In support of XMRV researchers

Chronic fatigue syndrome (CFS) is a mysterious condition. Its cause, diagnosis, even its name have long been sources of controversy, and it appears that this controversy has recently reached new heights, with some individuals issuing a series of threats to a subset of researchers in the field, as reported in a recent article in the Observer.

This particular episode of the conflict involves a paper published in PLoS ONE in Jan. 2010, so we feel at this point it is appropriate for us to comment and express our disapproval of this behavior.

The PLoS ONE study was the first response to an Oct. 2009 article in the journal Science that reported a correlation between CFS and a virus called XMRV. Contrary to the original finding, the PLoS ONE paper reported no evidence of XMRV in CFS patients, and a number of similar studies followed on its heels (see examples here and here), prompting Science to issue an expression of concern.

These later reports generated a very negative response from some individuals at the time of publication – a number of comments on the PLoS ONE paper had to be removed from the website because of inappropriate content – and it appears that the situation has not improved. According to the Observer article, “the militants are now considered to be as dangerous and uncompromising as animal rights extremists.” The article goes on to describe various instances of physical and verbal abuses, including daily death threats addressed to the lead author of the PLoS ONE paper, Professor Myra McClure.

As the debate about CFS continues, we at PLoS would like to take the opportunity to express support for our authors and for their right, and of course everyone else’s right, to enjoy the freedom to debate and investigate scientific topics openly, constructively, and without fear. This situation has emphasized, to us, the importance of civilized discourse in these matters. Those who threaten researchers’ safety above all do themselves a major disservice by dissuading other researchers from entering the field, chasing away the very people who may be able to help them. It is bad both for science and for patients, and should absolutely not be tolerated.

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60 Responses to In support of XMRV researchers

  1. DBLewis says:

    Thank you -
    many of us don’t support the more militant CFS sufferers in their use of bully tactics, even when we understand the frustration and feelings of abandonment by the medical community that drives them. Hopefully the upcoming Lipkin study will resolve this issue one way or another and we all can move on to the next steps in helping patients recover.

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  2. Kathryn Stephens says:

    I wish you had found it within yourselves to give “the other side of the story” as referenced in the Comments to these accusations in the Observer.

    The majority of the 17M patients worldwide do not condone any attacks on researchers. We know it is counterproductive and not in our best interests. We do not know who these so-called patients are, and we have seen no proof of any threats, nor have police reports been filed.

    If PloSOne is not aware of the decades long efforts to sweep serious neuroimmune diseases under the rug, I highly suggest you all read Osler’s Web by Hilary Johnson, and then contact Dr. David Bell, Dr. Nancy Klimas, and Dr. Jose Montoya for further comments.

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  3. Holly says:

    What I find sad is that these accusations have been greatly exaggerated. Wessely has a book out. What more is there to say?

    What I find sadder is that respectable news papers have inaccurate articles and have not represented the real victims of this debacle – the people who have been suffering from this illness for many years and how been overlooked!

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  4. PLoS ONE Editors says:

    We by no means intend to dismiss the suffering of those afflicted with CFS, nor do we intend to imply that all of these patients condone attacks on researchers.

    Rather, this post is meant to express the opinion of those of us at PLoS ONE that such behavior, even if it is only coming from a small portion of the community, is not acceptable.

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  5. Holly says:

    And you don’t think this information is a little coincidental since he has a book coming out?

    I know many, many sufferers and not one would behave in this manner. Telling someone they will pay for what they have done is not the same as issuing a death threat.

    I think Simon Wessely will have to answer to someone one day as to why the evidence that ME is biomedical, available since 1956 was ignored when he started treating it with CBT etc and was fundamental in getting the disease downgraded from Neurological and his disgusting comments about Patients, and his disgusting treatment of Patients which can be seen by all on you tube.

    I don’t believe there were any such threats – this Man has an enormous ego and that’s it.

    McClures study was never going to be positive. How could it be when XMRV takes so long to find muted by Judy Mikovits and the McClure study takes five minutes?

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  6. Brain says:

    Naturally any right minded person would condemn any illegal actions by anyone and so do I. Unfortunately there has been no evidence put into the public domain that any person has at any time threatened anyone. It is at this time only a tabloid story and even if true not about research or ME.

    The paper from Myra McClure was however not particularly a great effort shall we say. Firstly, the cohort of that paper were fatigued people, not people with the neurological disease ME. Secondly, the authors failed to establish the diagnostic sensitivity of the PCR assays used. No PCR assay would ever be liscenced without proving its ability to detect a target in the blood of an infected person. This is what patients rightly object to.

    I would be interested in what PLoSONE have to say on why they allowed such a paper to be published?

    Thank you.

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  7. rene says:

    I am so disgusted a paper of your quality has taken a ne sided view.those so called death threats probably cam from either a very mistreated patient or a family member of one who has suffered so much or even commited suicide
    I know first hand of this because my mom couldn’t stand the illness ans treatment by these people any longer. – myself hsve been mistreated for. 24 years. According to wessely we don’t deserve a voice just because we say he is wrong. There has been so much real science published this ast year poor ols simon but realise we know he is firing blanks at us. McClure did get caught up in it all but she should have made sure the mike was turned of before she made snide comments in the corridor of one of the xmrv webcast meeting. Look at the science of ME look at the funding and lpok at the appauling way we have been treated.

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  8. Dr. Gausman says:

    Is this not a science publication? May I inquire why you saw fit to publish this tabloid nonsense? This has nothing to do with science and I really cannot see why you would regurgitate it.

    Although I am not a sufferer, I have to say that I find the whole post deeply patronising; as if you are berating the entire community of sufferers. Does it really need to be mentioned that you find this behaviour unacceptable? Does it not go without saying?

    Let’s get back to the science, please, and leave the gossip for the undergraduates; they have more time on their hands.

    Incidentally, do you remember how aggressively gays with HIV fought for their human rights during the early days of the AIDS epidemic? They too struggled to be heard. The downtrodden can only take so much, methinks.

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  9. Angela Kennedy says:

    As a social sciences lecturer and researcher, and parent of a woman given an ME/CFS diagnosis, who submitted, through your comments pages, a legitimate, academic and scientifically-based critique of the PlosOne paper in 2010, based on the issue of inappropriate cohorts, I fear that the PlosOne team may have found themselves unwittingly supporting an unethical, prejudicial, and unscientific campaign against patients and their supporters.

    There has recently been a sustained and ongoing negative PR media campaign (going on for about two months now) claiming ME/CFS sufferers and supporters are criminally harassing researchers. There are key problems with these articles/radio programmes:

    1. The allegations themselves are unsafe. For example, an anonymous comment that “you will all pay” is deemed a ‘death threat’, when no threat is actually made, and the comment appears to denote instead a prediction of being accountable. Ironically, David Cameron used the phrase “you will pay” towards rioters recently, without it being deemed a ‘death threat’.

