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Chronic Fatigue Scientists Get Death Threats

Researchers who suggest psychological contributors to chronic fatigue syndrome receive death threats from activists.

By | August 23, 2011

Xenotropic Murine Leukemia Virus Related-VirusWIKIMEDIA COMMONS, CENTERS FOR DISEASE CONTROL AND PREVENTION

Researchers who study chronic fatigue syndrome (CFS) have been subject to harassment, stalking, and death threats from activists. The scientists provoked the extremist’s wrath by publishing studies suggesting the disease has anything other than a purely external cause.

After reporting that a link between murine leukemia virus and chronic fatigue was the result of laboratory contamination, Imperial College London researcher Myra McClure received months of daily emails from a man who said he was having pleasure imagining her drown, The Guardian reports. She eventually stopped collaborating with US colleagues after getting more explicit death threats saying she would be shot.

Michael Sharpe, an Oxford psychologist who found that cognitive behavioral therapy relieved symptoms for some patients, has been stalked by a woman with a knife, according to The Guardian. "These campaigns are only going to harm patients,” by forcing scientists to stop studying the disease, Sharpe told the publication.

Another scientist, King’s College London psychiatrist Simon Wessely has stopped studying CFS altogether, in favor of conditions linked to war zones, which requires him to visit locales like Iraq and Afghanistan—where he says he feels much safer.

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Avatar of: Huyie

Huyie

Posts: 3

August 23, 2011

Professor Wessely and other members of the “Wessely
Schoolâ€쳌 simply ignore all this scientific evidence that proves them
wrong and they remain committed to their own unshakable beliefs, which
many people believe have resulted in unnecessary suffering of
innumerable sick people.
That ME/CFS is not a somatisation disorder is now beyond doubt
because there is overwhelming evidence confirming it to be a
multi-system organic disorder in which there is disruption of virtually
every system in the body (for evidence, see http://www.meresearch.org.uk/i... and http://www.meactionuk.org.uk — between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder).
http://www.investinme.org/Arti...

 

Avatar of: DK

Anonymous

August 23, 2011

The word 'activists' seems somehow out of place. I can think of a few better terms. Classifying these people as 'activists' borders on the absurd.

Avatar of: MR

Anonymous

August 23, 2011

Based on its international definition, "terrorist" would be a better word.

Avatar of: Zophar0

Anonymous

August 23, 2011

This same story has been recycled in the media over and over again for the past month. The researchers have not produced any evidence of specific threats nor gone to the police. There is no evidence that any threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals who may or may not be patients. There is intense opposition to the view that ME/CFS is psychological. Much of this opposition comes from other SCIENTISTS, not patient groups, with most government funded researchers from the US and Japan disagreeing with researchers from the UK. The NIH State of the Knowledge conference on ME/CFS held a couple of months ago presented many views about the neurology, immunology, virology, metabolics, and systems biology of the disease, but gave very little credence to psychological explanations. The theory that it is psychological has suffered a big setback in the scientific community and is a minority position. See http://www.research1st.com/201...

Avatar of: Ed Rybicki

Ed Rybicki

Posts: 82

August 23, 2011

...and all that sort of behaviour does is drive legitimate researchers out of the field altogether.  Leaving it populated by the gallery-players and the desperate.  So it goes!

Avatar of: Douglegrand

Anonymous

August 23, 2011

You are not able to tell Loons anything other then what they want to hear. These scientists need to be protected so they can do research.

Avatar of: Guest

Anonymous

August 23, 2011

These kind of fundamentalists found all over the world. they have nuisance value Scientist are getting this kind of  threat from  ancient time.If any scientist leave their research from this kind of danger than how can science progress?

Avatar of: Huyie

Huyie

Posts: 3

August 23, 2011

Simon Wessely and his cohorts have ignored all the scientific evidence that proves ME/CFS is a physical illness.  There is overwhelimng evidence of neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations in ME/CFS patients.  In fact there are over 3,000 published papers that demonstrate ME/CFS is not a psychiatric disorder, which Simon Wessely chooses to ignore.

Avatar of: Tiznado

Anonymous

August 23, 2011

That can be a possibility, chronic fatigue can be related to the emotional status of the person...not necessarily be related with a physical illness...it can be of course but not in all cases

Avatar of: DM

Anonymous

August 23, 2011

There is no evidence that the threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals, who may or may not actually have the disease. There is no evidence that threats are connected to organized advocacy groups. The disagreement here is largely between scientists in countries such as the US and Japan who believe chronic fatigue syndrome has a physical cause and scientists in the UK. The recent NIH State of the Knowledge conference gave almost no credence to psychological explanations, focusing instead on topics like neurology and immunology. It is unfair to represent disagreement with Dr. Wessley's views as solely the work of crazed activists; in fact, psychological explanations for CFS are now the minority position in the scientific community.

Avatar of:

Posts: 0

August 23, 2011

Professor Wessely and other members of the “Wessely
Schoolâ€쳌 simply ignore all this scientific evidence that proves them
wrong and they remain committed to their own unshakable beliefs, which
many people believe have resulted in unnecessary suffering of
innumerable sick people.
That ME/CFS is not a somatisation disorder is now beyond doubt
because there is overwhelming evidence confirming it to be a
multi-system organic disorder in which there is disruption of virtually
every system in the body (for evidence, see http://www.meresearch.org.uk/i... and http://www.meactionuk.org.uk — between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder).
http://www.investinme.org/Arti...

 

Avatar of:

Posts: 0

August 23, 2011

The word 'activists' seems somehow out of place. I can think of a few better terms. Classifying these people as 'activists' borders on the absurd.

Avatar of:

Posts: 0

August 23, 2011

Based on its international definition, "terrorist" would be a better word.

Avatar of:

Posts: 0

August 23, 2011

This same story has been recycled in the media over and over again for the past month. The researchers have not produced any evidence of specific threats nor gone to the police. There is no evidence that any threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals who may or may not be patients. There is intense opposition to the view that ME/CFS is psychological. Much of this opposition comes from other SCIENTISTS, not patient groups, with most government funded researchers from the US and Japan disagreeing with researchers from the UK. The NIH State of the Knowledge conference on ME/CFS held a couple of months ago presented many views about the neurology, immunology, virology, metabolics, and systems biology of the disease, but gave very little credence to psychological explanations. The theory that it is psychological has suffered a big setback in the scientific community and is a minority position. See http://www.research1st.com/201...

Avatar of:

Posts: 0

August 23, 2011

...and all that sort of behaviour does is drive legitimate researchers out of the field altogether.  Leaving it populated by the gallery-players and the desperate.  So it goes!

