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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,
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,
