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Wessely suspension draft letter is here!!!!!!!!!!

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

  1. flex

    flex *****

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    This is the draft letter. It needs editing and clarification.

    Suggestions and editor needed!!

    Letter to go to UK Government, NICE, worldwide press, WHO, MRC. European Court of Human Rights etc etc. Any other address you wish worldwide.

    Relevent Email and postal address to be posted here soon. Help also required in sourcing these addresses.
    I am very, very tired!



    Dear..


    We the undersigned are writing this letter to demand that P. Simon Wessely should be suspended from all matters surrounding ME, also sometimes known to him and others as CFS. We would also like to know why files containing information on ME are classified and have recently had the period extended until 2071. ME is recognised by the WHO as a neurological disease in the……… We feel that 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 also their and the duty of the MRC duty to invest in biomedical research to understand diseases and protect against them.

    We feel that this is currently not happening. It appears to us that the current version of ME being “practiced “and “treated” in this country falls under the CFS blanket terminology as defined by a small bunch of ,mainly psychiatrists, whose practices have been questioned by the Scottish Parliament and the Welsh assembly. It is also true to say that the… Gibson report… made direct reference to concerns about connections of this small bunch of influential people to the Insurance industry, whom also have acted as advisors to the DWP..( CDC, GWS….CAM water contamination….)

    We feel that all of the above issues have lead to the NICE guidelines offering nothing but two “treatments” known as GET and CBT. It is even stated by NICE that these treatments are “not remotely curative”. 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 on offer .GET is known and published to have worsening affects on people with ME by many physicians worldwide. Many of these opinions were offered in the NICE Judicial Review in the High Court in ( ……..)There are approximately 5000 papers worldwide that have been published showing and explaining the bio markers for this the disease ME listed by the WHO as neuro…….. Yet it appears to be treated as a “Functional Somatic Disorder”. This as we understand has been the longstanding published opinion of Mr Simon Wessely, influential psychiatrist , whom has previously …… insurance companies. Insurance companies consider themselves not liable for payouts if a person is suffering from a “psychological” illness. M. Wessely appears to have 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 “CFS” that is commonly referred to as the Oxford Criteria. There is no reason we can see as to why there should be so many versions, names and personal interpretations of this illness drawn up. The WHO has already listed ME in 1969. It appears to us that the terminology CFS was devised not by the WHO, not with scientific or biological understanding but by a number of vested interest groups who could throw the blanket term “CFS” over ME and other similar organic illnesses.

    Also, more importantly, under this blanket term are non organic illnesses that have “fatigue” as a symptom. This has lead to people suffering from ME being left extremely vulnerable to misunderstanding, with poor treatment protocol, dangerous treatments, lower benefit and insurance claim amounts payable. This they have to endure alongside suffering from a chronic disease whilst they are often derided and misunderstood. Many people with ME are bed bound and are not represented anywhere!!

    It is our considered opinion that many studies and clinics claiming to be representing people with ME are not in fact doing so. They are in fact dealing with people whom they have defined as suffering from “CFS” under definitions not meeting the WHO classification of ME. What is worse is that it appears to be represented and taught to the medical profession that ME and every definition of “CFS” excluding the Canadian criteria is the same thing.

    ME patients are denied many medical tests as is advised by (…….) such as (……..) which leaves them termed “medically unexplained” by the medical profession and Insurance companies alongside DWP which leaves them vulnerable to the psychiatric “diagnosis” functional somatic disorder which in itself is subjective and a scientifically flawed concept.

    These understandings of somatic disorders being one and the same as ME are the well established views and practices of Mr Simon Wessely and he often refers to unscientific terms like “neuroanesthesia” He has even made such comments as (……………) The burden of proof of physical illness is on the patient whilst medical tests are being denied to him. Yet there is no burden of proof on the psychiatrists like Mr Wessely.

    All this is done with the under current that the patient knows he may receive lower benefits or no insurance payout if he can not prove a physical illness.

    The current research into ME by the ..WPI…. In Nevada has found a possible link to a retrovirus known as XMRV which could be a major break through in the understanding of ME also known as CFS particularly in North America. This study was tested and supported in two other reputable labs. They are (…NCI…..) and (…CC…..) The findings were peer reviewed over a period of six months . It was then published in the esteemed Science magazine.