Avatar of:

Posts: 0

August 23, 2011

You are not able to tell Loons anything other then what they want to hear. These scientists need to be protected so they can do research.

Avatar of:

Posts: 0

August 23, 2011

These kind of fundamentalists found all over the world. they have nuisance value Scientist are getting this kind of  threat from  ancient time.If any scientist leave their research from this kind of danger than how can science progress?

Avatar of:

Posts: 0

August 23, 2011

Simon Wessely and his cohorts have ignored all the scientific evidence that proves ME/CFS is a physical illness.  There is overwhelimng evidence of neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations in ME/CFS patients.  In fact there are over 3,000 published papers that demonstrate ME/CFS is not a psychiatric disorder, which Simon Wessely chooses to ignore.

Avatar of:

Posts: 0

August 23, 2011

That can be a possibility, chronic fatigue can be related to the emotional status of the person...not necessarily be related with a physical illness...it can be of course but not in all cases

Avatar of:

Posts: 0

August 23, 2011

There is no evidence that the threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals, who may or may not actually have the disease. There is no evidence that threats are connected to organized advocacy groups. The disagreement here is largely between scientists in countries such as the US and Japan who believe chronic fatigue syndrome has a physical cause and scientists in the UK. The recent NIH State of the Knowledge conference gave almost no credence to psychological explanations, focusing instead on topics like neurology and immunology. It is unfair to represent disagreement with Dr. Wessley's views as solely the work of crazed activists; in fact, psychological explanations for CFS are now the minority position in the scientific community.

Avatar of:

Posts: 0

August 23, 2011

Professor Wessely and other members of the “Wessely
Schoolâ€쳌 simply ignore all this scientific evidence that proves them
wrong and they remain committed to their own unshakable beliefs, which
many people believe have resulted in unnecessary suffering of
innumerable sick people.
That ME/CFS is not a somatisation disorder is now beyond doubt
because there is overwhelming evidence confirming it to be a
multi-system organic disorder in which there is disruption of virtually
every system in the body (for evidence, see http://www.meresearch.org.uk/i... and http://www.meactionuk.org.uk — between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder).
http://www.investinme.org/Arti...

 

Avatar of:

Posts: 0

August 23, 2011

The word 'activists' seems somehow out of place. I can think of a few better terms. Classifying these people as 'activists' borders on the absurd.

Avatar of:

Posts: 0

August 23, 2011

Based on its international definition, "terrorist" would be a better word.

Avatar of:

Posts: 0

August 23, 2011

This same story has been recycled in the media over and over again for the past month. The researchers have not produced any evidence of specific threats nor gone to the police. There is no evidence that any threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals who may or may not be patients. There is intense opposition to the view that ME/CFS is psychological. Much of this opposition comes from other SCIENTISTS, not patient groups, with most government funded researchers from the US and Japan disagreeing with researchers from the UK. The NIH State of the Knowledge conference on ME/CFS held a couple of months ago presented many views about the neurology, immunology, virology, metabolics, and systems biology of the disease, but gave very little credence to psychological explanations. The theory that it is psychological has suffered a big setback in the scientific community and is a minority position. See http://www.research1st.com/201...

Avatar of:

Posts: 0

August 23, 2011

...and all that sort of behaviour does is drive legitimate researchers out of the field altogether.  Leaving it populated by the gallery-players and the desperate.  So it goes!

Avatar of:

Posts: 0

August 23, 2011

You are not able to tell Loons anything other then what they want to hear. These scientists need to be protected so they can do research.

Avatar of:

Posts: 0

August 23, 2011

These kind of fundamentalists found all over the world. they have nuisance value Scientist are getting this kind of  threat from  ancient time.If any scientist leave their research from this kind of danger than how can science progress?

Avatar of:

Posts: 0

August 23, 2011

Simon Wessely and his cohorts have ignored all the scientific evidence that proves ME/CFS is a physical illness.  There is overwhelimng evidence of neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations in ME/CFS patients.  In fact there are over 3,000 published papers that demonstrate ME/CFS is not a psychiatric disorder, which Simon Wessely chooses to ignore.

Avatar of:

Posts: 0

August 23, 2011

That can be a possibility, chronic fatigue can be related to the emotional status of the person...not necessarily be related with a physical illness...it can be of course but not in all cases

Avatar of:

Posts: 0

August 23, 2011

There is no evidence that the threats are part of a "campaign" as opposed to the efforts of a few disgruntled individuals, who may or may not actually have the disease. There is no evidence that threats are connected to organized advocacy groups. The disagreement here is largely between scientists in countries such as the US and Japan who believe chronic fatigue syndrome has a physical cause and scientists in the UK. The recent NIH State of the Knowledge conference gave almost no credence to psychological explanations, focusing instead on topics like neurology and immunology. It is unfair to represent disagreement with Dr. Wessley's views as solely the work of crazed activists; in fact, psychological explanations for CFS are now the minority position in the scientific community.

Avatar of:

Posts: 0

August 24, 2011

Death threats from unstable individuals does sorta lend credence to the idea that there's something wrong in the heads of the people with this problem.

Avatar of:

Posts: 0

August 24, 2011

Inventing of new illnesses brings a lot of economic benefits for researchers who will endlessly apply for grants as well as for pharma companies who will develop new drugs.  They are going to fight everyone who stands on their way.

Avatar of:

Posts: 0

August 24, 2011

I am so unsurprised by the anger and disgust of people who suffer from chronic fatigue. Of course there will be a number of "chronic fatigue" sufferers who have a major (or even 100%) psychological component to their health issues, but chronic fatigue is a very real physical condition.

No-one who has ever woken day after day for years, utterly wrung out and exhausted, feeling more dead than alive, too mentally confused and physically unco-ordinated to even form form words let alone sentences (even without drinks the night before), nauseated, and distressed, would ever accept that this is a psychological issue. Chronic fatigue in a moderate-to-severe form is a living hell.

Cognitive behaviour therapy has been exposed via meta-analyses to be no better than placebo, and any positive effect disappears soon after leaving the therapist's office. This is a therapeutic "strategy" that should have been discarded long ago, especially since we now have effective, evidence-based strategies to hand that are cheaper to provide, act faster, and are a lot more comfortable for the client.

So chronic fatigue certainly exists as a physical disorder that at this time we do not have any explanation for. We're used to the medical profession crying "psychological" whenever there is something they don't yet understand.

At this stage we can be fairly certain that chronic fatigue is associated with an episode of, or ongoing experience of, a compromised endocrine system.