    2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.) as ‘malicious harassment’, or ‘abuse’ or ‘intimidation’. Legitimate actions are juxtaposed with alleged acts of criminal harassment to construct non- criminal parties as harassers.

    3. 3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed ‘extremist’, even ‘criminal‘, but no chance is given to such objectors to express their (reasonable) positions.

    There are good, rational, scientific reasons why patients and their supporters object to psychogenic explanations of ME/CFS. Of particular relevance to the second issue, XMRV, patients’ reasonable objections to the behaviour of certain scientists around this can be summed up in this comment by an ME/CFS sufferer and advocate, Khaly Castle:

    “Patients are not pushing for a favorite pathogen. Patients are pushing for real science to occur and to take its course before the door gets slammed on ANY potential avenue of study. Patients are not stupid and are tired of being treated as such. Patients are particularly irked that they point out the discrepancies in scientists’ and government’s claims, and said scientists and government continue to push the mistruths forward as if by saying it loud enough and long enough, it will be true.”

    Patients and their supporters have had to watch in horror while bad faith abounds in this area, false claims are made, and they are attacked mercilessly, on blogs,, ‘scientific’ and ‘skeptic’ forums, in newspapers and scientific/medical journals, as irrational recalcitrants, just for daring to insist on scientific principle being adhered to. And these attacks are from people claiming scientific authority.

    While I condemn any ACTUAL harassment, it is ethically abhorrent that people have falsely conflated legitimate, non-criminal activities by patients and supporters with alleged criminal or ‘malicious’ harassment, in order to deny them the opportunity to “enjoy the freedom to debate and investigate scientific topics openly, constructively, and without fear” (your words). Yes – this laudable aim should apply to lay people and other academics as much as scientists, surely?

    If you find yourselves sceptical of my assertions above, I am more than happy to present you with copious supporting evidence, from the medical and lay press, over the past two months.

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  10. All my friends with M.E / CFS are some of the nicest people I have ever met.

    I think most are just concerned that all the reports on M.E / CFS Patients being abusive to scientists will label all patients as bad, when maybe only a few 100 out of 20 million are acting in a unkind way.

    news on XMRV M.E / CFS please see my twitter page.

    https://mobile.twitter.com/xmrvpositive_uk

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  11. I’m sure there are a couple of more militant ME patients. I attended a couple of APPG (All-Party Parliamentary Group) meetings in the House of Commons, and a few of them caused such a ruckus that the Countess of Mar walked out. But the other 239,998 sufferers in the country are too ill to put up much of a fight. I’ve had the D/Disease only 16 years and still have to spend half my life on my back. Realistically, though, the story is over, whatever the Wessely School thinks. ME has always been caused by a virus; this was narrowed down to a retrovirus in 1984 by Dr Paul Cheney, confirmed in 1991 by Elaine DeFreitas, then detailed and cultivated by Judy Mikovits of the WPI (Whittemore Peterson Institute) almost 2 years ago. Now that the WPI has opened a proper Treatment Clinic, they are treating ME patients with appropriate antivirals, antiretrovirals and immune modulators – and getting people back to normal, back to work, back to school. Things that Wesseley’s “rehabilitation” never could. Or did.

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  12. sarah says:

    Hi XMRV Positive UK, I really doubt it’s as many as a few 100 that are being abusive to XMRV researchers, it’s probably just a handful.

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  13. Justin Reilly, esq. says:

    I was one of the people who attempted to post comments to the PLoSOne study by McClure and Wessely. At least a couple of my comments were not posted (and I was not notified). One simply said I agreed with Angela Kennedy’s comment which stuck to the science. Another stated facts and fact-based opinions of Prof. Wessely- when I contacted your site, I was admonished that I was saying negative things about Wessely and that I had to stick strictly to the science of the published paper.

    Now I see you are publishing your own opinions and opinions about ME sufferers which are not entirely grounded in fact since Wessely, as usual distorts and misrepresents.

    Please read Prof. Hooper’s excellent piece on this current campaign by Wessely:
    http://www.meactionuk.org.uk/Response-to-Observer-article.htm

    In Prof. Hooper’s letter, there are a few of the many quotes Prof. Wessely explicitly insisting that ME is “a myth”, “just a belief one has a disease” etc.

    Here are a couple more of the inexhaustable supply of abusive and anti-science quotes by Wessely and his close colleagues:

    “medically unexplained symptoms” (referred to as MUS):

    · “….MUS. This term is now used in preference to ‘somatisation’…The medical specialities employ shorthand descriptions for particular clusters of MUS, including irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome” (L. Page, S. Wessely, JRSM 2003:96:223-227).

    “somatisation”:

    · in relation to ME/CFS patients’ correct belief that there is viral involvement and Wessely’s chapter “Viruses and fatigue: the current status of the chronic fatigue syndrome” in “Psychiatry and Biological Factors” edited by Kurstak E, New York, Plenum, 1991, Wessely’s colleagues emphasise that “Wessely sees viral attribution as somatisation par excellence” (Helen Cope, Anthony David, Anthony Mann. Journal of Psychosomatic Research 1994:38:2:89-98).

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  14. Anne Boyd says:

    Between the “Wessely School” and its chokehold on ME treatment policy in the UK, and that small group of patients that will angrily insist that XMRV is the Only True Cause of ME/CFS no matter what the science ultimately shows … I don’t see any side to root for.

    That is not a debate with two legitimate sides; it is a debate with two illegitimate sides, one of which happens to have power, prestige, influence, and an uncritical press megaphone – but NOT a strong body of evidence to back up its theories, even after twenty+ years of efforts to prove that ME is the result of psychological problems. The other side in this snipefest quite rightly claims it has been repeatedly stigmatized, marginalized, and abused by the medical establishment in the UK; but has unluckily chosen XMRV as the hill that they will die upon in the fight for recognition of their disease and some hope for legitimate, effective treatments. I find one side considerably easier to sympathize with than the other, even though I think they’re wrong.

    I don’t see that the UK press has exerted itself one iota to critically examine the claims of this small group of researchers that they actually experience legitimate and credible “threats,” beyond nasty emails. I further don’t see that PLoS One has done any due diligence in examining and verifying these claims of “extreme, militant” behavior before angrily denouncing the actions alleged.

    XMRV or no XMRV, the actions of the “Wessely School” in stifling legitimate debate over the biological manifestations of ME, and dissent over what treatments for the condition are appropriate, have not lived up to the standards that science ought to set for itself.

    This is an intensely politicized issue in the UK, because the availability of medical treatment and disability payments hang in the balance; all the disabled in the UK, not just those disabled by ME, face societal hysteria (whipped up by the tabloid press) about “benefit cheats,” and increasingly Draconian measures designed to force disabled people back into the workplace willy-nilly.

