On Sunday 7th August, the Sunday Times (London) published only two letters in response to the provocative and inaccurate comment piece by Rod Little the previous week ("Shoot the medical messenger - see if that'll cure you" 31st July 2011
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1107e&L=co-cure&D=1&T=0&O=D&P=4465). As the letter from ME Research UK was considerably truncated in the printed version, a fuller version is pasted below.
Letters To The Editor
Sir
As the leading funder of biomedical research into ME/CFS, we must take issue with Rod Little's comment piece about "extremist" ME activists ("Shoot the medical messenger - see if that'll cure you", Comment, last week), which was as immoderate as the outrageous behaviour he was criticising. The National Institute of Clinical Excellence estimates that there are around 193,000 ME/CFS patients in the UK; most of them (around 192,990, I expect) have never threatened scientific researchers. So why did Rod Little paint a word picture - "malingering mentals", "foaming paranoia", "weird retrovirus", "grim and livid" etc. - tarring thousands of ill people with the actions of a few?
It was an ugly spectacle, but even worse were the errors of fact studding his comment piece, as four examples illustrate. First, many ME/CFS patients report becoming ill suddenly, often from a viral infection, and some remain chronically ill for decades thereafter; so, when they mention the possibility of infection, they are not necessarily pathologically wedded to a "weird" viral theory but simply making an obvious point. Second, "political correctness" has nothing to do with the naming of the illness; ME goes back 60 years, CFS 25 years, and we use the term "ME/CFS" at the moment until more is known about each. Third, there is a legitimate academic debate about which model - biomedical or biopsychosocial - best fits the illness, but it's not true that evidence for the former is "non-existent"; if anything, the biomedical model predominates in academic circles across the world. Last, more than 90% of official grant-spend on ME/CFS in the past decade has gone on research into cognitive-behavioural approaches to help patients manage their symptoms and cope better. These are the "palliative treatments" that Rod refers to, but even the advocates of these approaches recognize that they benefit only a small minority of patients over and above standard medical care, and are not the answer to the biomedical enigma at the heart of ME/CFS.
People with ME/CFS deserve better than the picture painted by this grim, inaccurate comment piece. Be thankful, Rod, that it's not you lying there in bed for years with a protracted physical illness.
Yours sincerely
Dr Neil Abbot
ME Research UK
The Gateway
North Methven St
Perth PH1 5PP, UK
http://www.meresearch.org.uk/
ME Research UK is a registered charity (SC 036942). Our principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS, but we also have a mission to "Energise ME Research"