I suffered from chronic fatigue for years after catastrophic post-surgical complications but now manage it quite well by elevating mitochondrial function via new genetic technology. I now lead an "almost normal" life but just have to be more cognisant than most people in terms of sleep management, or exposing myself to extended high levels of stress.

I can't imagine going back to the hell that my life was like, and although I will never condone violence or threat, I empathise with the extreme distress and even rage of sufferers who are once again being told it's all in their minds.

There are so many important research projects waiting on funding. My question is why a cent of funding is being wasted on those who ignore scientific evidence in favour of their own ignorant bias against people who are suffering. In this case the "loons" are the scientists involved in this third-rate research.

If they want to test their crackpot theories they can come up with their own funds and leave the public purse alone.

Avatar of:

Posts: 0

August 24, 2011

"The Canadian Expert Consensus Panel has published a medical milestone, the first
clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This  definition is clearly a vast improvement over the CDC's 1994 case definition for CFS, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the CDC's 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria."

How, can they possibly recommend exercise for ME/CFS?  Google: Immunological Changes After Both Exercise and Activity in Chronic Fatigue Syndrome

Avatar of:

Posts: 0

August 24, 2011

Haha, this is so funny. I can clearly imagine a discussion between the evil psychologists and their PR-Advisors:

PR-Advisor: "To be honest, it's getting more and more difficult to cover your a**es. You deny important studies that prove that CFS a not a psychological issue. You failed completely with the PACE trials. Almost everybody knows now, that they were manipulated. People begin to understand that noming CFS a psychological illness really is a crime in itself. And Mr. Wessely, your hilarious report "The legend of Camelford" where you tried to cover up a water pollution scandal... Thanks to the internet more and more people don't trust you anymore. We don't know what do do..."

Evil psychologist: "Oh man, yeah you're right. We really screwed things up. We know that people see through our lies now. We even get emails with dead threats."

PR-Advisor: "REALLY???!! Well that is GREAT!"

Evil psychologist: "How is that great? It just shows how angry the patients have become, because we have mistreated them so much."

PR- Advisor: "Yes of course! But if we go to the press, we can generate a picture of you as martyrs who where doing nothing but trying to help. "Death threats" sounds great! People who know little about CFS and your crimes will only see "Death threats" and think "oh these poor good-hearted doctors who seriously try to help are put down for no reason."

Evil psychologist: "That sounds great! Let's do it!"

Avatar of:

Posts: 0

August 24, 2011

I'm quoting a blogpost because it makes all the points. This nutshell I should point out, lacks EVIDENCE which s something I thought Scientists relied on

On Friday 29th July the morning BBC radio news reported that Professor Simon Wessely, seen by many ME/CFS sufferers in a less favourable light than, say, Jason Voorhees, was being interviewed telling the nation about the threats him and his colleagues have allegedly received from ME/CFS sufferers. This was followed up by a couple of articles on the BBC's website.

Then the Observer of Sunday 21st August had essentially the same story, brave researchers stifled by "a campaign of abuse and violence" from ME/CFS militants violently opposed to the notion that their illness is psychological.

Now the first thing that springs to mind is this notion of vicious ME/CFS militants. Remember, this illness is characterised by a lack of energy, as well as cognitive dysfunction yet they are portrayed as "as dangerous and uncompromising as animal rights activists".

Now that's one hell of a claim. So I read on to see details of police investigations and arrests made of these terrorists. Neither the Observer article nor the BBC Website detail any such arrest or indeed any investigation. I did a, brief, Google search and nothing turned up.

I think at this point a bit of clarity is required, because you will find none from the Observer or the BBC. At present the only treatments offered by the NHS in England (Scotland has a separate system) are psychological. Moreover, the only projects currently receiving funding by the Medical Research Council are Psychological. No Biomedial research is being funded.

This is odd by international standards as ME/CFS is accepted to be neurological by, amongst others, the World Health Organisation (ICD G93.3) and the NHS in Scotland. I am not saying an ME sufferer might not require some psychological support, it's a terrible thing to have and to try and cope with, but NO BIOMEDICAL RESEARCH IS BEING FUNDED BY THE MRC.

This classification of MC/CFS as neurological is not some new thing that NICE and NHS in England have yet to catch up on, it has classified that way since 1969, before Dr. Wessely's time at least.

Since 1992, however, diagnostic guidance in England has been that this ailment is purely psychological, which means that the symptoms are not to be "legitimised", i.e. it is all in the sufferer's head and the doctor should not say or do anything that gives the impression that the effects are anything other than psychosomatic and therefore if the patient can be induced to "pull themselves together" then all will be well.

In Scotland they use what is referred to as the "Canadian Criteria" stemming from work that led to an article in the Journal of Internal Medicine and subsequently refined. This considers ME/CFS to be a physiological condition and the psychological treatments used buy the NHS in England to be of limited benefit if not harmful. These criteria were drawn up in 2003, so again this is not some new thing to which the NHS in England has not had time to respond.

This means that, if International opinion is correct, then sufferers in England are not only being treated as if they are, in effect, fantasists, but also the only treatment they are being offered is potentially harmful.

Neither the BBC nor the Observer offer any of this as background, only the image of a few researchers, from the psychiatric point of view, as lone seekers of truth was presented.

The English diagnostic criteria, the Oxford criteria, were born of psychiatry and remain rooted there, and I should explain the conspiracy theory alluded to, incorrectly, by Dr Wessely in the Observer article. 

Wessely explains the theory as a stitch up by drug companies, so the theory can be ridiculed because, if it was then the drug companies would make money from it. The theory is, however, slightly different. If ME/CFS is a psychiatric illness then, in a system of private health insurance, it would be exempt from having to pay for treatment or would have to pay at a lesser rate. Simon Wessely is a key figure in the psychiatric approach to ME/CFS and has spoken at events sponsored by Private Health companies and been an advisor for private health companies.

One of the companies Simon Wessely has had a relationship with, Unum. In its parent country, the United States, Unum has been investigated for having a quota for closing claims with no payment and a former California Insurance Commissioner described them as "an outlaw company. it is a company that for years has operated in an illegal fashion"

Given this and other snippets, and the involvement of Unum in both Labour and Conservative policies for Health and Welfare reform, Simon Wessely's relationship with private health organisations is perceived to be indicative of a motive for keeping ME/CFS classified as a psychiatric illness, thus no payments, rather than a physiological illness, for which treatment would have to be paid for.

It would seem though that Simon Wessely preemptive retaliation has been successful. He is perceived by many now to be the victim of a shadowy cabal of ME/CFS activists. Moreover, instead of journalists focussing on why HE and others are so adamantly opposed to the possibility of ME/CFS having an, internationally accepted, physiological cause, they have to defend themselves against charges of being opposed to the psychological option instead of the situation they really find themselves in, fighting a system that only allows for psychological treatment.

