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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Words almost fail me at this latest attack on ME sufferers and lionisation of the psychoquacks. Hopefully someone can post the full article. I have been sent a copy via a forum but it has lost some formatting. A scanned copy would be good. Here is the link:

    http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece

    No doubt I and many other law-abiding people are now on a blacklist due to being 'activists' which it appears is regarded negatively. Perhaps human rights activism is similarly regarded by these people?

    To write such a long article and almost completely ignore the actual science is unforgivable.
  2. Marco

    Marco Old blackguard

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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Until someone can upload a decent scan, here is the version I currently have:

    .........................................................................

    Photo: Simon Wessely (full page)

    Caption: UNDER FIRE

    Sir Simon Wessely had a panic button installed in his office
    ~~~~~~~~~~~

    (full page)


    this man faced death threats and abuse

    his crime?

    He suggested m.e. is a mental illness


    Leading scientists such as Sir Simon Wessely, left, are facing a sustained terror campaign - just for researching the causes of ME.

    Death threats and abusive emails are commonplace, and some scientists are now under police protection.

    By Michael Hanlon.

    Portrait by Richard Pohle.

    ~~~~~~~~~~~~~~~~~


    Photo: Charles Shepherd and dog

    Caption:

    someone should put you on a treadmill until the exercise cures your sadistic, or is it delusional, state of mind

    Professor Sir Simon Wessely lives on the front line of science.

    He does not deal with dangerous nuclear materials; nor does he risk his life meddling with lethal microbes.

    Yet this affable, chatty psychiatrist, who works at the Maudsley hospital in South London and was knighted for his work earlier this year, receives regular security briefings, has his mail checked and X-rayed by security staff and has had panic buttons installed in his office and home.

    He has been subjected to abuse and death threats, and one person rang him up and threatened to castrate him.

    He has done a lot of work for the military, helping to treat traumatised war veterans, but they are not the problem.

    Nor does he engage in animal experimentation.

    No, Professor Wessely's misfortune is to have entered the bewildering World of myalgic encephalomyelitis, or ME - initials that strike fear into the hearts of doctors.

    The story of ME activism is probably not one you will have heard much about, even though it is just as controversial as
    vivisection.

    Because not only do doctors who work in the field get a lot of grief, so does any journalist who covers the story.

    I was told by more than one colleague that I was mad to even think about writing about it.

    The story of ME is in fact the story of a war, a bizarre medical conflict that is about 30 years old and which shows little sign of abating.

    If you take the "wrong" side in this war, the one backed by the vast majority of scientists and doctors, you will receive abuse and harassment -- or worse.

    Doctors have been accused, falsely, of child abuse.

    Death threats, veiled and overt, are common.

    You don't even need to take sides.

    You can try to be scrupulously fair, but even so, a word out of line, a slight deviation from what one side of the War sees as the gospel truth, will bring the furies down upon you.

    On one side in the War are the doctors and scientists (most of them, anyway), and the bulk of the sufferers and their carers.

    These people believe that ME, which affects about 600,000 people in Britain, is a real and deeply mysterious disease that is often associated with psychological problems.

    The primary symptom of the disease is fatigue, which can leave sufferers bedridden and unable to work or study for months, or even years.

    Most doctors who treat ME - also known as chronic fatigue syndrome (CFS) - believe that certain treatments, notably cognitive behavioural therapy and exercise therapies, provide the best hope for many sufferers to get better.

    Earlier this year a ground-breaking paper was published in

    ~~~~~~~~~~~~~
    Caption: You and your psychiatrist colleagues will start to become increasingly isolated

    HATE CAMPAIGN
    ~~~~~~~~~~

    the journal Psychological Medicine showing just that.

    These people are in the majority and they all think the ME war is, well, crazy. .

    On the other side are the activists.

    These people say that any attempt to label ME as a "psychiatric" illness is to denigrate the suffering and to downgrade the disease as "all in the mind".

