Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Wessely suspension draft letter is here!!!!!!!!!!

Discussion in 'Action Alerts and Advocacy' started by flex, Jan 24, 2010.

  1. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Good points all. Here's the wording from the Protest letter I posted above:

    We could say, "We call for Wessely's suspension..."

    What I think we need to add are actual quotes where Wessely shows what he's all about. ;)
  2. Sing

    Sing Senior Member

    New England
    I think that is excellent, tee!

  3. flex


    London area
    Excellent suggestions from everyone. Im sorry Im in a crash ATM. What we need is a more concise letter "calling for" xyz and highlight the Reeves issue also. A more bullet point document would be much better and a much shorter letter. Everyone have a go, post your effort on this thread and we could maybe vote on the best letter and send it.
    I think this is the best way forward.

    * Short
    * Bullet points
    * CDC latest
    * Outdated psyche lobby
    * XMRV

    SO SO SO tired

  4. Gerwyn

    Gerwyn Guest

    cohort or even conclave might be better than bunch judicial review 2009

    Wessely quotes
    Functional somatic syndromes refer to groups of symptoms lacking demonstrable abnormalities of structure. They include CFS. (2005). Rev Bras Psiquiatr: 27:3.

    If the CFS did not exist, our current medical and social care systems might force us to invent it. Annals of Internal Medicine (2001) 134:9S:838-843.

    More fully referenced quotes from and information about Wessely school psychiatrists can be found at:
  5. sproggle

    sproggle Jan

    Teesside, England UK
    Go UK!

    Just found this thread, dunno how I've missed it or maybe I have been here but instantly forgot?!! :tongue:

    Simon Wessely in response to the question Is that how chronic fatigue syndrome can start?
    in New Scientist Article

    "Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going."

    It's maybe a bit long but it does explain in plain and equivocal language his beliefs. There's no wriggling out of that one! makes me mad just reading it :Retro mad:

    Can't be anymore help at the mo but will check back and see how it's going and if there's anything I can do when I'm upto it. Drs tomorrow so that will be fun :rolleyes:

    You've all done a great job so far, nearly there!

    Take care
    Jan xx
  6. sproggle

    sproggle Jan

    Teesside, England UK
    My attempt

    DEAR ..........

    We the undersigned call for the suspension of Professor Simon Wessely from all matters surrounding ME. Myalgic Encephalomyelitis (ME) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. ME is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.

    The UK government and other agencies should fulfil their obligation to recognise ME in such a manner and treat the patients according to this directive. The UK Government has an obligation to control and understand diseases within and outside of its borders. It is The UK Government and the Medical Research Council's responsibility to invest in biomedical research to understand diseases and protect against them.

    This is not happening. The current versions of ME/CFS being practised and treated in this country are falling under terminology as defined by a small group, mainly of psychiatrists, whose practices have been questioned by the Scottish Parliament and the Welsh assembly. The Gibson Report also made direct reference to concerns about connections of this small bunch of influential people to the Insurance industry, whom also have acted as advisers to the Department of Work and Pensions.

    The above issues have lead to the NICE guidelines offering nothing but two treatments known as GET and CBT. It's even been stated by NICE that these treatments are not remotely curative. Many physicians worldwide have published that GET has worsening affects on people with ME. Therefore in the public interest we would like a full examination and public declaration as to who is providing these courses, for what sum of money and to why this is all that is offered.

    Many of these opinions were offered in The Judicial Review into the NICE Guidlines for people with "CFS/ME" which [FONT=Times New Roman, serif]took place at the High Court in London in[/FONT][FONT=Times New Roman, serif][/FONT][FONT=Times New Roman, serif] February 2009.[/FONT]

    There are approximately 5000 papers worldwide that have been published showing and explaining the biological markers for ME. Yet it is still treated by many in the medical profession as a Functional Somatic Disorder. This has been the long standing published opinion of Professor Simon Wessely, influential psychiatrist. Insurance companies consider themselves not liable for payouts if a person is suffering from a psychological illness. Professor Wessely has published and advised treatments, protocols and diagnosis on his interpretation of ME for a period of over 20 years. He is also responsible, along with others, for drawing up a definition of Chronic Fatigue Syndrome (CFS) that is commonly referred to as the Oxford Criteria. There is no reason why there should be so many versions, names and personal interpretations of the same illness drawn up. The WHO has listed ME as a neurological disease since 1969.