Balance in reporting doesn't necessarily mean you get equal coverage and your P.O.V. is treated as equally valid, it might mean only that claims are verified and facts checked. If crimes had been committed it does not mean a right to have part of the piece say you were justified, but part at least should be devoted to investigating if the crime actually occurred.

Neither Tom Feilden of the BBC nor Robin McKie of The Observer seem to have approached any ME organisation for comment, nor is there any sign of investigating the claims made. Newspapers can get away with being unbalanced, the BBC is supposed to at least provide lip service to balance.

Avatar of:

Posts: 0

August 24, 2011


Reading you blog quote, I am starting to think that the problem is that "Researcher get death threats" will attract more readers than "CFS patients are misunderstood and have a long history of being treated wrong by doctors and society alike and a little minority writes emails with death threats (although we have no proof of that) to researchers who really don't do any research but try to find ways to sell their product called CBT and work together with insurance companies."

The first headline is easier to understand and will attract more readers while the second one is too complicated and would actually require the writer to do at least some research.

Avatar of:

Posts: 0

August 24, 2011

Your summation is masterly save in one particular

The unquestioning regurgitation of the line by journalists and science correspond ants.

I think you should include their laziness in that

Avatar of:

Posts: 0

August 24, 2011

"King’s College London psychiatrist Simon Wessely has stopped studying CFS altogether, in favor of conditions linked to war zones, which requires him to visit locales like Iraq and Afghanistan—where he says he feels much safer."  This article is a rework of the Observer article of Sunday 21st August, which is a repeat of the Times article of 29th July, which was a rehash of a piece by Nigel Hawkes in the BMJ (http://www.bmj.com/content/342... where the same sentence was rendered thus: "As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel a lot safer,â€쳌 he says."

Try a quick fact check re this last claim.  Just drop these search terms into Google Advanced Scholar (http://scholar.google.com/adva... vis:CFS, CFS/ME, "Chronic Fatigue Syndrome (any of these words, in title only)2010 - 2011 (year range)(only one year, not ten)S Wessely (Author)I got six papers, how about you?

Avatar of:

Posts: 0

August 24, 2011

Inventing of new illnesses brings a lot of economic benefits for researchers who will endlessly apply for grants as well as for pharma companies who will develop new drugs.  They are going to fight everyone who stands on their way.

Avatar of:

Posts: 0

August 24, 2011

I am so unsurprised by the anger and disgust of people who suffer from chronic fatigue. Of course there will be a number of "chronic fatigue" sufferers who have a major (or even 100%) psychological component to their health issues, but chronic fatigue is a very real physical condition.

No-one who has ever woken day after day for years, utterly wrung out and exhausted, feeling more dead than alive, too mentally confused and physically unco-ordinated to even form form words let alone sentences (even without drinks the night before), nauseated, and distressed, would ever accept that this is a psychological issue. Chronic fatigue in a moderate-to-severe form is a living hell.

Cognitive behaviour therapy has been exposed via meta-analyses to be no better than placebo, and any positive effect disappears soon after leaving the therapist's office. This is a therapeutic "strategy" that should have been discarded long ago, especially since we now have effective, evidence-based strategies to hand that are cheaper to provide, act faster, and are a lot more comfortable for the client.

So chronic fatigue certainly exists as a physical disorder that at this time we do not have any explanation for. We're used to the medical profession crying "psychological" whenever there is something they don't yet understand.

At this stage we can be fairly certain that chronic fatigue is associated with an episode of, or ongoing experience of, a compromised endocrine system.

I suffered from chronic fatigue for years after catastrophic post-surgical complications but now manage it quite well by elevating mitochondrial function via new genetic technology. I now lead an "almost normal" life but just have to be more cognisant than most people in terms of sleep management, or exposing myself to extended high levels of stress.

I can't imagine going back to the hell that my life was like, and although I will never condone violence or threat, I empathise with the extreme distress and even rage of sufferers who are once again being told it's all in their minds.

There are so many important research projects waiting on funding. My question is why a cent of funding is being wasted on those who ignore scientific evidence in favour of their own ignorant bias against people who are suffering. In this case the "loons" are the scientists involved in this third-rate research.

If they want to test their crackpot theories they can come up with their own funds and leave the public purse alone.

Avatar of:

Posts: 0

August 24, 2011

"The Canadian Expert Consensus Panel has published a medical milestone, the first
clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This  definition is clearly a vast improvement over the CDC's 1994 case definition for CFS, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the CDC's 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria."

How, can they possibly recommend exercise for ME/CFS?  Google: Immunological Changes After Both Exercise and Activity in Chronic Fatigue Syndrome

Avatar of:

Posts: 0

August 24, 2011

Haha, this is so funny. I can clearly imagine a discussion between the evil psychologists and their PR-Advisors:

PR-Advisor: "To be honest, it's getting more and more difficult to cover your a**es. You deny important studies that prove that CFS a not a psychological issue. You failed completely with the PACE trials. Almost everybody knows now, that they were manipulated. People begin to understand that noming CFS a psychological illness really is a crime in itself. And Mr. Wessely, your hilarious report "The legend of Camelford" where you tried to cover up a water pollution scandal... Thanks to the internet more and more people don't trust you anymore. We don't know what do do..."

Evil psychologist: "Oh man, yeah you're right. We really screwed things up. We know that people see through our lies now. We even get emails with dead threats."

PR-Advisor: "REALLY???!! Well that is GREAT!"

Evil psychologist: "How is that great? It just shows how angry the patients have become, because we have mistreated them so much."

PR- Advisor: "Yes of course! But if we go to the press, we can generate a picture of you as martyrs who where doing nothing but trying to help. "Death threats" sounds great! People who know little about CFS and your crimes will only see "Death threats" and think "oh these poor good-hearted doctors who seriously try to help are put down for no reason."

Evil psychologist: "That sounds great! Let's do it!"

Avatar of:

Posts: 0

August 24, 2011

I'm quoting a blogpost because it makes all the points. This nutshell I should point out, lacks EVIDENCE which s something I thought Scientists relied on

On Friday 29th July the morning BBC radio news reported that Professor Simon Wessely, seen by many ME/CFS sufferers in a less favourable light than, say, Jason Voorhees, was being interviewed telling the nation about the threats him and his colleagues have allegedly received from ME/CFS sufferers. This was followed up by a couple of articles on the BBC's website.

Then the Observer of Sunday 21st August had essentially the same story, brave researchers stifled by "a campaign of abuse and violence" from ME/CFS militants violently opposed to the notion that their illness is psychological.