    Fiona Fox, head of the Science Media Centre, believes that the extremism of some ME activists is skewing a whole branch of medicine.

    "We were deeply shocked to discover a few years ago that many scientists doing research on ME/CFS were too afraid to speak out in the media about their work, because of a campaign of harassment and intimidation," she says.

    "Worse still, some had decided to leave the field completely."

    Writing about all this, let alone working in the field, is challenging.

    Not only must one brace oneself for the inevitable backlash, but just asking questions about ME is to unleash a heartbreaking, unmanageable tsunami of , information, claims and counterclaims, reams of data, Websites running to hundreds of thousands of Words, terrible, unreadable books and pamphlets, a maelstrom of fact, factoid, obsession, conspiracy and myth.

    My first, rather uncharitable, thought was that for a group of people whose primary symptom is a lack of energy, the activists in the ME community seem to have the persistence and determination of Hercules himself.

    To many of them, ME is no less than the "second Aids", a "hidden" plague probably caused by a virus similar to HIV, and which may be spreading by infection.

    So there was some jubilation when, in 2009, the respected US journal Science published a paper showing that a mouse retrovirus called XMRV had indeed been identified in more than two-thirds of ME patients.

    This was, it seemed, a hugely important discovery.

    Patients might be able to be cured by taking the same anti-retroviral drugs now used so successfully to treat Aids.

    The scientists, led by Dr Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease in Nevada, were confident this was the breakthrough millions of sufferers had been praying for - that the true cause of ME had been found.

    Except that it hadn't.

    At the end of 2011, a hugely embarrassed Science retracted its XMRV paper after scientists at nine separate universities who had been asked to try and replicate the findings, found they could not do so.

    It turned out that the original findings were, as many researchers had suspected,highly dubious.

    For a start, it was later shown that the "Virus" came from laboratory contamination, and was possibly not even a virus at all.

    Questions were raised about the motives of the scientists behind the discovery when it turned out that, days after publication, the lab was licensing a "test" for XMRV aimed at ME patients at $400 - $550 a pop, a

    ~~~~~~~~~~~~~~~~~~~~~

    ALL IN THE MIND? Top left:Charles Shepherd, advisor to the ME Association says too much funding goes into researching psychological treatments for ME

    Below: Professor Colin Blakemore has argued the opposite.
    ~~~~~~~~~~~~~~~~~~~~~


    "very questionable" move, according to John Coffin, one of the scientists who tried to replicate the Mikovits results.

    Hundreds of patients are thought to have been tested, and it has been claimed that the lab netted tens of thousands of dollars from the tests, which were based on purely preliminary research findings.


    The extremists erupted in fury.

    XMRV had been the great White hope, proof at last that this was a "real" disease.

    Now it was back to the drawing board for those who believed they were being demonised for having a make-believe illness.

    ME is, everyone agrees, ghastly.

    Symptoms include extreme fatigue, muscle pains, depression, respiratory problems and general malaise.

    Sometimes, patients are bedridden and have to be fed through a tube.

    The name myalgic encephalomyelitis means "muscle pain and inflammation of the brain and spinal cord", but there is no evidence that this is present in patients, so most doctors prefer the term chronic fatigue syndrome.

    There is no diagnostic blood test, no identified pathogen, although it is clear that ME can be triggered by viral infections, especially glandular fever.

    Few people will speak on the record about the extent of the threat to the ME researchers.

    There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat, but no one at Scotland Yard will speak publicly about this.

    Publicity, it seems is to be avoided at all costs, and the less said about this bizarre war, I am told, the better.

    I understand that a list is often drawn up in these circumstances - to protect those who might be under threat from potentially dangerous activists of any hue, not just those who are objecting to scientists undertaking research into ME.

    Some argue that circulating lists of activists - who in many cases might be mentally ill - has implications for civil liberties.

    But given the nature and scale of the threat, it is unsurprising that a set of the most worrying names exists- and it is at the disposal of the authorities.

    After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums.

