Any figures for funding of ME research in the UK?

Bob

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Hi everyone,

I'm writing some letters to the UK government regarding the MRC and the lack of biomedical funding for ME.
And I'm after some figures for health funding in the UK...

Does anyone have any figures for UK spending, per year, for the following?:
1. MRC funding for biomedical research into ME
2. MRC funding for non-biomedical research into ME
3. Total public sector funding for all types of research for ME.
4. Total public sector funding for research into Cancer
5. Total public sector funding for HIV research

Or I'd be happy with any related figures that anyone can provide.

Thanks very much for any assistance with this,
Bob
 

Trooper

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Hi Bob

I can see where you are going with this. Good stuff.

I don't have data that you are looking for but good luck with collecting it all.

I think I am going to go at it via a slightly different angle - trying to find out how many people have ME/CFS in the UK, how much is spent in benefits then hopefully contrast this figure (if it's even possible to get) with the amount of money spent on funding research. Hopefully then highlighting how far the WPI has got with their private resources and the relatively short time frame in making such a striking breakthrough. I think it may provide a compelling argument. Money talks right?

So I would be interested in any breakdown figures you get for the total public spending on all research into ME/CFS.

If anyone is reading this and knows it has been done before, please can you let us know :) no point in re-inventing the wheel :)
 
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Hi Bob

The MRC site lists all current research projects - and their costs.

http://www.mrc.ac.uk/ResearchPortfolio/index.htm

At present there are only a couple of ongoing projects related to CFS (that is what you will need to type into their search engine to get any results). One is about ethnicity and cultural influences? The other is about drinking chocolate!! That is apart from the biggy: Peter White's PACE trial, looking into the efficacy of CBT versus GET versus APT (adaptive Pacing therapy) - the patient choice, so to speak. So the CFS side of your research won't take very long.

good luck

Adam
 
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Hi Trooper

You might add to your list of things to find out:

the likely cost of anti-viral meds in relation to say the cost of state benefits. Is it cheaper for the State to pay me to be ill or make me well again.

Anyone any ideas what it costs on average for an HIV sufferer to recieve medication?
 

Bob

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Thanks Adam - i'll have a look at their website. A study on 'Cultural influences'? That's going to be useful for finding a biomedical cure isn't it?!
I've read that the PACE trial uses the London Criteria to select patients - a very loose diagnostic criteria that allows psychiatric patients to be included in the study - so that makes it really relevent for us doesn't it!
My letters are getting longer all the time with all of this info i'm gathering!

Trooper - i'll let you know if i get any figures, but i'm finding it difficult to find any info on this. I did get a figure on cancer funding from the BBC website, but it looks smaller than i expected, and i don't know what sources of funding they are including in their figures.
I like your angle that you are taking - it's intelligent and creative - good luck with that.
I'll let you know how i get on.
 

Dolphin

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AfME 2003 Cost to the coutry report

Hi Bob

I can see where you are going with this. Good stuff.

I don't have data that you are looking for but good luck with collecting it all.

I think I am going to go at it via a slightly different angle - trying to find out how many people have ME/CFS in the UK, how much is spent in benefits then hopefully contrast this figure (if it's even possible to get) with the amount of money spent on funding research. Hopefully then highlighting how far the WPI has got with their private resources and the relatively short time frame in making such a striking breakthrough. I think it may provide a compelling argument. Money talks right?

So I would be interested in any breakdown figures you get for the total public spending on all research into ME/CFS.

If anyone is reading this and knows it has been done before, please can you let us know :) no point in re-inventing the wheel :)
(I have this as a pdf which I can send anyone who PMs me their E-mail address- or maybe that won't be necessary as I've tried to attach it)
tomk said:
M.E. is costing UK…
3.5 bn a year
9.5 m every day
100 a second
…how long can we afford it?
Cost to the Nation Report
by Action for M.E.
12 May 2003


The cost of M.E.

The current official estimate is that M.E. affects 240,000 people – four people in a
thousand*. Accepted as a “real, serious and debilitating condition” by the
government in 2002, M.E. presents a wide scale health problem to the UK economy.

