Thursday, June 10, 2010

Dr Scurr of the Daily Mail changes his mind

On 7 June 2010, Dr Scurr wrote an interesting account detailing how he had not believed in ME, but that he changed his mind after attending a professional conference and being presented with evidence.  The original article is HERE, but you need to scroll halfway down the page to read it.  I have pasted the part of the article that deals with ME here below :
By the way... at last I've been convinced that ME is real
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). This 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.


Note from Sue:  People with ME rarely look as ill as they feel.  Often, people see them doing things and believe that they are always able to do those things.  This is, sadly, not true.  Managing to do something once is not the same thing as being able to sustain the action or do it repeatedly or consistently.  The classic defining symptom of M.E is Post Exertional Malaise, and it hits the person after a delay of 12 to 48 hours afterwards.

And when post exertional malaise or "payback" as it is known, hits the person with M.E, no one sees them because they are in a silent dark room feeling like they have the mother and father of all hangovers, plus the feverishness associated with 'flu and the pain one would expect after running a marathon one did not train for.  This is the face of M.E that the public does not see.

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