Now the first thing that springs to mind is this notion of vicious ME/CFS militants. Remember, this illness is characterised by a lack of energy, as well as cognitive dysfunction yet they are portrayed as "as dangerous and uncompromising as animal rights activists".

Now that's one hell of a claim. So I read on to see details of police investigations and arrests made of these terrorists. Neither the Observer article nor the BBC Website detail any such arrest or indeed any investigation. I did a, brief, Google search and nothing turned up.

I think at this point a bit of clarity is required, because you will find none from the Observer or the BBC. At present the only treatments offered by the NHS in England (Scotland has a separate system) are psychological. Moreover, the only projects currently receiving funding by the Medical Research Council are Psychological. No Biomedial research is being funded.

This is odd by international standards as ME/CFS is accepted to be neurological by, amongst others, the World Health Organisation (ICD G93.3) and the NHS in Scotland. I am not saying an ME sufferer might not require some psychological support, it's a terrible thing to have and to try and cope with, but NO BIOMEDICAL RESEARCH IS BEING FUNDED BY THE MRC.

This classification of MC/CFS as neurological is not some new thing that NICE and NHS in England have yet to catch up on, it has classified that way since 1969, before Dr. Wessely's time at least.

Since 1992, however, diagnostic guidance in England has been that this ailment is purely psychological, which means that the symptoms are not to be "legitimised", i.e. it is all in the sufferer's head and the doctor should not say or do anything that gives the impression that the effects are anything other than psychosomatic and therefore if the patient can be induced to "pull themselves together" then all will be well.

In Scotland they use what is referred to as the "Canadian Criteria" stemming from work that led to an article in the Journal of Internal Medicine and subsequently refined. This considers ME/CFS to be a physiological condition and the psychological treatments used buy the NHS in England to be of limited benefit if not harmful. These criteria were drawn up in 2003, so again this is not some new thing to which the NHS in England has not had time to respond.

This means that, if International opinion is correct, then sufferers in England are not only being treated as if they are, in effect, fantasists, but also the only treatment they are being offered is potentially harmful.

Neither the BBC nor the Observer offer any of this as background, only the image of a few researchers, from the psychiatric point of view, as lone seekers of truth was presented.

The English diagnostic criteria, the Oxford criteria, were born of psychiatry and remain rooted there, and I should explain the conspiracy theory alluded to, incorrectly, by Dr Wessely in the Observer article. 

Wessely explains the theory as a stitch up by drug companies, so the theory can be ridiculed because, if it was then the drug companies would make money from it. The theory is, however, slightly different. If ME/CFS is a psychiatric illness then, in a system of private health insurance, it would be exempt from having to pay for treatment or would have to pay at a lesser rate. Simon Wessely is a key figure in the psychiatric approach to ME/CFS and has spoken at events sponsored by Private Health companies and been an advisor for private health companies.

One of the companies Simon Wessely has had a relationship with, Unum. In its parent country, the United States, Unum has been investigated for having a quota for closing claims with no payment and a former California Insurance Commissioner described them as "an outlaw company. it is a company that for years has operated in an illegal fashion"

Given this and other snippets, and the involvement of Unum in both Labour and Conservative policies for Health and Welfare reform, Simon Wessely's relationship with private health organisations is perceived to be indicative of a motive for keeping ME/CFS classified as a psychiatric illness, thus no payments, rather than a physiological illness, for which treatment would have to be paid for.

It would seem though that Simon Wessely preemptive retaliation has been successful. He is perceived by many now to be the victim of a shadowy cabal of ME/CFS activists. Moreover, instead of journalists focussing on why HE and others are so adamantly opposed to the possibility of ME/CFS having an, internationally accepted, physiological cause, they have to defend themselves against charges of being opposed to the psychological option instead of the situation they really find themselves in, fighting a system that only allows for psychological treatment.

Balance in reporting doesn't necessarily mean you get equal coverage and your P.O.V. is treated as equally valid, it might mean only that claims are verified and facts checked. If crimes had been committed it does not mean a right to have part of the piece say you were justified, but part at least should be devoted to investigating if the crime actually occurred.

Neither Tom Feilden of the BBC nor Robin McKie of The Observer seem to have approached any ME organisation for comment, nor is there any sign of investigating the claims made. Newspapers can get away with being unbalanced, the BBC is supposed to at least provide lip service to balance.

Avatar of:

Posts: 0

August 24, 2011


Reading you blog quote, I am starting to think that the problem is that "Researcher get death threats" will attract more readers than "CFS patients are misunderstood and have a long history of being treated wrong by doctors and society alike and a little minority writes emails with death threats (although we have no proof of that) to researchers who really don't do any research but try to find ways to sell their product called CBT and work together with insurance companies."

The first headline is easier to understand and will attract more readers while the second one is too complicated and would actually require the writer to do at least some research.

Avatar of:

Posts: 0

August 24, 2011

Your summation is masterly save in one particular

The unquestioning regurgitation of the line by journalists and science correspond ants.

I think you should include their laziness in that

Avatar of:

Posts: 0

August 24, 2011

"King’s College London psychiatrist Simon Wessely has stopped studying CFS altogether, in favor of conditions linked to war zones, which requires him to visit locales like Iraq and Afghanistan—where he says he feels much safer."  This article is a rework of the Observer article of Sunday 21st August, which is a repeat of the Times article of 29th July, which was a rehash of a piece by Nigel Hawkes in the BMJ (http://www.bmj.com/content/342... where the same sentence was rendered thus: "As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel a lot safer,â€쳌 he says."

Try a quick fact check re this last claim.  Just drop these search terms into Google Advanced Scholar (http://scholar.google.com/adva... vis:CFS, CFS/ME, "Chronic Fatigue Syndrome (any of these words, in title only)2010 - 2011 (year range)(only one year, not ten)S Wessely (Author)I got six papers, how about you?

Avatar of:

Posts: 0

August 24, 2011

Death threats from unstable individuals does sorta lend credence to the idea that there's something wrong in the heads of the people with this problem.

Avatar of: Life Science Dude

Anonymous

August 24, 2011

Death threats from unstable individuals does sorta lend credence to the idea that there's something wrong in the heads of the people with this problem.

Avatar of: SVB

Anonymous

August 24, 2011

Inventing of new illnesses brings a lot of economic benefits for researchers who will endlessly apply for grants as well as for pharma companies who will develop new drugs.  They are going to fight everyone who stands on their way.