    The IC in London ( supported by/ paid for by PLoS ONE) then carried out a study no see if they could come to the same conclusions. They found XMRV not to be present in any one of 186 patient cohorts which is unusual as the occurance in the general population is around 3.5% .
    The patient blood samples (were supplied by Mr Wessely himself from frozen samples from one or a number of his clinics.) We would like to question whether these 186 patients were involved in any other previous study and whether their neurological signs, symptoms and previous test history which could point to Neuro immune disease had already been screened out before their samples were supplied. P. Wessely supplied these samples as a psychiatrist with a vested interest in a non organic outcome.

    The researchers at IC have since stated that they do not believe XMRV to be the cause of “CFS” in the UK but go on to acknowledge that it CFS is an organic disease. One of the citations is professor Wessely himself. This is confusing to many people as he is well published claiming that ME/CFS is not a disease and is in fact a (“functional somatic disorder” get clarification and quotes) The patient blood samples (were supplied by Mr Wessely himself from frozen samples from one or a number of his clinics.)

    This study was then released via Plos One within three days. …(P. Wessely has been linked to PLoS ONE in the way of …)There are many other reasons why people may not consider this to be a replication study. (…………… list here………………)

    Many media organisations picked up this rushed and poorly concluded study which we feel misreported the interpretations. It is unfortunate that P. Wessely and his colleagues should wish to get this non replication poorly reviewed and non specific study out to the media ASAP. They surely knew the implications of headlines claiming that XMRV was not present in 186 patients. XMRV is a well known retro virus to the scientific community. The aim of such studies of ME patients is to ascertain as to whether this virus has crossed over to them and understand the implications this has on their disease. It would appear that the IC study had none of these aims. This begs the question: What exactly were their aims?
    It is also the case that a number of British people with ME or “CFS” have tested positive outside of the Imperial College study for XMRV, however this information appears not to have been made public by the media or any official body.

    One of our main concerns is to do with the safety of the blood supply. The blood service advises that people with ME/CFS do not donate blood “until they feel they are clear from CFS”. Under the guidance of P. Wessely this issue has been portrayed as non organic in nature contrary to the WHO coding. This has lead to a lack of medical testing to verify the safety of a blood donation which is extremely shocking considering the retro virus connection. We are unaware of any blood study in the U.K or of any agency that advices the public of the issues that the blood donation service seems compelled to offer the public. This matter is of grave concern to us. The recent IC study that P Wessely was involved in again has risen many controversial questions that could be deemed to be suppressing the facts and medical advancements, desperately needed to protect people against this terrible disease recognised by the WHO. ( highlight here………….)

    P Wesselys connection to this ME issue has had a worldwide effect on the understanding and treatment, or lack of treatment and lack of biological advancement, for this illness for at least two decades. We therefore reiterate our complete lack of confidence in his portrayal his motives and his understanding of this illness. It is also fair to state that we have the same concerns over a number of other ….psychiatrists ……whom have worked closely with him over the years and have shared his school of thought. We believe that many of these people have a vested interest in keeping this issue within the realms of their own professional control.

    To summarise, we demand:

    The immediate suspension and investigation of Professor Simon Wessely in relation to all of the above.

    A thorough investigation into links to conflicts of interest of all ME or “CFS” associates of Simon Wessely.

    Immediate funding towards biomedical research and thorough retraining of the whole of the medical profession in relation to the neurological disease, ME.


    Yours Sincerely,
  2. Knackered

    Knackered Guest

    Wow flex, you're the best!

    I'll buy a big book of stamps and send this off to everyone who should get it once every thing's finalised.

    Thanks so much.
  3. Esther12

    Esther12 Senior Member

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    Should we 'demand'? - Does it sound too aggressive and angry? Who are we targeting with this? I've found people are often dismissive of the debate over CFS or ME - does it add anything here? If he was only suspended from all matters surrounding CFS, would that not be just as good? Is this at all likely to happen? Should we ask for somthing more realistic? - at the bottom you ask for an investigation into his work - would this be more likely? Who would be best to be in charge of a fair independant investigation? Am I being too negative?