    They are divided into three categories: militant, radical and active.

    Most
    ~~~~~~~~~~~~~
    How are you evil bastards gonna explain away yet more evidence showing physical abnormalities of M.E. patients ?

    HATE CAMPAIGN

    ~~~~~~~~~~~~~


    are prolific posters on the various ME forums and Facebook pages (interestingly, Twitter seems largely immune).

    In Britain the number of real extremists probably amounts to about 50- 80 people (compared with the 25 or so hard-core animal—rights extremists identified by the authorities), yet they wield influence out of all proportion to their numbers.

    The greatest anger - and level of threat - is reserved for apostates.

    One such was the British virologist Myra McClure, who works at Imperial College London.

    Professor McClure suspected that ME may be linked to that mouse retrovirus, making her an ME heroine.

    But in 2010, two years before Science published its retraction, she published a paper in which she showed that the XMRV- ME link probably had no scientific basis.

    As a result, she was subjected to a campaign of horrible abuse and threats.

    One activist wrote relentlessly that he was imagining watching her drown.

    And a planned visit to America to speak at a conference was cancelled after "credible" death threats were made by American ME militants.

    I contacted her, through a friend of hers, to request an interview, to be told that she "really wants to put this entire nightmare behind her".

    The most high-profile combatant of the ME war in Britain is Wessely.

    He is a politically incorrect figure who pulls no punches when describing his tormentors, shaking his head in disbelief at their energetic vitriol.

    It is perhaps this impiety that has got him into trouble.

    "It is a religion, they have saints and apostates," he says.

    "I was at a party with someone who did not know me and we got talking - it dawned on me it was time to back off."

    Wessely has been accused of just about every transgression going, including patient abuse and even, bizarrely, throwing a child into a swimming pool to check if his paralysis was genuine.

    One website describes him as "a dangerous madman... an obvious sadist".


    (i.e. on a Dutch website: http://maartens.home.xs4all.nl/log/2010/NL100411a.htm -Ed)

    Many online postings compare Wessely to the Nazi death-camp doctor Josef Mengele, perhaps unaware that two of Wessely's grandparents were murdered, on the same day, in Auschwitz and indeed may have been selected for the gas chambers by Mengele himself.

    The strangest thing, he says, is the fact that when it comes to his ME patients, he gets no complaints at all.

    "Yet when I switch on the internet I get all of it, this strange, weird world which does not reflect the real world of south London and my patients."

    Wessely lists his tormentors, who cannot be named for legal reasons.

    Convictions, for harassment or threatening behaviour, are difficult to obtain.

    The person who telephoned him to say, "We will come and get you soon", did not leave a name or address, nor did the man who said he was going to "come and cut your balls off

    Wessely says the "yuppie flu" tag - a common derogatory nickname for the disease - is a misnomer. CFS is not a disease of well-off malingerers, but, like most illnesses of mind and body, strikes disproportionately at the poor and the disadvantaged.

    As for the 2009 XMRV paper, Wessely snorts with derision.

    He is sceptical of Mikovits, the American lead author of the paper, who was arrested in November 2011 for allegedly stealing material from her former lab and who spent a weekend in jail.

    She was released without charge.

    "We all knew the paper was doubtful, those rates are far too high to be credible, and I was pretty confident it couldn't be replicated. I was surprised to discover she was offering blood tests the same day the paper was released.

    Four weeks later, she pops up sharing a platform with Andrew Wakefield [the discredited British doctor who purported to show a link between the MMR vaccine and autism]."

    I am told there is a substantial crossover between ME activism and the anti-MMR brigade.

    Another person who has incurred the the wrath of ME extremists is the Bristol - based consultant paediatrician Esther Crawley.

    She runs the largest child ME treatment centre in the world, and was the first to recognise that the disease can strike at primary-school age.

    Crawley has devoted her life to treating sick children with this debilitating illness.

    In 2010, Crawley's team got a grant to investigate a treatment called the "lightning process", a controversial technique based on neurolinguistic programming.