    Forget XMRV for one moment. There is an ever-growing body of scientific evidence that the disease mis-named “CFS” in the US:

    “is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology. ”

    http://www.meassociation.org.uk/?p=7173

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

    In the face of this growing body of evidence, Wessely’s school in the UK continues to promote to their opinion that ME is a disease of “false illness beliefs;” of patients who, while they *may* have had some initial “real” illness, remain ill and debilitated (1) because they have developed a pathological “fear of movement,” which they must be counselled out of, and (2) because they are deconditioned – i.e., out of shape.

    Remember that this is a country where the National Health Service dictates treatment guidelines, and that those guidelines have been developed in response to the theory that ME is caused by deconditioning and fear of movement, and you may begin to comprehend why patients are rightfully angry.

    XMRV or no XMRV, this is a very large ox that stands to be gored as the understanding of the pathology of the disease grows, and more innovative research is conducted. The British press is strangely unwilling to take notice of this growing body of international research into the realities of a complex, multi-systemic disease – instead providing a willing megaphone for Simon Wessely’s viewpoint, and his claims that his repeated efforts to demonstrate the abnormal psychology responsible for the disease are “scientific” work designed to help patients.

    That some of these researchers took a few minutes off from their psychological investigations to look into XMRV claims – and did some pretty lightweight, quick-and-dirty studies early on, and wasted no time overstating the conclusiveness of this early work and pooh-poohing a claim that in fact needed thorough and rigorous examination – did nothing to create an impression that they were acting in good faith to see whether the XMRV theory held weight. Other, more carefully conducted studies took much longer to complete, and also had more credibility in the scientific community because they came from researchers without a pre-established bias against biological or viral theories of ME causation.

    Everyone should rightly deplore attacks on science and politically-motivated attempts to stifle open scientific debate. Those who care about the scientific enterprise, unfortunately, can’t afford to turn a blind eye to the political atmosphere in which science is conducted. And we need only look to history to see what the actual effects on scientific progress usually are when “psychological” explanations of organic disease are mobilized in order to support a particular set of policy decisions.

    Some have forgotten that “psychological” or “psychosocial” explanations were once put forward for AIDS as well – and a few outliers still cling to that view, decades later. It seems like rank nonsense now that it was ever proposed, for instance, that the “stress of being gay” or poor lifestyle choices caused AIDS; but we are still having the same arguments about ME after decades, instead of channeling all our efforts into scientifically productive lines of inquiry.

    In the UK, the Peter Duesbergs are still running the show, despite decades of failure of psychological treatments to convince ME sufferers that they are not really sick. If I were a UK citizen – even a healthy one – I’d be disgusted that my government wasn’t supporting good science over bad with regard to this devastating disease.

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  15. Jack says:

    All researchers should be able to complete the science in a non-hostile environment, and I condemn the ‘death threats’ and especially the action perpetrated against Myra McClure as reported recently in the UK press and by her own admission.

    Any attempt at justifying such activity is in the least counter-productive to ‘advocacy’. Producing perceived ‘negative’ papers and receiving ‘abuse’ as a result should not become the accepted ‘norm’ – though I fear this has become so in certain circles over ‘XMRV’.

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  16. Nicki says:

    I was present at the All Party Parliamentary Group on ME meetings that Mr Laurence Swift refers to, and no such “ruckus” took place.

    If polite requests asking for time to read a long Report that the patients had only just been presented with, and were expected to hurriedly read, digest, and ask questions about, is a
    so-called “ruckus”, then God help all of us.

    It is deeply unhelpful to seek to point the finger of suspicion and blame at individual patients who are not guilty of anything except being informed and articulate.

    As for the figure of “100 extremists” – what speculations created such a figure? What evidence is there for such accusations? We have not been given any evidence for such wild speculations.

    These imaginative accusations really need to stop before even more patients are put in the dock and subjected to what has fast degenerated into a media driven witchunt of sick ME sufferers en masse.

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  17. recovering cfser says:

    I’m not surprised by such radical behavior by some patients: it’s an act spillin over from cesspool sites like phoenix rising full of diatribe against main stream scientists and worship of WPI with religious fervor. Suffice to say that I no longer frequent such sites.

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  18. Art says:

    As scientists you should be aware that no attempt has been made to put the hypothesis laid out in Lombardi et al. to the test. They found xenotropic polytropic virus and various sequences in 67% of ME patients using particular methods. Lo et al. informed that finding by detecting xenotropic polytropic modified polytropic sequences. They found the same virus with a different approach. The annealing temperature made the difference.

    The negative papers, including those published in PLoSONE have failed to attempt replication and have provided no proof of diagnostic sensitivity. Until this happens no Blood working group or Lipkin study is going to move the science forward or dispute the findings. Neither and designed to put that to the test.

    PLoSONE do you not think it is time to have others replicated or diagnostically validate. You are meant to be a science journal.

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  19. Catherine Wright says:

    I agree Nicki. I don’t think the convicted criminal Laurence Swift should be commenting on anyone’s behaviour.

    Myra McClure’s study was flawed. As said above detecting XMRV takes a very long time. How come McClures study was over in five minutes using fatigued patients?

    I would be interested to know what the off air comments were too?

    I keep seeing comments here as though what has been published by Simon Wessely is truth, when it is so obviously an orchestrated attack on sick people using pristine PR, designed to increase book sales.

    Not one person I know in the ME community would make an attack, less a death threat. Can people not see this is phallacy?

    People who believe XMRV is the culprit of this disease are also not angry, they want the same as everyone else – treatment, and if it’s left to the powers that be as it has been for thirty years then we will die, and our children will die.

    It dismays me to see pwme attaching other pwme without facts and data to back up their claims.

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  20. polly says:

    This is getting rather tedious now . It is like these researchers and the publications which are publishing these claims are playing Chinese whispers , and the story is getting exagerated a little more each time . It would be funny if it wasn’t such a serious matter.

    Why has nobody been arrested ? Simon Wessely for one has been making these claims for years , just like his claims that he no longer works in ME/CFS research yet do a quick search and hey presto his name pops up on numerous recent papers .

    I have no doubt these researchers have recieved a few insults along the way , my god who hasn’t in life , but likening insults to death threats and changing the context of meaning is in my few rather petty . It is as if the researchers are trying to score points over the patients at the moment.Now isnt the question you should be asking this ?. why would researchers wish to stigmatise and label a whole section of disabled people in such a way when they are the very people they are supposedly trying to help ?

    David Cameron recently stated in the press and on national televison the very same phrase that has been used and construed as a death threat to these researchers ‘you will pay ‘ …… Davis Cameron used it as an address towards the recent rioters we have had in the UK . Does this mean he has now condemned several hundred people to death ? erm no I think not .

    This story really is getting rather pathetic now it reminds me of a bunch of kids arguing in the playground . It also reminds me of a childhood rhyme . STICKS AND STONES MAY BREAK MY BONES BUT CALLING NAMES WONT HURT ME !

