Responses to Financial Times article

Letter to the Editor from Neil Riley

As Chairman of The ME Association, I am delighted that Margaret McCartney turns to our website for information about this devastating illness we call myalgic encephalopathy ("if it’s in the mind, it’s still the real thing”). 

However, our website statement that “we continue to seek scientific evidence that will show that this illness is a real and physical one” contains no subliminal message underplaying psychological illnesses. We accept wholeheartedly that psychological illnesses are as real as physical ones.

 

What we do say is that there are many patients with ME whose illness is the result of an immunological or other “physical” abnormality as opposed to a psychological disorder (like a fear of spiders) or psychosomatic condition (like tension headaches). There have been localised outbreaks of ME since 1934. To my knowledge there have been no local epidemics of headaches or stress.

 

As to the behavioral treatments proposed by the National Institute for Clinical Excellence, Dr. McCartney is quite right in saying that these can be used to improve the quality of life of people who have diabetes or cancer but , unlike people with ME, that is not the principal treatment offered for their illness. If it was, you would have diabetics and cancer patients yelling from the rooftops.

 

As someone who has had ME for 21 years following an acute viral infection I am well aware that chronic ill health can have psychological side effects and that those must be addressed. But you will understand that as I look out at our beautiful garden, think of my wife and daughters and realise what a lucky man I am, I have some difficulty coming to terms with the idea that ME is a somatic illness, for whilst my mind is sound and well, the rest of my body is not.

Neil Riley

Chairman, The ME Association 

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Letter to the Editor from Dr Charles Shepherd 

Imagine developing a severe disabling neurological illness that may then be dismissed by your doctor as being ‘all in the mind’ or even ‘non existent’.

 

Then discovering that not a single penny of government research funding is being directed towards research aimed at finding the underlying physical cause of this illness.

 

And finally being told that cognitive behaviour therapy (CBT) and graded exercise therapy (GET) –  the only two basic treatments recommended by the National Institute for Health and Clinical Excellence (NICE) – were found by many people to be "unhelpful", or even made their illness "worse", in a report produced by the government’s Chief Medical Officer.

 

This is why people with ME/CFS feel so angry with the current situation.  It has nothing to do with denigrating illnesses that are normally regarded as being psychiatric or psychological – they are just as real and disabling as those that are normally regarded physical, and there is also no dispute that mind and body can interact. 

 

I suspect that if Dr McCartney ever has the misfortune to develop ME/CFS then she might start to agree with some of the very valid points that the patients are making.

 

Dr Charles Shepherd

(Physician with ME following chickenpox, which he caught from one of his patients)


 

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