Avatar of: Christine Sutherland

Anonymous

August 24, 2011

I am so unsurprised by the anger and disgust of people who suffer from chronic fatigue. Of course there will be a number of "chronic fatigue" sufferers who have a major (or even 100%) psychological component to their health issues, but chronic fatigue is a very real physical condition.

No-one who has ever woken day after day for years, utterly wrung out and exhausted, feeling more dead than alive, too mentally confused and physically unco-ordinated to even form form words let alone sentences (even without drinks the night before), nauseated, and distressed, would ever accept that this is a psychological issue. Chronic fatigue in a moderate-to-severe form is a living hell.

Cognitive behaviour therapy has been exposed via meta-analyses to be no better than placebo, and any positive effect disappears soon after leaving the therapist's office. This is a therapeutic "strategy" that should have been discarded long ago, especially since we now have effective, evidence-based strategies to hand that are cheaper to provide, act faster, and are a lot more comfortable for the client.

So chronic fatigue certainly exists as a physical disorder that at this time we do not have any explanation for. We're used to the medical profession crying "psychological" whenever there is something they don't yet understand.

At this stage we can be fairly certain that chronic fatigue is associated with an episode of, or ongoing experience of, a compromised endocrine system.

I suffered from chronic fatigue for years after catastrophic post-surgical complications but now manage it quite well by elevating mitochondrial function via new genetic technology. I now lead an "almost normal" life but just have to be more cognisant than most people in terms of sleep management, or exposing myself to extended high levels of stress.

I can't imagine going back to the hell that my life was like, and although I will never condone violence or threat, I empathise with the extreme distress and even rage of sufferers who are once again being told it's all in their minds.

There are so many important research projects waiting on funding. My question is why a cent of funding is being wasted on those who ignore scientific evidence in favour of their own ignorant bias against people who are suffering. In this case the "loons" are the scientists involved in this third-rate research.

If they want to test their crackpot theories they can come up with their own funds and leave the public purse alone.

Avatar of: Huyie

Huyie

Posts: 3

August 24, 2011

"The Canadian Expert Consensus Panel has published a medical milestone, the first
clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This  definition is clearly a vast improvement over the CDC's 1994 case definition for CFS, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the CDC's 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria."

How, can they possibly recommend exercise for ME/CFS?  Google: Immunological Changes After Both Exercise and Activity in Chronic Fatigue Syndrome

Avatar of: StephanCFS

Anonymous

August 24, 2011

Haha, this is so funny. I can clearly imagine a discussion between the evil psychologists and their PR-Advisors:

PR-Advisor: "To be honest, it's getting more and more difficult to cover your a**es. You deny important studies that prove that CFS a not a psychological issue. You failed completely with the PACE trials. Almost everybody knows now, that they were manipulated. People begin to understand that noming CFS a psychological illness really is a crime in itself. And Mr. Wessely, your hilarious report "The legend of Camelford" where you tried to cover up a water pollution scandal... Thanks to the internet more and more people don't trust you anymore. We don't know what do do..."

Evil psychologist: "Oh man, yeah you're right. We really screwed things up. We know that people see through our lies now. We even get emails with dead threats."

PR-Advisor: "REALLY???!! Well that is GREAT!"

Evil psychologist: "How is that great? It just shows how angry the patients have become, because we have mistreated them so much."

PR- Advisor: "Yes of course! But if we go to the press, we can generate a picture of you as martyrs who where doing nothing but trying to help. "Death threats" sounds great! People who know little about CFS and your crimes will only see "Death threats" and think "oh these poor good-hearted doctors who seriously try to help are put down for no reason."

Evil psychologist: "That sounds great! Let's do it!"

Avatar of: Bill Wallace

Anonymous

August 24, 2011

I'm quoting a blogpost because it makes all the points. This nutshell I should point out, lacks EVIDENCE which s something I thought Scientists relied on

On Friday 29th July the morning BBC radio news reported that Professor Simon Wessely, seen by many ME/CFS sufferers in a less favourable light than, say, Jason Voorhees, was being interviewed telling the nation about the threats him and his colleagues have allegedly received from ME/CFS sufferers. This was followed up by a couple of articles on the BBC's website.

Then the Observer of Sunday 21st August had essentially the same story, brave researchers stifled by "a campaign of abuse and violence" from ME/CFS militants violently opposed to the notion that their illness is psychological.

Now the first thing that springs to mind is this notion of vicious ME/CFS militants. Remember, this illness is characterised by a lack of energy, as well as cognitive dysfunction yet they are portrayed as "as dangerous and uncompromising as animal rights activists".

Now that's one hell of a claim. So I read on to see details of police investigations and arrests made of these terrorists. Neither the Observer article nor the BBC Website detail any such arrest or indeed any investigation. I did a, brief, Google search and nothing turned up.

I think at this point a bit of clarity is required, because you will find none from the Observer or the BBC. At present the only treatments offered by the NHS in England (Scotland has a separate system) are psychological. Moreover, the only projects currently receiving funding by the Medical Research Council are Psychological. No Biomedial research is being funded.

This is odd by international standards as ME/CFS is accepted to be neurological by, amongst others, the World Health Organisation (ICD G93.3) and the NHS in Scotland. I am not saying an ME sufferer might not require some psychological support, it's a terrible thing to have and to try and cope with, but NO BIOMEDICAL RESEARCH IS BEING FUNDED BY THE MRC.

This classification of MC/CFS as neurological is not some new thing that NICE and NHS in England have yet to catch up on, it has classified that way since 1969, before Dr. Wessely's time at least.

Since 1992, however, diagnostic guidance in England has been that this ailment is purely psychological, which means that the symptoms are not to be "legitimised", i.e. it is all in the sufferer's head and the doctor should not say or do anything that gives the impression that the effects are anything other than psychosomatic and therefore if the patient can be induced to "pull themselves together" then all will be well.

In Scotland they use what is referred to as the "Canadian Criteria" stemming from work that led to an article in the Journal of Internal Medicine and subsequently refined. This considers ME/CFS to be a physiological condition and the psychological treatments used buy the NHS in England to be of limited benefit if not harmful. These criteria were drawn up in 2003, so again this is not some new thing to which the NHS in England has not had time to respond.

This means that, if International opinion is correct, then sufferers in England are not only being treated as if they are, in effect, fantasists, but also the only treatment they are being offered is potentially harmful.

Neither the BBC nor the Observer offer any of this as background, only the image of a few researchers, from the psychiatric point of view, as lone seekers of truth was presented.

The English diagnostic criteria, the Oxford criteria, were born of psychiatry and remain rooted there, and I should explain the conspiracy theory alluded to, incorrectly, by Dr Wessely in the Observer article. 