    I think its about time some ‘real’ journalists jumped into the fray and started asking why on earth a patient population is being attacked and slurred in such a way . After all the ME/CFS community as now been likened to animal rights campaigners , Now I for one have not heard of any labs being blown up so how than this be a justified comparison ? It can’t . Animal rights campaigners didnt just send an email saying you kill that rabbit and you will pay ? did they , no they went to extreme lengths breaking into labs , causing damage infact animal rights groups have claimed responsibility for hundreds of crimes and acts of terrorism, including arson, bombings, vandalism and harassment .. This can hardly be compared to a section of severly disabled people now can it ?

    Enough is enough . Seriously how much more can ME patients take without all this seriously damaging their health. Sufferers are already isolated enough without becoming social lepers via the media !

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  21. Jack says:

    Nikki. That is the whole point.

    No-one has put ‘PATIENTS in the dock’ and no-one has levelled claims against the whole ‘community’ of PATIENTS either for that matter.
    I fail to see why individuals other than those who are taking part in such activities should be offended.
    If you want to talk about an individual’s or representative body’s right to express an opinion then fine, or even the means through science to challenge another scientific study.
    But these specific instances are not a reflection of anything else. Do you not condemn the attack on Myra McClure outlined in the article referred to and expanded on elsewhere? The one about her drowning?

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  22. Gerwyn says:

    I think it must be said from the outset that Dr McClure did not use the same primers as used by the WPI and the NCI.She did not use the same cycling conditions magnesium concentrations salt and buffers.These variables can all effect the ability of an assay to detect a low copy target.Dr McClure used the primers reagents and cycling conditions used by Dr Silverman in the cleveland clinic.Dr Mikovits and Dr Ruscetti also failed to detect XMRV in patients testing positive by reverse transcriptase PCR using Dr Silverman,s assay.Dr McLure therfore( quite unwittingly) used an assay which had repeatedly failed to find XMRV in infected people

    .There are essentially two choices when using a PCR assay to detect a target sequence in an infected host..The first is to use a PCR assay which has already been optimised to detect the agent in questionThese are the kind of PCR assays used in the field of HIV detectionThe second is to optimise the assay by adjusting the cycling conditions and reagents until the assay can detect the target in a sample taken from a person known to be infected.The second is an absolute requirement before a new PCR assay can gain regulatory approval for the purpose for which it is intended

    Dr Mclure changed all the dependent variables from those used by DrMikovit,s and Dr Ruscetti,s teams.Thus she had no way of knowing whether the results were caused by the absence of XMRV in her patient population or by her choice of assay conditions.Given that Dr Mikovits and Dr Ruscetti had both found that assay ineffective the latter is a strong possibility. She is certainly not alone Dr Levi made exactly the same mistake in a recent study.The situation is further complicated by the use of patients suffering from chronic weariness of unknown or psychological origin supplied by Simon Wesselly

    .The patients were diagnosed by the use of a questionnaire developed by Sharpe et al in 1991. This established the OXford criteria whose sole mandatory symptom used for diagnosis is fatigue defined as weariness.patients with neurological signs are excluded as are patients whose symptoms suggest a medical cause for their fatigue.This patient cohort is objectively different to that examined by Drs Mikovits and Ruscetti

    Scientific studies are designed is such a manner as to enable cause and effect relationships to be established.To do this confounding variables must be controlled. This has sadly not been the case in the study headed by Dr McClure.
    Controlling confounding variables would have involved using the same cycling conditions and reagents as used by the WPI and the NCI,the same concentration of target nucleic acid,the same method of blood collection and the same diagnostic criteria.Sadly all these variables were changed and thus it is impossible to determine whether XMRV was present in the population or not.

    This post is not intended to vilify Drs McClure or Wessely in any personal sense.The criticisms are solely confined to the quality of the science employed by so called XMRV researchers.I am somewhat saddened that a publication which has a growing reputation in the field of disseminating scientific information has not discovered the glaring flaws in so many studies which have failed to detect XMRV using studies which have solely relied on PCR assays with high analytical sensitivity but whose diagnostic sensitivities are unknown quantities.These assays would never be allowed in the field of HIV and I feel that patients can rightfully question why they are being used to research into their disease and leading to conclusions which are unfalsifiable

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  23. Anna says:

    1. Why hasn’t the press investigated the Wessely School’s financial ties to the DWP, the insurance industry and ‘rehabilitation’ businesses?

    2. Why hasn’t the press pointed out that none of the negative XMRV studies was a replication study? Could it be that the researchers didn’t replicate the WPI’s methods because they had an interest in not getting a positive result?

    3. What would members of the press think if psychological therapies were the ONLY treatment allowed if they contracted MS, cancer, AIDS, diabetes etc?

    4. Wessely is on record as follows:
    “We’re not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there’s nothing we’re going to do about it. We’re in the business of rehabilitation.”
    In other words, he is preventing patients getting treatment for the root cause of the disease.

    5. Where is the investigative journalism into the alleged threats to Wessely? Why hasn’t there been any?

    6. When will the press realise that the Science Media Centre is a propaganda exercise (see its own web site) funded by various vested interests and in which Wessley occupies a position of influence?

    7. Why has Wessely devoted resources to the ongoing propaganda war against 250,000 very sick people instead of allowing those resources to go into genuine biomedical research?

    8. What ever happened to balanced reporting?

    8. Why has Wessely used his influence over many years to prevent public funding of biomedical research into ME in the UK?

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  24. Nicki says:

    @ Jack – the point is that ME sufferers have been wrongfully accused of causing a so-called “ruckus” in Westminster, an accusation that I categorically deny, as I was present and witnessed the proceedings. That non-event has been now exploited to assert that ME sufferers may be supposed “extremists”. ME sufferers have been sloppily accused of being so called “Militants” or “Extremists”. The finger of blame has been so widely waved that anyone with ME can now be suspected.

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  25. Nicki says:

    @ ‘Jack’ – its difficult to see why you believe that innocent patients should not be offended, and by your implication, only supposed ‘guilty’ ME sufferers should be offended by the extravagent media onslaught of the last weeks.

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  26. Nicki says:

    By the way, any current or impending court case relating to alleged threats would have been well and truly compromised by the media reporting of the last weeks. When can we have some details of police investigations and actions relating to the supposed “threats”?

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  27. Jane Clout says:

    There is no evidence of any death threat. The worst that has been stated was that one woman was found to be carrying a knife at a lecture he gave. What kind of knife? We don’t know. A pound gets you ten if it wasn’t a small legal penknife, carried to cut up apples or open blister packs.

    The worst email to Wessely that has been mentioned, in all these vile and incorrect press articles, said, at its strongest, “You Will Pay”. David Cameron said exactly the same thing to the rioters on a recent TV interview. Is this a death threat?

