Wednesday, August 10, 2011

Dear Dr. Wessely

An open letter to Dr. Simon Wessely,

My my, such a to-do this week. Over precisely what? If you have received actual death threats, for heaven's sake take them to the police, now. Or are you just exagerrating your lack of popularity in the patient community?

If you really have received threats (and if so, that's what the law is for), then here is my response to you:

1. There are an estimated 250,000 patients in the UK suffering from M.E. Statistically speaking, it's probable that some within that large community might be personally unbalanced. It's irresponsible to use those few as an excuse to mistreat the rest. How have you mistreated them? In this particular case, by trying to scare off researchers and clinicians who might seek to help these people, many of whom are invalids.  You also blow a smoke screen so the press doesn't notice there's professional and sober criticism of your pet theories and research.
     This is irresponsible for a medical professional, and irresponsible for all those media outlets to give you so much space with which to condemn 250,000 sick people. Shame on you, and shame on them.

2. The researchers who I know who have left the field did so because of threats from their bosses and ridicule from colleagues, not patients, plus a lack of funding for biomedical research. Your outcries might perform the same function. Now why would you want that?

3. Things got pretty hot in the breast cancr community when they were debating full mastectomy v. simple lump removal, but nobody suggested stopping research into breast cancer.

4. If email had been available in the mid-1980s, does anyone believe the desperately sick and ignored AIDS community would never have sent insulting emails? To someone who insisted they were somaticizing?

5. How convenient that the press plasters Simon's paranoia all over the place, but the stories printed about ME/CFS in the NY Times and Wall Street Journal in the past year never got a peep in the British press - now why is that? Do you believe Americans are more polite? Not likely, is it? Do you think it might have something to do with the SMC, which you helped found? Has the British press really sunk this low?

There were lots of stories involving M.E. and CFS that could have been covered by the British press this past week. A committee has come up with a new definition of M.E., based on biomarkers and biological evidence, soon to be published in the Journal of Internal Medicine. That's certainly worthy of coverage. New biomarkers have come out of the New Jersey School of Medicine and Dentistry. But the British press doesn't cover the evidence that M.E. and CFS (Fukuda 1994) or ME/CFS (Canada 2003) are not caused by somaticizing (the physical expression of emotion).

In 1999, Harvard University medical professor Anthony Komaroff declared in the Journal of American Medicine that with thousands of refereed journal articles into biomedical symptoms, correlations, tests, and possible causes of CFS (Fukuda 1994), it's time to put an end to the psychiatric explanation of the disorder. He has not changed his position (except to note there are now thousands more). How long will it take for that information to reach British shores? Twelve years of silence is a very long time.

When will responsible scientists, journalists, and representatives of the government finally put an end to the monopoly of information in the UK by psychiatrists, with regards to both CFS and M.E.? WHO has coded M.E. under neurology, not psychiatry, since 1969. Why is all the information on this disease printed in the UK tilted towards psychiatry? It certainly hasn't helped the patients, who remain sick (with an estimated 65,000 housebound or bedridden). People have died from this disease, and at some point in its course it is apparently contagious - why keep shoving it under the rug?

Gosh, do you think it has anything to do with the monetary inconvenience it would pose for insurance companies and penurious governments if this disease were taken seriously - if the biomedical research was portrayed honestly?

I fear George Orwell's dystopia has arrived - 27 years late.

6 comments:

  1. Cheers

    being in the UK is an eternal smack in the chops.

    It amazes me how Reeves and Wesley sung from the same song sheet as soon as the WPI XMRV Science paper.

    It was as though they had an international agreement on what spin they would put on it.

    Imagine a press where the underfunded where as represented as the well funded.

    I know, silly idea.

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  2. Mary,
    Brilliant letter. There is a limit to how much abuse and bias any group of people will tolerate. Here we are talking about people's lives. This is 2011. It seems that the U.K. or at least the medial and media systems there still live in the dark ages.
    Just follow the money trail. That's what it's all about!

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  3. There's an old phrase, "sin boldly", which (in my interpretation) means if you're gonna do something illegal or immoral, do it in a REALLY BIG way and people are less likely to notice.

    In this case, it's easy for the general public (as well as the press) to write off BIG claims (eg that Wessely is receiving monetary compensation from insurance companies, that his wife is controlling what gets in the British press, that Wessely is making up death threats while at the same time being responsible for prolonging the suffering of severely ill people) as "paranoia on the part of the patients [who are "crazy" anyway]".

    Not like claims of small stuff such as shoplifting, or sexual dalliance, or over-prescribing of medications (which the press and the public would be eager to accept).

    Going back 70 years, one of the reasons the early reports of Nazi mass killings and other atrocities (some reported by people who were eye-witnesses) were largely ignored by Britain and the US, is that these stories seemed too over-the-top to be believable; perhaps Wessely and his colleagues are counting on today's press and public to ignore the eye-witnesses to his own actions?

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    Replies
    1. It's called the Big Lie - a lie so big everybody thinks it must be true.

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  4. My physical expressions of emotion are usually hand gestures whose meanings are unmistakable, at least to someone from my own culture.

    If CFIDS/ME were really a physical manifestation of emotions that the person doesn't know how to express, wouldn't it be far more common in men than in women?

    When a physician complains that a sick patient is "somticizing," I conclude that the physician is "idioticizing"--outwardly expressing his stupidity.

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  5. When Australian researchers, Doctors Barry Marshall and Robin Warren first proposed that stomach ulcers and even their associated carcinomas were caused by a bacteria that could be cured by antibiotics the medical world turned against them with a vengeance, vilifying and ridiculing them as quacks and charlatans. However, they stood their ground through a decade of abuse until today (thirty years later) 'Triple Therapy' is the standard treatment for most gastric ulcers.

    Right now the scientific buzzword is 'Epigenetics' where research on identical twins - who have been separated at birth or suffered different life traumas - has uncovered the truth that the genetic code we are born with can be changed during our lives, whereby twins born with identical DNA no longer have identical DNA in adulthood, with all the health implications that that implies. This is staggeringly new understanding, but nonetheless scientifically proven, so maybe in a few years we will all look back on such scientific Luddites like Dr Simon Wessely and recognise them for the hindrances to progress that they truly are.

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