Below are two letters:
1) The Referendum on ME Research which has been sent to all 646 MPs (after the Yes and No options were two boxes for MPs to tick. I was able to print it off that way but not commit a pdf version to file or cut + paste).
2) A supporting letter. It is preferable that people write their own letters, but please use the attached if you require assistance.
MPs Referendum on ME Research
There are an estimated 240,000 people with Myalgic Encephalomyelitis (ME) in Britain. Of these, one quarter are severely affected, some to the degree that they are permanently bed-ridden, and cannot attend to basic needs; others, sadly, die. Apart from death and human suffering, there is also the matter of cost to the country. A study by Action for ME May 2006 estimated the cost at £6.4 billion per annum.
The World Health Organisation lists ME as a neurological illness (ICD 10 G93.3) and the following research shows abnormalities in groups of ME patients:
Muscle: Altered metabolism – Fulle et al., 2003; Vecchiet et al., 2003. Enteroviral sequences in muscle – Lane et al., 2003; Douche-Aourik et al., 2003. Abnormal response to exercise – Paul et al., 1999; McCully et al., 2004.
Brain: Metabolic abnormalities – Puri et al., 2002; Chaudhuri et al., 2003.
Vascular: Endothelial dysregulation – Spence et al., 2000; Khan et al., 2004. Altered brain perfusion – Costa et al., 1995; Tirelli et al., 1998. Orthostatic hypotension – Naschitz et al., 2002; Stewart et al., 2003.
Biochemical: Oxidative stress – Kennedy et al., 2003; Vecchiet et al., 2003. Dysregulation of anti-viral
pathways – De Meirleir et al., 2000; Tiev et al., 2003.
Gene Research: The ongoing research of Dr Jonathan Kerr has found (1) that there are seven subtypes (2) evidence of different clinical symptoms and severity for each subtype.
Please note that this research is either being carried out abroad or funded privately in the UK.
We are canvassing MPs’ opinions on the subject and would be grateful if you would fill out the questionnaire below.
MPs Referendum on Research into Myalgic Encephalomyelitis (ME)
Yes, I think the British Government should be funding research into the underlying physical causes and disease process of ME.
No, I don’t think the British Government should be funding research into the underlying physical causes and disease process of ME.
Please return to RiME,
10 Carters Hill Close,
London, SE9 4RS
by May 31 2008
House of Commons
MPs Referendum on ME Research
If you haven’t by now, you should shortly receive from RiME (Campaigning for Research into ME), the above document asking whether or not you think the Government should be funding research into the underlying physical causes and disease process of the neurological illness Myalgic Encephalomyelitis (ME). I urge you to tick the YES box.
In January 2002 the Chief Medical Officer’s Report on CFS/ME recommended research into all aspects of CFS/ME, p.69:
A programme of research on all aspects of CFS/ME is required.
Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.
In particular, research is ungently needed to:
Elucidate the aetiology and pathogenesis of CFS/ME….
Six years on the Government, to my knowledge, has not invested a penny in biomedical ME Research and I find this totally unacceptable.
ME patients (and their relatives) have paid billions into the Treasury coffers over the years. I wonder if you can understand why the former are desperately disappointed that the Government has not invested part of this money in biomedical research so they have the chance to recover and take up/resume a useful position in society?
Whichever choice you make, I ask you not to simply forward this letter to the Health Department. When this course has been taken, in the past, they have merely replied with the repetition of a statement which does not address the need for biomedical research but details how the Government is putting token amounts of money into psychiatric / psychological models of treatment, which have no scientific justification. I would prefer not to see another of these unhelpful responses. I look forward to hearing from you.