Friday, February 11, 2011

APPG on ME 16th Feb 2011 REVISED QUESTIONS for MPs

by Chris Douglas on Thursday, February 10, 2011:

Further to the MRC's announced £1.5m budget for 'CFS/ME' and the recent Adjournment Debate on ME research, here is a revised list of questions to put to Stephen Holgate (Chair of the MRC's 'CFS/ME' expert group) who is due to attend the APPG on ME meeting on Weds 16th Feb.

Please consider sending these questions to your MP and asking if they can be put to Stephen Holgate on the day. Contact details for APPG MPs are listed below the questions.

16th February 2011
Questions for Stephen Holgate
(post MRC announcement of 27 Jan 2011)

Question 1: When did the MRC allocate £1.5m to ME research? It has been suggested that funds were allocated soon after the MRC’s ‘CFS/ME’ expert group meeting in June 2010. If this is true, why was the announcement delayed and timed so close to (a) the APPG on ME meeting (16.2.11) which Prof Stephen Holgate (Chair of the ‘CFS/ME’ expert group) is due to attend and (b) the Adjournment Debate on ME research (2.2.11)? Was this timing intended to dilute ministers’ inevitable challenges to the MRC’s poor record in funding biomedical ME research 1?

From 2000 to 2003: £0 spent on ME research (source: David Willetts’ response to Ian Swales’ PQ, 2.12.10).

In 2009/10: only £109k spent on ME research (source: David Willetts’ response to Ian Swales’ PQ, 2.12.10).

From 2000 to 2010: 0% spent on ME aetiology or underpinning (source: letter from David Willetts to David Anderson MP, 22.11.10) vs an average of 68% across all illnesses (source: UK Clinical Research Collaboration, 2006).

From 2000 to 2010: 80% spent on trials of psychiatric therapies in the absence of research proving a psychiatric cause (source: letter from David Willetts to David Anderson MP, 22.11.10).

Question 2: In the light of this poor record, why has only £1.5m been allocated for 2011 (studies under which may not even start until 2012 given that the grant application process is open until June 2011)? £1.5 million represents just 0.2% of the MRC’s ~£700m budget for 2008/09 which seems particularly low for a disease which is stated to be one of eight key ‘Research Initiatives’.

Question 3: Why has the MRC ear-marked £1.5m for ‘research priorities’ 2 that are predominantly symptoms of the disease and not causes ?

Autonomic dysfunction (malfunction of the nervous system)
Cognitive symptoms
Immune dysregulation (e.g. through viral infection)
Sleep disorders

There is ample empirical evidence (particularly from the US) which explores disease-related symptoms such as fatigue, pain and sleep disorders. For example:
- on post-exertional malaise (PEM), White et al, 2010
- on sleep, Watson et al, 2003:

There is also extensive empirical research on the role in ME of viruses such as herpes (CMV, EBV, HHV6), coxsackie and parvo.

A thorough literature review would yield a significant understanding of these facets of the disease without the MRC having to spend a further £1.5m on their research. This would leave funds free to investigate viral and/or retroviral disease causation, e.g. XMRV (xenotropic murine leukaemia virus-related virus) which is associated with ME as well as breast and prostate cancers and lymphoma.

Perhaps the MRC’s funds would be better spent in supporting UK researchers’ (so far failed) efforts to detect this retrovirus and so allow them to keep pace with US scientists who have moved on to investigating its role in disease causation and potential methods for treating this.

Question 4: Will members of the MRC’s ‘CFS/ME’ expert group be allowed to apply for grants or will they be excluded in order to (a) maintain the neutrality of the group, (b) avoid perceived favoritism and (c) allow greater potential for new researchers to enter the field?

For example, Dr Julia Newton (‘CFS/ME’ group member) has completed several research studies on autonomic dysfunction in ME but without any major breakthrough in terms of understanding aetiology or developing treatments. Will Dr Newton stand back from grant applications in order to allow other researchers in this field to apply?

In addition, cognitive symptoms, fatigue, pain and sleep disorders could be used to create ‘phenotypes’ (i.e. observable characteristics) for ME which are an interest of Dr Esther Crawley, also a ‘CFS/ME’ expert group member. In 2010, Dr Crawley’s team applied to the MRC for £2.5 million to fund a genome wide association study of ME. This application was refused but is being resubmitted. Will Dr Crawley stand back from this resubmission in order to allow researchers with a greater interest in aetiology to apply for funds?

Question 5: Will the MRC accept grant applications from non-UK based researchers and/or encourage joint applications from UK/non-UK collaborations? In this way, the UK could be brought up to speed with the extensive international biomedical knowledge of ME and, specifically, in the latest thinking about disease aetiology.

Question 6: Will the MRC insist that grant applicants use the Canadian Clinical Criteria 3 for recruiting ME patients as study participants (as do US researchers)? Only by using these strictest of international diagnostic criteria can any research conclusions be considered relevant to the neuroimmune disease, ME, and be sure to exclude illnesses which are psychiatric and/or temporarily post-viral in nature.


List of MP Members of the APPG on ME
Peter Aldous MP (Conservative, Waveney)
Dave Anderson MP (Labour, Blaydon)
Tony Baldry MP (Conservative, Banbury)
Harriett Baldwin MP (Conservative, West Worcestershire)
Peter Bottomley MP (Conservatve, Worthing West)
Graham Brady MP (Conservative, Altrincham and Sale West)
Annette Brooke MP (Liberal Democrat, Mid Dorset and North Poole)
Russell Brown MP (Labour, Dumfries and Galloway)
Richard Burden MP (Labour, Birmingham Northfield)
Nigel Dodds MP (Democratic Unionist, Belfast North)
Jim Dowd MP (Labour, Lewisham West and Penge)
Nigel Evans MP (Conservative, Ribble Valley)
Mark Garnier MP (Conservative, Wyre Forest)
Sharon Hodgson MP (Labour, Washington and Sunderland West)
Kelvin Hopkins MP (Labour, Luton North)
Sajid Javid MP (Conservative, Bromsgrove)
John Leech MP (Liberal Democrat, Manchester Withington)
Iain Liddell-Grainger MP (Conservative, Bridgwater and West Somerset)
Caroline Lucas MP (Green, Brighton Pavillion)
Kerry McCarthy MP (Labour, Bristol East)
John McDonnell MP (Labour, Hayes and Harlington)
Sheryll Murray MP (Conservative, South East Cornwall)
Laurence Robertson MP (Conservative, Tewkesbury)
Adrian Sanders MP (Liberal Democrat, Torbay)
Martin Vickers MP (Conservative, Cleethorpes)
Hywel Williams MP (Plaid Cyrmu, Arfon)

Countess of Mar (Cross-bencher, House of Lords; chair of the ‘Forward ME’ Group)
Lord Puttnam (Labour, House of Lords)

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