Action for M.E. has calculated that the total cost to the nation is 3.46bn per year

While it is relatively simple to calculate the direct financial losses of long-term ill
health this is a rather simplistic and even crude way of illustrating its effects. M.E.
destroys lives. The profound impact loss of health has on an individual is difficult, if
not wholly impossible, to measure in monetary terms. Good health is immeasurable.
The following report calculations attempt to measure only the most tangible of costs
to the economy, namely lost revenue, benefits and healthcare spend. Over 90% of
these figures are due to lost income.

There is no cure or effective treatment for M.E. at present and contrary to popular
belief, not everyone recovers. Those that do, often take years and few are able to
return to pre-illness levels of activity and full-time employment. The cost of M.E. is
therefore not one to rapidly disappear.

M.E. – the economic cost (2002 ’s)

Total cost to the community

Cost per person () 14,746
Estimated UK cost* () 3,467m

* Figures in this table are based on 0.4% (235,157) of the UK Population at 2001 Census (58,789,194)

Health costs
Total medical costs amount to 210m per annum.

The medical costs of the illness are nearly 900 per person each year. This mainly
consists of consultations, tests (to exclude other illnesses) and drugs to help manage
symptoms in the absence of an effective treatment.

Benefits and lost earnings
Public purse costs – benefits and lost taxation – amount to 2,222m.
Around 80% of people with M.E. had been in employment before becoming ill. The
loss to the Treasury in tax and national insurance (at the lower 2002 rates of N.I.) is
calculated at over 4,100 per person.

Over 75% of respondents reported receiving benefits, usually incapacity benefit.
These cost over 4,800 for each person. Many struggle to get benefits they are
clearly entitled to due to lack of information and discrimination against people with
M.E.

Annual cost of M.E. per patient (2002 ’s)
Total ()
Health sector 896
Lost income 13,850
Total (per patient) 14,746
Note: Lost income extrapolated from Average Earnings Index.

The human cost
M.E. affects adults of all ages and even children as young as five. Most often
triggered by a virus, M.E. causes severe fatigue, muscle and joint pain, sleep
disturbances, short-term memory and neurological problems. Family members often
have to take on the role of a carer as the patient slides into long-term illness with little
support from the health service. A lucky minority recover in a year or two, a quarter
become permanently house or bed bound with little improvement in sight. Few ever
recover to pre-illness levels and many lose out on employment and education as a
result.

What next?
The only real long-term solution is to identify an effective treatment. Although the
need for research has been recognised there are no government funds specifically
allocated for this purpose despite the high cost and prevalence of M.E. As a result,
we still do not know what causes M.E. and why some people become more severely
affected than others. There is no diagnostic test. There are also no effective
treatments to offer people with M.E. On a more basic level, most professionals who
come in contact with patients have not received any training on the condition.
Education on the importance of early diagnosis and management is vital in
preventing more people from becoming severely and chronically ill with M.E.

We feel that as a bare minimum, 1% of the estimated cost of M.E. – 35 million
– should be allocated to establish a thorough research programme into M.E.
This is the only way to begin to prevent this tremendous waste of money and
lives and find a permanent solution to the national health hazard of M.E.

For further information please contact:
Action for M.E.
73 Watling Street
London
EC4M 9BL
Tel: 020 7329 2299
Fax: 020 7329 3600
Website: www.afme.org.uk
e-mail: london@afme.org.uk
Registered charity number: 1036419

Notes to the survey
1. The Chief Medical Officer’s Working Group Report on CFS/ME in 2002 identifies
a population prevalence of at least 0.2% - 0.4% which is used throughout this report
2. Statistical analysis of original data and an update to 2002 figures were carried out by
the Survey and Statistical Research Centre (SSRC) at Sheffield Hallam
University who take no responsibility for the quality of the data
3. All estimates are subject to error and should be regarded as “ballpark” figures only
4. The data was calculated using earlier survey information produced through a postal
questionnaire sent out by Action for M.E. and M.E. Association in 1994 with 2,971
replies, a response rate of around 30%
5. Action for M.E. wishes to place on record its appreciation for the pioneering work and
contributors to the 1994 Cost to the Nation Report.
 