    Not all doctors are convinced that the lightning process is credible, yet Crawley insists it is worth investigating.

    "As children and families are receiving it, we need to know whether it works or not.

    If it doesn't work or causes harm, we need to know," she says.

    "When we announced that we had received funding in 2010, the abuse started. It started with emails. And very difficult telephone calls. They all said we should concentrate on XMRV research.

    "But the results of the XMRV research were terrible... Mikovits seemed to be implying that children go onto antiretrovirals [powerful drugs used to treat HIV infection, with strong side effects]. I thought this was completely immoral.

    I gave a talk in the West Country.

    I pointed out the massive conflict of interest.

    The talk was doctored and sent out as a DVD.

    It had me saying all sorts of things I didn't say."

    Things soon got worse for Crawley - death threats, mostly online.

    Overwhelmingly busy, she hoped the threats would go away and initially ignored them, but eventually she began to take notice and even considered stopping her work.

    "I got nasty phone calls, nasty emails. This went on for about a year.

    I contacted the police.

    We had advice and training regarding parcels and so on.

    I am not going to overplay it, but I felt a bit anxious going home. I have children."

    She showed me some of the emails.

    In one she is referred to as an "evil bastard".

    Another reads: "To those of you who are responsible for preventing us sick ME sufferers from getting the help we need, wasting £5m on flawed bullshit and trying to discredit the real scientists who are trying to help us, you will all pay."

    Is "you will pay" a threat?

    Crawley thinks it is.

    Scientists often find their work attracts controversy, even hatred.

    Professor Colin Blakemore is an Oxford neuroscientist whose work on live animals has famously led to letter bombs, death threats and a barrage of abuse from anti-vivisection extremists.

    But even he, probably Britain's most reviled researcher, was unprepared for the virulence of the ME campaigners.

    "I didn't get bombed, it is true, but it was almost as bad," he says.


    "This made no sense at all."

    When Blakemore was in charge of the Medical Research Council, he made a series of recommendations about the funding of research into ME.

    After concluding that the bulk of cash would be most profitably spent investigating

    ~~~~~~~~~~~

    HATE CAMPAIGN

    ~~~~~~~~~~~



    psychological treatments, there was outrage from the "community".

    "I remember being accosted at Liverpool railway station [by an angry activist]," Blakemore says.

    "I was completely unprepared."

    The ME extremists have, in their own terms, been hugely successful.

    Only a tiny minority resort to actual threats.

    More often, scientists who engage in "psychological" research are subjected to a war of attrition.

    The claims always amount to nothing, yet dealing with them - and with hundreds of Freedom of Information (Fol) inquiries (as, by law, all publicly funded scientists are required to do) can eat up so much time that there is little
    left for actual research.

    No one argues that it is wrong for medical research to be open to public scrutiny; indeed, all the researchers I spoke to wanted their findings to be openly disseminated and discussed.

    But the desire to liberate information has had some unexpected and unwelcome consequences.

    "A lot of people have left the field because of this," says an exasperated Professor Peter White, a psychiatrist at Queen Mary, University of London, and one of the world's leading researchers in the treatment of ME.

    "I spend a quarter of my time dealing with Fol requests, complaints and other harassment, rather than doing more research and treating patients."

    In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs.

    William Reeves, an American virologist and co-discoverer of the link between human papilloma virus and cervical cancer, gave up his CFS-related work at the Centers for Disease Control and Prevention after a torrent of vitriol was unleashed upon him for daring to suggest that the condition was "stress-related".

    After Professor Reeves died of a heart attack last August, there was celebration on some ME forums.

    "He's not really dead, it's all in the mind," was the posting on dailystrengthorg.

    While we can all agree that death threats and abuse are beyond the pale, might the ME activists (like the animal-rights extremists) have at least an intellectual point?

    It is certainly the case that the medical establishment has not treated ME with the same seriousness as other diseases, such as multiple sclerosis.

