RiME: MPs Referendum

Please circulate widely on behalf of RiME

Campaigning for Research into ME (RiME)

In April RiME wrote to all 646 MPs about biomedical ME Research (see below, there are two boxes after Yes and No options on paper copies).

So far, 57 have ticked the Yes Box; they are:

Lib Dems: Danny Alexander, Norman Baker, Tom Brake, Paul Burstow, Lorely Burt, Sir Menzies Campbell, Nick Clegg, Tim Farron, Lynne Featherstone, Andrew George, Sandra Gidley, Mike Hancock, Chris Huhne, Paul Keetch, Charles Kennedy, Susan Kramer, Norman Lamb, John Leech, Mark Oaten, Dan Rogerson, Adrian Sanders, Andrew Stunell, Matthew Taylor, Sarah Teather, John Thurso, Mark Williams, Roger Williams, Phil Willis. 28

Labour: Dr Roger Berry, Ronnie Campbell, Katy Clark, Jeremy Corbyn, David Drew, Bill Etherington, Dr Ian Gibson, Fabian Hamilton, John McDonnell, Michael Meacher, Julie Morgan, Austin Mitchell, Virendra Sharma, David Taylor, Rudi Vis, Joan Walley, Mike Wood, Anthony Wright MP. 18

Conservatives: Stephen Dorrell, John Greenway, Philip Hammond, John Horam, Hugo Swire. 5

Others: Dai Davies (Ind), Richard Taylor (Ind), Mark Durkan (SDLP), Lady Hermon (UU), Elfyn Llwyd + Hywel Willliams (PC).

No fewer than ten MPs say they don’t seem to have received the Referendum or couldn’t find it (which means there might be many more). We wonder if there might be a filter system whereby secretaries only pass on certain information to MPs. So, if your MP’s name is not on the list above, please get in touch and ask if they have received it. If they haven’t, let us know and we’ll get another out.

Good wishes,

Paul Davis


Campaigning for Research into ME (RiME)


MPs Referendum on ME Research

April 2008


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., 20003.

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.

Yours Sincerely,

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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.

Signature …………………..

Printed ………………….. Date …………

Please return to RiME, 10 Carters Hill Close, Mottingham, London, SE9 4RS


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