    LOL... I was planning to go through the whole letter, but I'm feeling brain-dead already. This is more of a manfesto than a petition - it really covers a lot of ground. No-wonder you're exhausted after doing it all. Sorry for not having more to add. I'll try to get back to it later.
  4. flex

    flex *****

    Messages:
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    London area
    Q: "who are we targeting"
    A: Letter to go to UK Government, NICE, worldwide press, WHO, MRC. European Court of Human Rights etc etc. Any other address you wish worldwide.

    Q: "at the bottom you ask for an investigation into his work - would this be more likely? Who would be best to be in charge of a fair independant investigation"?
    A: UK Government, NICE, worldwide press, WHO, MRC. European Court of Human Rights etc etc. Any other address you wish worldwide. Thats the whole point of a multi targeted campaign.

    Q: "should we ask for something more realistic"
    A: Perhaps a knighthood?
  5. wornout

    wornout Guest

    Not sure if this is what you want.

    These are some changes I would make even my changes still need a few changes. I only got half way thru If this is what your looking for I will come back and work on it.


    DEAR ..........

    We the undersigned are writing this letter to demand that P. Simon Wessely should be suspended from all matters surrounding ME/CFS. Why have files containing information on ME been classified and the period extended until 2071? ME is recognised by the WHO as a neurological disease in the (NOT SURE WHAT GOES HERE). 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 MRC responsibility to invest in biomedical research to understand diseases and protect against them.

    This is not happening. It appears to us that the current versions of ME/CFS being “practiced “and “treated” in this country are falling under terminology as defined by a small bunch of ,mainly psychiatrists, whose practices have been questioned by the Scottish Parliament and the Welsh assembly. It is also true to say that the… Gibson report… made direct reference to concerns about connections of this small bunch of influential people to the Insurance industry, whom also have acted as advisors to the DWP..( CDC, GWS….CAM water contamination….)

    The above issues have lead to the NICE guidelines offering nothing but two “treatments” known as GET and CBT. It is even 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 NICE Judicial Review in the High Court in ( ……..)There are approximately 5000 papers worldwide that have been published showing and explaining the bio markers for ME listed by the WHO as neuro…….. Yet it appears to be treated as a “Functional Somatic Disorder”. This as we understand has been the longstanding published opinion of Mr Simon Wessely, influential psychiatrist , whom has previously …… insurance companies. Insurance companies consider themselves not liable for payouts if a person is suffering from a “psychological” illness. M. Wessely appears to have 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 “CFS” that is commonly referred to as the Oxford Criteria. There is no reason we can see as to why there should be so many versions, names and personal interpretations of this illness drawn up. The WHO has already listed ME in 1969. It appears to us that the terminology CFS was devised not by the WHO, not with scientific or biological understanding but by a number of vested interest groups who could throw the blanket term “CFS” over ME and other similar organic illnesses.

    ME/CFS should not be placed under this blanket term FSD with non organic illnesses that have “fatigue” as a symptom. This has lead to people suffering from ME being left extremely vulnerable to misunderstanding, ridicule, poor treatment protocol, dangerous treatments, lower benefit and insurance claim amounts payable. Many people with ME are bed bound with no advocates or representation anywhere!!

    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.
  6. flex

    flex *****

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    London area
    Thanks Wornout.
  7. wornout

    wornout Guest

    Is that what your looking for do you want me to do more will check back.
  8. flex

    flex *****

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    Anything you can offer. Could you put any additions in a different colour if poss so I can refer straight to them
  9. wornout

    wornout Guest

    I made a few more changes mostly were cut and past. Where some of your points belonged together with others. It is a good letter. The one thing I was taught was to keep things to 2min rule people tend to zone out and loose interest and cut out any words that aren't nessary.

    Hopefully someone can pick up where I left off. Having breathing problems. I'm alittle unreliable right now.


    Dear...........

    We the undersigned are writing this letter to demand that P. Simon Wessely should be suspended from all matters surrounding ME/CFS. Why have files containing information on ME been classified and the period extended until 2071? ME is recognised by the WHO as a neurological disease in the (NOT SURE WHAT GOES HERE). 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 MRC responsibility to invest in biomedical research to understand diseases and protect against them.

