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Give ME the Money

Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it …

The new video from ME Analysis highlights the shocking lack of funding for biomedical research into ME: less than £2 million in over 25 years.

(If you don’t see the video watch it  here.)

I think there are two things that all of us with ME can agree upon. The first is that too little money has been spent on biomedical research into ME, and the second is that the psychological interpretation of the illness has been allowed to have too much influence. You may phrase it much more strongly than that, of course!

pixabay-poundsIn the UK, looking back from the ’80s to today, the total amount of government money spent on biomedical research into ME is approximately £2 million. Contrast this with the amount spent on research into HIV/AIDS, which was £9 million in 2011 alone. Remember that we also have to add all the millions spent by the big pharmaceutical companies to that.

Do not think for one minute that I am complaining about the research into HIV/AIDS, or any other well-funded areas such as cancer or heart disease; I am simply expressing my frustration that ME has not been given even a small fraction of that funding.

For ME, all we have extra is the relatively small amounts that our own charities have been able to raise from patients who are often struggling to make ends meet. £2 million official funding over 25 or more years! It is a disgrace.

Let’s face it, if funding for research into ME had matched the money available to HIV/AIDS, we would be in a very different position today. When we see the amounts of money that governments are able to write off, and we watch our child, partner, parent, friend, or even ourselves struggle desperately with an illness that often still isn’t properly recognised, frustration and anger are words that do not even begin to measure the depth of our feelings.

Back in 2003, the Medical Research Council (the MRC) set up a Research Advisory Group for ME/CFS. By 2006 they invited Action for ME to a workshop. In 2008 they set up the CFS/ME Expert Group.

But it was only when Jan and Margaret Laverick lobbied for an Early Day Motion in Parliament demanding an independent scientific committee to oversee ME research that the MRC, in 2011, acting on the advice of the Expert Group, announced £1.6 million was available for biomedical research, and in 2012 funded five small studies.

In 2013, Stephen Holgate set up the CFS/ME Research Collaborative (the CMRC) to increase the scale and quality of new research, but the MRC has funded no new research through them for last year or this.There are people on the CMRC determined to improve the situation: they want to bring in many more researchers, to stimulate additional funding from other sources and to raise the quality of the science, and much of the ME community are hoping that they will succeed.

But they have to overcome the long-established precedence of the small psychiatric group that has dominated the established attitude to this illness, and to persuade the MRC to change its attitude of failing to fund research into it.

From 2000 onwards, out of the tiny funding allocated to ME, biomedical research only got one-fifth of that: the rest went to psychosocial research. What other illness would accept that ratio? Can you imagine the outrage if over 80% of the money dedicated to research on cancer, heart disease, dementia, etc., was allocated to psychosocial research?

Obviously there will be some: any major chronic or serious condition has psychological overtones, but 80%? That is a ridiculous ratio, and so frustrating to us patients: that poor-quality psychological research is used to determine our treatment options, without being tested and counterbalanced by sound biomedical research.

The MRC has problems in attracting enough good researchers to apply for grants to study ME. Is this surprising?

Back in 2000, one highly-respected specialist explained to me that, with the psychological interpretation of ME having a stranglehold on meagre funds, it was impossible to attract good researchers or specialists into the field.

Do not think for one minute that the MRC did not get any applications to fund biomedical research: they did, but chose not to fund any of them.

So, the big question is, if the CMRC initiative leads to new, high quality research proposals, will the MRC back them, or will they just go through the motions as they have so often before? Will they convince researchers that the field has a future? Will they be able to rebalance the direction of funds so that biomedical research is truly supported?

We need substantial and sustained funding. If you were a skilled biomedical researcher, would you choose to specialise in ME if it meant that you had to trust the MRC to fund your future career? There must be clear constraints on the MRC to commit to such research, but equally importantly there has to be at least one other good source of biomedical funding.

Invest in ME has made a good start here with the University of East Anglia, focusing on what is achievable, and emphasising international co-operation. They need official recognition and support. How else will good researchers be encouraged to choose ME over all those other well and multi-funded medical areas such as cancer, heart disease, and dementia unless there is more than just the MRC to turn to?

We cannot just sit back and hope that this will happen.

Those of us who are able to get in touch with our MPs, even if it is a struggle to find the energy, must impress upon them the need for proper, substantial funding for biomedical research into ME.

MPs must ensure that the MRC and NIHR, the government’s other research funding body, puts serious money into ME/CFS research. They must also find ways to give substantial support to the initiative by IiME and the University of East Anglia.

Please contact your MP, by email or face to face. You owe it to those who are severely affected and cannot do so themselves. If we do not do this, no one else will.

You do not need to write a long email. All you need to do is briefly introduce yourself, and say how long you have been ill, add a comment about how frustrated/angry/annoyed you are that after all this time so very little effort has been made by the authorities to research this illness, and that it is time that things changed.

