Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

the UK Times escalates it's smear campaign against us

Discussion in 'General ME/CFS News' started by Min, Aug 25, 2011.

  1. Min

    Min Guest

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    UK
    http://www.timeshighereducation.co.uk/story.asp?storycode=417219

    note how knife is now knives and scientistis now scientists, with no evidence provided that this ever happened let alone involved anyone with M.E.

    comments can be left

    Dr Speedy has copied the accompanying offensive cartoon to the article, that was removed from the site earlier:

    http://networkedblogs.com/m6ogK
     
  2. Enid

    Enid Senior Member

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    She and they can rattle on (and any journalists set on the malicious) - out of time now - events, findings, research show the extent of pathologies and infections in ME. We have a very special group of very dedicated Docs and Researchers now. Hot air from the rest whinging not only bores but now ignored. They are simply short of things to fill space - nothing more constructive to do with their time than try to waste ours.

    She might of course stop and ask herself what she said or did that brought such opposition - my Neurologist told me he didn't understand it all, thinking it viral and apologised - so no reason for antipathy.
     
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Or they are trying to make people not think about phone hacking scandals!
     
  4. gregf

    gregf Senior Member

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    Fantastic replies to the article guys, really fantastic.
    We're winning, the truth will come out.
     
  5. Sasha

    Sasha Fine, thank you

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    You're right there, gregf - the THES is really getting a kicking from patients. There's some great stuff on there, including one poster who quoted their own rules back at them (about, for example, not discriminating against the disabled).

    Reading the comments has cheered me up no end! The UK papers seem to have been running a hate campaign against people with ME for the last few weeks.
     
  6. KnightofZERO

    KnightofZERO

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    Instead of George Orwell's "Two Minutes Hate" we have the "Two Weeks Hate." One sad thing is that the Psychiatry Lobby which believes in Cognitive Behavioral Therapy as curative--is probably trying to maintain its hegemony over research into our illness by attempting to publicize it as "toxic" to other researchers...

    Hopefully like in the Discover Blog the people who see this will be incredulous of some of the ridiculous claims presented as facts.

    Also Wessely saying that line about "safer in Afghanistan" is an insult to all of the brave British men and women who serve and, who have died, there. Him using it as a political point to hit us over the head goes against all principles of decency...
     
  7. meadowlark

    meadowlark Senior Member

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    Toronto, Canada
    What is the Times Higher Education Co.? Is it a section of the Sunday Times?
     
  8. Sasha

    Sasha Fine, thank you

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    Hi meadowlark - it's part of The Times group but comes out weekly as a stand-alone publication and is aimed at people working in higher education - universities, colleges and so on - and is widely read among them for the job adverts as well as the articles. It is regarded as reasonably prestigious (but not any more by me, after this shameful episode).
     
  9. Valentijn

    Valentijn Activity Level: 3

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    Looks like they've closed it to further comments ... at least, I don't see a way to make comments anymore.
     
  10. Yogi

    Yogi Senior Member

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    The comments are so good they are copied here for future reference and incase they are removed:

    Simon 25 August, 2011
    I'd terrorise a journalist, but they wouldn't get it.

    Eric 25 August, 2011
    Dear THE

    Why do you assist in spreading this one-sided, misleading story about alleged ME "extremists" terrorising scientists and hindering the scientific process? Nothing could be further from the truth. I have ME (don't live in the UK though) and don't know if these incidents that were described in some articles really happened or not (stalking, verbal abuse, etc.). But what matters here is to see the bigger picture. ME affects an estimated 17 million people around the world. Many of them are unable to work due to the illness. The suffering and economic costs are stellar. While the exact cause or mechanism behind the illness is not yet known, there is a large number of studies showing biological abnormalities in people with ME/CFS, ranging from abnormal proteins in the cerebrospinal fluid to immunological abnormalities, to abnormal EEG, to mitochondrial dysfunction and the list goes on. Harvard professor A. Komaroff says the debate wheter ME is a physical disease or not has been over for a long time. Stanford University calls CFS (that's the term mainly used in the US) "infection-related", at least in a subset of cases. There have been a number of studies and a placebo-controlled, double blinded drug trial at Stanford that showed a long time treatment with antiviral drugs improves the condition. So what is the scandal here? A small number of desperate, ill, suffering people without a cure and without sufficient recognition by the medical and social security system being pushed over the line by their hoplessness and anger at a small number of researchers denying their condition as what it is and telling them it's psychological or the fact that millions of people are ill and being neglected? The funding for research into ME is ridiculously small, compared to alomst any other disease and if research is conducted a good percentage of that looks in the wrong direction (in the UK) and is conducted by exactly the people portraying themselves as the victims here, who are actually failing miserably in the job, mildly put. ME sufferers are not against research, much to the contrary, they want nothing more than good, serious research. Unfortunately there is not enough of that in the UK.

    Awful 25 August, 2011
    What kind of sick twisted newspaper are you running to attack people with an incurable disease? I will make sure everyone I know never buys your paper again. Making up stories about threats is dispicable. You are spreading hatred and bigotry. Do you want ME patients to die, would it give you pleasure? Really what kind of upbringing creates people who would do this to the sick?

    Mary Schweitzer, Ph.D. 25 August, 2011
    What is wrong with you people? A 20-year-old girl took her life this week because the psychiatric hospital her doctors sent her to made her worse, not better. Has it occurred to you that depression was as
    Inappropriate a diagnosis for someone with M.E. as hysterical paralysis was for M.S. Just consider the possibility, and afterwards consider the repercussions.

    This girl and so many others have been left completely bereft of hope. This isn't funny. If there have been serious threats made to these people, GO TO THE POLICE. But don't use it as an excuse to make fun of seriously ill patients who have been given no hope, no help, not one drop of kindness, from the medical system.

    Eric 25 August, 2011
    Here is some real information about ME/CFS, for those who are interested. It's worth it:

    http://www.masscfids.org/videofiles/Komaroff/Komaroff.html

    http://chronicfatigue.stanford.edu/

    http://www.youtube.com/watch?v=cZntAs_isEw&feature=relmfu

    http://www.youtube.com/watch?v=Riybtt6SChU&feature=relmfu

    Myra 25 August, 2011

    In The Face of Terrorism, Fundamentalist Researchers Remain True To Their Faith
    by an Impartial Observer

    Professor Simon Wessely has recommended that the UK government go to Orange Alert due to the threat of terrorist violence from a new breed of militants - people who suffer from chronic fatigue syndrome.

    "Do not underestimate the Militant Sick." says Wessely, a London-based psychiatrist. "There is a whole cadre of extremists out there, who are even more deluded than the average CFS patient. We must consider them a threat to national security."

    Many of them "incite violence with rabid conspiracy theories and anti-Wessely propaganda", according to Wessely.

    These include the assertion that Wessely and some of his colleagues have ties to insurance giants who do not want to have to pay out if CFS/ME is universally recognized as a physical disease.

    "The idea that some of us are Chief Medical Officers for insurance giants is ridiculous", says Wessely's colleague Peter White, Chief Medical Officer for an insurance giant.

    Yet, as this reporter reminded Wessely, members of a 2006 Parliamentary Inquiry group came to the same conclusion that many patients have about possible vested interests, describing them as "an area for serious concern". That group included a Minister of State for the Environment (The Rt Hon Michael Meacher MP), a former President of the Royal College of Physicians (Lord Turnberg), the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge).

    "Sociopaths, every one of them." says Wessely. "It is indeed a serious concern that there is a CFS terrorist cell in Parliament."