    This is not happening. It appears to us that the current versions of ME/CFS being “practiced “and “treated” in this country are falling under terminology as defined by a small bunch of ,mainly psychiatrists, whose practices have been questioned by the Scottish Parliament and the Welsh assembly. It is also true to say that the… Gibson report… made direct reference to concerns about connections of this small bunch of influential people to the Insurance industry, whom also have acted as advisors to the DWP..( CDC, GWS….CAM water contamination….)

    The above issues have lead to the NICE guidelines offering nothing but two “treatments” known as GET and CBT. It is even stated by NICE that these treatments are “not remotely curative”. Many physicians worldwide have published that GET has worsening affects on people with ME. 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. 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 NICE Judicial Review in the High Court in ( ……..)There are approximately 5000 papers worldwide that have been published showing and explaining the bio markers for ME listed by the WHO as neuro…….. Yet it appears to be treated as a “Functional Somatic Disorder”. This as we understand has been the longstanding published opinion of Mr Simon Wessely, influential psychiatrist , whom has previously …… insurance companies. Insurance companies consider themselves not liable for payouts if a person is suffering from a “psychological” illness. M. Wessely appears to have 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 “CFS” that is commonly referred to as the Oxford Criteria. There is no reason we can see as to why there should be so many versions, names and personal interpretations of this illness drawn up. The WHO has already listed ME in 1969. It appears to us that the terminology CFS was devised not by the WHO, not with scientific or biological understanding but by a number of vested interest groups who could throw the blanket term “CFS” over ME and other similar organic illnesses.


    ME patients are denied many medical tests as is advised by (…….) such as (……..) which leaves them termed “medically unexplained” by the medical profession and Insurance companies alongside DWP which leaves them vulnerable to the psychiatric “diagnosis” functional somatic disorder which in itself is subjective and a scientifically flawed concept. ME/CFS should not be placed under this blanket term FSD with non organic illnesses that have “fatigue” as a symptom. This has lead to people suffering from ME being left extremely vulnerable to misunderstanding, ridicule, poor treatment protocol, dangerous treatments, lower benefit and insurance claim amounts payable. Many people with ME are bed bound with no advocates or representation anywhere!!

    These understandings of somatic disorders being one and the same as ME are the well established views and practices of Mr Simon Wessely and he often refers to unscientific terms like “neuroanesthesia” He has even made such comments as (……………) The burden of proof of physical illness is on the patient whilst medical tests are being denied to him. Yet there is no burden of proof on the psychiatrists like Mr Wessely.

    All this is done with the under current that the patient knows he may receive lower benefits or no insurance payout if he can not prove a physical illness.

    The current research into ME by the ..WPI…. In Nevada has found a possible link to a retrovirus known as XMRV which could be a major break through in the understanding of ME also known as CFS particularly in North America. This study was tested and supported in two other reputable labs. They are (…NCI…..) and (…CC…..) The findings were peer reviewed over a period of six months . It was then published in the esteemed Science magazine.

    The IC in London ( supported by/ paid for by PLoS ONE) then carried out a study to see if they could come to the same conclusions. They found XMRV not to be present in any one of 186 patient cohorts which is unusual as the occurance in the general population is around 3.5% .
    The patient blood samples (were supplied by Mr Wessely himself from frozen samples from one or a number of his clinics.) We would like to question whether these 186 patients were involved in any other previous study and whether their neurological signs, symptoms and previous test history which could point to Neuro immune disease had already been screened out before their samples were supplied. P. Wessely supplied these samples as a psychiatrist with a vested interest in a non organic outcome. This study was then released via Plos One within three days. …(P. Wessely has been linked to PLoS ONE in the way of …)There are many other reasons why people may not consider this to be a replication study. (…………… list here………………)

    The researchers at IC have since stated that they do not believe XMRV to be the cause of “CFS” in the UK but go on to acknowledge that it CFS is an organic disease. One of the citations is professor Wessely himself. This is confusing to many people as he is well published claiming that ME/CFS is not a disease and is in fact a (“functional somatic disorder” get clarification and quotes) The patient blood samples (were supplied by Mr Wessely himself from frozen samples from one or a number of his clinics.)

