June 8, 2010


ME + me:  Another good article in the Daily Mail, by a doctor


Yesterday there was no Nederlog, since I was sad, not well, and occupied as well with writing mails and other things.

Today I am a bit less sad and a bit less unwell, and if I get as far today I will add another Nederlog about forums for persons with ME (no promise though), but I just got this bit now, which I quote in full from the Daily Mail, because I really like it.

It is by "Dr Martin Scurr" who "has been treating patients for more than 30 years and is one of the country's leading GPs", as the Daily Mail says, and doctor Scurr writes a health-column in it, that yesterday contained this bit, that's linked to the original in its title, and that is fully quoted minus a photo, and I also supplied a link in it to a Nederlog I wrote about the 5th World Conference on ME/CFS:

By the way... at last I've been convinced that ME is real

ME can be difficult to diagnose

I admit it, I was wrong. For many years, I - like many of my medical colleagues - have blamed ME on psychological or behavioural causes.

Then, last month, I attended the 5th World Conference on ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

There I spoke to a number of experts who were emphatic that the evidence shows the condition really does have a viral origin.

This has never previously been clear - before, there had been only hazy circumstantial evidence. There have been two problems really; first, identifying the cases - who does and who does not have ME/CFS?

The second, how to tell if any identified bacteria or virus is actually the cause of a disease, or merely there by chance (and not actually involved in the disease process).

When it comes to diagnosing ME, it's always been difficult distinguishing it from another common but hard-to-prove condition, depressive illness. Both involve the major symptom of fatigue - a gross tiredness unlike any other, such is its overwhelming severity.

Both are associated with sleep disturbance, impairment of memory and concentration, emotional symptoms - indeed, there are many in the medical profession who have long considered that those who believe they have ME/CFS have a form of depression and are in denial.

But there is one challenging difference: those with ME/CFS have a flare of their malaise lasting at least 24 hours after physical exertion, whereas people with depression - if they can manage exercise - tend to be briefly a bit better.

At the conference, a number of plausible ideas were advanced for the condition, including one from Professor Brigitte Huber, an immunologist from Boston. She explained that 8 per cent of all the DNANA in our bodies is basically a form of infection - it's become incorporated into the genetic code of our cells.

This infection 'gene' gets switched on whenever you catch a common viral illness - such as glandular fever or herpes simplex (the type that gives you cold sores). T his triggers the immune system to pour out vast quantities of chemicals which cause widespread effects such as muscle pain and exhaustion.

In most patients, this reaction stops after a week or two as they recover - the immune system puts the infection gene back to bed.

But in a small number of people this doesn't happen, so the immune cells continue to be activated, causing grief, and the illness becomes ME/CFS.

Knowing why this happens still needs to be explored. But it is an exciting time and some solace to those who have this awful illness and have never been believed.

Let me first notice that the Daily Mail had a very good article with an interview with mrs. Criona Wilson - Sophia Mirza's mother: see Sophia and me - who is a brave, smart and wellspoken woman:

Now let me list why I do like Dr. Martin Scurr:

First, it is courageous: Many of his medical colleagues in England think otherwise, or say they think otherwise, or do not want to commit themselves. Therefore it is very heartening to see a medical doctor who honestly admits having been mistaken, and that about a subject that is still controversial.

And perhaps I should add here a little most people who are not medical professionals of some kind are not fully aware of, if at all, because they didn't have the education: Medical doctors, when training as medical students, do develop strong tendencies to protect each other; not to tell on each other; to defer to colleagues rather than patients, and so forth.

There are some excellent stories of this, from people who did train as medical doctors, and they do not make happy reading, though the colleagiality of doctors makes considerable human sense: They do difficult work; they take considerable risks themselves, especially if they are good doctors; people who have been hurt are not inclined to fairness or kindness a.s.o.

All of this plus the fact that medical doctors are - also - in it for the money; have their own family and life to lead; certaintly can't know more than a small percentage of the relevant medical literature in almost any case they meet; and normally have to take some sort of decision in a limited time with at best only partial information, makes this a lot more palatable than - to name one example - the colleagiality of bankmanagers or of bureaucrats.

Second, it is very nice to see a medical doctor who did have the initiative, the intelligence and indeed also the courage, in view of the status of ME/CFS among medical people, especially in England, to go to the 5th World Conference on ME/CFS.

Third, it is all in Dr. Scurr's favour that he does let himself be convinced by evidence, for that also is not - as quite a few people with medical or psychological degrees have learned, including me - a self-evident thing at all, in medical people (and in exoneration: in non-medical people too).

Fourth, it is both honest and courageous to write this in a daily paper, especially in England, where it may be feared Dr. Scurr or his editor gets an angry call from KCL, making vague threats (as I have read prof. Wessely doing to others with degrees and a career).

Fifth, Dr. Scurr's article is good: Though brief - and his space must  be limited - it is fair, accessible and clear.

Sixth, undoubtedly Dr. Scurr is a good GP, but I do not recommend English persons with ME to start finding him, because good GPs are very hardworking people and really can't work miracles, and because - as he implies - a regular GP can't really do much for a patient with ME - other than being fair, kind and helpful, and not telling lies, that is, which is a lot in case of ME - however much he would like to, and besides works in a tight timeframe.

But the article is important, because other GPs and medical doctors read papers too, and hear from colleagues what colleagues wrote, especially in the media. And Dr. Scurr's article, I expect, really will help quite a few medical doctors to spend at least some more time on finding out what this disease is about, and to take some trouble at least not to tell people with ME that they thought themselves ill, and are to blame for their own condition.

So I am glad to have read the article, and to see and be able to register the fact that there are good medical doctors, and there are doctors who dare to face and write the truth, even if doing so is unpopular.

Very good - and thank you very much Dr Martin Scurr!

P.S. As I said: There may be another Nederlog today about forums for persons with ME, but it is no promise, and may also arrive tomorrow, or even later, simply because I am not well.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

Maarten Maartensz

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