    Sometimes, it has been argued by patient groups, this has resulted in sufferers being denied disability payments.

    And the hypothesis that ME is, at heart, a viral infection rather than a psychiatric illness is scientifically respectable and certainly worth investigating.

    Viruses, rather than lifestyle issues or genetics, are now suspected to be linked to a host of conditions, from schizophrenia to heart disease.

    There is no prima facie reason to believe ME is not the same and, while XMRV is not the cause, another virus could be.

    Last month, a new initiative, the UK CFS/ ME Research Collaborative, was launched to investigate all aspects, including potential causes and treatments, of this enigmatic disease.

    According to White: "Many of our patients feel that their doctors have not served them particularly well. They have a real need to legitimise their illness as something beyond their control. There is real anger at not being believed."

    Yet mental illness is as "real" as influenza or cancer.

    Try telling someone with severe paranoid schizophrenia that they are not ill.

    Are ME extremists not simply denigrating those with acknowledged mental illnesses by pouring scorn on psychiatric diagnoses?

    One high-profile ME spokeswoman is the sociology lecturer Angela Kennedy, who insists she does not support the antics of the violent militants.

    "As an academic myself, I unreservedly condemn any harassment and abuse of researchers.

    However, raising reasonable objections to something through legitimate means - such as Fol requests or official complaints - is not harassment or abuse."

    Indeed, she claims, the abuse is often in the other direction: "Hate speech is being waged against people with ME".

    Few active ME campaigners are willing to comment on the record.
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  4. joyce.swing

    joyce.swing elmtree

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    Thanks for printing out the article. I dont subscribe so couldnt see it online. what kind of paper is the Sunday Times? A tabloid? I hope....
    I am thankful not to live in the UK.
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There are so many erroneous statements in this article, but here is one on which I have some personal knowledge:

    QUOTE: "The person who telephoned him to say, "We will come and get you soon", did not leave a name or address, nor did the man who said he was going to "come and cut your balls off" END OF QUOTE

    I once received an abusive phone call, interestingly, in the current context, from someone objecting to an ad in a student magazine about an authorised student society that campaigned legally and peacefully against the university's use of animals in research and education. I had been thrown into the position of secretary, so my phone number was on the ad.

    I telephoned the police after writing everything I could remember about the call, including the number which I obtained by dialling 1471. A policeman visited and took a statement. After a lot of to-ing and fro-ing, they finally traced and cautioned the caller. However, they refused to give me his name. The point is - they were able to trace him just from a phone number. I think it is probable that a phone company would be able to trace a number even if it was withheld, as long as they knew the time it was received.

    So Wessely's abusive callers traced and arrested? And Crawley's? If not, why not?

    I also wonder why they go on about XMRV. I was always sceptical of this, as I could not see why a previously-unknown virus was needed to explain ME, when there was already plenty of evidence of causation from a collection of other causes.

    I also wonder when Wessely became a 'leading scientist'.

    There are some better, albeit vague, statements towards the end, but I am puzzled by this statement:

    "Few active ME campaigners are willing to comment on the record."
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Oh, here we go, latest attempt to draw the "sheeple's" attention away from the most recent BIOLOGICAL evidence!
    every time we see biological research published in the mainstream, we see this bunch whinging.
    *makes a rude gesture in the air, shuffling his fist* :p

    The wheels of justice grind exceedingly slow, but they grind exceedingly fine....

    *munches popcorn while waiting for the psychobabblers to be hauled off to jail as their house of cards falls around their ears one day, as so many "Establishment" scandals and evils have lately* ;)
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The Sunday Times is a respected and supposedly-serious newspaper.

    The article made a rather inflammatory statement about the US too:

    "In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."
  8. joyce.swing

    joyce.swing elmtree

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    Yes and I wonder who & what jobs?
  9. Valentijn

    Valentijn Activity Level: 3

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    Sounds like the author is trolling. There's not even a pretense of balance or impartiality.
  10. user9876

    user9876 Senior Member

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    He is writing for a Murdoch paper so I wouldn't expect balance or impartiality or accuracy.
  11. biophile

    biophile Places I'd rather be.

