More on NICE's not nice guidelines

Telegraph Doctor Supports One Click NICE Judicial Review.
Dr James LeFanu writes in the Daily Telegraph:  NICE policy contradicts verdict of those with ME/CFS. Devastating disturbance of brain function in patients. CBT/GET no good. Daily Telegraph asks patients to write in with the evidence. Contact details provided.

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

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MAY BE REPOSTED


RE:  'Doctor's Diary' -  Monday 19 November 2007

Sir

NICE (the National Institute for Health and Clinical Excellence) clearly have a difficult job to do but as Dr James le Fanu correctly points out they are making a complete mess of trying to help people with ME/CFS.

The problem lies with the way in which a misguided medical profession decided to rename and redefine ME (myalgic encephalomyelitis) as CFS (chronic fatigue syndrome). In doing so they have created a spectrum of illnesses ranging from those who have a recognised neurological condition to those who have a type of chronic fatigue that is indistinguishable from a psychiatric illness.

For NICE to then conclude that everyone under the umbrella of ME/CFS should be automatically offered cognitive behavioural therapy and/or graded exercise therapy - treatments which patients often report are ineffective, or may even make them feel worse - makes no practical or economic sense at all.

No wonder NICE is once again being challenged in the courts and in parliament.

Dr Charles Shepherd
Hon Medical Adviser, ME Association

NB:  The 'Doctor's Diary' item by Dr James le Fanu can be viewed on the MEA website at: http://www.meassociation.org.uk

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The problem with lumping all sorts of fatigue together under the name CFS is that it confounds research.  As in any case of mixing apples and oranges, what applies to one does not apply to others.  One reason they haven't been able to find a cure for CFS is that CDC hasn't been trying very hard.  Another is that the mish-mash of people who really have ME and people who really have depression and people who have everything else in between guarantees that they won't find a treatment that works for everyone, because we don't all have the same disease.

Maybe if we went back to the name and definition of ME for those of us who have the neurological problems to justify that diagnosis, we could get the help we need.  But, since 1988, it has been almost impossible to get an ME diagnosis in the US because of the CDC decree that those symptoms must be called CFS.  I am convinced that I have the post-viral disease that used to be called ME, but finding a doctor who will call it that has been impossible.  Most of them just don't like to buck the establishment.