Chronic fatigue syndrome researchers face death threats from militants

[salvorhardin]

Is XMRV the new Thimerosal? Apparently there is a small, but very vocal community of people who will go so far as death threats to defend their belief that the XMRV virus causes Chronic Fatigue Syndrome. It's somewhat amusing to picture listless, depressed CFS sufferers threatening anybody's life but it's easy to imagine this playing out the same as the disproven link between vaccines and autism.

Chronic fatigue syndrome – also known as myalgic encephalomyelitis (ME) – is common and debilitating. A recent BMJ (formerly the British Medical Journal) feature suggested that as many as one in 250 people in the UK suffers from it. Patients are sometimes unable to move and become bedridden, occasionally having to be fed through a tube. For more than 20 years, scientists have struggled to find the cause, with some pointing to physiological reasons, in particular viral infections, while others have argued that psychological problems are involved.

It is the latter group that has become the subject of extremists' attacks. The antagonists hate any suggestion of a psychological component and insist it is due to external causes, in particular viruses. In the case of McClure, her "crime" was to publish a paper indicating that early studies linking the syndrome to the virus XMRV were wrong and the result of laboratory contamination. So furious was the reaction that she had to withdraw from a US collaboration because she was warned she might be shot.

...

"The tragedy is that this tiny group of activists are driving young scientists from working in the field," said Sharpe. "In the end, these campaigns are only going to harm patients."

This point was backed by Fiona Fox, director of the Science Media Centre. "Using threats and intimidation to prevent scientists pursuing specific avenues of research or speaking out is damaging not just science. It harms society," she said.

Link: http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

[Manifestor_of_Light]

1. I think it's a catchall diagnosis.

From what I have read about people with glandular problems (a few million of us), CFS and fibromyalgia are catchall diagnoses when the doc doesn't know or doesn't want to find out what is wrong with the person.

[spooniebill]

2. Nothing like the whole story

I put this on breaking news as well, but I think it needs to go here too

From my blog I walked with a Spoonie

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.