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    I am disappointed because I had believed that Hanlon may have held some promise, as he previously showed some signs of willingness to learn after admitting ignorance. Perhaps Angela Kennedy was correct before when she expressed concerns it was going to be a stitch up job. Her quotes in the recent article are helpful.

    Hanlon fails to explore what the intellectual point is, apart from some weak discussion about the realness of mental illness and the dismissal of patients. The only "science" mentioned is the "ground breaking" PACE Trial recovery results. The article mentions nothing at all about the methodological issues involved which patients and their supporters find with the "psychological" research, it is all about the alleged crazy militants and their supposed denigration of mental illness.

    No mention that other researchers have joined us in some way or another. Some of the previous coverage at least had token efforts, but this article has nothing on it despite Hanlon's claimed intentions during writing it. Much of the behaviour outlined/rehashed is indeed concerning and unacceptable if occurring, but it is difficult to know what is factual anymore.

    I do not believe that Esther Crawley was "the first" to recognize that CFS occurs in children. I am skeptical that there exists a "specialised unit at the Metropolitan Police dedicated to monitoring the threat", unless that unit does many tasks other than monitoring alleged ME extremists. Colin Blakemore has experienced harassment from animal activists and still claims that the ME harassment is "almost as bad" as actually being bombed.

    Perhaps if he published the data on the PACE Trial as originally promised then there would not have been as many FOIs in the first place? We have not bought the spin on improvement and recovery.

    50 to 80 "real extremists" sounds like a made up estimate which is not based on those actually "identified by the authorities" as the article's wording misleadingly implies. These alleged extremists supposedly wield massive influence. ... really? Who and where are these people? How can we combat the supposed militancy or avoid the supposed "propaganda" if we do not know anything about who is behind it?

    I am not surprised that some of this behaviour goes on and wished it did not, but I bet there are innocent patients out there now wondering if they are now on some watch list of alleged extremists because they have had harmless interactions.

    Ah finally, the full quote to the infamous "you will all pay" comment!

    There has been much coverage on ME extremism in the UK, but I do not recall right now there being coverage before on ME extremism in the USA, so I do not know how it can be "even more virulent" when the press seems more free. I guess it could be a misleading reference to Reeves being replaced by Unger after criticism for his failures at the CDC?
  12. Kina

    Kina Moderation Team Lead

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    On another thread, I found the correspondence between Angela Kennedy and Michael Hanlon.


    Well that was a big huge misrepresentation re: writing an article about ME patient-support groups. It's about smearing ME patients (again) by generalizing the behaviour of a very small group of people to a whole population.

    This is his next email to Angela Kennedy:

    Where is the science in his latest article? But then again where is any hint of good honest journalism in that article?

    This comment speaks volumes about his attitude and his agenda.

    His current article is just a rehash of other fiction pieces he has written. It's just irresponsible journalism. I see interviews from the usual crew Wessely, Crawley etc but where are the interviews with prominent doctors who treat ME patients on a daily basis -- oh yes that's right, it would be too much to add to this article that there are doctors (and researchers) who have never been threatened by people with ME.

    Today is a quadruple face palm day.

    Shame on the Sunday Times for actively promoting the discrimination of a group of people.
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Could he be hoping to get a backlash for some reason? Perhaps so as to lend support to the claims that we are a load of deranged psychos?

    A question has occurred to me. As most of those accusing people of attacking them are psychologists, have they yet come up with a theory to explain why ME supposedly includes this tendency to aggression and/or a persecution complex? This sort of thing should be their area of expertise. Indeed, the first thing to do would have to be to find evidence that such tendencies exist. Wessely himself has already published a paper that concludes that people with ME do NOT have certain specific personality traits.