    Many media organisations picked up this rushed and poorly concluded study which we feel misreported the interpretations. It is unfortunate that P. Wessely and his colleagues should wish to get this non replication poorly reviewed and non specific study out to the media ASAP. They surely knew the implications of headlines claiming that XMRV was not present in 186 patients. XMRV is a well known retro virus to the scientific community. The aim of such studies of ME patients is to ascertain as to whether this virus has crossed over to them and understand the implications this has on their disease. It would appear that the IC study had none of these aims. This begs the question: What exactly were their aims?
    It is also the case that a number of British people with ME or “CFS” have tested positive outside of the Imperial College study for XMRV, however this information appears not to have been made public by the media or any official body.

    One of our main concerns is to do with the safety of the blood supply. The blood service advises that people with ME/CFS do not donate blood “until they feel they are clear from CFS”. Under the guidance of P. Wessely this issue has been portrayed as non organic in nature contrary to the WHO coding. This has lead to a lack of medical testing to verify the safety of a blood donation which is extremely shocking considering the retro virus connection. We are unaware of any blood study in the U.K or of any agency that advices the public of the issues that the blood donation service seems compelled to offer the public. This matter is of grave concern to us. The recent IC study that P Wessely was involved in again has risen many controversial questions that could be deemed to be suppressing the facts and medical advancements, desperately needed to protect people against this terrible disease recognised by the WHO. ( highlight here………….)

    P Wesselys connection to this ME issue has had a worldwide effect on the understanding and treatment, or lack of treatment and lack of biological advancement, for this illness for at least two decades. We therefore reiterate our complete lack of confidence in his portrayal his motives and his understanding of this illness. It is also fair to state that we have the same concerns over a number of other ….psychiatrists ……whom have worked closely with him over the years and have shared his school of thought. We believe that many of these people have a vested interest in keeping this issue within the realms of their own professional control.

    To summarise, we demand:

    The immediate suspension and investigation of Professor Simon Wessely in relation to all of the above.

    A thorough investigation into links to conflicts of interest of all ME or “CFS” associates of Simon Wessely.

    Immediate funding towards biomedical research and thorough retraining of the whole of the medical profession in relation to the neurological disease, ME.


    Yours Sincerely,
  10. wornout

    wornout Guest

    Learning my way around not sure how to do colors
  11. wornout

    wornout Guest

    no additions a few area's reworded mostly cut out alot of words
  12. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    As I discussed in Chat with Flex, the only way I can help is to first copy and write out the main ideas. So I'm going to attempt doing that. This may or may not be useful.
  13. flybro

    flybro Senior Member

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    pluto
    Fantastic wornout. :Sign Good one:

    I hope others can fill in the blanks.

    its getting there flex. :thumbsup:
  14. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Flex and wornout, I think it's really commendable that you're taking this on. It needs to be done.

    I'm finding I need to go through this letter line by line. I've colored the corrections that I recommend. I've only gotten down a short ways so far and can come back and modify more if you like. The first thing that strikes me is that this letter is way too long. Personally, I think it needs to be cut down a lot. I think it's too overwhelming at this present length. I'll have to see how I feel about that as I continue editing it.

    We spell a lot of words differently in the U.S. but I've used Merriam-Webster's Dictionary which contains both the British and the U.S. versions of words to look up any changes I've made.


    [P]= New Paragraph

    <>= Delete word(s)


    Words colored green are the original text that needs to be changed.

    Words, sentences and symbols in red are the revised text I suggest.

    Words and sentences in black are fine as they are or will need further correction but I have no suggestions or insufficient data to make suggestions at this time.

    For now I'm going to number the paragraphs for easier reference while we work on it.

    1) Dear...........