Wessely explains the theory as a stitch up by drug companies, so the theory can be ridiculed because, if it was then the drug companies would make money from it. The theory is, however, slightly different. If ME/CFS is a psychiatric illness then, in a system of private health insurance, it would be exempt from having to pay for treatment or would have to pay at a lesser rate. Simon Wessely is a key figure in the psychiatric approach to ME/CFS and has spoken at events sponsored by Private Health companies and been an advisor for private health companies.

One of the companies Simon Wessely has had a relationship with, Unum. In its parent country, the United States, Unum has been investigated for having a quota for closing claims with no payment and a former California Insurance Commissioner described them as "an outlaw company. it is a company that for years has operated in an illegal fashion"

Given this and other snippets, and the involvement of Unum in both Labour and Conservative policies for Health and Welfare reform, Simon Wessely's relationship with private health organisations is perceived to be indicative of a motive for keeping ME/CFS classified as a psychiatric illness, thus no payments, rather than a physiological illness, for which treatment would have to be paid for.

It would seem though that Simon Wessely preemptive retaliation has been successful. He is perceived by many now to be the victim of a shadowy cabal of ME/CFS activists. Moreover, instead of journalists focussing on why HE and others are so adamantly opposed to the possibility of ME/CFS having an, internationally accepted, physiological cause, they have to defend themselves against charges of being opposed to the psychological option instead of the situation they really find themselves in, fighting a system that only allows for psychological treatment.

Balance in reporting doesn't necessarily mean you get equal coverage and your P.O.V. is treated as equally valid, it might mean only that claims are verified and facts checked. If crimes had been committed it does not mean a right to have part of the piece say you were justified, but part at least should be devoted to investigating if the crime actually occurred.

Neither Tom Feilden of the BBC nor Robin McKie of The Observer seem to have approached any ME organisation for comment, nor is there any sign of investigating the claims made. Newspapers can get away with being unbalanced, the BBC is supposed to at least provide lip service to balance.

Avatar of: StephanCFS

Anonymous

August 24, 2011


Reading you blog quote, I am starting to think that the problem is that "Researcher get death threats" will attract more readers than "CFS patients are misunderstood and have a long history of being treated wrong by doctors and society alike and a little minority writes emails with death threats (although we have no proof of that) to researchers who really don't do any research but try to find ways to sell their product called CBT and work together with insurance companies."

The first headline is easier to understand and will attract more readers while the second one is too complicated and would actually require the writer to do at least some research.

Avatar of: Bill Wallace

Anonymous

August 24, 2011

Your summation is masterly save in one particular

The unquestioning regurgitation of the line by journalists and science correspond ants.

I think you should include their laziness in that

Avatar of: Jane Clout

Anonymous

August 24, 2011

"King’s College London psychiatrist Simon Wessely has stopped studying CFS altogether, in favor of conditions linked to war zones, which requires him to visit locales like Iraq and Afghanistan—where he says he feels much safer."  This article is a rework of the Observer article of Sunday 21st August, which is a repeat of the Times article of 29th July, which was a rehash of a piece by Nigel Hawkes in the BMJ (http://www.bmj.com/content/342... where the same sentence was rendered thus: "As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel a lot safer,â€쳌 he says."

Try a quick fact check re this last claim.  Just drop these search terms into Google Advanced Scholar (http://scholar.google.com/adva... vis:CFS, CFS/ME, "Chronic Fatigue Syndrome (any of these words, in title only)2010 - 2011 (year range)(only one year, not ten)S Wessely (Author)I got six papers, how about you?

Avatar of: One layman opinion

Anonymous

August 25, 2011

When one starts researching animal viruses and retroviruses, and their presence in vaccines due to the culturing process, along with the new technology that can now find the viruses which was not previously available, such as porcine wasting virus or SV40 (brain tumors), and puts it together with XMRV virus and its possible connection to things like prostate cancer and chronic fatigue, and XMRV/chronic fatigue possibly having a standing in the family histories of children with autism, one can see how at any cost institutions will try to keep chronic fatigue in the realm of psychology, where it is easy to blame the victim.  It's another back door attack on public knowledge of manmade diseases.  For instance, how many in the public realm read of the NIH announcement the friday before July 4th that about 55% of autism is environmental?  How long will the ever-expanding DSM under the weight of it's burgeoning reputation as the front group for the multi-billion dollar pharma/psych partnerships be able to maintain it's grip on
autism and chronic fatigue as purely psychological?  Especially in the face of the sound science everyone knows is out there i.e. science not compromised by patent rights.
partnership retain  

Avatar of: Valentijn

Anonymous

August 25, 2011

True, but ME/CFS has very little to do with "chronic fatigue", aside from its unfortunate name.  The new International Consensus Criteria require that there be Post-Exertional Neuroimmune Exhaustion, which is very distinct from "fatigue" that might be experienced with purely psychological dysfunctions. 

Basically PENE involves a lot of muscle pain, muscle weakness, and a few days flu symptoms and severe cognitive dysfunction after exercise.  Those with pure depression and no PENE (therefore no ME/CFS), on the other hand, will often feel better after exercise due to the endorphins.

Avatar of: Valentijn

Anonymous

August 25, 2011

These psychologists are actively trying to stifle research in the UK that focuses on biomedical signs and causes of ME/CFS.  If they were to leave the field, the vast majority of us would be thrilled.

Avatar of: Valentijn

Anonymous

August 25, 2011

The problem is that these researchers (who have offered no evidence of their claims of threat or violence) are doing the wrong research and actively impeding the correct research and appropriate medical care of people with ME/CFS.

ME/CFS is widely known to be a physical condition, yet these psychologists remain blind to the thousands of peer-reviewed published articles that document it.  They directly influence the treatment of ME/CFS in the UK, and specifically advocate that GPs not run tests to find underlying physical causes, on the excuse that running tests would reinforce a so-called false illness belief.

Avatar of: Bill Wallace

Anonymous

August 25, 2011

Life Science Dude

It might, for the individuals concerned and no one else.

But if you can find actual details of these threats and harassment then you are doing better than I.

Anecdotally (I stress anecdotally) I have heard that Freedom of Onformation requests into things like funding of research, by a large, staid sufferer's group, was being cited as harassment.

I come back to this, this story is being unthinkingly republished in an act of 'churnalsm' with no checking of facts.

In fact, if the ME organisations are correct, then surrely the bigger story is why the NHS in England and the treatment advisory body NICE are opposite to the rest of the world, including NHS Scotland and SIGN

Avatar of: EllenGB

Anonymous

August 25, 2011

But how do you know they had ME? I know some of the tormentors and they don't. They just hijacked the subject for their own, dubious ends. It's not just the adherents of the psychogenic theories that became targets.  So did patients, group leaders and researchers with more balanced views. This article says more about lazy journalism than people with ME.