Attachments

Dolphin

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Hi Bob

The MRC site lists all current research projects - and their costs.

http://www.mrc.ac.uk/ResearchPortfolio/index.htm

At present there are only a couple of ongoing projects related to CFS (that is what you will need to type into their search engine to get any results). One is about ethnicity and cultural influences? The other is about drinking chocolate!! That is apart from the biggy: Peter White's PACE trial, looking into the efficacy of CBT versus GET versus APT (adaptive Pacing therapy) - the patient choice, so to speak. So the CFS side of your research won't take very long.

good luck

Adam
I can't see the drinking chocolate one. The three I see are all at: Queen Mary, University of London. Although it is not clear, Peter White is involved in all of them.
 

Dolphin

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MRC CFS/ME research funded since 1993/1994

(From a Co-Cure post of mine from June 2008)

http://listserv.nodak.edu/cgi-bin/w...3&X=39E2991D4EDF6538D0&Y=tomkindlon@gmail.com

[A contact of mine contacted the Medical Research Council (MRC) in the UK to
try to find out what grants they have given out over the years. She was
sent this file. She said I could post it to Co-Cure, etc. TK]

"CFS/ME projects funded by the MRC: Those projects live from 1993/4" (to
present (i.e. June 2008))

http://tinyurl.com/5ul37z i.e.
http://www.fileden.com/files/2007/2/6/741817/MRC_CFS-ME_Projects_June_2008_[1].pdf

[The file above is neatly laid out in a pdf. I've pasted the text into this
E-mail.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

CFS/ME projects funded by the MRC: Those projects live from 1993/4
Start date
Principal Investigator
Project Title
Amount Awarded

01/06/2006
Professor K Bhui,
Queen Mary & Westfield College
Chronic fatigue and ethnicity
162k

27/05/2008
Dr C Clark,
Centre for Psychiatry, Barts and The London School of Medicine
General and specific risk markers & preventive factors for chronic fatigue
and irritable bowel syndromes
367k

01/01/2006
Professor F Creed,
University of Manchester
The feasibility of a population based study of CFS, IBS and CWP
118k

06/08/1997
Professor R K Morriss,
University of Manchester
The role of noradrenaline in the neuropsychological pathogenesis of the
chronic fatigue syndrome
37k

19/04/2004
Professor A J Weardon et al,
University of Manchester
Randomised controlled trial of nurse led self-help treatment for primary
care patients with chronic fatigue syndrome
743k

14/06/2004
Professor P D White et al,
Queen Mary & Westfield College
The PACE Trial: A RCT of CBT, graded exercise, adaptive pacing and usual
medical care for the chronic fatigue syndrome
2.07m

01/07/2003
Professor R Morriss,
University of Liverpool
Exploratory RCT of training GPs to manage patients with persistent medically
unexplained symptoms
356k

01/10/2004
Professor M Sharpe,
University of Edinburgh
A complex intervention for patients with medically unexplained symptoms in
neurology clinics
242k

01/01/1990
Professor A H Mann,
Institute of Psychiatry
An epidemiological approach to the study of chronic fatigue in primary care
94.6k

(updated: June 2008)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tom adds:

In 2002, the Parliamentary Under-Secretary of State, Department of Trade and
Industry (Lord Sainsbury of Turville)
said (amongst other things):

"Prior to 199394 the MRC stored, collected and indexed data in a format in
which it is not possible to identify CFS/ME awards."

Ref.
http://www.publications.parliament.uk/pa/ld200102/ldhansrd/vo021105/text/21105w04.htm

---------

All the Principal Investigators named above could be said to be
psychiatrists or psychologists from the "CBT School of Thought" aka "Wessely
School of Thought" aka "Wessely/Sharpe/White/Chalder School of Thought"
(with regards to ME or CFS).

---------

Alison Wearden spells her surname with an e. I've seen no evidence that she
holds or has held a professorship - I think calling her Prof. Wearden may be
an error.

--------

Tom
 

Trooper

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Cheers for posting this Tom.. You just saved me a load of energy that I don't have!!