    We the undersigned are writing this letter to demand that Dr. Simon Wessely <should> be suspended from all matters surrounding Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (ME/CFS). Why have files containing information on ME been classified and the period extended until 2071?
    I don't think that question fits there. I do think it's an important point and should be moved somewhere else in the letter, probably near the end.
    <ME is recognised by the WHO as a neurological disease in the (NOT SURE WHAT GOES HERE).> ME has been recognised as a neurological disease in the World Health Organization's International Classification of Diseases since 1969. The UK government and other agencies should fulfil their obligation to recognise ME in <such> a similar manner and they need to treat the patients according to <this> the same 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 MRC's responsibility to invest in biomedical research in order to understand diseases and to protect against them.

    2) This is not happening. It appears to us that the current versions of ME/CFS being “practiced “and “treated” in this country are falling under terminology as defined by a small <bunch of ,mainly> group of psychiatrists, whose practices have been questioned by the Scottish Parliament and the Welsh assembly. <It is also true to say that the… Gibson report… made> The Gibson Report makes direct reference to concerns about connections of this small <bunch> group of influential people to the insurance industry, <whom also have> who have also acted as advisors to the DWP..( CDC, GWS….CAM water contamination….)

    3) The above issues have <lead> led to the NICE guidelines <offering nothing but two “treatments” known as GET and CBT.> which offer nothing but two “treatments” known as Graded Exercise Therapy, (GET) and Cognitive Behavior Therapy (CBT). It is even stated by NICE that these treatments are “not remotely curative for ME patients". Many physicians worldwide have published that GET has worsening <affects> effects on people with ME. Many studies and clinics <claiming to be representing> who claim to represent 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> Definition of ME/CFS which is considered the Gold Standard definition by reputable ME/CFS researchers and doctors throughout the world. Therefore in the public interest we would like a full examination and public <declaration> inquiry as to who is providing these courses of CBT and GET, for what sums of money and as to why <this is> these two therapies are all that are being offered and often forced upon people who are suffering with ME.

    Okay, here's the rest of the letter with corrections I've made already done. I basically corrected as much of this as I could. You still have research to do on it. I think it could be tightened up quite a bit but I tried to leave your wording in as much as possible.

    4) Many of these opinions were offered in the NICE Judicial Review in the High Court in ( ……..). There are approximately 5000 papers worldwide that have been published showing and explaining the biomarkers for ME listed by the WHO as a neurological illness yet it appears to be treated as a “Functional Somatic Disorder”. This as we understand has been the longstanding published opinion of Dr. Simon Wessely, influential psychiatrist , who has previously …… insurance companies. Insurance companies consider themselves not liable for payouts if a person is suffering from a “psychological” illness. Dr. Wessely appears to have 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 “CFS” that is commonly referred to as the Oxford Criteria. There is no reason we can see as to why there should be so many versions, names and personal interpretations of this illness drawn up. The WHO has already listed ME as a neurological illness in 1969. It appears to us that the terminology CFS was devised not by the WHO, not with scientific or biological understanding but by a number of vested interest groups who could throw the blanket term “CFS” over ME and other similar organic illnesses.


    5) ME patients are denied many medical tests as is advised by (…….) such as (……..) which leaves them termed “medically unexplained” by the medical profession and insurance companies alongside DWP which leaves them vulnerable to the psychiatric “diagnosis” functional somatic disorder which in itself is subjective and a scientifically flawed concept. ME/CFS should not be placed under this blanket term FSD with non-organic illnesses that have “fatigue” as a symptom. This has led to people suffering from ME being left extremely vulnerable to misunderstanding, ridicule, poor treatment protocol, dangerous treatments, lower benefits and insurance claim amounts payable. Many people with ME are bedbound with no advocates or representation anywhere!!

    6) These understandings of somatic disorders being one and the same as ME are the well established views and practices of Dr. Simon Wessely and he often refers to unscientific terms like “neuroanesthesia”. He has even made such comments as (……………). The burden of proof of physical illness is on the patient whilst medical tests are being denied to him or her yet there is no burden of proof on the psychiatrists like Dr. Wessely. All this is done with the undercurrent that the patient knows he may receive lower benefits or no insurance payout if he cannot prove a physical illness.

    The current research into ME by the Whittemore Peterson Institute (WPI) in Nevada has found a possible link to a retrovirus known as XMRV which could be a major breakthrough in the understanding of ME also known as CFS particularly in North America. This study was tested and supported in two other reputable labs. They are the National Cancer Institute (NCI) and the Cleveland Clinic (CC). The findings were peer reviewed over a period of six months. It was then published in the esteemed Science magazine.