Avatar of:

Posts: 0

August 25, 2011

The problem is that these researchers (who have offered no evidence of their claims of threat or violence) are doing the wrong research and actively impeding the correct research and appropriate medical care of people with ME/CFS.

ME/CFS is widely known to be a physical condition, yet these psychologists remain blind to the thousands of peer-reviewed published articles that document it.  They directly influence the treatment of ME/CFS in the UK, and specifically advocate that GPs not run tests to find underlying physical causes, on the excuse that running tests would reinforce a so-called false illness belief.

Avatar of:

Posts: 0

August 25, 2011

Life Science Dude

It might, for the individuals concerned and no one else.

But if you can find actual details of these threats and harassment then you are doing better than I.

Anecdotally (I stress anecdotally) I have heard that Freedom of Onformation requests into things like funding of research, by a large, staid sufferer's group, was being cited as harassment.

I come back to this, this story is being unthinkingly republished in an act of 'churnalsm' with no checking of facts.

In fact, if the ME organisations are correct, then surrely the bigger story is why the NHS in England and the treatment advisory body NICE are opposite to the rest of the world, including NHS Scotland and SIGN

Avatar of:

Posts: 0

August 25, 2011

But how do you know they had ME? I know some of the tormentors and they don't. They just hijacked the subject for their own, dubious ends. It's not just the adherents of the psychogenic theories that became targets.  So did patients, group leaders and researchers with more balanced views. This article says more about lazy journalism than people with ME.

Avatar of:

Posts: 0

August 25, 2011

True, but ME/CFS has very little to do with "chronic fatigue", aside from its unfortunate name.  The new International Consensus Criteria require that there be Post-Exertional Neuroimmune Exhaustion, which is very distinct from "fatigue" that might be experienced with purely psychological dysfunctions. 

Basically PENE involves a lot of muscle pain, muscle weakness, and a few days flu symptoms and severe cognitive dysfunction after exercise.  Those with pure depression and no PENE (therefore no ME/CFS), on the other hand, will often feel better after exercise due to the endorphins.

Avatar of:

Posts: 0

August 25, 2011

These psychologists are actively trying to stifle research in the UK that focuses on biomedical signs and causes of ME/CFS.  If they were to leave the field, the vast majority of us would be thrilled.

Avatar of:

Posts: 0

August 25, 2011

When one starts researching animal viruses and retroviruses, and their presence in vaccines due to the culturing process, along with the new technology that can now find the viruses which was not previously available, such as porcine wasting virus or SV40 (brain tumors), and puts it together with XMRV virus and its possible connection to things like prostate cancer and chronic fatigue, and XMRV/chronic fatigue possibly having a standing in the family histories of children with autism, one can see how at any cost institutions will try to keep chronic fatigue in the realm of psychology, where it is easy to blame the victim.  It's another back door attack on public knowledge of manmade diseases.  For instance, how many in the public realm read of the NIH announcement the friday before July 4th that about 55% of autism is environmental?  How long will the ever-expanding DSM under the weight of it's burgeoning reputation as the front group for the multi-billion dollar pharma/psych partnerships be able to maintain it's grip on
autism and chronic fatigue as purely psychological?  Especially in the face of the sound science everyone knows is out there i.e. science not compromised by patent rights.
partnership retain  

Avatar of:

Posts: 0

August 25, 2011

True, but ME/CFS has very little to do with "chronic fatigue", aside from its unfortunate name.  The new International Consensus Criteria require that there be Post-Exertional Neuroimmune Exhaustion, which is very distinct from "fatigue" that might be experienced with purely psychological dysfunctions. 

Basically PENE involves a lot of muscle pain, muscle weakness, and a few days flu symptoms and severe cognitive dysfunction after exercise.  Those with pure depression and no PENE (therefore no ME/CFS), on the other hand, will often feel better after exercise due to the endorphins.

Avatar of:

Posts: 0

August 25, 2011

These psychologists are actively trying to stifle research in the UK that focuses on biomedical signs and causes of ME/CFS.  If they were to leave the field, the vast majority of us would be thrilled.

Avatar of:

Posts: 0

August 25, 2011

The problem is that these researchers (who have offered no evidence of their claims of threat or violence) are doing the wrong research and actively impeding the correct research and appropriate medical care of people with ME/CFS.

ME/CFS is widely known to be a physical condition, yet these psychologists remain blind to the thousands of peer-reviewed published articles that document it.  They directly influence the treatment of ME/CFS in the UK, and specifically advocate that GPs not run tests to find underlying physical causes, on the excuse that running tests would reinforce a so-called false illness belief.

Avatar of:

Posts: 0

August 25, 2011

When one starts researching animal viruses and retroviruses, and their presence in vaccines due to the culturing process, along with the new technology that can now find the viruses which was not previously available, such as porcine wasting virus or SV40 (brain tumors), and puts it together with XMRV virus and its possible connection to things like prostate cancer and chronic fatigue, and XMRV/chronic fatigue possibly having a standing in the family histories of children with autism, one can see how at any cost institutions will try to keep chronic fatigue in the realm of psychology, where it is easy to blame the victim.  It's another back door attack on public knowledge of manmade diseases.  For instance, how many in the public realm read of the NIH announcement the friday before July 4th that about 55% of autism is environmental?  How long will the ever-expanding DSM under the weight of it's burgeoning reputation as the front group for the multi-billion dollar pharma/psych partnerships be able to maintain it's grip on
autism and chronic fatigue as purely psychological?  Especially in the face of the sound science everyone knows is out there i.e. science not compromised by patent rights.
partnership retain  

Avatar of:

Posts: 0

August 25, 2011

Life Science Dude

It might, for the individuals concerned and no one else.

But if you can find actual details of these threats and harassment then you are doing better than I.

Anecdotally (I stress anecdotally) I have heard that Freedom of Onformation requests into things like funding of research, by a large, staid sufferer's group, was being cited as harassment.

I come back to this, this story is being unthinkingly republished in an act of 'churnalsm' with no checking of facts.

In fact, if the ME organisations are correct, then surrely the bigger story is why the NHS in England and the treatment advisory body NICE are opposite to the rest of the world, including NHS Scotland and SIGN

Avatar of:

Posts: 0

August 25, 2011

But how do you know they had ME? I know some of the tormentors and they don't. They just hijacked the subject for their own, dubious ends. It's not just the adherents of the psychogenic theories that became targets.  So did patients, group leaders and researchers with more balanced views. This article says more about lazy journalism than people with ME.

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