I don't suppose you know where, when and how the figure of 150,000 to 250,000 estimated cases of ME/CFS came from?

Thanks again :)
 

Sasha

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Hi everyone,

I'm writing some letters to the UK government regarding the MRC and the lack of biomedical funding for ME.
And I'm after some figures for health funding in the UK...

Does anyone have any figures for UK spending, per year, for the following?:
1. MRC funding for biomedical research into ME
2. MRC funding for non-biomedical research into ME
3. Total public sector funding for all types of research for ME.
4. Total public sector funding for research into Cancer
5. Total public sector funding for HIV research

Or I'd be happy with any related figures that anyone can provide.

Thanks very much for any assistance with this,
Bob
Hi Bob - it's a while since I've read this but MERUK has at least some of this info in publications listed on this page - they make a good argument!
 

Dolphin

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Cheers for posting this Tom.. You just saved me a load of energy that I don't have!!

I don't suppose you know where, when and how the figure of 150,000 to 250,000 estimated cases of ME/CFS came from?

Thanks again :)
I think their sources are the following two studies (below) from the US.
These studies involved tens of thousands of phone numbers being rung at random.
Questions were asked about a person in the household (I think whoever had the nearest birthday - basically not just the person who answered the phone).
If they thought the person sounded like they might have CFS, they were invited in for further testing and questioning.

They found prevalence figures of 0.235% (i.e. 235 per 100,000) and 0.422% (422 per 100,000). If you multiple those figures up by the population of the UK, you get approx 150,000 and 250,000.

Studies like that are very, very expensive and haven't been done in the UK at least on a large scale.

Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.
 

jace

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On Wednesday Feb. 3 there was a soundbite all over the BBC news programs, that for each cancer sufferer in the UK 300 was spent on research, whereas dementia research only gets 60. This sent me scuttling to the MRC website, where I found that for ME/CFS 3.5 million approx was spent, none of it on biomedical studies. So 300 plays 60 plays 14. I sent a few emails that day, didn't get picked up that I noticed, but hey, every little helps.

The only way to estimate the number of sufferers of a disease that is so little understood is to extrapolate the percentage found in a sample by multiplying it with the total population. I didn't like it either, then I realised there was no other way to do it unless you are going to examine every human being in the country.
 

Bob

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Thanks Jace, great stuff... that's very useful... and interesting! (i'll try to use that info in my letters)
and i agree... every little helps... that's my philosophy...
we can't expect to change the world with one letter,
but if we all keep on bashing them with emails and letters, then they might get the message one day!
That's my approach anyway.
Thanks again,
Bob
 

Dolphin

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We are just going to have to fund our own biomedical research via the tiny charities that do it.

Donations to ME Research UK can be made through the Just Four Quid campaign:

http://justfourquid.com/about/

the CFS Research Foundation also funds biomedical research:

http://www.cfsrf.com/

& the WPI takes Paypal, which is handy for those of us outside the US:

http://www.wpinstitute.org/
I agree that that's one sure way to get results.

Lots of people have done lots of letter-writing over the years. Good luck to anybody who does it but I dont think we can depend on it.

People can do both methods of course (Ive complained about the MRC in various ways over the years but have also donated and been involved in fundraising for research - thought it was relevant to mention).
 

Bob

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I found this posted by Marco on another thread...
http://forums.phoenixrising.me/index.php?threads/xmrv-cfs-uk-study-ii.2361/page-7#post-56347

It's a Written Parliamentary Question published in Hansard on 7 December 2009...
with useful info about MRC funding for ME:

Written answers for 7 Dec 2009 :
Column 46W

Biomedical Research

Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]
Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.

In 2008-09 the MRC's total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to 728,000. This supported four projects including a 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.

The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.

The MRC's National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.


There appears to be no mention of the study under discussion. How long does it take to approve funding of such a study? Surely the MRC would have had to decide on funding such a proposal and, given the flak it received from ME charities for not funding biomedical research, wouldn't they have wanted to publicise it, not to mention being required to be full and open in a response to a parliamentary question?
 
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