    As for the claims that there are no specific blood tests for ME, the psychoquacks are partly to blame for the fact that these have been slow to develop, due to their long-term domination of the discourse and the funding.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes - imagine substituting the word 'Jews' or 'Jewish', or 'gypsy/black/Muslim' for some of the references to people with ME or the 'ME community'. Then the severity of the denigration should be clear to everyone.
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  15. snowathlete

    snowathlete

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    a new comment added to their site in response:

    "There is of course no suggestion that these alleged death threats came from researchers, doctors, or the vast majority of citizens with ME/CFS.
    There is a danger that Simon Wessley’s repeated focus on an unknown person or persons, detracts from the scientific communities embryonic efforts to identify the cause(s) of ME/CFS.
    The fact that ME/CFS has been classified by the World Health Organization for 50 years as a Neurological disease, and has been accepted as such by the UK government, DWP and NHS for more than a decade, it is therefore a surprising omission from this article.
    Given that Professor Wessley must be aware that his views contradict the prevailing status of the disease, it is surprising that he focuses on a psychologically unbalanced individual, who sent him a letter some years ago, rather than addressing the 5,000 or so peer-reviewed articles that provide evidence contrary to his lonely position - including that reported in this paper just last week showing significant evidence of biological muscle abnormalities in patients. The idea that a death threat somehow validates someone's views is unsustainable."
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  16. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    I really think he is. The article is so over the top that a lot of people who don't know what ME/CFS is at all will read it and wonder why he goes to such efforts to illustrate everyone with a disease as child-molesting cat-killers who make death threats to the people trying to help them.

    Without knowing WHY people with ME/CFS are upset about the psychologization, it is a very incomplete article, and people will pick up on it. He's tell half a story, and we aren't the only ones who will notice - everyone else will be scratching their heads and wondering how such a big question remains in such a lengthy article.
    leela, Tito and beaker like this.
  17. Valentijn

    Valentijn Activity Level: 3

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    Or even just another set of patients with a different disease. He's really going too far for anyone to take him seriously.
    beaker likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    He said this about the lone ME patient in the entire country willing to talk to the reporter (yeah right):
    Sorry, but an ME patient drinking heavily? I can't even handle a sip without feeling awful. Anyone heard of this Laurence Swift before?
    onceclever and justinreilly like this.
  19. Bob

    Bob

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    The timing of this article is no coincidence. It comes immediately after the UK's research collaborative was announced, in which 120 researchers turned up to the conference, many of them new to the field. Prof Stephen Holgate (the catalyst for setting up the collaborative) has said that ME needs new researchers from other fields to get involved in ME research, and to apply for funding grants. But of course, the psychiatrists don't want their funding siphoned off into meaningful biomedical research. A good scare story about extremists attacking all decent ME researchers is bound to scare a few potential new researchers away.

    I seem to remember that the previous similar obnoxious article was published immediately after a good news event. I can't remember the details though.

    I don't know if there's much we can do about this sort of thing. It is a successful highly orchestrated campaign, and it's all about funding, and status. Perhaps it's best for us to focus on the recent positives, such as the FDA conference, the UK research collaborative, and what the Open Medicine Institute is doing? I just don't know what we could do that would make any difference to people publishing this sort of desperate, pathetic and unscientific article.

    BTW, Michael Hanlon, the author, has previous form:
    "The oddest thing is the refusal to accept that a psychiatric illness is a real illness. I have known people with bipolar disorder and schizophrenia. Their problems are 'all in the mind' but only in the sense that someone with lung cancer is dying of something 'all in the lungs'. These are all real diseases. If your brain is sick you are just as ill as if your liver is sick. There seems to be a lot of people out there saying that mental illness is not real. Surely this is offensive to people suffering psychiatric illnesses as it would be to say ME is not real?"
    http://hanlonblog.dailymail.co.uk/2012/09/chronic-fatigue-syndromeme-further-response.html
    taniaaust1, beaker, natasa778 and 2 others like this.
  20. Bob

    Bob

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    An excellent response.
    beaker likes this.

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