MRC funding for ME research in year 2009/10 - Only 109,000?

[Bob]

The UK government has given answers in parliament that MRC funding for ME research in the year 2009/10 was only 100,000 or 109,000.

This seems like a very small figure... I was wondering if it is a mistake or if it is accurate... Does anyone have any further info on it?

2 Nov 2010

Mr Tom Harris: To ask the Secretary of State for Business, Innovation and Skills what research his Department has (a) commissioned and (b) evaluated on the relationship between murine leukaemia virus-related virus and myalgic encephalomyelitis. [20350]

Mr Willetts: The Medical Research Council (MRC) is one of the main agencies through which the Government supports medical and clinical research. In keeping with the Haldane Principle, prioritisation of an individual

2 Nov 2010 : Column 751W

Research Council's spending within its allocation is not a decision for Ministers. Such decisions are rightly left to those best placed to evaluate the scientific quality, excellence and likely impact of scientific programmes.

The MRC is committed to supporting scientific research into all aspects of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), including studies into the biological basis of the condition. In 2009/10 the MRC spent 100,000 on research relating directly to CFS/ME. The Government have not commissioned nor evaluated any research on the relationship between murine leukaemia virus-related virus and CFS/ME.

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm101102/text/101102w0003.htm

8 Nov 2010

Earl Howe: As regards research into CFS/ME, the Medical Research Council is committed to supporting scientific research into all its aspects, including studies into the biological basis of the condition and evaluation of treatments. In 2009-10, the MRC spent 109,000 on research directly related to the condition.

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455
http://www.youtube.com/watch?v=cXRjpdBLxKI

It's also interesting to note that the UK government has not commissioned any research on the relationship between XMRV and ME (see the highlighted text, above.)

 

[Bob]

Also,

Lord Skelmersdale asked how much of this research was biological and how much was psychiatric, and was promised a written answer. Hopefully that will illuminate this question soon

8 Nov 2010

Lord Skelmersdale: My Lords, my noble friend gave us the figure for total research into CFS/ME. How much was for biological research as opposed to psychiatric research?

Earl Howe: My Lords, I am afraid I cannot give that figure as it is not in my brief, but I will write to my noble friend.

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455

Does anyone know if the written answer will be automatically published on some sort of parliamentary website, or would I have write to Lord Skelmersdale to find out what the answer is?

 

[pictureofhealth]

Excellent question/distinction by Lord Skelmersdale - finally, someone asked an intelligent question about biological (biomedical) research specifically, to get to the bottom of the matter.

I expect we'll find out that figure was for the PACE trial (illness 'managment') or some version thereof - unless it was for the 1st ever MRC funded biomedical (negative XMRV) study by Bishop/Kerr et al.

I'm not sure where you might find the answer Bob, might be worth writing to Lord Skelmersdale.

Thanks for posting.

 

[Bob]

Have written to Lord Skelmersdale... will keep the forum updated with any replies.

 

[Min]

thanks Bob

 

[ukxmrv]

Thanks Bob, to get previous years figures we have had to put in FOI requests. Hope they have an answer for us. Good luck and thanks!

 

[Enid]

And who can move the MRC - blinkered as yet.

 

[ukxmrv]

Bob, not sure if you have had a reply yet? The Countess of Mar has sent this

Prof White et al – the PACE trial - 73, 405

Dr Clark – General and specific risk markers & preventative factors for chronic fatigue and irritable bowel syndromes 42,698

Dr a Weardon – Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (FINE) - 6982 (this figure related to a reconcilement payment at the end of the tenure of this grant).

 

[Bob]

I got a reply from Lord Skelmersdale today...

The written answer from the Department of Health is as follows:

Expenditure on CFS/ME research in 2009-10 was incurred through two projects funded by the Medical Research Council: a comparative trial of therapies for CFS; and a study examining the causes of chronic fatigue/ME and irritable bowel syndrome in the 1958 British Birth cohort, using data on health, family, education, and occupation gathered in childhood and adulthood before the illness develops. The total spend figure for 2009-10 also reflects a reconcilement payment arising from a completed project.

Details of the spend breakdown are as follows:

Professor P White et al - The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome (73,405)

Dr C Clark - General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes (42,698)

Dr A Wearden - Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (FINE) (-6,892*)
This figure related to a reconcilement payment at the end of the tenure of this grant.

In summary, the MRC's funding for ME/CFS, for the year 2009-10, is as follows:

Grants given:

73,405 (Professor P White et al - The PACE trial)
42,698 (Dr C Clark)​

Total grants given: 116,103

Funds returned: -6,892

Total MRC funding figure for 2009/10 = 109,211 (This corresponds to the figure given in answers in parliament of 109,000)

 

[Bob]

Bob, not sure if you have had a reply yet? The Countess of Mar has sent this

Prof White et al – the PACE trial - 73, 405

Dr Clark – General and specific risk markers & preventative factors for chronic fatigue and irritable bowel syndromes 42,698

Dr a Weardon – Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (FINE) - 6982 (this figure related to a reconcilement payment at the end of the tenure of this grant).

Thanks ukxmrv... It looks like they are sharing information with each other...

Note that the 6982 figure is a negative figure, for funds returned to the MRC.

 

[Bob]

In summary, the MRC's funding for ME/CFS, for the year 2009-10, is as follows:

Grants given:

73,405 (Professor P White et al - The PACE trial)
42,698 (Dr C Clark)​

Total grants given: 116,103

Funds returned: -6,892

Total MRC funding figure for 2009/10 = 109,211 (This corresponds to the figure given in answers in parliament of 109,000)

I think that these figures mean that there was zero funding for biomedical research for ME/CFS for 2009/10.

The 'Dr C Clark' study looks like it is not laboratory biomedical research, but rather a case of sifting through medical records.

I find it hard to understand why the funding for ME could have been at such a pathetic, almost non-existent funding figure, with zero funding for biomedical research. It's scandalous.

I wonder if there are any other similar neurological diseases, such as MS, which received zero funding for biomedical research. And I wonder what the funding figure was for MS for the same year.

 

[Enid]

Thanks for the info Bob. Long hard battle for the Countess of Mar over so many years now. Just feel the MRC are all over the place with PACE funding. At least IBS (viral) has collected something. And nurse led self help - how can that help when the real thing is so misunderstood (as yet).

 

[wdb]

Do we know whether this is because the MRC is denying CFS research funding or whether there are just not many UK doctors interested in CFS research and so not many grant applications have been made ?

 

[Bob]

Do we know whether this is because the MRC is denying CFS research funding or whether there are just not many UK doctors interested in CFS research and so not many grant applications have been made ?

The MRC says it is due to a lack of quality research applications, but Jonathan Kerr has demonstrated that his grant applications were effectively blocked by psychiatrist referee/referees on the MRC's grant giving panel.
Kerr said that he typically received scores of 9,8,3 for his applications where the '3' was from a psychiatrist which had the effect of blocking the application.
I believe that researchers are driven out of the field by a lack of funding. Jonathan Kerr certainly was.

 

[Enid]

Not many Doctors at all interested here yet. Too much baggage from the psychos. But Science (mostly US) should (and does blood ban) open their eyes to this real illness. Just seen blockage of Jonathan Kerr which simply confirms the worst in the cronyism here in Medicine.