You can include the fact sheet that can be downloaded from this link.

It has been suggested that we should just focus on raising money for research. Well, even if we raise £100,000 a year, it would take us 60 years to raise the £6 million of government money that went to the PACE and FINE trials.

I know I am nagging. Realistically, I do not expect to see any benefit from this in my lifetime, but I want my son to have a future. I want you to have a future.

Please let me know when you do write, and I will report back.

We are not going to get perfection, but we must at least get the ball rolling. It won’t be easy. We do not want to be ill!

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{ 27 comments… add one }

  • Graham December 18, 2014, 6:04 pm

    Thanks to Jodie for editing this to make it look good! Believe me, in its original form, it needed all the help it could get.

  • Sean December 18, 2014, 11:18 pm

    Well said, Graham.

    Thank you.

  • RustyJ December 19, 2014, 3:44 am

    To all concerned, NICE JOB. Got to get those videos on my site, they are terrific primers for the cognitively challenged, myself included. Loved 'Hows that Recovery'.

    Well done.

  • wdb December 19, 2014, 4:05 am

    If you've not seen Graham's other videos there are more, all worth watching:
    https://www.youtube.com/user/MEAnalysis/videos

  • RustyJ December 19, 2014, 4:57 am
    Graham

    Invest in ME has made a good start here with the University of East Anglia, focusing on what is achievable, and emphasising international co-operation. They need official recognition and support. How else will good researchers be encouraged to choose ME over all those other well and multi-funded medical areas such as cancer, heart disease, and dementia unless there is more than just the MRC to turn to?

    Yep, IIME is one of the very few orgs in the UK and the US that has managed to hang onto its integrity. And they are doing genuine biomedical research, not like SolveCFS (CAA) trumpeting about their latest epidemiological study. Just what we need another half-assed epi study on people who may or may not have ME.

    If you want to donate money to a real biome study looking at specific mechanisms, which is already underway, then you can't go past the IIME study. (I'm not with them, I'm in Australia, just impressed with what they do).

    IIME didn't join the Collaborative, so that's got to be a point in their favor, hey?

  • Graham December 19, 2014, 6:37 am

    Thanks Rusty. I'm all for us raising as much money as we can to fund proper biomedical research, but the reality is that for a charity to raise £100,000 in a year is pretty good. But the £5 million that was given to the PACE trial by the UK government represents 50 years of such fund-raising. We need substantial government backing, and the only way that will happen is for parliament to push for it to happen.

  • RustyJ December 19, 2014, 7:03 am

    I'm afraid I don't have such a rosy picture of the CMRC. It's the old Advisory Group with a new coat of paint. Oh I think the CMRC will get some money. Because of who is involved there. Its all about scratching backs. However I very much doubt any serious research will get done. There will be a bit of throwing a line into the water, but if they catch anything I think it would be thrown back. Standard operating procedure. Seen it all before. US are about to do something similar I think. Some of the fatigue patients orgs are shuffling to get in line for funding. I wouldn't be surprised if they announced something similar to the CMRC in the near future.

  • Kina December 19, 2014, 7:16 am

    Thanks for the excellent article and video @Graham :):):)

  • Esther12 December 19, 2014, 2:42 pm

    Graham – I think you're right, but I really don't want to contact my loathsome local MP about CFS. But I think I should. But I don't want to. But you've made it so easy. But I still don't want to.

    I think you've pretty much worn down my aversion to this and it's now something I will do but just want to put off as much as possible.

  • Graham December 19, 2014, 5:22 pm

    Thanks Esther, I do appreciate the reluctance. But I think that if we are going to get this sorted, we have to bite the bullet and go flat out for it. Plus, I think we need to do it now when MPs may be a little more alert to voters' thoughts.

    I've got a sort of graphic in mind that may make the point that it is worth doing. Watch this space.

  • Graham December 20, 2014, 1:04 pm

    Here's the space to watch. I think it shows that persistent parliamentary pressure is starting to have an effect.

    1990 no biomedical studies funded
    1991 no bio
    1992 no bio
    1993 no bio
    1994 no bio
    1995 no bio
    1996 no bio
    1997 no bio
    1998 no bio
    1999 no bio
    2000 no bio
    2001 no bio
    2002 no bio: Chief Medical Officer's Report wants MRC to fund biomedical studies
    2003 no bio: MRC sets up Research Advisory Group
    2004 no bio
    2005 no bio
    2006 no bio: Gibson Report wants MRC to fund biomedical studies
    2007 no bio
    2008 no bio: MRC sets up CFS/ME Expert Group
    2009 no bio
    2010 no bio: Early Day Motion: 123 MPs want MRC to fund biomedical studies: MRC announced funds earmarked
    2011 no bio
    2012 MRC actually funds 5 small studies: the first biomedical studies to be funded
    2013 no bio: CMRC is set up
    2014 no bio: CMRC holds its first conference

  • Bob December 20, 2014, 2:37 pm

    Interesting timeline Graham, if depressing.