    Could it be argued, using Wessely's own logic, that the active efforts by the so-called "psych lobby" to prevent research into a physical cause of CFS/ME, to discourage doctors from ordering laboratory tests for CFS/ME patients, as well as to separate patients from 'enabling' influences such as like-minded family members and support groups, as well as the sporadic use of forced psychiatric hospitalization, qualify as state-sponsored terrorism?

    "We are not threatening patients with death", replies Wessely. "We are just saying that if they don't cooperate, we will force them to do things that they think might kill them, or make them want to kill themselves. I don't see why we can't agree to disagree on that."

    Most biomedical researchers disagree with Wessely and his associates. Some argue, for example, that evidence suggests that CFS and ME patients could suffer serious damage or even death as a result of the exercise programs prescribed by the psychosomatic school. On the other hand, they point out, there is no scientific evidence that people can imagine themselves into debilitating chronic illness.

    "Shhh!" urges Wessely in reply, grabbing a copy of the DSM-IV and appearing to cover its 'ears'. "Not in front of the Book!"

    When asked if he himself and like-minded professionals might be the real extremists, Wessely's face hardens and he throws open the DSM-IV, pointing to the definition of somatoform disorder.

    "I believe the words in the Book." he says firmly. "It is what it says it is. No evidence for a physical cause for CFS can change my mind, any more than your ridiculous 'science' can convince me that the Earth is older than a few thousand years. If that makes me a fundamentalist or an extremist in some people's eyes, so be it."

    "Yo, you don't KNOW me, black! You don't KNOW me!" yells Michael Sharpe, a psychiatrist, to this reporter, who is white.

    Like some other fundamentalists, Wessely says he feels safer in Iraq than in, say, Britain.

    "Everyone's out to get me here - especially Satan." When asked who Satan is, he says "We believe he's taken the form of a woman in a bed in Dorset or maybe Cornwall, pretending to be sick."

    "Don't be fooled by appearances - there are few things in Nature as deadly as a bedridden CFS patient." he adds. "They're capable of anything. Once you tell a sick person they're not sick, and deny them benefits and medical treatment, and tell their family and their friends and their doctors and their government that they're not sick, and insist that they exercise or you'll take them away from their parents or lock them up in psych wards if you have to, they become quite unreasonable."

    "Bitches be stalkin me/ tryin' to knife me/ I can't be silenced/ by no threats of vi'lence", explains Sharpe, nodding to an imaginary beat.

    Many researchers, according to Wessely, have been threatened. One of them is purportedly Myra McClure, who co-authored a paper with Wessely last year which concluded that British patients cannot have an American retrovirus.

    "Somebody threatened to rearrange Myra's teeth!" he says. When asked if that threat might in fact have come from her dentist, he says "Possibly, but either way it really shook her up."

    "Sum fool walked up and punched me in my grill yo" says Sharpe, Senior Lecturer in Psychiatry at the University of Edinburgh. Asked if he reported this to the police, he pauses and then waves his hand dismissively. "EFF the po-lice, man." he growls.

    "I resent the implication that we are manufacturing these death threats." snaps Wessely. "That's crazy."

    How many death threats has Wessely himself received? "Millions. Dozens. Several. I could show you a couple." he says.

    He produces a note written in crayon. "This came from a seven year old girl who a colleague of mine managed to separate from her mother, who was abusing her by telling her she was sick with ME." The note says 'My mummy says you a bad man and your friend tried to took me away from her so I hate you and when I grow up I'm gonna beat you up.'

    "That one still makes me shudder," says Wessely.

    He reads another aloud. 'Leave me alone, leave my friends alone, or I will bludgeon you to death with a bottle of Prozac.' This reporter notices that the note is written on Wessely's own stationery. "Err.. yes.. that's a particularly disturbing feature. This individual must have broken into my office, stolen my stationery, and used it to write a letter to me." This reporter also points out that the note appears to be in Wessely's handwriting and is also signed 'Simon Wessely'.

    Wessely sucks in his breath for a moment and says "This individual is sicker than I thought.

    Lyn 25 August, 2011
    Researchers Face Threats from Militant Islamic Extremist Terrorists

    "Err.. not quite." says Simon Wessely, correcting the title of this piece.

    Researchers Face Threats from Militant Survivalists?

    "No.."

    Researchers Face Threats from Giant Sea Scorpions?

    "No, you're getting farther from it, now.."

    Researchers Face Threats from Militant...

    "Patients."

    Militant... Patients? Seriously?

    "Err.. yes."

    (...)



    In The Face of Terrorism, Fundamentalist Researchers Remain True To Their Faith

    by an Impartial Observer

    Professor Simon Wessely has recommended that the UK government go to Orange Alert due to the threat of terrorist violence from a new breed of militants - people who suffer from chronic fatigue syndrome.

    "Do not underestimate the Militant Sick." says Wessely, a London-based psychiatrist. "There is a whole cadre of extremists out there, who are even more deluded than average CFS patient. We must consider them a threat to national security."

    Many of them "incite violence with rabid conspiracy theories and
    anti-Wessely propaganda", according to Wessely.

    These include the assertion that Wessely and some of his colleagues have ties to insurance giants who do not want to have to pay out if CFS/ME is universally recognized as a physical disease.

    "The idea that some of us are Chief Medical Officers for insurance giants is ridiculous", says Wessely's colleague Peter White, Chief Medical Officer for an insurance giant.

    Yet, as this reporter reminded Wessely, members of a 2006 Parliamentary Inquiry group came to the same conclusion that many patients have about possible vested interests, describing them as "an area for serious concern". That group included a Minister of State for the Environment (The Rt Hon Michael Meacher MP), a former President of the Royal College of Physicians (Lord Turnberg), the Deputy Speaker of the House of Lords (the Countess of
    Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge).

    "Sociopaths, every one of them." says Wessely. "It is indeed a serious concern that there is a CFS terrorist cell in Parliament."

    Could it be argued, using Wessely's own logic, that the active efforts by the so-called "psych lobby" to prevent research into a physical cause of CFS/ME, to discourage doctors from ordering laboratory tests for CFS/ME patients, as well as to separate patients from 'enabling' influences such as like-minded family members and support groups, as well as the sporadic use of forced psychiatric hospitalization, qualify as state-sponsored terrorism?

    "We are not threatening patients with death", replies Wessely. "We are just saying that if they don't cooperate, we will force them to do things that they think might kill them, or make them want to kill themselves. I don't see why we can't agree to disagree on that."

    Most biomedical researchers disagree with Wessely and his associates. Some argue, for example, that evidence suggests that CFS and ME patients could suffer serious damage or even death as a result of the exercise programs prescribed by the psychosomatic school. On the other hand, they point out, there is no scientific evidence that people can imagine themselves into debilitating chronic illness.

    "Shhh!" urges Wessely in reply, grabbing a copy of the DSM-IV and appearing to cover its 'ears'. "Not in front of the Book!"

    When asked if he himself and like-minded professionals might be the real extremists, Wessely's face hardens and he throws open the DSM-IV, pointing to the definition of somatoform disorder.

    "I believe the words in the Book." he says firmly. "It is what it says it
    is. No evidence for a physical cause for CFS can change my mind, any more than your ridiculous 'science' can convince me that the Earth is older than a few thousand years. If that makes me a fundamentalist or an extremist in some people's eyes, so be it."