    McClure claims to have received repeated emails in which the sender said the he was “imagining her drowning”. Bear in mind the treatment of one young ME sufferer (Ean Proctor), thrown into a swimming pool when he paralysed in order to make him move his limbs. He could not, and sank to the bottom (he was rescued in time, I hasten to add). I suggest this has something to do with the imagery used in an email that was not a “death threat” either, but merely sharing the (rather disturbed) senders thoughts.

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  28. Jack says:

    Nikki,

    Not one article in the British press to my knowledge has pointed any finger at patients.

    This threat was relating to the threats against Myra McClure and scientists but as per usual it has become something out of context.

    When did it become personal? When did the scientific papers being produced attract comments relating to an author more than to the methodology or the conclusions reached?

    At what point do you draw the line between reasoned argument and non-defensible threat?

    Is it the ‘fault’ of scientists publishing their email addresses? Should they tolerate the kind of repeated hostility like that experienced by Myra McClure?

    Should it matter who they are? What discipline they follow? What the results or method of the paper they author is interpreted as by those outside of science?

    Where do you personally draw the line Nicki? Do you not think what happened to Myra McClure was wrong or do you feel it justified in some way?

    I appreciate your point about the APPG meeting although there was disruption caused and the proceedings were interrupted.

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  29. Anne Boyd says:

    I’m sure by now that the PLoS One editors may be regretting poking this particular hornet’s nest. Or, perhaps, feeling frustrated that the point they *thought* they were making – that threats of violence against researchers should never be tolerated, and are inimical to the scientific enterprise – is getting “lost” amid all these inconveniently Byzantine details of the long political history around ME “science” in the UK. Why can’t we all just agree that harassing researchers is bad?

    To be clear, the political background here is not being provided to justify or excuse threats of violence against researchers. It is being provided because it is little known outside the UK and outside the group of people who are well-informed about ME/CFS issues; it is also being provided because it casts some light on the reasons why Simon Wessely feels entitled to make exaggerated claims of “militant,” “dangerous” harassment without fear of being challenged in the UK press, and the reasons why these claims should be taken with a grain of salt before they are used as an example of egregious anti-science attacks.

    Does this kind of inexcusable hyperbole (Wessely says he “feels safer in Iraq and Afghanistan” – really? How many IEDs have been discovered in London?) qualify as “civilized discourse,” which PLoS One hopes for in its editorial?

    And are “patient militants” really “driv[ing] young researchers” away from the field of ME research? For decades now, young researchers have been dissuaded from research into ME/CFS for quite different reasons – because there was no funding or institutional support for biomedical research, and because the disease itself was stigmatized as being “medically unexplained” and therefore factitious or a form of somatization disorder.

    Perhaps young researchers don’t want to get into the line of research that Wessely continues to follow because they have rightly detected that it is a dead end, where no new light is being cast on the illness and no progress is being made in helping sufferers. And does Wessely volunteer his claims of victimization to the press so readily because he hopes that scare stories will attract young researchers?

    By contrast, I was greatly heartened to view the videocast of the two-day ME/CFS State of the Knowledge Workshop conducted at the National Institutes of Health this past April, in which I heard numerous young researchers respond to the presenters with expressions of excitement and fascination about the discoveries being made in multiple areas such as neurology, immunology, systems biology, and exercise physiology. We can only hope that research funding and institutional support is increasingly made available to assist young researchers to join this field and assist in making advances that will help patients.

    I’ve wondered why PLoS One feels it has a dog in this fight at all. Is it because the journal feels defensive that research they published has been attacked by non-scientists? Fair enough: but it seems to me that you must take the good along with the bad if your stated goal is to make scientific research open to all. The journal has and exercises the right to remove or block postings that are abusive, non-substantive, etc., and that is as it should be. But it must also be prepared to receive legitimate and substantive criticism from those to whom it has made access available, scientists and non-scientists alike.

    We do, unfortunately, find ourselves in times when science is under attack from many quarters. This probably results in an over-readiness to raise hackles when a new “attack on science” seems to appear on the radar screen. In this particular case, however, I would urge readers unfamiliar with the whole context of this story to pause a second or two before indignantly hitting the “Retweet” button, and engage in some critical inquiry about what’s really happening in the UK, and why, and where the chilling effect on open scientific debate is really coming from here.

    Unfortunately, there is no peer review required for statements that researchers make to the press. I would urge the editors of PLoS One to bear this fact in mind, before unwittingly becoming complicit in repeating and amplifying such inflammatory statements rather than questioning the basis upon which they are made.

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  30. Angela Kennedy says:

    @ Jack –

    Here is just one example – there are many, many more – where legitimate, non-criminal activities are juxtaposed with alleged criminal behaviour in order to construct people making those legitimate, non-criminal activities as ‘harassers’. This is from the Observer article:

    “One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.

    In addition, activists – who attack scientists who suggest the syndrome has any kind of psychological association – have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.

    “I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse,” said Professor Myra McClure, head of infectious diseases at Imperial College London. “One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months.”

    See how legitimate activities that other members of the public might use are deemed ‘harassment’ when undertaken by ME sufferers and their supporters. This is a deliberate attempt to make non-criminal advocates guilty by association with those tiny amount of people allegedly committing criminal harassment.

    Remember- this is just ONE example. There are many more from the past two months alone- but they go back longer.

    So THAT is why innocent advocates are rightfully horrified by this latest negative PR campaign. It is an attempt to smear and discredit innocent advocates in order to deny their right to make public objection to psychogenic explanations for ME/CFS, as well as drown out their objections by misrepresentation of those objections.

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  31. Angela Kennedy says:

    Indeed- let us look at that middle paragraph I have cited above in more detail. When one takes away the deliberately inflammatory language, this is what we find:

    1. Some ME/CFS sufferers and their supporters object to psychogenic explanations of ME/CFS.

    2. Some ME/CFS sufferers and their supporters have made requests for information under FOI.

    3. Some ME/CFS sufferers and their supporters have university ethical committees about the ‘behaviour’ of some scientists’.

    4. Some ME/CFS sufferers and their supporters have alleged some scientists have certain Conflict of Interests.

    So- activities related to maintaining standards in public life, that members of the public are free to undertake, indeed is given as a public right, have been undertaken by some ME/CFS sufferers and their supporters.

    But add the inflammatory language and the strikingly odd structuring of these articles, they become conflated with alleged acts of harassment.

    And- as I feel the need to keep mentioning- this is only one example. There are plenty more.

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  32. Jack says:

    Angela,

    Stick to the context of the thread. And the context of the articles. In the Observer it was the POLICE who are said to have compared the activities to animal activists.
    Why will you and others not say that the repeated threats to Myra McClure about watching here drowning were WRONG?
    I am well aware that one article – The Times Higher Education – turned ‘knife’ into ‘knives’ and published a cartoon; as well as you repeated postings of similar content (if not the same) as the above.
    Why can’t you simply say that the specific examples read out on the BBC and/or reported in the papers went too far?
    You don’t have to openly say you condemn them if you feel you can’t. But do you not think that people have a right to say when they feel threatened? How does threatening behaviour help you as an ‘advocate’?

