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Wednesday, June 9, 2010

#69~ Reactions to UK Dr admitting that "ME is REAL"


Re: By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010 #1

As a sufferer of severe ME (unable to sit up in a wheelchair since a viral infection 14 years ago), I would like to applaud Dr Scurr for his courageous and honest article admitting that, after attending the Fifth World Conference into ME/CFS, he realizes he had been wrong to attribute ME to psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). 

I hope and pray that his medical colleagues will have the courage to follow his example!

Yours sincerely
Veronica Jones
There is no doubt about the warmth of the reception that Dr Martin Scurr will receive from people who have suffered with M.E. (Myalgic Encephalomyelitis) for years, together with the disbelief and derision that accompanies it, now he has had the guts to admit he was wrong to believe that it does not exist (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). It will be instructive to see what is the public response he receives from his fellow professionals, who still put M.E. patients through the same mill and whether he has a cold shoulder to deal with behind the scenes.

We know, from private correspondence, which begs for confidentiality and anonymity, that there are many more doctors and nurses out there who think the same and also that many of them suffer in silence with M.E. themselves but prefer not to defy the authority of the Medical Profession in such august bodies as the Royal Colleges and NICE (National Institute for Health and Clinical Excellence), who dictate the terms to GPs, for fear of the same sort of treatment meted out to patients.

If you journalists still don't believe it, you're going to have to go under cover to get the real truth for yourselves.

It shouldn't be necessary for doctors to have to confess they were wrong, if they were prepared, from the start, to admit that they just don't know what M.E. is but are willing to find out. The people best placed to teach them are the patients themselves, if they will only listen.

And look what happens when they do: Dr Scurr now understands that post exertional malaise is a cardinal symptom that separates M.E. from the TATT (Tired all the time) brigade. He should also know that a kind of dizziness, called Orthostatic Intolerance is key. There is still a way to go: M.E. is not fatigue. It's extraordinary that people, who admit that the experience of M.E. is not the same at all, continue to use the same name. If you know someone who has clinical depression, you know that you should not be using the same word for M.E. It's perhaps on a bigger scale than trying to say that a bad cold is flu.

This isn't mere pedantry or fussiness over language. Continuing to regard M.E. in these ways is seriously impeding progress towards find a cure for all illnesses in the Chronic Fatigue Syndrome bundle. I hope that Dr Scurr has opened a can of big fat juicy worms.

Our friends at Invest in ME deserve a big pat on the back for repeatedly providing the annual conference venue that formed the basis of one honest doctor's conversion. Thank you.

Yours sincerely
Dr John H Greensmith
ME Free For
Dear Dr Scurr,

Thank you for admitting publicly that you were wrong to have incorrectly placed blame for the cause of ME on psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010).

That you have had your view changed is down to the fact that others within your profession were always convinced that the blame was viral in origin. They stood by that view and looked for supporting evidence even though it would have been far easier for them to have gone down the
psychological/behavioural route. 

Sufferers such as I, who have had the condition since 1988 - aged twenty three - following Glandular Fever, have had to cling to hope that one day biomedical research will be able to finally fully exonerate us.

It is often only that hope which has got many of us through the years of disbelief and the dreadful symptoms that we experience on a daily basis living with ME. I don't think we are fully there yet despite the haze being partly lifted but what I do hope is that you will further help to support those experts that have helped to convince you, as there are also people within your profession claiming expertise over this condition but have far more of an influencing input, yet despite the evidence you cite, still remain totally convinced that ME is a psychological/behavioural disorder.

Your Sincerely
Ian McLachlan
by e-mail

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