    7) Wessely et. al. carried out a study through the Imperial College to see if they could find XMRV in people with CFS. They paid PloS ONE to publish their study which showed that they had not found XMRV in any one of 186 CFS patients which makes no sense as the occurrence in the general population has been found to be around 3.5%. The patient blood samples were supplied by Dr. Wessely himself from frozen samples from one or a number of his clinics. We would like to question whether these patients were involved in any other previous study and whether their neurological signs, symptoms and previous test history which could point to a neuro-immune disease had already been screened out before their samples were supplied. Dr. Wessely supplied these samples as a psychiatrist with a vested interest in a non-organic outcome. This study was then released via PloS ONE within three days. Dr. Wessely has been linked to PLoS ONE in the way of …). There are many other reasons why people may not consider this to be a replication study. (…………… list here………………)

    8) The researchers at IC have since stated that they do not believe XMRV to be the cause of “CFS” in the UK but go on to acknowledge that CFS is an organic disease. One of the citations is professor Wessely himself. This is confusing to many people as he is well published claiming that ME/CFS is not a disease and is in fact a (“functional somatic disorder”. (get clarification and quotes) The patient blood samples (were supplied by Mr Wessely himself from frozen samples from one or a number of his clinics.) I would Delete most of paragraph 8 and just write about the “functional somatic disorder” , I wouldn't mention the confusion of where he stands and you already mentioned the frozen samples for his cohort above.

    9) Many media organisations picked up this rushed and poorly concluded study which we feel misreported the interpretations. It is unfortunate that Dr. Wessely and his colleagues rushed to get this non-replication, poorly reviewed and non-specific study out to the media ASAP. They surely knew the implications of headlines claiming that XMRV was not present in the 186 patients they tested. The aim of such studies of ME patients is to ascertain as to whether this virus has crossed over to them and understand the implications this has on their disease. It would appear that the IC study has followed none of these aims. This begs the question: What exactly were their aims?

    It is also the case that a number of British people with ME or “CFS” have tested positive outside of the Imperial College study for XMRV, however this information appears not to have been made public by the media or any official body.

    10) One of our main concerns has to do with the safety of the blood supply. The blood service advises that people with ME/CFS do not donate blood “until they feel they are clear from ME/CFS”. This has led to a lack of medical testing to verify the safety of blood donations which is extremely shocking considering the finding of the retro-virus XMRV in people with ME/CFS. This matter is of grave concern to us.

    11) Dr. Wessely's connection to ME has had a worldwide effect on the understanding and treatment, or lack of treatment and lack of biological advancement, for this illness for at least two decades. We therefore reiterate our complete lack of confidence in the portrayal of his motives and his understanding of this illness. It is also fair to state that we have the same concerns over a number of other psychiatrists, doctors and researchers who have worked closely with him over the years and have shared his school of thought. We believe that many of these people have a vested interest in keeping this issue within the realms of their own professional control.

    To summarise, we demand:

    The immediate suspension and investigation of Professor Simon Wessely in relation to all of the above.

    A thorough investigation into links to conflicts of interest of all ME or “CFS” associates of Simon Wessely.

    Immediate funding towards biomedical research and thorough retraining of the whole of the medical profession in relation to the neurological disease, ME.


    Yours Sincerely,

    I also think we should have References for this letter for every statement that we can. Check out this petition letter and also, notice how short it is:


    http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/
  15. GlosGirl

    GlosGirl

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    Needs more structure...

    Heya Flex

    It's some fine work you're doing here! Well done for having the determination to see this through!

    Critique: I'm sure the content is all valid, but I think it needs more structure. At the moment it's a rather dense read with no clear path through. Can you list the bullet points, and then write the letter around them? Happy to help on this if you like.

