1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,203
    Likes:
    1,535
    Australia
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    @ Min 58 & 59 - it good to see those robust responses, thanks for posting.
    Min likes this.
  3. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
  4. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,203
    Likes:
    1,535
    Australia
    O

    They're probably going to take that as a job well done (eg awarding to people who stand strong in the face of criticism).
    In any event, I suggest that anyone here should avoid making any further comments.
    Firestormm likes this.
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Messages:
    1,718
    Likes:
    375
    UK

    This is addressed "To whom it may concern", but to whom has Mr Kevin Short sent it?
    Firestormm likes this.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Messages:
    1,718
    Likes:
    375
    UK
    Merry likes this.
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    Oh the irony - standing up for science - but no one here (and countless others) have missed that.
    Min likes this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    427
    Likes:
    401
    Illinois, USA
    The person who nominated him wrote "This version repudiates any psychological or psychiatric element to the extent that psychiatry is viewed as a contemptible discipline, which, by association, denigrates psychiatric patients."

    Denigrates psychiatric patients?
    A falsehood and a non sequitur. Two points!


    Once again I would like to extend my sympathies to those of you who live in the sometimes Orwellian UK.
    Sing, Valentijn, Min and 2 others like this.
  9. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    I haven't read all the posts just got the news about the prize. This is outrageous! Every organization and doctor who specializes in ME/CFS ought to stand up and object, in crystal clear terms. As a patient, the irony of this prize which rewards the exceptionally dishonest and cowardly behavior of this man as if he had been exceptionally honest and brave is both cruel and absurd, bitterly laughable.
  10. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    I think this is a very witty idea. We can invent overblown prize names and descriptions, mocking this prize, then circulate these, making sure the offenders see it and know that a lot of people are laughing and disgusted. Making a joke of someone's behavior is a much more powerful strategy than simply being angry in that it conveys a sense of empowerment rather than weak protest. Guido, the best comedians would use just your sort of approach to lampoon such destructive idiocy.
    justinreilly, Bob, Enid and 1 other person like this.
  11. Nielk

    Nielk

    Messages:
    5,073
    Likes:
    4,603
    Queens, NY
    Dr. Wessely seems to thrive on his notoriety of being the "victim" of terrible abuse. Absent of this abuse, he might just be an obscure doctor that no one hears about.

    What if, as a community, we would just totally ignore anything by Wessely, whether it is an article, study, award. What if we just all acted as if he did not exist? In addition, what if when he searches for CFS test subjects, no one would participate?

    I call for a total boycott of this man and anything remotely attached to him.

    I have a feeling that this would work much more effectively than the negative comments/possible threats.

    He received this award not because of any scientific accomplishments nor for any special quality that he possesses except that he is a victim of perceived abuse/threat. The fact that these allegations have not been substantiated does not matter in the eyes of the world.

    I think that he thrives on notoriety and this is proven by the extend that he is willing to go through with his "allegations".
    His biggest punishment would be if he would be not considered newsworthy.
    Sing likes this.
  12. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,727
    Logan, Queensland, Australia
    I have been saying for a long time that satire is under-rated in advocacy.
    jace likes this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,727
    Logan, Queensland, Australia
    Hi Neilk, I like the idea in theory, but as the PACE trial shows it wont matter. They just fudge it, expand the entry criteria till its even more meaningless than it started as. Then of course claim the results appy to all CFS patients, including all ME patients, although White did clarify the patient cohort a little when he said it was not CFS patients but fatigued patients. The PACE trial had enormous difficulty getting test subjects. Many patients are aware of the issues. We need some method to opt out of the CBT/GET malarky without being sanctioned in some way, especially in the UK or when insurance is involved. Bye, Alex
    justinreilly likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,015
    australia (brisbane)
    AT the start of this thread i put it out there if anyone had been helped by SW or his theories, a couple of pages later and so far know one has put their hand up, interesting.
  15. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,727
    Logan, Queensland, Australia
    Heaps, so far as I am aware nobody has stood up and said that SW helped them via CBT/GET who had ME. Maybe they don't care and so don't engage with advocacy. Maybe they don't exist. Maybe they appeared to improve and then got worse again. We know the failure rate is very high based on the PACE results.

    In any case my suspicion is that most who respond are misdiagnosed. According to that letter to the editor in BMJ in 2000 SW had a 50% misdiagnosis rate in the patients a locum handled. Thats a much higher percentage than their "success" rate.
    justinreilly likes this.
  16. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,578
    England, UK
    Hi Alex, are you certain about that?
    I know they've said that they tested CFS patients and not ME patients, but i haven't seen what you quoted.
  17. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,578
    England, UK
    Some people might feel that they have been helped by CBT/GET, if only because they find the input reassuring when they are experiencing such a disorientating and distressing illness. The PACE and FINE Trials showed us how successful CBT/GET are for treating CFS/ME. (They don't have any clinically useful objectively measured benefit.) (Fact.)
  18. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,727
    Logan, Queensland, Australia
    Hi Bob, I could be wrong. That is however the way it was quoted in several places I read. They did enrol non-CFS patients though to boost their numbers from what I have read, requiring only chronic fatigue as a symptom - and this included some fibro patients apparently. If so, then the resulting cohort would have been a mix of Oxford CFS and non-CFS. Now I could be misremembering, there is no guarantee with a memory like mine.