    The terminology CFS was devised not by the WHO, [FONT=Times New Roman, serif]but by the Imperial College of London which is a WHO Collaborating Centre. On [/FONT][FONT=Times New Roman, serif]28th June 2001[/FONT][FONT=Times New Roman, serif] Andre L'Hours, the Technical Officer at the WHO headquarters in Geneva was informed of what was happening in the UK (refering [/FONT]to the attempt by the UK WHO Collaborating Centre - Kings College - to list PVFS and benign ME under G93.3 and F48.0)[FONT=Times New Roman, serif] and he promised to look into the matter.[/FONT]

    On 16th October 2001, Dr B Saraceno from the WHO provided the following clarification in writing:
    "It is possible that one of the several WHO Collaborating Centres in the United Kingdom presented a view that is at variance with WHO's position. Collaborating Centres are not obliged to seek approval from WHO for the material they publish. I understand that the Collaborating Centre concerned has now made changes to the information on their website after speaking with WHO".

    Andre l'Hours also stated that if a country accepts the WHO Regulations concerning nomenclature (which the UK does), then that country is obliged to accept the ICD classification. For the avoidance of doubt, the UK has registered no reservations about the ICD-10 and therefore formally accepts it.

    This failed to alter the approach of a number of vested interest groups who throw the blanket term CFS over ME and other similar organic illnesses. Many studies and clinics claiming to be representing people with ME are not meeting the WHO classification of ME. They are in fact dealing with people whom they have defined as suffering from CFS under various definitions excluding the Canadian criteria. This muddies the waters and stops genuine research being done.

    This blanket term leads to people suffering from ME being left extremely vulnerable to misunderstanding, ridicule, poor and dangerous treatment protocols, lower benefits and insurance claim amounts. Many people with ME are bed bound with no advocates or personal representation [FONT=Times New Roman, serif]and so are unable to fight against the unfairness of this system.

    In conclusion the use of the blanket term CFS and the continued involement in this area of the pyschiatrist Proffesor Wessely is very damaging to all ME sufferers in the UK and change is desperately needed.[/FONT]

    Yours Sincerely

  7. starryeyes

    starryeyes Senior Member

    Bay Area, California
    The following quote is by Michelle from the Simon Wessely's Latest thread in the General section. Can this be included in the letter?

  8. valia

    valia Senior Member

    Most of us know the quote very well, but I think although Wessely did say that he was quoting the words of someone else (can't remember who now)

    It's very important here to be 100% accurate
  9. Trooper

    Trooper Senior Member

    I agree about this needing to be as airtight as possble. Some thoughts...

    I am not sure about the quote about 5000 papers showing biological markers. I think there might be a lot of papers that touch on ME/CFS, but 5000 showing biological markers? I am sure I read somewhere that this figure is actually considerably lower? *scratches head* :)

    It might also be an idea to include the annual cost of ME/CFS (est 3.5 billion) vs. the current amount spent on biological research (needs calculating) vs. the amount of $$'s the WPI used to find the correlation between ME/CFS and XMRV (and the short time scale it took them).

    This provides a good contrasting argument that if money/attitudes are refocused on biological research, progress can be made?, hopefully leading to both a whacking reduction in the cost to the government and similarly in the amount of ME/CFS patients in the UK, which apparantly haven't fluctuated significantly while the psychiatric lobby has been involved/biological investigations not been a priority..

    "Many people with ME are bed bound with no advocates or personal representation [FONT=Times New Roman, serif]and so are unable to fight against the unfairness of this system. [/FONT]" < Powerful statement - I think this needs to be by itself, on a seperate line?
  10. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    It might be useful to include the following in full from the Canadian Consensus Document (hope this reformats)

    Many objective
    biophysiological findings have been
    demonstrated to underlie the symptoms of
    ME/CFS. Patients meeting the criteria of
    ME/CFS must be excluded from the diagnosis of
    Somatoform Disorder. Member countries of the
    World Health Organization (WHO) are obliged
    to adhere to the regulations of the WHO’s
    International Classification of Diseases (ICD)
    and use their ICD classification. In a letter
    dated January 23, 2004, Andre l’Hours of WHO
    headquarters clarified that “it is not permitted
    for the same condition to be classified to more
    than one rubic as this would mean that the
    individual categories and subcategories were no
    longer mutually exclusive”. Thus, ME (and
    CFS), classified as a neurological disease
    in the WHO ICD, cannot also be classified
    as somatoform disorder, which is
    classified as a mental or behaviour

    One niggly point. 'Directive' has a very specific meaning in international law, as in European Directive. I'm not sure the WHO classification qualifies as a directive.
  11. flex


    London area
    I am going to do a serious revision of the letter in the next few days and just make it more concise. Its getting more and more confusing:D and I really need to pick out the main points from all the excellent posts here.