    "Yo, you don't KNOW me, black! You don't KNOW me!" yells Michael Sharpe, a psychiatrist, to this reporter, who is white.

    Like some other fundamentalists, Wessely says he feels safer in Iraq than in, say, Britain.

    "Everyone's out to get me here - especially Satan." When asked who Satan is, he says "We believe he's taken the form of a woman in a bed in Dorset or maybe Cornwall, pretending to be sick."

    "Don't be fooled by appearances - there are few things in Nature as deadly as a bedridden CFS patient." he adds. "They're capable of anything. Once you tell a sick person they're not sick, and deny them benefits and medical treatment, and tell their family and their friends and their doctors and their government that they're not sick, and insist that they exercise or you'll take them away from their parents or lock them up in psych wards if you have to, they become quite unreasonable."

    "Bitches be stalkin me/ tryin' to knife me/ I can't be silenced/ by no
    threats of vi'lence", explains Sharpe, nodding to an imaginary beat.

    Many researchers, according to Wessely, have been threatened. One of them is purportedly Myra McClure, who co-authored a paper with Wessely last year which concluded that British patients cannot have an American retrovirus.

    "Somebody threatened to rearrange Myra's teeth!" he says. When asked if that threat might in fact have come from her dentist, he says "Possibly, but either way it really shook her up."
    "Sum fool walked up and punched me in my grill yo" says Sharpe, Senior Lecturer in Psychiatry at the University of Edinburgh. Asked if he reported this to the police, he pauses and then waves his hand dismissively. "EFF the po-lice, man." he growls.

    "I resent the implication that we are manufacturing these death threats." snaps Wessely. "That's crazy."

    How many death threats has Wessely himself received? "Millions. Dozens. Several. I could show you a couple." he says.

    He produces a note written in crayon. "This came from a seven year old girl who a colleague of mine managed to separate from her mother, who was abusing her by telling her she was sick with ME." The note says 'My mummy says you a bad man and your friend tried to took me away from her so I hate you and when I grow up I'm gonna beat you up.'

    "That one still makes me shudder," says Wessely.

    He reads another aloud. 'Leave me alone, leave my friends alone, or I will bludgeon you to death with a bottle of Prozac.' This reporter notices that the note is written on Wessely's own stationery. "Err.. yes.. that's a particularly disturbing feature. This individual must have broken into my office, stolen my stationery, and used it to write a letter to me." This reporter also points out that the note appears to be in Wessely's handwriting and is also signed 'Simon Wessely'.

    Wessely sucks in his breath for a moment and says "This individual is sicker than I thought."

    http://niceguidelines.blogspot.com/

    Phoebe Snowden 25 August, 2011
    I am a former journalist in the US whose career has been ended because of ME, a devastating and debilitating neuroimmune disease. I am horrified by your standards of journalism. Where is the evidence that any of these "threats" exist, and why are you people reporting this ludicrous story without questioning its validity? In my country, unsubstantiated rumors designed to harm any group are considered to be libel, and you would be held accountable for spewing this kind of filth and hatred. ME is clearly a biological illness, as evidenced by patients' chronic viral and bacterial infections, abnormal brain scans, etc. etc. but your physicians would not know this as they are not allowed to appropriately test your ME patients, thanks to the doctrine of Simon Wessley and co. I am convinced that history will not look kindly upon these people, in the same way that proponents of lobotomy have been reviled. As journalists, you have a duty to determine the truth about what is really going on here, instead of parroting false rumors and presenting them as unquestionable fact.

    Heide 25 August, 2011
    I have now seen this story in 3 different publications, and so far none of them have tried to figure out why patients would do such a thing. What kind of journalists hear a rumor about "ME terrorists" and take the scientists' word for it, without substantiating the claims, or getting a reaction from patients? An irresponsible journalist who cares nothing about what his writing will do to the lives of ME patients, when read by our friends, families, doctors and researchers.

    One major inconsistency of the other versions of this story is that Dr. Wesselly claims he has stopped doing research on CFS, which is 100% untrue if people did their homework. So there's a serious credibility problem with the guy who originally said he had gotten a death threat.

    Social stigma is high, and you can find hundreds of stories online of people who have taken their own lives due to the lack of understanding from doctors, and because of the socially accepted discrimination that happens on an almost daily basis for patients like us. When people are falsely led to believe that being sick is a choice for us, they often treat us harshly. We do not get accommodated at work or in schools like people who have cancer or paralysis, though we face many of the same challenges as them. It is a huge weight to bear, on top of being physically ill, and many patients can't bear to live that way any longer.

    I don't condone threats and harassment to those doctors,, but it is a FACT that the treatment methods and overall philosophies about CFS/ME created by the psychological community have KILLED patients. (www.sophiaandme.co.uk is just one example.) Forcing severely ill patients to get out of bed and exercise is barbaric. Doctors should "FIRST DO NO HARM" and there are studies that show that exercise actually makes CFS/ME worse. This philosophy of CFS/ME being a "false illness belief" has caused patients to be threatened with institutionalization if they don't participate in treatments they are afraid might kill them.

    Psychology has no right to "own" a disease that has worldwide over 5,000 studies proving it is just as physical as any other disease.

    My CFS specialist reviews every last bit of my (nearly perfect) lifestyle habits, makes sure I'm seeing a counselor and exercising - and sends me on my way. It amounts to NON-TREATMENT, and I am still severely ill. The only patients who recover thanks to these methods weren't sick with CFS in the first place. There is nothing false about the fact that the private insurance companies do not want to pay the 80 billion (in the US) that patients spend out of pocket every year. Insurance companies rely on the faulty research of Dr. Wesselly and Myra McClure (paid or not) to deny patients' claims for coverage of physical treatments. It gives them an out.

    Psychology needs to move on to study something else, and leave CFS/ME to the real scientists. If they had any honor, they would all step down and stop putting their careers ahead of patients health.

    My only hope is that when this headline catches someone's eye they will take the time to scroll down to the bottom and read our comments. And if this paper really wants to sell papers, stop the low blows, and start doing some better journalism on the reasons _why_ patients are so angry, and help us get some positive attention shed so we can solve these issues. With millions of patients, many of us connected online, word gets out when some truly fabulous journalism comes out.

    lyn 25 August, 2011
    I would suggest that members of the public & independently minded newspaper editors follow the following link, have a read & very carefully examine their consciences.

    "Cry me a river" by Hilary Johnson
    http://www.oslersweb.com/blog.htm?post=804472&forumid=331851

    I would also suggest proper investigation into the link between the gamma-retrovirus XMRV (& associated gamma retroviruses) & neurological M.E. Why not?

    Incidentally the original paper published in Science magazine which first discovered this link (Lombardi et al October 2009) & the supportive paper by highly respected & emminent U.S. scientist Dr Harvey J. Alter (Lo, Alter paper published in PNAS August 2010) remain completely unchallenged in legitimate & honest scientific terms. No replication studies whatsoever have been performed to date. Instead we have the clumsy attempted scientific cover-up we have witnessed in the U.K. & elsewhere using unvalidated assays that are highly unlikely to discover anything at all..

    How about some proper investigative journalism for a change?
    It would be quite a novel approach don't you think? At this time..

    Jenny 25 August, 2011

    When chronic illness came crashing into my life at Easter 1982, it took everything from me. Overnight it stole all the good things in my life : my health, my teaching career, my social network, my cognitive abilities,my friends and, ultimately, my home and all hope of a fulfilling future and a family. What it left in its place was overwhelming pain, devastating muscular weakness, tortuous insomnia, mysterious fluctuating neurological and immune problems and other severely debilitating symptoms which defied a name.. It was also to usher in other unwelcome and, to me, shocking additions to my existence: social stigma and poverty.

