ME Patients considered dangerous?

It was to my surprise, and complete dismay that i awoke this morning to an article so biased and disturbing that i felt compelled to speak out against it. What was just as alarming as the 'message' was the messenger, non other than one of the UKs most respected new's papers, The Observer.

For those not fully aware of what M.E (Myalgic Encephalopathy) is, let me explain.

It's a condition that effects the central nervous system, possibly a viral onset (i say this with some doubt as no science has backed this theory up completely yet). What we DO know about the condition is that it causes swelling of the brain, spinal cord, and induces uncommen fatigue, which is to say many patients are bed ridden for months, years, and sadly, sometimes for life.

The illness was lumped together in the unhelpful bracket of 'CFS' (Chronic Fatigue Syndrome). This tag was rejected by patients and specialists alike, as it didnt explain the central nervous system distubences patients suffer from, including acute pain, balance problems, blurred speach, and breathing problems.

The main axe patients have to grind at the moment is the proposed treatment of this debilitating illness. When something very phyiscal is going wrong with you, the last thing you want to hear a GP saying is "it could be all in your mind". Sadly, many GPs still believe this outdated explanation of ME.

Even worse than this, bringing me back to my point here, is when such a respected new's paper such as The Observer prints an article that compares ME patients to dangerous militents. I kid you not.

The article, released today, centres on the issue of researchers hired by the govenment (to the tune of £5 million tax payers money) being harrassed by way of death threats and hate mail. If this is going on, then its no doubt a small faction of idiots who are directing thier anger at not being taken seriously to the wrong people.

"Whats wrong with mentioning these kinds of threats in a news article" you might reasonably say to yourself. Please read the article, of which I've linked below..its imporant to read this.

http://www.theguardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyomyelitis

Its the tone of the article which was non other than an attack of the growing number of people struck down by the illness. Yes, there ARE activists about for ME, but they are more concered with furthering medical science to help patients get the the help they so deperately need.

A very similer media campaign was set up against AIDS patients years go, which caused panic and zero understanding about Aids.

With articles like todays, its easy to see that the govenment is trying to bury the whole illness as the preserve of people whith phycological problems. The real question here is WHY. Is it because trying to treat a chronic phyiscal condition of which they themselves know nothing about is too costly? Maybe given the cut backs, who knows.

All ME patients are asking for, is govenment funded bio-chemical research to take place that will hopefully, one day provide an answer to the riddle of what causes this horrific illness, and to stop the ingnorance and indifference many people view the illness with.

But, with articles that mention words like 'miliant', 'death threats', 'dangerous' and so on, it's set's an already misguided population further into the frame of mind that ME is all in the patients head.

 

THE VIEWS EXPRESSED HERIN ARE STRICTLY MY OWN.

  • Comment from: bluejovanka
    23/08/11 @ 04:34:52 pm

    That article from The Observer does surprise me, usuallu like you said they are so balanced

    Are there any more balanced reports around about this?

  • andrew
    Comment from: andrew
    27/08/11 @ 12:32:32 am

    Further to The Observer’s silly article, Prof Wessely is now saying that psychiatry (the treatment of behavioural disorders, depression being the most widely know) and neurology should be all the one thing ????? Sound crazy..thats because it is. And this is the man our govenment is making responsible for huge sums of money to ‘play’ with to advance the treatment of ME/CFS. Anyway, here’s his latest ramblings on the issue, please bare in mind before you read this, that more than 70% of people with ME who’ve been treated by Wessleys treatment plans report feeling WORSE.

    SIMON WESSELY 27 AUGUST 2011

    “It’s time to stop separating psychiatry and neurology”

    In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queen’s Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation — muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion — yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). ‘I can’t understand why they think it’s an encephalomyelitis,’ one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: ‘Dear Simon, please see this patient. There is nothing wrong with her.’

    But there was. The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS). At that time, patients at ‘the Square’, as the hospital was called, were usually told that the only thing they could do was to rest and either hope that the condition would go away or that doctors would come up with a magic bullet.

    I started, with a group of other doctors, to try to do better. Over the next two decades, we developed two different approaches to rehabilitating CFS patients, based on the idea that even if we didn’t know what caused the illness, we could still help patients manage their symptoms and regain control of their lives. Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked. In 2007, some 20 years after we started, the National Institute for Health and Clinical Excellence approved both treatments as safe and effective.

    I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers. We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.

    Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice’. One blogger wrote a post addressed to me in which he called me ‘the born personal physician of Heydrich, Goebbels or Hitler’. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.

    OK, let’s keep a sense of proportion. It’s only a small number of people who do this. I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.

    For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.

    My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one. But three things here anger me. First, the repeated claim that we don’t think our patients have an illness. They do, and to say otherwise is insulting.

    Second, even if you don’t think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queen’s Square are the best we have. They are by no means a cure — but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinson’s, schizophrenia and many more. No one would advocate leaving them without any prospect of treatment.

    And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.

    It’s not so much the threatening emails and blogs that rile. It’s the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues — the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word ‘not’ deleted, for instance. And transcripts of our speeches are sometimes altered so that ‘yes’ becomes ‘no’.

    How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers — who did believe that many illnesses were ‘all in the mind’ — led to an increasing separation of the two disciplines.