    Pen
  16. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Hi Glosgirl,

    Welcome to the forum! :balloons: It would be great if you could help with this letter too. :Retro smile:

    tee
  17. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Excellent work guys - I shall have a go on my own merits and try and come up with something similar or amalgamate the two! Lets get posting:D
  18. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Cool deal Uno. Welcome to the Forum!:balloons:
  19. jace

    jace Off the fence

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    England
    I'm working on a documentary treatment. These are the primary bullet points if they are of any use to anyone -

    The Shame of Myalgic Encephalomylitus AKA Chronic Fatigue Syndrome

    Anyone can become become ill with ME/CFS.
    (ME means muscular pain and brain and spinal chord inflammation / pain)

    Questions that need answers:

    Why is there a file of papers from 1988 under lock and key, barred from public view for 83 years?
    http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

    Why, when a group of sufferers brought a judicial review, did the judge refuse to admit a large proportion of their evidence, then throw out their case "for lack of evidence"?
    http://www.meactionuk.org.uk/nicejr.htm and http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

    Why is all the public money for online information going to inept and out of date websites?
    http://www.measussex.org.uk/ http://www.mesupportgroup.co.uk/bbmeresearch.html
    http://www.afme.org.uk/ http://www.ayme.org.uk/article.php?sid=9
    When there are all these guys out there:
    http://www.meassociation.org.uk/ http://www.becclestown.co.uk/beccles-me-support/me-support-forum.html http://www.meresearch.org.uk/ http://www.mecfs.co.uk/ http://www.meaction.org.uk

    Why was the UK XMRV study (lead by psychiatrists) rushed through without consultation with the people who's study they were supposed to be trying to replicate, and given only four days for peer review? Link to news item on the study, important to read the comments, particularly the one from the original XMRV lab, the Whittemore Peterson Institute, just over half-way down the page.
    http://www.independent.co.uk/news/s...und-the-cause-of-me-is-premature-1859003.html

    What's happening in the States? http://www.aboutmecfs.org/Rsrch/XMRVStudies.aspx

    Why all the smoke and mirrors? http://www.oslersweb.com/

    Why would a loving mother help her daughter to die?
    http://www.telegraph.co.uk/news/uknews/7113471/Jeremy-Vine-my-admiration-for-Kay-Gilderdale.html

    Why can't the NHS fund the tests that would diagnose the disease, when they will fund the tests that won't show the physical damage caused by ME?
    http://fm-cfs.ca/biomarkerME-CFS.html

    Why are a quarter of a million people denied effective cheap symptomatic treatment under the NHS? http://www.lowdosenaltrexone.org/

    Why was a sick daughter ripped from her family home, where she was well cared for, and sectioned into a mental institution?
    http://www.investinme.org/Article-050 Sophia Wilson 01.htm

    No-one can say that ME sufferers don't have a sense of humour!
    http://niceguidelines.blogspot.com/2009/12/professor-simon-wessely-and-his-cbt.html

    There is no empirical diagnosis available under the NHS for ME/CFS.
    ME sufferers have their chances of developing cancer increased 50 fold.

    Anyone can become become ill with ME/CFS.

    The majority of ME/CFS sufferers are carrying a new contagious human retrovirus of unknown pathogen (XMRV).

    There are currently no methods in the UK to screen for XMRV. The nations blood supply is potentially at risk.

    ME/CFS sufferers are not permitted to donate their blood.

    ME/CFS can be fatal.

    It's all a bit brain-bending, aint it :headache: but together we can do it!

    jace x
  20. Sing

    Sing Senior Member

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    New England
    Hi!

    Like Esther 12, I feel it would be stronger not to use the word, "demand". My association with that is the student protests in the '60's, of which I was a part. We were always "demanding" things of the Univiersity's Board of Trustees, so "demand" has a youthful connotation to me. Something more like "recommend" or "strongly recommend" suggests coming from a place of more equality and knowledge, to my mind. And, I too agree with Esther12's thought that demanding (requesting, urging?) an investigation would be a sidetrack. Isn't our purpose to urge for an immediate change of course instead? With new leadership and new research initiatives?

    However, maybe different versions of this letter could be sent to different bodies. And perhpas, if one were directed to a newspaper, suggesting an investigation could be of particular interest.

    I also wonder if referencing the current change in leadership at the CDC, calling Reeves, Wessely's counterpart in his approach to ME/CFS, would be h elpful? "Keep up with the Americans! is the suggestion.

    Sing

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