biological and objective evidence OR is it psychiatrists with a set of presumptions and assumptions ?


    Wessely’s use of the term “evidence based medicine” is intriguing and contradictory, the evidence suggests that psychiatric based treatments do not work, the failed PACE trial being one example, and that certain biological treatments which address the biological abnormalities, dysfunctions and infections found in ME/CFS do work. I would draw Mr. Wessely’s attention to some research papers which details the lack of effectiveness and safety of psychiatric based treatments in ME/CFS - www.me-ireland.com/scientific/16.htm

    As for evidence based treatments, and use of the Canadian criteria in research, sadly some psychiatrists slyly and deviously worked to prevent and stop biological based government funded research into ME/CFS for many years. Many excellent biological based research proposals were rejected over the years by government bodies, on the advice of certain psychiatrists, thus depriving millions of patients of promising biological based treatments. And depriving the scientific community of “robust peer review” and “evidence based medicine”. This activity by certain psychiatrists was very shameful, but some people have no shame or sense of shame.

    Despite these obstacles, there is some scientific evidence to support the assertions in the Canadian criteria, they are referenced in the document itself and on the following international web sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l

    Mr. Wessely’s own Oxford criteria for CFS was drawn up by psychiatrists for psychiatrists, it lacked an adequate proper guideline development process, it lacked robust multi-disciplinary peer reviews, it replicated studies and double blind placebo controlled studies, it lacked conclusive results, it lacked statistical analysis, it lacked conclusive evidence and it conveniently omitted important biological and scientific evidence at the time. It was flawed on many levels, and was not fair and balanced. And this Oxford criteria still lacks these necessary components. Mr. Wessely would need to examine his own flaws, mistakes and errors before pointing the finger at others.


    Mr. Wessely conveniently forgot to mention in his Oxford criteria and research papers that the Holmes CFS criteria of 1988 specifically excluded psychiatric illnesses from the definition and from the diagnostics. Yet Mr. Wessely and his disciples have invented all manner of psychiatric illnesses, including somatoform disorders, somatic syndromes and psychosomatic illness to describe and define CFS. He directly contradicts the findings and conclusions of the Holmes committee of the CDC which met to define CFS in 1988. Mr. Wessely seems to be behaving like a loose cannon, inventing all kind of novel stuff for his own purposes. This is not scientific or medically sound.


    “a result of patient group pressure on politicians who then outsource the work to a panel the patient group select, leading to a one-sided document.”

    Mr. Wessely conveniently forgets that his own Oxford criteria was a one sided document devised and approved by psychiatrists for psychiatrists, with no patient input, and this document was used to apply pressure on politicians and civil servants to view ME/CFS as a psychiatric illness and integrate this fallacy into the newly established NICE clinics.

    Mr. Wessely fails to differentiate between ME and CFS, and the origins of both illnesses. There are differences, but he merges the two into one, to create an artificial psychiatric illness which tells one nothing about either illness.

    “ This is the view of most neurologists: in a 2011 survey of neurologists working in the UK, 84% did not consider that ME or CFS was a neurological condition”

    There are some neurological abnormalities in subgroups of ME/CFS and this has been established by scientific studies, some of which are mentioned here at international sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l . Information about ME/CFS provided to doctors and neurologists in the UK via medical books, journals, newsletters, the press and media for 20 years have stated that ME/CFS is a psychiatric or psychological illness, that it is “all in the mind” and a “non illness”. It has been the subject of ridicule and jokes in some journals and newsletters. Some psychiatrists like to joke and laugh about ME/CFS, and this in itself explains a lot. The ‘Wessely school psychiatrists’ and their Oxford criteria have played a major role in this. This explains the views of the neurologists mentioned above.

    In the paper, Mr. Wessely mentions and praises the NICE and it’s criteria for ME/CFS and contrasts it with ScotPHN. The NICE criteria was developed by and for psychiatrists, it has obvious psychiatric bias, and rejects the biological aspects of ME/CFS. There was also evidence of censorship, bias in literature reviews, bias in the CFS definitions accepted, and conflicts of interest in it’s development for NICE. It was not a gold standard guideline development process, it was a purely biased psychiatric guideline development process, poor in quality and in delivery.

    Mr Wessely whinges about verbal and personal attacks on psychiatrists. Yet he neglects to mention the attacks on ME/CFS patients both verbal and physical resulting from the stigma of psychiatric illness and being ridiculed, insulted and humiliated in public. People with real or alleged psychiatric illnesses are seen as vulnerable and easy targets in so called “civilised societies” in Europe and North America, and are regularly attacked. There are many cases of ME/CFS patients, including adults and children, being bullied and insulted and mocked for their illness, and several cases of aggression and violence against patients, all of it caused by the psychiatric label. Furthermore, many patients have suffered relationship difficulties and marital breakdown, separation and divorce as a result of the psychiatric stigma and the neglect of the illness resulting from psychiatric prejudices. Many people have lost careers from this medical neglect and psychiatric label. So Mr. Wessely, you and your views have inflicted considerable abuse, violence and pain on many patients

    The studies Mr. Wessely quoted regarding exercise and CBT were flawed, failed to identify ME/CFS patients using strict diagnostic criteria, failed to identify severe cases of ME/CFS (those who are bed ridden and those in wheelchairs), recruited psychiatric patients using Oxford and Fukuda criteria, and the results were weak and inconclusive. There are no recoveries from exercise and CBT in ME/CFS, because the biological abnormalities, dysfunctions and infections are not being treated. Mr. Wessely conveniently omits to mention that patients have fully recovered from anti-viral and immune system treatments in some clinical studies. Furthermore, Mr. Wessely’s statements about the benefits of exercise and CBT in ME/CFS are contradicted by several studies and scientific evidence, which show that exercising seriously ill ME/CFS patients with muscular, cardiac, vascular and mitochondria abnormalities is dangerous, some research papers are listed here at an international web site www.me-ireland.com/scientific/16.htm