    Trying to pin down exact quotes and conflicts of interest is really difficult and opens up a can of worms in libel terms. Although I would still encourage everyone to keep posting them.

    I will word things in such a way that an investigation needs to be done on the above issues without leaving ourselves open to being wrong about individual remarks.

    To be honest the real hardcore investigation needs to be done by the press core that we are going to bombard with the letter. We also need to send a copy to The Royal Society of Psychiatrists ( is that what they are called) and the APA because they will want to distance themselves from any bad publicity and we need to play divide and rule there. They will be watching XMRV closely and will not want to be associated with any one who exposes their "profession" as a "laughing stock". This has been suggested about a number of disciplines within medicine. If a massive population of patients has a vote of no confidence in a Physician then it is very hard for them to ignore that.

    They will see that if he is wrong about all this they will loose the trust of the public, and even the rest of the medical profession. If the complaint is on their desks in writing they will worry about not acting in the light of future scientific breakthroughs.

  12. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Oh yeah, valia, that's right. Thank you for reminding me and all of us. I agree, we have to be accurate.

    Power to the People! Go flex!! :victory:
  13. flex


    London area
    This could be a major breakthrough for us. We can reference this formal complaint to the MRC and UK government made by Proff Malcolm Hooper 12th Feb 2010. It seems like everything we needed to say is in here. We can send our letter as a patient group and be assured that all the Bio and political issues are being raised by a biochemist and emeritus professor of medicinal chemistry.
  14. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Ha! this is more realistic.
    Even though the Royal College of Physicians have given Wessely a medal for his "CFS" "work", I certainly feel he deserves more honors.
    I have written to the Royal College of Fine Arts nominating Prof. Wessely for a medal for raising medical scumbaggery to an art form.
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    I'd like to start by clarifying that I am not involved in this project and I do not intend to involve myself in this project and I have already advised its instigator that I would not promote this project on my websites.

    We have at least one member of the legal profession on these boards and I suggest that they are approached for advice.

    Whatever the objectives of any work being carried out on public archived forums like these, which any member of the public can access, it is essential that those contributing to projects ensure that they go back to source for every statement used, rather than reiterate unreferenced material from other threads, or from other internet sites.

    Someone has already cautioned about the need for 100% accuracy. I will second that.

    Take the statement above.

    It starts off by stating that Simon Wessely works for UNUM. Source?

    According to this recent No 10 e-Petition response:


    Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment. As far as UNUM is concerned Professor Wessely has not given advice, but has spoken at two UNUM sponsored medical meetings.

    (Ed: He also contributed an article in the 2007 UNUM Provident Chief Medical Officer's Annual Report. )

    So where is the evidence that supports the assertion (which is one I have challenged several times before on these forums) that Prof Wessely "works for UNUM"?

    The quote on this thread then goes on to state:

    If you have to use the word "allegedly" does this not strongly suggest that the original author and the reiterator need to do some research and not just repeat what has been picked up (unreferenced) from a forum post, or off Facebook?

    Firstly, there is no need for the word "allegedly". It is known that in the early years of PRISMA Health (established in 1999, source PRISMA Health), Prof Wessely was on the Supervisory Board. But he isn't any longer, and he has not been for quite a number of years and I understand that he has already clarified this, in writing, to "Holmsey".

    There is information on PRISMA Health in Martin J Walker's book "Skewed".

    There is also this information that provides confirmation that in 2001, Prof Wessely was on the Supervisory Board. [Page no longer available on the WayBack Machine, but material comes from files held by a trusted source.]

    Supervisory Board

    RA Georg F. Thoma (President), German, is managing partner at Shearman &
    Sterling, a leading international law firm. Mr. Thoma's broadly based
    practice concentrates on capital market and M&A transactions. He has
    been the leading lawyer in major deals such as the Daimler Benz -
    Chrysler Corporation merger. Mr. Thoma is regarded as one of the top M&A
    lawyers worldwide.

    Prof. Dr. Michael Adams, German, is leading the institute for Law and
    Economics at the Hamburg University. He is adviser to the German
    Administration and Supervisory Board member of a number of well-known
    German corporations.

    Dr. Fons Dekkers, Dutch, international specialist on patient’s rights
    and information. He is director of the Dutch Federation of Patients’ and
    Consumer organisations and for Europe Vice-president of the European
    Public Health Alliance. Published many articles and books over the last
    20 years on rights of patient and citizens in healthcare.

