Letters published in ‘The Observer’, 28 August 2011, in response to Robin McKie’s article last week

In response to Chronic fatigue syndrome researchers face death threats from militants (Robin McKie), Observer, 21 August 2011.


The big issue: Extremism has no place in the quest to find a cure for ME
There is a crying need for research into the organic causes of ME


I deplore the threats directed at Professor Simon Wessely and others, but there are strong reasons for taking exception to his views and their influence (“Scientists face stream of ME death threats”, News).

There is no generally accepted diagnostic marker for ME, so that the occasional patient with purely psycho-logical problems may be diagnosed with ME and restored to health by the means he proposes. Besides, people with a wide range of disorders derive some benefit from symptom management techniques. But in general, cognitive behaviour therapy and graded exercise therapy do not restore ME patients to anything near normal functioning.

There is a crying need for research into the organic causes of ME. Let’s hope the activities of a few misguided activists will not alienate potential researchers.

Dr Patricia de Wolfe
London SE13


Perpetuating tales of a tiny minority of extremists does grave disservice to the many thousands who simply struggle on through years of illness, housebound, bedbound and in distress. And it only serves to discourage the very scientists we are trying to recruit into this grossly underfunded area of research.

Sir Peter Spencer
Chief executive
Action for ME
Bristol


Your article was disturbing on two levels. First, because it highlighted the unreasonable responses of some towards those researching ME. Second, because it indicated that part of the syndrome for some sufferers appears to involve a reluctance to get better. I write as someone who has suffered the condition and who also has a depressive illness.

I would awake feeling well and then physically collapse about an hour into the day. I started mowing some paths one morning before the onset of the fatigue in the knowledge that I would probably injure myself if I collapsed and fell off the ride-on mower. One half of my psyche was telling me to collapse, while the voice of reason said I couldn’t because I would hurt myself. The latter won. Over the course of the next few days, I was able to hold the fatigue at bay by carrying out similar exercises until the condition passed.

Having already accepted that I had a mental illness, it was not a problem accepting that the ME had been brought on by a very stressful life situation.

Colin Boylett
Kington, Herefordshire


May I draw attention to the different approach which is used in treatments such as Mickel Therapy. These therapies find the roots of CFS and ME in primary emotions and their effect on the hypothalamus, so that the very real physical illnesses are essentially a symptom of them. These approaches say that the key lies in recognising these fundamental emotions and taking constructive actions based upon them. Therapies of this kind have had great success in treating clients who, through embracing them, have recovered from their debilitating and distressing conditions.

Andrew Whiteley
Consett, Co Durham


People are justifiably angry at the way it has been left to patients and charities to fund biomedical research into ME/CFS. The Medical Research Council has now set up an expert group. A list of research priorities has been identified, along with £1.5m of funding for biomedical research. Applications are now being peer reviewed/assessed.

Dr Charles Shepherd
Hon medical adviser
ME Association
Gawcott, Bucks


I would point out the chronic neglect that we patients have suffered from the medical profession. We are often the subject of vilification, abuse and ridicule. People are angry and bitter. This is in addition to the burden of being chronically ill, the isolation and the financial difficulties that come from being incapacitated.

Claire Gittoes
Crowborough, East Sussex

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