    Mr. Wessely needs to made aware that some psychiatrists and doctors have been guilty of presuming a person to have a psychiatric illness when in fact they did not have one, but had a serious physical, biological illness. One case which comes to mind is that of a woman who had Chronic Lyme disease. The psychiatrists claimed she had a psychiatric illness and that it was “all in her head”. After going here and there to several doctors, and getting no satisfaction, she eventually found a doctor who carried out many intensive tests and diagnosed her with MS. A few years later she got some more tests and was diagnosed with Chronic Lyme disease, with neurological abnormalities. Apparently it has some similar symptoms to MS. She got treatment for Chronic Lyme disease, and her condition improved and she recovered. This was certainly a lot more effective than CBT, GET and exercise therapy as recommended by psychiatrists to her. So the psychiatrists were proven wrong. The presumptions, assumptions and subjective views of the psychiatrists were wrong, and possibly dangerous and life threatening to the woman involved. There have been many similar cases like this worldwide. This article was in the British press recently, and drew much attention from people. This case and many other cases like it worldwide certainly clarifies a lot of issues for ME patients and their doctors.


    Mr Wessely cites in his paper on a few occasions that ME/CFS is a controversial illness. This a very interesting point. Mr. Wessely persistently refuses to look at and accept the objective biological evidence from scientific studies, and this is the main controversy in this illness. In this, he denies himself valuable information, thus depriving himself and his colleagues of vital facts relating to this illness. This is entirely his own decision and he has not been put under any duress or pressure from patients or doctors to arrive at this decision.

    In the course of life, there will always be misperceptions and misunderstandings arising from lack of knowledge of the full facts, and indeed refusal to look at the facts. In all matters of science, health care, scientific research, sociology (including disability rights), differentiating between what's alleged, what's subjectively perceived, what’s popular, what's corrupted or manipulated in any way, what's unchallenged and more importantly what’s proved and verified, and represented is the real issue here. This was the essence of Popper's empirical falsification theory. Forensic analysis and forensic level testing is a necessary bedfellow in this affair, especially when one has to "find the truth hidden within layers and layers of lies, deceptions, half-truths, conflicts of interest, misdirections and obfuscations" and this is always challenging and divisive. The biological facts and evidence that ME and CFS are physical and biological illnesses, predominantly immunological, neurological and endocrinological are known and proven yet somehow some persons wish to ignore and/or reject the scientific facts. And in the normal course of events, this creates division and controversy.


    I will be making these facts and information available to the Scottish health authorities and the health authorities in other countries. We still live in a democracy in the UK and people still have the right to question and to speak out, and to engage in scientific debate. The purpose of this letter was to refute Mr. Wessely’s paper in it’s entirety, and to provide a proper and logical examination of scientific facts, evidence, and truth. It is not to abuse anyone, though many, many patients have suffered abuse and worse over the years at the hands of those who dismiss their illness as psychiatric / psychological. I hope this clears up the situation.


    Best Regards

    Andrew Campbell

    Scotland
     
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  9. Snowdrop

    Snowdrop Senior Member

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    Thanks for finding this Esther.

    Do you know when Mr Campbell's letter was written and what happened to it? Was it published by Edinburgh Hospital?

    Thank you. Many :hug: for standing up for the ME community Mr Campbell.

    Edit: went to the prohealth link and had my question answered.
     
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  10. Kati

    Kati Patient in training

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    Do you mind sharing the answer perhaps?
     
  11. Snowdrop

    Snowdrop Senior Member

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    @Kati
    November 19, 2012 Prohealth printed the article abstract Unity of Opposites. The page allowed for comments and Andrew Campbell's comment appeared May 23, 2014. That's my understanding from reading although now I think it doesn't address from where it was published and then removed. But the letter Esther quoted can be found through the prohealth link.
     
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  12. chipmunk1

    chipmunk1 Senior Member

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    he should be glad that he is not in lobotomy. this is where some of the most dangerous attacks have happened in the past.
     
  13. worldbackwards

    worldbackwards I talk because I can

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    From Wessely, et al.
    Chortle
     
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  14. chipmunk1

    chipmunk1 Senior Member

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    [​IMG]
     
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  15. Sean

    Sean Senior Member

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    The lack of self-awareness in this man spills over into genuinely delusional megalomania at times, with increasing frequency and persistence.

    He richly deserves the fate he has dealt himself.
     
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  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    alas, your pic isn't working! :/
     
  17. msf

    msf

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    Wessely and the rest suuuuuuuuuuuuuck! (that was for any other fans of the Opie and Anthony show). I struggle to take anything they say or do seriously, I only have one word to describe them: charlatans.

    If I was forced to take any of their arguments seriously, I would point out that, by continuing to advocate ME as a diagnosis of exclusion, they are committing the kind of logical error that you would hope 'scientists' would be immune from.

    Basically, they have already decided what ME is, before sufficient evidence has been gathered (a priori if you enjoy philosophy), and then they decide what evidence can be accepted based on their prejudices about what ME is.

    Anyway, returning to my first point, Wessely and co. suuuuuuuuuuuuuuck!
     
  18. msf

    msf

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    Oh, and for those philosophy fans, I'll just point out that the title of Wessely's article refers to the Ancient Greek theory of opposites, which gives an indication of how current his ideas are...
     
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  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Chipmunk1
    ah, now your pic works! ;)
     

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