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  33. Angela Kennedy says:

    @ Jack.

    Sir, I AM sticking exactly to the context of this forum subject, thank you very much.

    And I have already condemned any ACTUAL harassment that might have been committed, in my previous post.

    Now- why can’t YOU condemn the egregious attacks on legitimate advocacy?

    As regards the ‘animal rights extremists’ claim. WHERE have the ‘police’ said that? Is it in an official communication, for example? There’s absolutely no substantiating evidence to support that claim, but even stranger, only a few weeks ago, Nigel Hawkes of the BMJ had to acknowledge in his article, filled even as it was with the juxtaposition of legitimate activity with alleged crimes, that ME sufferers and their supporters were NOT the same as animal extremists. The story actually changed within a few weeks of this negative PR campaign, rather like the Chinese Whispers change from ‘knife’ to ‘knives’ example, as you so kindly provided.

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  34. Nicki says:

    Thank You for your Post, Angela,

    I feel I have a right to say when I feel threatened:

    * I, personally, from both personal and professional experience, objected to psychogenic explanations of ME, on various public forums; that is, once I was well enough to read, write and use a computer again after many years of very/severe ME.

    * I have personally made a request for legitimate information under the FOI Act from the Health Protection Agency (HPA) re an XMRV retrovirus Study of UK Blood Donors. After some months of chasing up the FOI request, I did receive a detailed response from the HPA.

    *I have sent researched, referenced, evidence to the National Research Ethics Committee (NRES) re grave concerns about the UK ‘SMILE’ Trial into the Lightning Process using young people with ME. I sent copies of my documents to Dr Esther Crawley (the principal SMILE Trial researcher) and to the Linbury and Ashen Trusts who are the funders of the Trial. I am more than happy for anyone to read my statements to the NRES (if you have the patience to plough through it, just ask and I’ll post my evidence).

    *I have publicly stated (with referenced evidence) that certain ME/CFS researchers have a conflict of interests.

    * I have made a formal Complaint to the Parliamentary Commissioner for Standards in Public Life.

    * I have been personally issued with a Death Threat, intensive harassment, and threats of violence at very close quarters whilst severely sick with ME and housebound. That resulted in my having to flee from my home (with necessary substantial assistance) and to relocate to another part of the country for my own safety whilst severely sick. Because, in common with most British sick and disabled citizens, I did not receive the protection of the Law from disability hate crimes.

    The harassment and death threat towards me preceded my involvement with ME advocacy (I was far too ill to use a computer at the time and I had nothing to do with ME advocacy, which I had no knowledge of at the time); but the disability hate crimes were possible only because I was very severely sick, lived alone, and was thus a sitting target. As a result of the total lack of protection under UK law whilst severely sick, I no longer consider myself a British Citizen (despite my family having been given an estate by Henry the VII) and I no longer have any faith in British Justice.

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  35. Alex says:

    I have sympathy for anyone who is really getting death threats, but McClure and Wessley have not accused any specific individuals or organizations. It is completely unfair to vaguely paint everyone who is opposed to psychogenic explanations for CFS as a potential extremist. The psychogenic view of CFS is basically dead in the US and Japanese research community; this bitter struggle is only going on in the UK and similar countries that have a socialized medical system focused on controlling costs at any cost.

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  36. Jane says:

    I have never seen any evidence of any threats against Myra McClure nor those made against Simon Wessely.

    I can assure you that if I would receive such threats I would be more than happy to turn copies of those emails over to the police and press so the world could see without any doubt the seriousness of these threats.

    Until now that has not happened by either of them which makes me personally doubt the existence of those emails and threats.

    IIRC Myra McClure herself admitted in an interview that the ‘punch’ on the street situation was more of a stranger bumping into her. That person did not identify himself as an ME extremist and than punched her. It’s the media who took this and ran with it giving it a totally different spin.

    Until I see any official evidence I will take these threats with a grain of salt. After all without evidence it’s nothing more than hearsay and a case of ‘she said/he said’.

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  37. Center for M.E. Law & Policy says:

    We fully agree with the cogent and accurate posts of Ms. Kennedy, Ms. Clout and Polly.

    We condemn any threats of violence to Prof. McClure.

    We would like to see evidence of the alleged threats to Prof. McClure and Prof. Wessely; these have never been produced despite requests over a long time period. We would also like to see evidence that law enforcement considers “ME militants” to be as dangerous as animal rights activists. As was pointed out by another commentator, supra, this claim is not very credible because of the contrasting levels of violence carried out by the two populations (the most serious allegation of which by ME patients seems to be a claim by Prof. McClure that she was jostled in the street).

    Because misrepresentation is fundamental to Prof. Wessely’s standard operating method and Prof. McClure has has made substantial misrepresentations to the press about bona fide ME research, more proof is required than merely the claims of the professors.

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  38. AIDAN WALSH says:

    SIMON WESSELY AND PETER WHITE ARE COMPLETE STAND UP COMEDY AT ITS BEST…NOTHING LIKE GOOD OLD BRITISH COMEDY AND FRAUD COMBINED…TO THINK THE BRITISH GOVERNMENT FUNDS COMEDY RESEARCH IS A TOTAL FARCE…IT IS A DISERVICE TO OVER 250,000 INDIVIDUALS SUFFERING THROUGHOUT THE UNITED KINGDOM…A COMPLETE NATIONAL DISGRACE…I AM ASHAMED I WAS BORN IN THE U.K. ALSO NUMEROUS SERIOUS GOOD RESEARCHERS ARE DENIED ACCESS TO GRANT MONIES TO INVESTIGATE THESE ‘LABEL’ ILNESSES…COMICAL,HILARIOUS….

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  39. C. Sellers says:

    The above editorial has no place in a reputable science journal.

    The campaign of negative publicity carried out against this patient group is improper coming from a doctor who also claims to treat and care for such patients.

    I believe this publicity campaign to be more likely to be an attempt to retard the growing medical and research interest in ME and XMRV. I would urge any young researcher reading this not to heed this bid to repress the free exercise of scientific enquiry but to go ahead and explore this exciting and rewarding new field.

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  40. Julia says:

    I am sorry that PLoS has felt it necessary to publish this editorial. Almost no-one with ME supports the issuing of threats, of whatever kind, to researchers. I certainly don’t. Issuing such threats gives the impression that those doing the threatening may be mentally unstable, in which case surely a psychiatrist like Professor Wessely should be able to understand them rather well.

    However, as a very long-term ME sufferer I do understand the desperation of the very tiny minority who may have issued threats. XMRV offered the ME community hope that finally a cause had been found and so developing an effective treatment might not be far behind.