    This unwelcome invader remained anonymous for four devastating years. Only when I was finally admitted into a nursing home for physical conditions severely ill was the disease finally given a name: Myalgic Encephalomyelitis. Abnormal neurological results proved that I had Ramsey ME, so different from todays CFS.

    Three mainly housebound/bedbound decades later it is clear that this devastating disease rightly deserves its place among those that strike dread into the hearts of those who are diagnosed with such conditions as MS or Lupus. When the official guidelines for my disease were airbrushed out of existence twenty years ago, and replaced by a confusing catch-all label of CFS, I knew all hope of treatment in my lifetime was at an end. Now virtually unstudied and invisible to present day standard medical tests those of us with ME exist in a vacuum of misunderstanding. We do not even receive the very basic medical and social support that patients of other similarly disabling conditions expect as their right. We are easy pickings for an overburdened welfare state which is determined to sever us from our only means of survival.

    In these circumstances, I draw some comfort from my carefully hidden exit pack for when the physical pain becomes too great to bear and my only means of survival are removed from me by a state clearly determined to mock and denigrate the severely ill, as shamelessly reinforced by this paper's article.

    A number of my friends with this disease over the years have ended their lives as the physical suffering imposed by this illness conbined with the lack of medical, financial and social support became too much to bear. One dear friend had to enlist the aid of her husband as she was too weak to move and end her suffering by her own hand.

    At least when I was first diagnosed we had hope that someday a medical breakthrough would improve our lot. Todays young victims know our history and have the additional burden of knowing that day is even further away than ever.

    Despite the decades of medical neglect and often abuse, especially of children, not one patient I have ever known has ever threatened a scientist, carried knives with any nefarious reasons than to peel an apple, or thrown punches in the street.The highest procentage number of our patient body are composed of doctors and teachers and we are too ill to riot in any street, to throw punches or to waste our time sending e-mails to scientists who are not researching our disease, even though they have hijacked the funding that should have been ours by right. Many of us cannot even crawl from our beds to the bathroom. Does it really sound to you as if well-educated professional people are in the street throwing punches when they are often too ill to leave their beds? .

    Many of us read your paper as past members of the teaching/lecturing professions before ME took our lives and teaching careers from us. Such libelous allegations as published here are beyond the bounds of decency, On the contrary, we send letters and gifts of gratitude to those who send their lives researching our condition..and would send to even more if only the UK would allocate funding for biomedical research, the grand total of which is zero.

    Medical progress is normally made one funeral at a time, but with ME the funerals are made with no progress at all.

    Shame on you T.H.E. for repeating such libel and adding a little of your own. We are the teachers of yesterday. What we have is infecitious and what we are today, you may be tomorrow.

    Jenny
    .

    Angela Kennedy 25 August, 2011
    There has recently been a sustained and ongoing media campaign 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 eventual accountability for mistreatment of ME/CFS sufferers. Ironically, David Cameron has used the phrase "you will pay" towards rioters recently, without it being deemed a 'death threat'!

    You should also be aware that your story has gone through a Chinese Whispers scenario, as last week, apparently it was ONE woman allegedly 'stalking' at a lecture who was 'found to be carrying a knife', and ONE person allegedly 'punched in the street', though, throughout the whole Negative PR campaign, last week's Observer article was the first time those particular allegations were mentioned. A few weeks ago, ME sufferers and their supporters were deemed not as bad as animal rights violent 'extremists', that appears to have changed in the past few weeks too, which indicates a changing of story in this campaign.

    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 cynically juxtaposed with alleged acts of criminal harassment to construct non- criminal parties as harassers.

    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 put forward their reasonable positions.

    I am a social sciences researcher and lecturer, and the parent of a person diagnosed with ME/CFS. In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him, though he once wrote an unsolicited email to me, after a critical comment I made about flaws in psychogenic explanations was quoted in a parliamentary debate in 2004. When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they refused to provide that clarification. A few weeks ago in the British Medical Journal, I found that people, like me, who wrote to employers, were being falsely conflated with alleged 'death threat' makers, as harassers.

    I have also publicly and offically complained about a recent published trial of psychological 'treatments' in the Lancet (the PACE trial), and certain extremely unsafe (as in dangerous to patients) claims made from this trial. This is not harassment, unless any official enquiry, complaint, or public testimony counts as such, which it does not.

    Jeffy 25 August, 2011
    This cartoon is very offensive to people with CFS. This newspaper is called "Times Higher education"? lol
    you should change it to something that suits it a little more, and reflect it's foolishness and lack of "education" regarding a chronic syndrome. Any patient or doctor will tell you that this kind of joke makes CFS so hard to be recognized and fosters misconceptions about it. People actually suffer from this jokes.

    Hannah 25 August, 2011
    What has become of this world that people consider it ok to malign severely ill patients?

    ME left me unable to leave my bed, at times even unable to feed myself. Not because I was too TIRED, but because of muscle weakness and orthostatic intolerance. I am 27 years old and fully dependent on my parents for care. I used to be able to work 12 hours a day, go to the gym and feel great after that.

    Now talking on the phone for 5 minutes leaves me with difficulty breathing and unable to speak for hours on end.

    What right do you have to make fun of me? When my parents die, I will have to "live" in a nursing home. No way will I want to live in a world where psychiatrists claim people with ME could be well if only the CHOSE to be.

    What's next? Will you come to our homes to beat us up?
     
  11. Yogi

    Yogi Senior Member

    Messages:
    981
    Likes:
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    Continued...

    Valentijn 25 August, 2011
    Amazing how the accusations against M.E. patients keep evolving, from one day to the next. Is someone here hoping to impress the tabloids by adding this article to their C.V. some day?

    Patients with M.E. are not "tired". We have mitochrondrial dysfunction, cardiovascular dysfunction, nervous system dysfunction, muscular dysfunction, and a few others just to make sure we don't get too bored while unable to leave the house.

    We object (nonviolently), to being labeled as having solely psychiatric problems because we have very serious physical problems. In the UK, those are systematically ignored - doctors are instructed not to look for them because doing so could reinforce our "false illness belief" and impede the progress of cognitive and behavioral therapy (CBT).

    In chronic illnesses, CBT is used to help patients adapt to being very sick. In M.E. it's used to convince us that we aren't really sick. Will counseling lower my highly elevated excitatory neurotransmitters? Can it raise my noradrenaline to a normal level? Make my cortisol levels follow a normal curve throughout the day? I had the option of using supplements prescribed by my doctor, and golly gee, it actually helped a LOT.

    M.E. is not a psychological condition. If we have depression or other mood disorders, it is probably a secondary effect from having underlying biological mechanisms that are not functioning properly, being physically unable to leave the house, being in pain for a very long time, being unable to sleep well, and having idiot doctors tell you that you have a psychological problem, simply because M.E. is too complicated for them to understand.

    Do whatever it takes to find a good doctor, get the intelligent lab tests run, and get the right treatment. Your health is worth it.

    RNeeson 25 August, 2011
    Trial by media circus, lovely. Where is the legal proof any of this happened? I see now the original "knife" allegation has multiplied to "knives" and a single anecdotal "punched" is now "punched scientists". Perhaps it's more useful to the complainants' anti-biomedicine and anti-WHO classification agenda to portray alleged incidents as the norm while they write "science" where the outcome measures are changed half way through.