    Dr. Peter Jaensch, German, is CEO of GFKL Financial Services AG and
    Supervisory Board member of several innovative and service companies.

    Prof. Dr. Simon Wessely, British, is regarded as a world leading expert
    in the field of medically unexplained illnesses. He has been publishing
    extensively on chronic fatigue and is leading, among other things, the
    Chronic Fatigue Unit at the King’s College in London.

    This document from 2001 also provides evidence:

    Source: Journal of the American Medical Association
    Vol. 286, #11
    Date: September 19, 2001

    Author/Article Information


    Author Affiliation: Department of Psychological Medicine, Guy's King and St
    Thomas's School of Medicine and Institute of Psychiatry, London, England.

    Corresponding Author and Reprints: Simon Wessely, MD, Department of
    Psychological Medicine, Guy's King and St Thomas' School of Medicine, 103
    Denmark Hill, London, England SE5 8AF (e-mail:

    Financial Disclosure: Dr Wessely serves as an advisor for treatment programs
    and research opportunities for PRISMA, a private company that arranges
    rehabilitation services. Dr Wessely receives no payment for this position, is
    not a shareholder, and has no financial interest in the company.


    So the information is there, if the research is carried out.

    I would suggest that given that these are public archive forums and given how readily posts on these forums feature on page one of Google, that people take a little more care to verify information for themselves and that they are able to back up any statements they make with documentary evidence and that they establish dates for the information and that the information still holds true.

    As someone who spent four years involved in an investigative project into the activities of an unregulated advocacy service where every statement published could be backed up with documentary evidence, it really disturbs me how readily some people repeat information as though it were gospel, without having done any verification of their own.

    It might help to ask yourselves, if I were a journalist or an investigative reporter, or a publisher (in print or as a web publisher) would I be confident that every statement I make is lawyer proof and can be supported by references or documentary evidence - because if it cannot, then it is ill advised to include that material. Also consider whether you would be confident about making unsupported statements when publishing under your own name? Please also give consideration to Cort who is responsible for these forums.

    I am concerned for the reputation and the credibility of the ME and CFS community as a whole.

    We are subjected to so much misinformation about this illness - can we please endeavour to ensure that all material that is published or circulated in the name of the ME community, or which is being proposed to be published or circulated in our name, is accurate and can be relied upon.
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Flex wrote:

    I'm sorry, Flex, but this is naive.

    Which UK press do you think are going to "investigate" Prof Wessely as a result of your letter?

    ( See: )

    Prof Wessely is not a member of any DSM-5 Development Work Group but he was one of 28 clinicians and researchers invited to present at the Somatic Presentations of Mental Disorders Symposium in Beijing.

    The APA, in collaboration with the WHO and NIH, convened this diagnosis-related research planning conference focusing on somatic presentations of mental disorders in 2006. The conference was the eighth in a series of 12 NIH-funded conferences on "The Future of Psychiatric Diagnosis: Refining the Research Agenda" administered by APA's American Psychiatric Institute for Research and Education (APIRE).,2006).aspx

    The paper resulting out of Prof Wessely's presentation is published in an American Psychiatric Pubishing Inc monologue.

    The APA Board of Trustees and the DSM-5 Task Force agreed that the names of external advisors to the DSM-5 revision process would not be disclosed to the public. I cannot therefore confirm whether Prof Wessely is also acting as an advisor to the DSM-5 Task Force, one of more of its Work Groups, Study Groups or ad hoc committees.

    But since the DSM-5 Task Force has not even been prepared to provide answers to some straightforward questions and give consideration to a non contentious suggestion that the APA publishes copies of the Summaries of meetings of the International Advisory Group for the Revision of ICD -10 Mental and Behavoural Disorders on its website, since it participates in and chairs these meetings, (choosing instead to pass the enquiries on to its media office who obfuscated for several weeks and then disengaged), I really do not think it realistic to assume that a letter calling for the suspension of Prof Wessely will be given consideration by the American Psychiatric Association's Board of Trustees or that they will want to "distance themselves" from this individual because of "bad publicity".
  17. flex


    London area
    Firstly Suzy,

    at no time did I ever ask you to post or carry this letter or subject matter on your site. I asked you along with numerous other people if you wanted to get involved in this project and it appears you have declined it on this thread before politely confirming that with me first. I was aware you had reservations from the PMs we sent back and forward. It also appears you mostly like to work alone. That's fine. You also stated your concerns for Cort. It may interest you to know that I PMd Cort weeks ago with the rundown of this project and asked his permission to get this draft out. He kindly suggested posting in on its own thread and asked me to carry on with such projects. This is exactly what I have done.