    I would expect that if these threats are genuine they would be dealt with by the police rather than through the media. Using the media, even the scientific media, to publicise the alleged behaviour of such a tiny minority makes this begin to feel like a witchhunt – of people with ME.

    And to compare people with ME to animal rights activists is absurd. Many of us are completely housebound with this terrible illness and the chance of us actually carrying out any attack is practically non-existent.

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  41. Angela Kennedy says:

    I’d like to thank Anne Boyd for her comments here also and would echo those.

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  42. Angela Kennedy says:

    By now, I am hoping that the PlosOne team have a clearer picture of the whole problem than they did when they wrote this editorial. Hopefully they now understand the issue is far more complex than they were led to believe, and that the ‘patients as villains attacking scientists’ meme they unwittingly engaged with is unsafe.

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  43. Angela Kennedy says:

    There is one other issue I’d like to address, and that is why patients might protest against psychogenic explanations for their illnesses.

    They do firstly because psychogenic explanations for somatic illnesses are often implausible, and the result of fallacious medical reasoning: a lack of bio-medical knowledge, on an individual or disciplinary level, gives rise to often increasingly absurd and confused metaphysical explanations (beliefs, lies, delusions, the awesome ‘Carrie’-like kinetic power of the mind over the body to nth degrees) by default.

    This leads to psychogenic dismissal of serious physical illness, so that patients’ lives and health (and quality of life) are endangered. Psychogenic misdiagnoses have led to tragic, premature deaths. One example in the medical literature is a woman with Creuztfeld-Jakob disease, who choked to death because doctors thought her illness was psychogenic: her having had difficulties with coming out as lesbian, and a difficulty in finding organic signs (eventually found, but too late for the patient) leading to this fallacious conclusion.

    Accompanying psychogenic dismissal of serious illness is the use of harmful treatments, such as incremental exercise regimes for people in cardiovascular and neurological failure (if you look at the medical literature this is a phenomenon related to ME/CFS, NOT caused by ‘deconditioning’), or Cognitive Behavioural Therapy that blames the patient for ‘thinking’ themselves ill and not being able to recover.

    On top of this, patients given psychogenic diagnoses are deemed, by medics and other health workers, other state institutions such as education and social security, communities, even families, as authors of their own misfortune, as moral deviants. This leads to contempt for patients from all directions and serious mistreatment, including, for example, but in no way limited to, the withholding of benefits for people in serious need.

    So, a patient facing a psychogenic explanation is facing a HIGH potential of misdiagnosis, with a HIGH potential for serious adverse effects of this. Rationality and self-preservation will inevitably lead to protestation from patients, though they may still find themselves, at least initially, reeling from these absurd responses from professionals they are exhorted to trust and defer to, and usually do.

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  44. Brain says:

    @ Jack

    Actually it is not the police who have said anything about these allegations being true. It is the Wessely School and the papers who have believed them without proof.

    The media should not be covering any story about allegations regarding individuals who remain unnamed, because by running the stories they are associating it with the disease and advocates, which is entirely wrong. It is not even newsworthy if true. Far too small scale. It is offensive to therefore run the story, when the bigger more important story is how the Wessely school deny the published scientific literature on ME and peddle CBT and GET which have no evidence base. How they have blocked scientific research, taken all the funding, and driven ME scientists away. The Wessely school psychiatrists are not qualified to treat or research ME. They have been abusing ME patients for years. It is also wrong for the Wessely school and media to pretend there are no scientific issues with McClure’s work. She did not replicate and did not diagnostically validate her assays. She also failed to even include ME patients. Now that is a story.

    Don’t you think the papers should be condemning the Wessely School for their attacks on ME patients? For what they are doing? Don’t you think a reasonable person would say they should not be involved in ME and that they should be investigated by the Government for their ties to the insurance industry include the DWP?

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  45. Joey H. says:

    I haven’t read all these comments, sorry, but has any evidence of these death thread been made public? Or exactly how many *different* people are sending them? Everyone is claimIng threats but I still haven’t seen an email or anything from them. (I don’t doubt, I’d just like some hard info instead of the constantly muddy reporting.

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  46. Susanna says:

    Why does Plos One decide at this point to release information concerning people behaving in regretful ways in response to a study published some time ago? This is just in time to coincide with the Wessely-orchestrated attack on ME patients in the media.

    Threats should not occur but the orchestrated media denigration of ME patients has gone way beyond a report of threats which are after all police business. What are the rest us supposed to do about this? Yet we suffer the consequences of the denigration.

    When Prof Wessely reportedly received threats surrounding a speech about Gulf War syndrome did he attack the army for this? Not that we heard of. ME patients are a softer target though.

    Yes, as you suggest, let us have civilized science-based discussions.

    For a start, Plos One is invited to start a rigorous debate about the PACE study, examining issues such as the sample used (a miscellaneous group of patients with fatigue), the measures used (weak), exaggerated claims and the likely effect of GET on sick patients who cannot increase exercise without paying a high price. After all, patient objections to this study were the major impetus for the media attacks on patients which we have been wittnessing.

    Plos One could then invite Prof Wessely to explain why he is so strenuously opposed to having rigorous objective biomedical tests administered to this group of patients. Recently in The Spectator he argues for merging psychiatry and neurology into one category, but objects to ME patients receiving brain scans because that would create a separation between the disciplines! Does this mean that neurology is to be subordinated to the subjective opinions of psychiatry? An alarming prospect with which ME patients are only too familiar.

    Why is he exempts from all questioning and accountability? His statements are full of contradictions. It is he who has held back meaningful biomedical research into ME – not patients.

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  47. Jack says:

    @ Brain

    ‘According to the POLICE, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.’ Observer – as linked in the originating post above.

    Of course you can choose to believe what you want though I still fail to see how arguing the toss about it all does anything for anyone’s ‘advocacy’.

    ‘”I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse,” said Professor Myra McClure, head of infectious diseases at Imperial College London. “One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months.”‘

    Condemn that Brain.

    @ Center for M.E. Law & Policy. Who are you other than someone who posts on MECFS Forums under a different username?

    I was first diagnosed with Myalgic Encephalomyelitis over a decade ago – and some of the comments being posted on this thread disgust me.

    Condemn the sort of intimidation being referred to by Myra McClure and stick to the originating post.

    What sort of advocacy are you people trying to demonstrate here? Anyone would think you condone the hate-mails and intimidation.

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  48. Angela Kennedy says:

    @ Jack

    People ARE sticking to the original post. And NO-ONE here has condoned any actual hate-mails and intimidation that might have occurred.

    Stop insinuating otherwise.

    I can only assume from your posts that you actually condone the misrepresentation of legitimate advocacy behaviour as ‘harassment’, and the attempts to discredit legitimate advocates. You have been given evidence that this is what has been happening, and yet you choose not to condemn that.