    But good job, as now the iatragenic harm PWME are suffering in the UK due to DwP/UNUM/Swiss Re hired hands' denials of disability and denial of pathology (such as cardiac, kidney problems and CNS inflammation) resulting in deaths, can be cos "they were asking for it". I'm glad the (alleged) police are ensuring the (alleged) criminals are getting diagnosed with ME and tweeted about before they're fingerprinted, that'll learn them.

    Meanwhile back in reality the real ME community successfully campaigned for the Medical Research Council to finally get off its backside and commission research, and help fund MERUK, the WPI and the IIM annual conferences, and a centre of ME excellence is planned (making a cartoon out of that would take some effort though). The difference is that the doctors involved are open minded enough to embrace the indisputable evidence for a very serious organic exertional disease that cannot be magicked away with talking therapy or dangerously inappropriate increase in activity. In fact a new international definition of ME was recently published in a major journal, taking pains to condemn the damaging fallacies.

    That's the stuff that really threatens them -- career wise.

    XMRV_Global Action 25 August, 2011
    I am a ME patient and I do not find your cartoon from today very funny.

    To characterize patients as being tired is like comparing a match to an atmic bomb.
    Patients with ME are once again stigmatized and discriminated against. The majority of patients with ME do not condone violence when doing advocacy work.

    However the dammage that these psychiatrists have done for ME patients is greater than you will ever believe. I would like you to research the way patients with multiple sclerosis were treated a few decades ago. They (mostly women) were hospitalized in psychiatry and deemed to have "hysterical paralysis". In 2011, no one would dare doing this kind of things or even calling patients with MS hysterical.

    Patients with ME do know that they don't have a mental illness, and that cognitive behavioral therapy, or graduate exercise therapy will not work on them just in the same way that it will not significantly improve the health of an AIDS patient. The UK government just spent 7 millions pounds to test CBT and GET- and for patients with ME, this is money thrown down the drain.

    Every May, Invest in ME is hosting a ME conference and invite ME experts from around the world. It has never been attended by Simon Wessley and company. The other expert know that this is not an illness of the mind.

    Please do not perpetuate the stigma that exist in our society to the benefits of the few british scientists that have caused great harm, and continue to do so. I would suggest you investigate what is going on a little bit more.

    Lborgia 25 August, 2011
    I once was the subject of a very brief article in your paper having been part of a fairly unprecedented success where myself and my two sisters all obtained a First Class degree from the same university in the same year despite being different ages.

    My degree years had happily coincided with a respite, of sorts, from the disease ME from which I had unknowingly been suffering for over 10 years at that point. I say 'unknowingly' as I had no name for it & it was to be another 7 yrs before I received a diagnosis despite many, many tranches of time laid up in bed at home and an inpatient stay in hospital.

    By the time the THES article had been published I had hoped my unnamed malady had eased to the point that I could manage some sort of life, but it was not to be. Within a year I was badly disabled again, and now many many decades later I look back to 17 years of being housebound and no improvement in sight. Instead I see my life portrayed in the THES in an altogether less glorious light : a parody which has nothing to do with reality at all and everything to do with shoddy journalism which cannot scratch below the surface of a PR machine spewing out false information and maligning a population which would like nothing better than to be free of an illness it never invited; free to live the lives we always thought we might and should have had.
    Maybe the THES could read this document http://www.meactionuk.org.uk/Corporate_Collusion_2.htm and cross reference it with the claims Wessley has made? Please feel free to use the old fashioned approach and double check the references, as I think used to be the norm for good journalists way back when journalists did what they were supposed to do, and satisfy yourself that Simon Wessley's (and his 'schools') links to the DWP and major insurance companies are not the figment of unbalanced minds, but a reality. THES: you have inadvertently stumbled upon a much more Machiavellian story if you had the nerve, and dare I say it the brains, to follow it up.

    Bill Wallace 25 August, 2011
    This is taken from a blogpost I wrote and is used with my permission

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Other news outlets, such as THE, do themselves, their readers and in this case the sufferers of ME, no favours by indulging in "churnalism" and not doing any basic checking before printing

    lyn 25 August, 2011
    For those interested in the truth rather than bigotry. A more up to date take on things.

    http://www.meactionuk.org.uk/magical-medicine.pdf

    Irene Thorpe 25 August, 2011
    THIS year marks the 50th anniversary of the Suicide Act 1961, which decriminalised the act of taking your own life.But despite that change, and the fact that an average of one person dies by suicide in the UK every two hours, it is still rarely discussed, according to the Samaritans.Two weeks ago the Advertiser reported the story of Louise Walsom, from Westhumble, who battled with severe myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome, since January 2010, after contracting glandular fever.The ME caused her to become severely depressed and, after spending months in hospital, she took her own life at the age of 18.Just to make my point . It is still happening more than 2 decades after my dreadful experience. This young lady needed treatment for a physical illness. The depression would have gone away.How many more ME lives need to be lost .Please pass my open letter I wrote to the Guardian on to your editor In Chief
    Dear Jessica

    I understand you are looking for Personal stories regarding the revelation that suicide rate are high in people with chronic illness. My story below will show you that one does not do not have to be depressed or have any inclination to snuff out ones life force to do the deed,.It is quite the opposite ,people with ME have the will, they yearn to live but unfortunately are too ill to do so.The need is to end ones continuous suffering of pain ,distressful physical illness symptoms and abuse by medics media and politics that lead to the decision of committing suicide

    There are many people like me who are severely ill with ME.Where do we go when there is nowhere to go.


    I was stuck down in such intolerable pain after I had tried to swim myself better. One of my GP's had been to a fatigue conference led by one of the Doctors who have been complaining of death threats etc in all major papers this week and who had come away with the take home message that exercise was the only way of eradicating my illness. My heath disintegrated so badly in the few days after I had begun swimming sessions that I was rushed into hospital as a medical emergency. I was disbelieved by the specialist who's care I was under.I was not allowed help to get to the toilet and I could see they were watching me carefully.I was offered a paracetamol for the excruciating pain that was so bad my teeth were clamped together. I asked to go home four days later because I knew I was not being believed I was ill and this disbelieve was all because my GP had told them he suspected I had ME.

    The day after I came home my husband called an ambulance as I was deteriorating badly and I could not breath.(Years later I found it was due to the intercostal chest muscles which had cramped.). I was evicted on a cold damp day in just a flimsy nightdress. I was denied a blanket and a drink of water. and told it was all because I had not had a baby. As I lay in bed at home wondering where do people like me go when there is nowhere left to go, I suddenly realised I had lots of unused antidepressant tablets scattered all over the house. Unused because they were useless to me,they made me sick, and I was not depressed but very physically sick. Sick and nowhere to go. I pleaded with my husband to find out all the pills and he brought to me one and a half pints worth. I looked at them and said. ''Please flush them down the toilet for me I really don't want to take them but I have no choice but to down the lot''. The sole reason for me not taking an overdose was because both myself and my siblings have had to live with the suicide of my mother when we were just young teenagers.My mothers suicide also relates to the lack of care, support and understanding of an ME type illness. My family know what it is like to have to live with the grief ,blame and life long after trauma of a family member committing and I just could not do that to my family again..My husband said to me he had been told 'secretly' not to help me at all. I spent 18 months in a dark quiet back bedroom. My sole carer was my full time working husband.I had been denied even an assessment visit from social services. I was bed bound and could not lift my hands to feed my self. and could hardly swallow and talk. I could not go to the bathroom yet I had spent 12 hrs a day, without assistance just laid there in intolerable pain waiting for my husband to come home.. He hid me there to protect me from being sent to a mental ward where I did not belong. What I needed was pain relief and I will note until this point I had never taken even a over counter pain medicine in my entire life.

