A Heartfelt New Year Wish

My heartfelt wish is that people with power will support research into biomedical causes of ME.
This is MeFreeforAll's response to the NICE trial and the Gibson Parliamentary Enquiry.

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We need more M.E. research


Most sufferers with M.E. (Myalgic Encephalomyelitis) would not be able to lift the 269-page draft consultation document produced by the National Institute of Health and Clinical Excellence (NICE) let alone concentrate sufficiently to appraise its contents.


And then, just like London buses, along came another report from a Parliamentary inquiry, chaired by Norwich MP Dr Ian Gibson.


The NICE draft proposals have been comprehensively condemned by every M.E. group. The principal criticisms include an over-emphasis on psychological factors and lack of recognition of a neurological cause. The Gibson inquiry is to be welcomed because it seems to put a call for more funding for biomedical research and for establishing specialist treatment services around the UK in the correct order; that is, research first, then treatment based upon its findings.


But it looks as though the treatment-before-cause model approved by NICE will go ahead despite lack of patient approval or scientific endorsement.


In addition to the experience of M.E. sufferers, who took the advice of well-meaning GPs to exercise and ended up in wheelchairs, a study by the 25% Group, which represents severely affected people with M.E., showed that 84% were worse after such regimes.


Nor, where they are already in existence, have the specialist clinics done much to justify receiving money to maintain them as they are. The experimental methods are riddled with flaws; the diagnostic terms are ill-defined and bundled together, making generalisation impossible; treatment combinations are not consistent, there are hidden, unreported, statistics; and some patients are pushed beyond their limits - and there are even allegations of bullying.


Far from agreeing that cognitive behaviour therapy and graded exercise should be the treatment of choice for M.E. sufferers, ME Free For All.org suggests that it would be better to have no treatment at all than one that may do you no good or, worse, one which may be harmful.


For these reasons, ME Free for All.org is not the only ME charity which recommends that these services, in their present from, are suspended pending further biomedical research, in order to seek a definitive diagnostic test which may in turn suggest treatment towards a cure. Only after this would we welcome specialist safe and effective treatments for people with ME.


Dr John H Greensmith,
MEfreeforall.org , Bristol.