    I note also that, even though we’ve shown there is a massive problem with the unsubstantiated claim about ME sufferers and ‘animal extremists’, and the Chinese Whispers nature of these allegations, especially as reported in the press, you choose to carry on using these to attack the motives of people.

    You appear ideologically committed to the ongoing smear campaign against ME sufferers, for some reason. A more reasonable position would be addressing the cogent explanations people have made.

    But I also think you might not understand the actual original blog post itself. People here have shown why the comments about “everyone else’s right, to enjoy the freedom to debate and investigate scientific topics openly, constructively, and without fear.. the importance of civilized discourse in these matters” is actually being denied ME patients and their supporters.

    Yet that doesn’t appear to worry you. Condemn that, Jack, or anyone would reasonably think you condone that sort of thing.

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  49. Dr. Gausman says:

    @Jack

    As far as I can see people ARE condemning it but I have yet to see you condemning the treatment of ME patients in the name of psychiatry.

    Anyone would think YOU condone such treatment, Jack. I’m not a sufferer but since learning of these attacks I have taken the time to do a little research on the matter, and, although I cannot claim to be an expert, I can plainly see that the issue of these alleged death threats cannot be separated from the historical and political context. It seems to me that you are trying to ignore this, Jack, as if you are trying to sweep it under the carpet.

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  50. Roy says:

    I agree with and appreciate Dr. Gausman for writing “I have to say that I find the whole post deeply patronising; as if you are berating the entire community of sufferers. Does it really need to be mentioned that you find this behaviour unacceptable? Does it not go without saying?”

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  51. Sarah Lawry says:

    Please read this article written in 2005 – still so relevant today. Appreciate your comments to date Dr Gausman (a huge understatement) and hope to appreciate yours, Jack, after you’ve read the piece. We’re fighting for our lives. And fighting against misinformation, propaganda and lies.

    http://niceguidelines.blogspot.com/2011/09/margaret-williams-me-who-is-attacking.html

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  52. Anna says:

    I said in an earlier post:
    ‘When will the press realise that the Science Media Centre is a propaganda exercise (see its own web site) funded by various vested interests and in which Wessely occupies a position of influence?’

    The following is a quote from an article in the health publication ‘What Doctors Don’t Tell You’ entitled ‘The Real Spin Doctors’, Volume 22 no. 5:
    ‘Science Media Centre Advisory Group
    ‘The Science Media Centre Advisory Group is made up of 16 high-ranking scientists. The SMC’s Science Advisory Panel showed strong links to the government of Prime Minister Tony Blair, and to the pharmaceutical industry and the biotech and GM industry. Non-scientific advice is readily available on ME/CFS, Gulf War Syndrome (GWS), multiple chemical sensitivity (MCS) and cellular-phone-linked illnesses.’

    The majority of ‘science’ and ‘medical’ journalists don’t appear to give critical or objective attention to the material they are spoon fed. They rarely put the other side of the story – unless, like journalists Hillary Johnson (author of ‘Osler’s Web’) and Martin Walker (author of ‘Skewed’) they have personal experience of the neurological disease ICD-10 G93.3 Myalgic Encephalomyelitis.

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  53. Elenaor says:

    Well, I think the comments proved the point all too well, this is one hell of an aggressive, toxic atmosphere.
    Well done to anyone who has stayed in the field; I wouldn’t have.

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  54. Jane Clout says:

    I don’t believe these ‘death threat’ allegations. As others have said, where’s the evidence? People with ME are too sick to mount such a campaign.

    It is time to stop this Chinese Whispers spin which only obfuscates the real issues.

    The curious thing about ME advocates is how appreciative they are to any doctor or scientist who provides a glimmer of hope.

    They have sent flowers, donations and groupcards to those that are working to find the reasons for the illness. They club together on a monthly basis to raise funds. They vote in their thousands in on-line competitions, to gain prizes to help fund research and treatment.

    UK state funding into biomedical research on ME is pitifully small to non-existant. Even the 1.5 million recently earmarked by the MRC pales into insignificance when compared to MS or Cancer research funding.

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  55. Nicki says:

    ‘Jack’ stated to Nicki: “I appreciate your point about the APPG meeting although there was disruption caused and the proceedings were interrupted.”

    No, Jack, there were no “interruptions”; the proceedings were not “interrupted”. I was present at the APPG proceedings.
    You were not. I was a witness.
    You speak from hearsay and gossip.
    Full Stop.

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  56. Angela Kennedy says:

    @ Elaenor,
    What these comments have demonstrated is an articulate and knowledgeable patient community and supporters who know all too well the complexities of the issue, and how knee-jerk reactions and ad hominem attacks against vulnerable patients actually stifle actual scientific progress. If you are a scientist, you could do well to learn from that. Be thankful you are not a patient, or do not have a loved one who is a patient, dangerously ill, subject to psychogenic dismissal, who dares try and explain the actual situation, only to find oneself subject to asinine attacks, such as the one you have just demonstrated.

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  57. Tired of all this says:

    As usual the comments responding to the article illustrate the truth of the editorial.

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  58. Holly says:

    @ Tired all the time.

    The comments here hardly illustrate the truth of the editorial.

    I’ve had ME for 15 years and I have had no treatment – fact as I sit here in my pyjamas, tired and in pain, angry that not only has this body of people discouraged sensible biomedical research for nearly thirty years, not content with that because decent research is emerging they feel the need to smear the good name of campaigners who quite rightly are upset at the lack of care and ability of anyone to take this illness seriously.

    Death threats? Where? Where is the proof?

    No truth what so ever in this editorial nor the blanket reporting of other news papers I have lost respect for.

    You have no idea.

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  59. Angela Kennedy says:

    By Tired of all this’s logic, those who protested against charges of witchcraft were, by definition, witches. That such an absurd statement can be made by someone on a blog of a scientific journal should be ringing alarm bells to any rational, scientific reader. Clearly such comments are attempts to bait a vulnerable community, already under attack just for protesting their innocence and asking for correct treatment. Whether due to asininity or astroturfing, the ‘Tired of it alls’ show the level of attack the ME community and their supporters have had to put up with all these years.

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  60. Gail says:

    @Tired of all this – the comments clearly demonstrate the desperation felt when a serious, neurological disease that eventually leads to death, is trivialized by those who have no understanding of the situation. How would you feel if you found yourself bedbound, tube-fed with daily seizures… and you received no treatment or care? I’m sure you too would be a little fed up! 25% of an estimated 250,000 ME sufferers face this situation in the UK. The editorial clearly shows how little the writer knows.

    ”The treatment of today’s ME/CFS patients is comparable to that of lobotomy patients decades ago”

    ”When the full history of ME/CFS is written one day, we will all be ashamed of ourselves”

    Dr Ola Didrik Saugsted, Professor of Paediatrics, WHO Advisor, Norway.

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