    ME is a physical illness as defined by The world health organisation. and there are many research papers that show physical abnormality yet here in the UK all lay people get to see and hear are the views of these few Psychiatric researchers and clinicians who have a very biased view not based on this centuries system biology technology.their views are not supported by the WHO and they have views which has been discredited by science. This is why we are getting upset with those few psychiatrists and their very powerful friends portraying ME people as some sort of hysterical, militant, socially backward members of society with false illness beliefs. All we want is the same respectful research as other illness have managed to procure. Nothing more and nothing less. This most recent media attack on this very physically sick and neglected group of patients initiated by some Medics who profess to care for them does nothing to prevent more suicides ,and assisted suicides, of people like me who have done nothing wrong to society expect to come down with an illness that is not only disbelieved by some but ridiculed as well..Nothing has changed in more than too decades of my being physically ill.The behaviour of these few psychiatrists,I believe one of them has even turned to BBC world news to spread his sob story worldwide, and all the news reporters who are regurgitating this old news are literally KILLING people




    Mrs I Thorpe

    polly 25 August, 2011
    The times should be hanging its head in shame if this isnt discrimination I really do not know what is ? and what about any students who are struggling hard to continue their studies whilst struggling with ME .? How can they possibly go to college now and not feel marginalised in some way ?

    I also fail to see what this has got to do with The week in higher education ?

    the story above is about the A Level results and the story below it is about the fact that a lawyer is trying to argue the case that students in england , Wales and Northern Ireland are discriminated against as they are charged 9,000 a year while Scottish students and those from other European Union countries pay nothing.

    Where exactly do ME patients fit into this picture ? erm they dont .The story in question has nothing whatsoever to do with education .

    I am glad the Times has taken down the offensive cartoon however this action comes too late it should never have been printed in the first place . The cartoon has already been widely circulated around the web and the damage has been done .

    I would like to know what exactly the Times plans to do to rectify this situation , if anything .

    I am appalled by the way the times has reported on this subject over the past few weeks . You have shown yourselves for what you actually are ie the gutter press dressed up under the guise of a reputable publication . When infact you are no better than the tabloids .

    Lborgia 25 August, 2011
    AS my comment appears to have been removed, maybe because it contained a doc ref, I'll repost here with the URL removed. I sincerely hope my comment has not been moderated for any other reason.

    I once was the subject of a very brief article in your paper having been part of a fairly unprecedented success where myself and my two sisters all obtained a First Class degree from the same university in the same year despite being different ages.

    My degree years had happily coincided with a respite, of sorts, from the disease ME from which I had unknowingly been suffering for over 10 years at that point. I say 'unknowingly' as I had no name for it & it was to be another 7 yrs before I received a diagnosis despite many many tranches of time laid up in bed at home and an inpatient stay in hospital.

    By the time the THES article had been published I had hoped my unnamed malady had eased to the point that I could manage some sort of life, but it was not to be. Within a year I was badly disabled again, and now many many decades later I look back to 17 years of being housebound and no improvement in sight. Instead I see my life portrayed in the THES in an altogether less glorious light : a parody which has nothing to do with reality at all and everything to do with shoddy journalism which cannot scratch below the surface of a PR machine spewing out false information and maligning a population which would like nothing better than to be free of an illness it never invited; free to live the lives we always thought we might and should have had.
    Maybe the THES could read this document (removed..but please Google 'Corporate Collusion' Williams and Hooper which will allow access to this material) and cross reference it with the claims Wessley has made? Please feel free to use the old fashioned approach and double check the references, as I think used to be the norm for good journalists way back when journalists did what they were supposed to do, and satisfy yourself that Simon Wessley's (and his 'schools') links to the DWP and major insurance companies are not the figment of unbalanced minds, but a reality. THES: you have inadvertently stumbled upon a much more Machiavellian story if you had the nerve, and dare I say it the brains, to follow it up.

    lyn 25 August, 2011
    It would appear that the moderator here is removing comments that are judged too straight talking to allow into the public domain.

    As a U.K. M.E. sufferer of 28 years who has been reliably tested in the U.S.A. as being positive for the gammaretrovirus XMRV and who also has mri results showing lesions on the brain, I do find the unwillingness of U.K. journalists to face the truth & reality of our disease rather disappointing. To say the least.

    Cartoon abuse 25 August, 2011
    Is it not unfair to have put up that disgraceful cartoon. Had all these comments posted, and then removed it so the context is lost. Shoudn't the Times face the music?

    HP 25 August, 2011
    Please can you provide proof that anyone with the neurological illness myalgic enceohalomyelitis has ever 'have turned up at lectures with knives, punched scientists in the street and issued death threats'.

    If, as I suspect, there is no proof because it is hearsay, please could you apologise and remove your allegations?

    It has been bad enough living housebound for a quarter of a century with this incredibly painful and devastating illness and with no treatment whatsoever, without this seemingly well orchestrated smear and hate campaign against M.E. sufferers.

    You would not make such allegations against sufferers of any other illness with no proof.

    renethorpe 25 August, 2011
    This is the worst case of Chinese whispers I have ever seen and it is now become libellous.

    have turned up at lectures with knivet =.one lady sat in a lecture hall had a knife in her bag- i have a small knife i need to take out with me as I have severe TMD and cannot chew and I always like an apple.

    punched scientists in the street = one scinetist claimed she was punched in the face in the streets. who by did that person say she Had ME and why wasn't the police called

    You will get yours . is not a death threat it is short for you will get your comeuppance and the death threat S.W keeps regurgitation are the last lines from a poem by Bob Dylan .Masters of War

    SW has now gone global with his sob story. The incidents he claims happened years ago. He has now got BBC world news. Russia and the Netherlands are posting this regurgitated rubbish.

    Ask yourselves why have these so called CFS scientists have declared a war on the people they say they care about. It is because the MRC have recently admitted there has been bias in the past with research finding not going to find the cause of ME and CFS, 90% going to those same Psychiatrists and friends for CBT and GET therapies which they have proved themselves does not work effectively or cure illness . recently the MRC announced a 1.5 million pound ring fenced fund to go to biomedical research and wanted at least one new researcher to become involved. This cry baby media grabbing is to scare off new researchers and put the blame on those suffering the illness


    CrafterKate 25 August, 2011
    I wasn't sure about your cartoon, So I got to work on my own artwork.

    ME CFS POSTER:

    http://www.i147.photobucket.com/albums/r318/crafterkate/RESEARCHXMRVPOSTER2-1.jpg

    Simon 25 August, 2011
    OK, T.H.E. and the "journalists" responsible for this juvenile attempt at reporting, you now have feedback X 100. Appropriately, It reminds me of what the spineless bully in the playground used to get back.

    Here's your opportunity to give bona fide ME suffererers (not people who are simply "tired for a long time") the courtesy of a response.......or do you not have the backbone for that?

    Terri 25 August, 2011
    What on earth has conducting a campaign of hate smears and exaggerated lies against people whose lives have been devastated by a serious neurological illness got to do with further education?

    Maybe a better story would have been to report on all those thousands of young people who are too ill to receive any sort of education because their lives have been wrecked by M.E.