    Does anyone have a link to the original comments by White on these issues?

    Some of what I am saying comes from:

    http://www.meactionuk.org.uk/Comments-on-PDW-letter-re-PACE.htm
    "
    1. The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”: this crucial issue has been addressed in a separate document (http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm). Further points not made in that document include the following:
    · in his response to comments on “Protocol for the PACE trial” published in BMC Neurology on 28th July 2008 (http://www.biomedcentral.com/1471-2377/7/6/comments#306608) Professor Peter White wrote: ME is not an exclusion for the trial….We did consider using the Canadian criteria for ME but….the London criteria for ME were chosen instead. The London criteria were based on the original description of ME, given by Melvin Ramsay

    · in her letter of 21st February 2011 Dr Rawle from the MRC referred to the disorder as “CFS/ME”, writing: In your view the entry criteria used mean that the PACE trial is studying patients who have chronic fatigue and not CFS/ME, and you are concerned that the results might be applied to different patient groups. The clinical and scientific experts who reviewed the protocol were satisfied with the entry criteria, which are clear in the published protocol (which refers to “CFS/ME”) and are also set out clearly in the published results (which do not refer to “CFS/ME” but to “CFS”, and the Chief PI has now confirmed that they did not purport to be studying CFS/ME), so that clinicians and others using the results of the trial to inform their practice will know which patient groups the treatments should be applied to” (given the discrepancies, this cannot be so)

    · by letter dated 16th June 2005, Dr Sarah Perkins, Programme Manager, MRC Neurosciences and Mental Health Board, confirmed that the use of the Oxford criteria as entry to the PACE Trialwill not be used to exclude patients with a diagnosis of ME

    · that the PACE Trial was studying those with CFS/ME was confirmed by one of the Principal Investigators (PIs), Professor Michael Sharpe, at the Press Conference held on 17th February 2011 at the Science Media Centre to launch the PACE Trial results, when he said: CFS/ME, as it has come to be called, is a condition that is relatively common….There is an issue with some people regard(ing) CFS and ME as separate conditions….I think the majority view is that people regard them as the same….”
    http://download.thelancet.com/flatcontentassets/audio/lancet/2011/18february.mp3

    Given the substantial evidence that the PACE Trial did purport to include people with ME and was indeed studying “CFS/ME”, it remains to be clarified by Professor White on what evidence he relied in his letter to Richard Horton when he stated that the PACE Trial does not purport to be studying CFS/ME.

    If the PACE Trial Investigators did not purport to be studying those with “CFS/ME”, why were participants also assessed by international criteria for chronic fatigue syndrome…and the London criteria for myalgic encephalomyelitis” as described in The Lancet article methods section?

    Furthermore, why did the Investigators use a version of the (unpublished) “London” criteria for ME in which cardinal symptoms of ME were deemed by the PIs not to be necessary?

    Professor White states in his letter: “We were provided with the second revised version of the London ME criteria; we did not invent our own”. The original version of the proposed “London” criteria bears little resemblance to the version that was used in the PACE Trial (now understood to have been provided by the charity Action for ME as Dr Ellen Goudsmit PhD – who claims co-authorship of the proposed “London” criteria -- has confirmed that the version used was not the one provided by her directly to Professor White). If it was not provided by AfME, and if the PIs did not invent their own version, who were the authors of the version of the “London” criteria used in the PACE Trial? Dr Ramsay’s description requires neurological problems to be present for a diagnosis of ME to be made, but the PACE Trial version specifically states (on page 188 of the Full Protocol) that neurological disturbances are not necessary to make the diagnosis and further states about fluctuation of symptoms: the usual precipitation by ‘physical or mental exercise’ should be recorded but is not necessary to meet criteria”.

    Put another way, the version of the “London” criteria as used by the Investigators does not require the cardinal features of ME to be present in a subgroup of patients in a trial that purported to be studying “CFS/ME”.

    Against this background, Professor Hooper notes with concern that the text of The Lancet article states that participants were also assessed by “the London criteria for myalgic encephalomyelitis (version 2) requiring postexertional fatigue.

    As for some time Professor White has been theorising as to whether or not CFS is different from or similar to other Functional Somatic Syndromes (J Psychosom Res 2010:68(5):455-459) it is strange that, when given the opportunity to settle this question once and for all, he simply states: “We studied the results for differently defined subgroups and they were similar to those in the entire group”. Given that the clear distinction between Ramsay-defined ME and somatisation disorder has been removed by the PIs by their use of version 2 of the “London” criteria, the remarkable similarity of results between the “differently defined subgroups” and the full cohort is unsurprising. Indeed, it was almost inevitable, given that the version of the “London” criteria used in the PACE Trial was virtually identical to the Investigators’ own Oxford criteria minus the presence of psychiatric illness.