    I consider this quote by you as unnecessarily venomous:

    "I do not intend to involve myself in this project and I have already advised its instigator that I would not promote this project on my websites". Again I never asked this of you and made it clear in PMs.

    I go by the name of flex on this site. Not the "instigator". This is truly a bizarre choice of phrase. However, if I ever decide to become a Bad ASS Gansta Rapper I shall surely consider this title.

    I have not at any time stated that P Wessely is a member of any DSM-5 Development Work Group. Nor for that matter have I sent out any official information connecting him with any particular body. Speculation is not the same as clarification. You continuously referred to flaws in "alleged quotes" that this letter will be referring to and if you read my posts you will see that I have addressed this matter a number of times. Remarking that it is naive on my behalf to think that the press will not investigate or get involved with this matter is amazingly defeatist for someone who appears to be involved in Advocacy. If we took that attitude we might as well all pack up and go home.

    I could go on but frankly I don't want to wast my precious energy. This project is work in progress and if you have no desire to be involved perhaps you should do so respectfully.

    I have attempted to read a number of your posts lately but found difficulty understanding their purpose on numerous occasions.

    It would probably be of more benefit to suggest ways forward, however difficult they may be, rather than to come across as a finger waver on issues that everyone else is already aware of.

    Quite frankly I don't care if Wessely reads these forums and how he may or may not interpret them. He is hardly the arch angel of clarity and truth. Nearly everything he says is pontification with no backing.

    If you read for example the thread on the recent London study you will see numerous people taking apart the studies in open discussion. This is the nature of a public forum. To suggest that this thread or others has libeled Wessely, or is in danger of doing so is somewhat over the top. There are thousands of pages on the Internet trying to ascertain the truths in this whole matter. Should we stop public questioning, should we stop free discussion, should we stop Prime Ministers Question Time? Should we stop parliamentary and congressional hearings?

    It would be quite foolish of any one to claim libel for issues that would shine a bright light on themselves when they could end up the author of their own misfortune. I would imagine Wessely would be keeping very quiet right now especially with the Malcolm Hooper issues. This could be exactly the right time to try to entice the press hand into good quality investigative journalism. That's why I started this project, exactly for the reason that the tide could well be changing. This letter may help to make some immediate changes in our fate, or it may be the start of a very long process - so be it. Que sera sera!!

    Lastly, I have and always have had, the full intention of passing the finished letter through the hands of a number of professionals engaged in this matter as well as a legal professional.



    Aka The Instigator
  18. Esther12

    Esther12 Senior Member

    I understand people finding ME agenda's attitude difficult - but we shouldn't assume this letter will get a more generous reading from its recipients.

    Maybe it would benefit from a thorough savaging to help find any weak points before it is sent?

    I've not followed this thread closely enough to comment properly, but I think projects like this can often benefit from the contributions of those sceptical about it as a whole.
  19. flex


    London area
    You have made good points here Esther. Please also remember that the letter is work in progress. It is there to be construct-fully and respectfully commented on. You have done this well! The letter is not about to be sent as I have stated it still needs editing and secondly I am not particularly well at the moment.

    There is no need for remarks aimed at me about naivety, and it is certainly not helpful to refer to me as the "instigator". Of course, you did not engage in any such behaviour.
  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Flex wrote:

    I stand by what I wrote in Post #36. This is a naive view.

    Flex, if your objective is to engage the interest of an investigative journalist, rather than splat the press, indiscriminately, with a letter calling for Prof Wessely's suspension, you need to do some research, first.

    Prof Wessely is an advisor to the Science Media Centre. He has the Times, the Guardian and New Scientist in his pocket. That's three publications for a start where your concerns will fall on deaf ears.

    If you want to try and interest an investigative journalist then you need to be forging links, directly, and quietly with potential journalists with whom you might work.

    Study the media; look at how various papers and magazines have covered ME and CFS issues over the past few years, which journalists and health editors might be receptive and which are unlikely to be.

    At no point have I stated that anyone involved in this thread has libelled Professor Wessely.

    What I have done is cautioned against the reiteration of inaccuracies - just as valia has done, just as justinreilly has done in another thread. These are public archive forums. They are listed by search engines. The public may not follow entire threads. It is a courtesy to Cort who hosts these forums and in the interests of those who are reading these forums that contributors strive for accuracy.

    It is tedious to see statements like "Wessely works for UNUM", "Wessely works for PRISMA Health" being reiterated, with no supportive evidence in thread after thread.

    You have written:
    Would you like to tell me which posts of mine you are having difficulty with, please?

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