    LGH 25 August, 2011
    What good pre-publicity this has been for Wessley's new book, quite a cynical use of sick people in order to boost sales.

    Nasim Marie Jafry, author of The State of Me 25 August, 2011
    I agree with renethorpe - this is becoming libellous. Smearing an entire patient community because of the alleged actions of a tiny minority is hugely unethical. No context being reported of why people may be pushed to behaving extremely and irrationally - perhaps because they are at the absolute end of their tethers. ME is a serious neuroimmune illness and yet for the past twenty years patients have been erroneously labelled as mentally ill by a clique of UK researchers, mainly psychiatrists, led by Simon Wessely,who have their views recycled endlessly by obsequious health editors who do not dig deeper for the truth. Last weekend, Dr Esther Crawley stated in the Observer that in adults ME is caused by 'adversity, stress and social deprivation'. I became catastrophically ill with ME in 1983 because I had an abnormal immune response to the Coxsackie B4 virus. Simple. And yet I am forced to read this kind of nonsense, almost 30 years after I was diagnosed (by a consultant neurologist). And the now infamous Prof Wessely stated recently in the Times that CFS - he refutes the original name ME - is a 'cultural phenomenon, a metaphor for our times'. The whole saga is a cruel farce. I thought 'THE' dealt with education - and yet you are spreading misinformation here like wildfire. This clique of doctors is making a mockery of ME research when you look at what is being done on the international stage - and also they are drowning out voices of the decent UK biomedical research that is going on. Shame on all of them.

    Guido den Broeder 25 August, 2011
    As the chairman of a patient association in The Netherlands, I can confirm that death threats do occur.

    However, they are not sent by patients to scientists, they are sent by doctors and officials to patients. They deal with forcing ME patients to follow treatments that are known to be detrimental to their health and potentially lethal - or else, no social security, no help. And with taking away severely ill children from the care of their parents and moving them to places where they are maltreated and neglected.

    I have personally received threatening letters from therapists, demanding e.g. that we remove information on ME from our website. I have received threatening phonecalls from doctors deciding over social benefits, threats that were in fact followed up when I didn't comply. A military physician once threatened to shoot me to death.

    I have been physically attacked by doctors, or on their behalf, one time leading to three injured ribs. Doctors shouting in high-pitched voices and throwing with lab results (from abroad, of course) upon reading the diagnosis of ME, is not an uncommon sight.

    So the story is true, you merely mixed up the parties.

    By the way, I am a pacifist and have never harmed anyone in my entire life. I do not even own a knife or anything else that is sharp, as my brain damage makes me clumsy and I could easily wound myself by mistake. If I could lift it, that is.

    And yes, there are many good, caring doctors and therapists, too. If they speak up, they receive threats from their collegues, get fined or suspended and lose their contracts with the health insurance companies.

    Firestormm 25 August, 2011
    I only wish in part that you had quoted exactly from the Observer article and not chosen to do so erroneously.
    The inclusion of your cartoon (now removed) was not so much insulting to me as perhaps providing hope that someone with more journalistic savvy, will (after seeing it elsewhere) now run with this whole sorry state of affairs in a more balanced and professional way.
    You simply cannot refer to previous articles and then change their content as you deem fit.
    This is a supplement for Higher Education isn't it? I shudder at your message in that case.
    Removing that cartoon was the right thing to do - but publishing it originally was so wrong. I don't suppose an apology will be forthcoming?
    You know I hadn't viewed the previous articles and radio broadcasts as being aimed at anything other than those perpetrating the said actions. I don't hold with this being about the 'whole community' whatever that might be. That said, your piece takes things too far - though it might just prove a turning point: if others will only stick to the context as well.

    Firestormm 25 August, 2011
    I only wish in part that you had quoted exactly from the Observer article and not chosen to do so erroneously.
    The inclusion of your cartoon (now removed) was not so much insulting to me as perhaps providing hope that someone with more journalistic savvy, will (after seeing it elsewhere) now run with this whole sorry state of affairs in a more balanced and professional way.
    You simply cannot refer to previous articles and then change their content as you deem fit.
    This is a supplement for Higher Education isn't it? I shudder at your message in that case.
    Removing that cartoon was the right thing to do - but publishing it originally was so wrong. I don't suppose an apology will be forthcoming?
    You know I hadn't viewed the previous articles and radio broadcasts as being aimed at anything other than those perpetrating the said actions. I don't hold with this being about the 'whole community' whatever that might be. That said, your piece takes things too far - though it might just prove a turning point: if others will only stick to the context as well.

    Firestormm 25 August, 2011
    I only wish in part that you had not quoted exactly from the Observer article.
    You simply cannot refer to previous articles and then change their content as you deem fit.
    This is a supplement for Higher Education isn't it? I shudder at your message in that case.
    The inclusion of your cartoon (now removed) was not so much insulting to me as perhaps providing hope that someone with more journalistic savvy, will (after seeing it elsewhere) now run with this whole sorry state of affairs in a more balanced and professional way.
    Removing that cartoon was the right thing to do - but publishing it originally was so wrong. I don't suppose an apology will be forthcoming?
    You know I hadn't viewed the previous articles and radio broadcasts as being aimed at anyone other than those perpetrating the said actions. I don't hold with this being about the 'whole community' whatever that might be.
    That said, your piece takes things too far - though it might just prove a turning point: if others will only stick to the context as well.

    HP 25 August, 2011
    Editors' Code of Practice

    Accuracy


    i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.

    ii) A significant inaccuracy, misleading statement or distortion once recognised must be corrected, promptly and with due prominence, and - where appropriate - an apology published. In cases involving the Commission, prominence should be agreed with the PCC in advance.

    iii) The Press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.

    Discrimination


    i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability.

    *Harassment


    i) Journalists must not engage in intimidation, harassment or persistent pursuit.


    ---------------------------------------------------------------------------

    So why is the Times currently involved in an escalating smear campaign against people with a neurological illness, with no evidence ever produced that anyone with M.E. has actually attacked, threatened or harassed a doctor or scientist?

    Ben 25 August, 2011
    Encouraged by the poster from The Netherlands, I will also admit that, when involved in advocacy work and running medical conferences before I became too ill to continue, I and my colleagues also received threatening calls from certain UK authorities. We were threatened with physical harm via a third party for circulating the research information about the illness to doctors. Those that continued despite the threats, suffered serious loss.

    .

    Emma Freeman 25 August, 2011
    One quick question. Does anyone know an M.E. sufferer with the energy or physical strength to even go and see Mr Wessely, let alone lift a finger against him or his idiotic colleagues? I can barely life a knife and fork to feed myself, let alone threaten someone. And why would we waste what precious little energy we can muster on him?! I don't think so. Lies, all lies. Shame on you, TEH, shame on you, for propagating such libellous and damaging nonsense.

    Mairi 25 August, 2011
    This abuse story just runs and runs, but who is being abused we must ask ourselves?

    You would think a PSYCHIATRIST would be sensitive to the distress of a quarter of a million sick people some of whom are severely ill and dying as we speak. ME sufferers have an illness so severe they lose decades of their lives, isolated and marginalised, they live in pain and suffering of the worst sort, many commit suicide. This is just another round of the ongoing vicious campaign against them and their supporters that makes their lives so unbearable.

    Simon Wessely, Myra McClure and Esther Crawley, together launched this huge abuse story in the newspapers and on radio. Claiming scientists (themselves) are under siege, being abused and receiving death threats from ME patients/activists, forcing scientists (Myra McClure) to leave ME research.