    In view of Professor White’s assertion that the PACE Trial “does not purport to be studying CFS/ME”, there has been much comment on the internet about possible fraud and deceiving of participants as well as the research ethics and steering committees. As Chief PI, Professor White had convinced the funding bodies that the trial would be studying those with CFS/ME and ethical approval and funding from government bodies including the Department for Work and Pensions, the Department of Health and the Scottish Chief Scientist’s Office, as well as the MRC, were granted on the basis that the PACE Trial did purport to be studying those with “CFS/ME”, which Professor White has now denied in writing."


    Then there is this: http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm

    "In their letter, Peter White et al state: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.

    The sentence continues by stating that the PACE Trial studied: “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria)."

    Based on their claim here White is claiming CFS but is not claiming ME.

    Then there is this from Peter Kemp:

    http://www.scribd.com/doc/110421439/The-PACE-Trial-Psychiatrists-Spinning-Out-of-Control-4#

    "The PACE Trial researchers modified benchmarks and entry criteria, cancelled or misappliedmeasures and changed scoring methods during the Trial. These changes had the effect of damaging generalizability, favoured the treatments being tested, eliminated objectivemeasurements and created ludicrous anomalies:

    •People originally disqualified from participation were later allowed to join the Trial.Patients with a completely different illness from the target group were allowed to join(fibromyalgia)."

    If this is correct the direct inference is that the PACE trial cannot be said to be about CFS only. This makes the results unreliable for yet another reason. They will of course argue that fibro and CFS are often comorbid conditions. This may be a valid argument in this context. I am still thinking about this.

    Bye, Alex
  19. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,578
    England, UK
    Hi alex3619,

    I didn't know about the claim re fibromyalgia patients. But they would still have to have met the Oxford ('CFS') entry criteria.

    The Oxford criteria was used as the recruitment criteria, which, as you have said, only requires fatigue.

    Oxford is probably the weakest (least selective) 'CFS' criteria, and it could be argued that it doesn't even select for CFS patients (let alone ME-diagnosed patients), if comparing it to internationally recognised CFS criteria, which I think always (?) require other symptoms to be present.

    If I've got the correct criteria, here, Oxford only requires fatigue, and not post-exertional malaise, or increased post-exertional fatigue, or any other symptoms:
    But I've recently re-read the NICE guidelines, and they don't seem much different to Oxford.
    The NICE guidelines only recommend that the diagnosis is 'reconsidered' if fatigue is present but some other NICE-specified symptoms are not present:
    Although I don't quite understand this, because the guidance says that the possibility of CFS should only be considered if post exertional malaise is present... Clearly this must be just a 'recommendation':
    Does anyone understand that discrepancy?

    I've never studied the NICE guidelines closely.
    I think I will soon.
  20. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,727
    Logan, Queensland, Australia
    Yes Bob, its become clear we also have to look at what NICE says. There are so many definitions its very confusing without context. For one thing I want to know if it can be confirmed if fibro patients were included. I would also like a copy of the original White statement so I can compare what was actually said and the context in which it was said.

    Fibro might be a special case due to its comorbidity. However just meeting Oxford criteria could be an issue. The guide "unexplained by other conditions" is critical in NICE according to your quote. Fibro includes fatigue as symptom, though typically its secondary to pain and may not always be present.

    http://www.pacetrial.org/faq/faq2.html
    What are the “Oxford” criteria for CFS? These require that a person has had at least six months of severe fatigue, with fatigue being their main symptom, which is disabling and is usually accompanied by other symptoms. No other medical or psychiatric explanation for the symptoms has been found. All patients in the PACE trial met these criteria.

    Why did you choose the Oxford criteria for defining CFS? We chose the Oxford criteria for several reasons: (a) we wanted to find out which treatments were best in those who had fatigue as their principal symptom. Some patients, clinically diagnosed as having CFS, may have another symptom, such as pain, as their primary symptom. (b) The Oxford criteria include a greater number of patients with CFS, by not requiring a specific number of additional symptoms, as other definitions of CFS do. (We wanted to make sure our findings applied to the greatest number of patients.) (c) The Oxford definition of CFS is the most straightforward to use in clinical practice.


    http://www.mecfsforums.com/wiki/Oxford_definition

    "(f) Certain patients should be excluded from the definition. They include:
    (i) Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician.
    (i) Patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders, and hyper- ventilation syndrome) are not necessarily reasons for exclusion."

    Exclusion by other conditions does not specifically include fibro if this definition actually reflects the Oxford definition, but it is implied. I wonder if they would say fibro is just another FSS so shouldn't be used for exclusion. After all, they would probably argue, a similar treatment should work for fibro.

    I do find the "proven organic brain disease" bit amusing in a grim kind of way as this may be proven in around three quarters of us on autopsy due to dorsal root gangia and brain stem lesions. Similarly heart damage can often be shown, again typically on autopsy.

    I also find vascillation between CFS/ME and CFS in its various guises problematic. ME/CFS is different again, despite the similarity to CFS/ME. By creating so many different variations they sow seeds of doubt due to the imprecise language.

    Trying to pin down the language is something I will be attempting over the next several years. I am fairly sure it can be proved this has led to invalid reasoning.

    Bye, Alex
    Bob likes this.

See more popular forum discussions.

Share This Page