    By and large, the current generation of psychiatrists accept that many disorders — autism, schizophrenia, bipolar, OCD, Alzheimer’s and others — are disorders of brain function. Yet the division between neurology and psychiatry remains. It is almost impossible, for example, to train in both fields in this country, unlike in Germany. A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. ‘If we could identify the problem with the brain, we could tell patients it’s not all in their heads,’ he said, without apparent irony.

    We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on with our jobs — improving the treatment of patients and their illnesses

  • Angela Kennedy
    Comment from: Angela Kennedy
    27/08/11 @ 08:33:25 am

    Many thanks indeed for this eminently sensible article! If you don’t mind I’d like to further contextualise the Observer and Spectator article:

    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’.

    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 sadly refused to provide that clarification. A few weeks ago in the British Medical Journal, I found that people who wrote to employers were being falsely juxtaposed with alleged ‘death threat’ makers, as harassers. Perhaps Professor Wessely might clarify that point here?

    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 (of course) it does not.
    The reasons ME/CFS sufferers and their supporters publicly object to the claims and beliefs of Professor Wessely and many others, are because (a) these are often implausible, and (b) they have led to the adverse effects of psychogenic dismissal and construction as deviants, which include non-treatment of serious physical damage, and refusal of much needed benefits for seriously disabled people, as just two examples of many adverse effects.

    Again, thank you so much for writing something sensible about this. It’s been shocking what has gone on these past few weeks.

  • mark
    Comment from: mark
    28/08/11 @ 04:38:29 am

    thank you sir!

  • polly
    Comment from: polly
    28/08/11 @ 10:14:30 am

    Thank the lord for a journalist that is talking sense for a change. One has to question the motives of a professional man like Simon Wessley in launching this media campaign??? I speak to many people with ME and have noted that there is now despair amongst them as they observe the very people who should be helping them vilify them instead. It is shameful and immoral.

  • Greg
    Comment from: Greg
    28/08/11 @ 11:34:53 am

    Thank you for being interested. It is so refreshing to have a positive article from a journalist that has found out about the subject and seen the disgusting situation sufferers are being forced into under the health regime that has existed for over 20 years.

    The disease was discovered to be physical decades ago, which is why it was classified neurological by the WHO. But like similar diseases, such as MS, the cause is unknown. The authorities have prevented biomedical research into the condition for so long, driving our scientists away due to lack of funding and have been attempting to have it reclassified as a mental health condition. All to benefit the Government, the insurance industry and the pharmaceutical industry.

    Human gammaretroviruses are the big breakthrough.

    Thank you again.

  • Barry Davies
    Comment from: Barry Davies
    28/08/11 @ 03:12:14 pm

    I was surprised at the slant of the piece of journalism, one had to ask why the author didn’t ask Professor wellesley how can someone who is struggling just to carry out activities of everyday living is supposed to be able to harm him. The word activists also seems to be an odd choice of word for a group of people who are inactive by definition. The idea that behaviour modification can help is as stupid as saying it will help a blind person see. I myself haver sufferdthe negative effects of graded exercise, having been carted off to hospital in an emergency ambulance only to spend the next six hours being stabilised. Wellesley might signature himself as an expert, but he is by no means that neither is anyone else in regard to this subject, only those of us who suffer the condition realy understand the way it affects us , and those who care for us, a psychitrist can be helpful in assisting us into coming to terms with the sudden swing from being ultra active to virtually immobile, and the innate acute depression which that causes but there is no way on earth a psychiatrist can cure the condition or improve it, long term.

    The only really helpful action is pacing, and that is only partially helpful.

    The idea of aggressive activists is laughable, all that is happening is people attempting to correct the inacurate ideation of someone who clearly has little to no real insight into the condition.

  • Margaret Laverick
    Comment from: Margaret Laverick
    28/08/11 @ 07:25:05 pm

    Totally Agree ! !

  • jane clout
    Comment from: jane clout
    29/08/11 @ 04:06:27 pm

    For the backstory on Prof. Wessely’s involvement in ME and CFS, check out this http://www.meactionuk.org.uk/Response-to-Observer-article.htm

  • billie
    Comment from: billie
    29/08/11 @ 05:55:59 pm

    Thank you so much for your article.

  • Jan Laverick
    Comment from: Jan Laverick
    30/08/11 @ 02:34:52 am

    Thank you very much for speaking up and writing the truth. All the recent misinformed and hateful articles have caused much distress, it’s a relief to know not everyone has been duped.

  • vikki walker
    Comment from: vikki walker
    30/08/11 @ 02:57:36 am

    A breath of fresh air from all the recent negative press toward M.E patients, thank you!

  • Susan Wenger
    Comment from: Susan Wenger
    30/08/11 @ 07:04:57 am

    I’ve seen sane responses from bloggers. But the commercial media seems to have swallowed the story whole, and each article is worse than the last.

  • Justin Reilly
    Comment from: Justin Reilly
    04/09/11 @ 02:01:27 am

    Excellent blogpost! Thanks. Wessely is a crook.

  • Comment from: bluejovanka
    06/09/11 @ 10:43:56 pm

    someone has guided me to this site:

    http://www.actionforme.org.uk/

    Thanks for the info

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