I know two women whose lives have been shattered by ME, and I can tell you their suffering was very real, and not “all in their minds”, as some might believe.
Myalgic Encephalomyelitis, or chronic fatigue syndrome, affects an estimated 250,000 people in the UK. I’m highlighting it today following a significant legal victory for two ME sufferers after a leading judge declared it was “in the public interestâ€? for the High Court to rule on claims that treatments being offered on the NHS are “potentially fatalâ€?.
Kevin Short, a university graduate from Norfolk, and Douglas Fraser, of London, a former professional concert violinist with the Scottish Philharmonic Orchestra, have both had their careers curtailed by the condition’s crippling effects. Both men were outraged when, last August, the National Institute for Health and Clinical Excellence (NICE) issued new guidelines for the diagnosis and management of ME.
They say that, in its guidelines, NICE refused to classify ME as “a disease of the nervous systemâ€?, as the World Health Organisation has done, and recommended treatments which they argue are “harmful to patients” or could even prove fatal.
Mr Fraser and Mr Short took their fight to have NICE’s decision overturned to London’s High Court.
Barrister Jeremy Hyam, for the two men, explained that NICE guidelines recommended that ME sufferers be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in an effort to alleviate their symptoms, yet one sufferer collapsed and died coming out of a gym after taking part in the GET programme.
Mr Hyam argued NICE had failed to take into account any evidence apart from that unearthed by its controlled clinical trials, which he said were not extensive enough. NICE had made its recommendations “based on inadequate evidence” and “failed to apply rational and consistent diagnostic criteria”,
Mr Justice Cranston expressed doubt over whether it was the court’s place to rule on medical or scientific matters, but was in the end persuaded that legal issues of “great public importance” were at stake. Giving his judgement, and granting permission to seek judicial review, the judge said:
“There is no doubt that, as with any debilitating condition that a person may suffer, many of us will know someone, or be connected to someone who has ME or chronic fatigue syndrome. It is a serious condition and the two appellants in this case have suffered a great deal as a result of it.
“Given that there is this obvious clash between the bio-medical and the psychosomatic theories of the cause of this condition and the great public interest therein, it seems to me that this case ought to go forward to a full hearing.”
The case will now go ahead to a full High Court hearing at a date yet to be fixed.
A letter in today’s Eastern Daily Press from ME sufferer Linda Crowhurst said this ruling gave hope to all those afflicted by this devastating condition. She writes:
“I am severely affected and my ME needs go completely unmet in Norfolk. Luckily, I have a very supportive GP, who knows that my condition is neurological, but his hands are tied when it comes to referring me to consultants because there is not the interest, the knowledge, the understanding or the availability of biomedical clinicians to treat me. I am left with virtually nothing, no hope and, worse, no biomedical understanding to ease the pain, the numbness, the digestive, the autonomic and endocrine issues: the 50 plus symptoms that I have endured.
“I want to be able to access services in Norfolk as any other person with a chronic illness is able to do.”
Let’s hope this ruling will pave the way for more research into this terrible, debilitating illness.
If as many as 250.000 are sufferers, more needs to be done with this than dismissing it, as many do.
It obviously isn’t in the mind. I’ve known three well motivated and high achieving people who have been struck down with it.
It’s certainly a debilitating disease that needs more acceptance of being a disease instead of trying to find psychological reasons for the symptons. However it all takes time and while that is happening lives are wasted and there is no recourse to any type of treatment.
Kevin, I also know of a teenager who was struck down by this debilitating disease.
JMB, you are quite right. In the case of the women I know, I would say it has taken about eight years for them to turn the corner.
NICE is running true to form, once again. Exercise is the worst thing for ME, I am told. Counselling would possibly be helpful as a support therapy but not CBT. What planet are they living on?
I know one writer who suffered from it and finally got over it but it took years. What a waste of life while these people suffer without help. Makes me mad….
These are the things to one side of most people’s daily reality and they do not get the attantion and support they deserve. Well done, Ellee.
A genuinely tragic situation for the sufferer. I know a couple of formerly dynamic people whose lives have been ruined by ME.
And thank you, dear, for your sympathetic comments on my blog. They were much appreciated.
This is an interesting case. ME began with bad press that often ignored the reality of the illness. It is even used as a throwaway remark by some Neuros I have met – oh, MS? No, probably ME – as if that is meant to be good news and send you smiling on your way from the consultation. (PS They were both wrong in my case).
I very close friend of mine got struck down with this disease, it is an awful thing. I am so glad that over time she was able to recover.
I think the problem is that originally the medics didn’t understand it and therefore thought it wasn’t a medical condition but all in the mind. That thought seems to have lingered on even though it is a recognised physical illness now.
I know 3 people who have ME. The Professor of Philosophy was in hospital last week after her partner was concerned that she had had a turn.
This in turn stressed him out. And when he came to see me, to bring me up to scratch and help me out financially, he got upset by what he called my obsession with blogs and the McCann case. I misread the situation and my empathy did not appear to show through, it’s down to my AS, and he ended up storming out.
When I rang him tonight to report this post on ME, he said he was a bit short with me the other night ( the Great Yorkshire Understatement), I said “yes, never mind that now…”.
To answer your title question, we blog about it like you have done. Far more important than the Usmanov campaign. Spread the word. Collate the responses.
Well done for highlighting this, Ellee. I have 2 close friends who are sufferers so know something of how this disease can devastate a life.
My pastor’s wife (& my friend, I should add) has had this for years and as a result, they were not able to have children. She is so intelligent, with an MA in English, but has to be so careful with what she does. She also has food allergies that they feel is part of it. Thanks for bringing this to light – it is a disease that is worldwide.