    They are not only accusing the handful of people who overreact on the internet etc., (other sympathetic researchers understand patients distress and routinely ignore this) but everyone who has criticised them in any way, conducted biomedical research into ME or legitimately campaigned for the recognition of ME. This is a tactic used before by Simon Wessely to deflect attention and denigrate ME patients and supporters at strategic times.

    This travesty of defamation of character of an entire community of sick and disabled people, researchers and campaigners, will not be unrelated to the fiasco of the Pace trial (over 5 million wasted), the recent publishing of the International Consensus Criteria for ME and the imminent arrival of Wesselys latest book on CFS.

    Kitten 25 August, 2011
    I must also add, that I do not condone death threats or abusive behavior. I see my advocacy work is a crusade for the truth but I believe in positive action and would never hurt anyone. Unfortunately, Wessely does not seem to be able differentiate between impassioned advocates requesting FOI and writing letters of complaint and knife-wielding delusionals. Perhaps he needs to see a psychiatrist?

    Kitten 25 August, 2011
    I must also add, that I do not condone death threats or abusive behavior. I see my advocacy work is a crusade for the truth but I believe in positive action and would never hurt anyone. Unfortunately, Wessely does not seem to be able differentiate between impassioned advocates requesting FOI and writing letters of complaint and knife-wielding delusionals. Perhaps he needs to see a psychiatrist?

    Kitten 25 August, 2011
    I have kept quiet about this particular assault for the last few weeks but feel this cartoon is a step too far, particularly as I was once a hard-working teacher with a bright future ahead of me; now I am so severely sick that I cannot leave my home.

    Many gravely ill patients - some so sick they are tube-fed - have been forcibly removed from their homes and sectioned under the mental health act because they refused 'Wessely's' treatment. Some have even died because of the sectioning. This is the real story.

    It is perverse and wholly unacceptable to make a joke out of human suffering. There are many people who have died from this illness and its complications.

    I do hope there will be a full apology issued by the THE.

    Note to Editor: I have had this message removed twice from this site. Why?

    Jill 25 August, 2011
    CFS is not ME. It should not be known as ME. There is no such thing as ME/CFS or CFS/ME. Making up terms which can have different meanings is nonsensical. We have had no credible advocacy as such and patient groups have not done their due diligence. ME has been recognized as a distinct neurological illness for over 50 years. CFS is an unexplained symptom syndrome which can encompass many things, based on the shared symptom of fatigue, which can be found in almost any illness, physical or psychological. It is a misdiagnosis of ME and should not be used synonymously or combined as such. CFS is a fatigue syndrome. ME is not. Despite the lack of credible information, please get these facts straight.

    Firestormm 25 August, 2011
    It seems I was kerfuddled by the publication process for your comments page - I apologise.

    The last comment of mine above is the correct submission for what it is worth.

    Not bad for an accredited career working in the private banking industry - is it? ;)

    Julie 25 August, 2011
    I have had this illness for 23 years, I am bedbound I have lost family and friends because people believe the unsubstantiated truth you and others write, if only you would try to spread awareness and the truth about this devastating illness, that has claimed lives, why are you not asking where is the research?

    The press including yourselves seem to be at the beck and call of one man! If there are some people out there doing these things to him, I presume he has reported it to the Police? and the result? Why concentrate on one man and not the huge amount of people suffering daily.

    All I have to say to this Dr is "Primum non nocere"

    "First, do no harm" maybe you could do the same.

    Giles 25 August, 2011
    Any patients threatening doctors or researchers is wrong, especially if they could be taken (wilfully or unintentionally) as death threats. Any doctors or researchers threatening anyone else trying to help patients (ref. the comment above by Guido den Broeder; also unsubstantiated complaints against Dr Sarah Myhill, including by the GMC) is also clearly wrong too.

    Anger and frustration amongst people with ME is hardly surprising though, when not only faced with one of the worst debilitating real neuro-immuno-endocrine illnesses there is, but we are subjected to prejudice, misunderstanding, and a complete lack of support, from doctors, government, benefits agencies, media, friends and family, and our wider society.

    Will you be running a further series of cartoons, perhaps equating terrorism with people who have AIDS, MS, cancer, strokes, Alzheimers and autism?

    Millions of us around the world with ME would, I am sure, want nothing more than to support genuine research into the truth about the causes and possible treatments and cures for ME. We would also be delighted with some balanced fact-based reporting in the UK media for a change. I have tried to describe what it's like for millions of us with ME, every day, here:
    http://www.youtube.com/watch?v=qBriPTFOtmY

    Caroline Davis 25 August, 2011
    Comment removed. Thanks THES, nice to know you are taking this issue so seriously.

    Once again. 1,100 patients have signed a petition asking the MRC to change its widely discredited policy of only funding psychological or behavioural studies into ME. http://bit.ly/Research4ME

    The MRC is due to announce in November which applications have been successful in securing a share of the 1.5m ring-fenced budget it promised for research into ME in January.

    I asked whether the THES would note whether the MRC pays any attention to the requests of patients or continues to blindly plough the psychiatric furrow.

    I see nothing offensive in the post above. Please do not remove it. If you do remove it, please mail me and let me know on what basis it was removed. Thank you.

    Ern Roberts 25 August, 2011
    On average, the dedicated scientist tends to avoid the media. Published this month is an insightful article entitled "Small Wins Matter in Advocacy Movements: Giving Voice to Patients" by a greatly respected investigator, Leonard Jason, wherein he noted "However, many patient advocates felt that this was not a fair and independent review, and patient advocates claimed that the CDC had not appointed impartial reviewers".

    It's available free online. Perhaps someone within Higher Education might like to join the rather obvious dots for a substantial article that might place the public interest before any other interests?
     
  12. AndrewB

    AndrewB Senior Member

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  13. *GG*

    *GG* Senior Member

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    Those poor "scientists" cannot tolerate their work being scrutinized, by very sickly patients with brainfog! And since when is FOI like terrorism? What has the world come to, more and more people are becoming terrorists! Perhaps people are tired of all the rubbish, and want light shone on the dealings that affect their lives!!

    GG
     
  14. Angela Kennedy

    Angela Kennedy

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    Thanks Andrew.

    Nice article too.

    I've submitted a response to it :D
     
  15. Enid

    Enid Senior Member

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  16. Angela Kennedy

    Angela Kennedy

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  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Maybe if more folk had bitched and shouted 70 years ago, if there had been an Internet, then the human vermin, aka, some doctors and "scientists" who gave the nazi atrocities a veneer of "legitimacy" would have been likewise lambasted, and perhaps, destroyed (logically, professionally, public opinion, that is)

    Different strips but the same crap, then vs now (reffering to football)
     
  18. Wonko

    Wonko Senior Member

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    People did, they were told what was happening, and the bulk of the population didnt care or actively supported it, same stuff as is happening today (albeit with less actual physical voilence at this point) - we are currently in the prev-oilent media campaign phase.
     
  19. Bob

    Bob

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    In the recent BBC radio 4 interview, Wessely stated that he has never been the victim of violence, but only threats of violence.

    "...I've never been the target of violence, but I've been the target of threats of violence"

    Wessely says it here, at 01.45:
    http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm
     
  20. Angela Kennedy

    Angela Kennedy

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    And we've already seen the way David Cameron's declaration 'You will pay' does not constitute a death threat- so that the claim of 'death threat' around that phrase is unreliable (especially when the whole sentence of that example they cite is taken in context).
     

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