  • Graham December 20, 2014, 5:20 pm

    Should I have taken it back to 1980? I did go back that far in a different database and found nothing funded by the MRC. The NHS did run a few departmental investigations, most of which didn't need any extra funding from the NIHR, and few of which produced reports (from what I could see): all very small scale stuff.

  • Bob December 20, 2014, 6:12 pm
    Graham

    Should I have taken it back to 1980? I did go back that far in a different database and found nothing funded by the MRC. The NHS did run a few departmental investigations, most of which didn't need any extra funding from the NIHR, and few of which produced reports (from what I could see): all very small scale stuff.

    I don't think it makes much difference – it's clear that they simply haven't invested in ME/CFS at any time.

  • cfsStevew January 8, 2015, 9:57 am

    Hi Graham!

    Great Timeline! Is there any data which shows comments made by MRC when they say they dont recognize the term 'biomedical'…and their previous statement of funding biomedical trials? That would be nice to have on there…plus also the rejected papers from the likes of Edwards etc…;)

  • Snow Leopard January 10, 2015, 5:29 am

    Hi @Graham, can you send me a PM on the methodology you used to work out the total amount of funding on various conditions (and ME)?

  • Graham January 10, 2015, 8:03 am

    Hi Snow Leopard, and cfsStevew! There isn't a simple single source for any of this. The statement that the MRC does not recognise the term "biomedical" comes from their reply* to the MP Ian Swales around the time of the 2010 early day motion signed by 123 MPs, but I seem to remember another similar reply to a different request, probably after their 2012 investment. They also say that they do not earmark money for specific conditions. They also announced in 2010/11 that they would earmark £1.6 million for such research.

    *Mr Willetts: The Medical Research Council 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. The selection of projects for funding by MRC is determined through peer review.

    "Biomedical" is not a category the MRC would normally use to classify research in its portfolio.

    When it comes to the quality of the rejected studies, I was using the comments from the Gibson Inquiry. Just recently I have picked up this link, but I have no idea whether it is a reliable one: more research needed. (vactruth.com/2012/10/06/chronic-fatigue-syndrome-vaccinations/)

    I used the spreadsheet of all studies funded by the MRC from 1990 to today: it took a fair bit of time, but there aren't many entries for CFS. I also used a database provided on a website sponsored by the De Montfort University that covered "all" studies in the UK back to the 1980, which is where I got the information about the "studies" funded through the NIHR. I contacted both the MRC and NIHR to ask whether I had missed any important sources, and the second database then mysteriously vanished. I have been chasing this up with De Montfort and NIHR, but have got nowhere. There are other databases, but without the necessary funding information, and not going back so far. But I do have my rough notes still.

    Hope that helps. Feel free to ask for more, but you may need to PM me to attract my wandering and enfeebled attention!

    Here's an extract from Hansard, with my comments in red.

    Chronic Fatigue Syndrome
    Annette Brooke: To ask the Secretary of State for Health what funds the Government have spent on research for myalgic encephalomyelitis since 2010; and what funds the Government plan to spend on the study of that condition in the next five years. [181399]

    Dr Poulter: Expenditure by the Department on research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) through research programmes, research centres and units, and research training awards is shown in the following table.

    £ million
    2010-11 0.3 psychosocial!

    2011-12 0.4

    2012-13 0.6

    Total spend on CFS/ME research by the Department is higher than this because expenditure by the National Institute for Health Research (NIHR) Clinical Research Network (CRN) on CFS/ME research cannot be disaggregated from total CRN expenditure. only marginally higher: most of the NIHR research has been more along the lines of an individual department carrying out additional tests, with no extra funding required

    9 Jan 2014 : Column 298W

    Total spend in future years by the NIHR on CFS/ME research depends on the volume and quality of scientific activity.(refuted by Gibson report: one biomedical study refused funding was from a member of the MRC!) The usual practice of the NIHR is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. The NIHR welcomes funding applications for research into any aspect of human health, including CFS/ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the scientific quality of the proposals made.(I remember, but cannot find, a quote from Kerr saying that applications to fund ME/CFS studies were handled by a subcommittee of three, including one neurologist and one psychiatrist: he said that his studies always had one veto, and something about the criteria for entry I think).

    Over the period 2010-11 to 2012-13 the Medical Research Council (MRC) spent over £0.4 million on research into CFS/ME.

    Research into CFS/ME is a priority area for the MRC. In 2011 £1.6 million was awarded to support five research grants following a call for proposals which aimed to improve understanding of the mechanisms of CFS/ME. A highlight notice identifying further areas where applications are encouraged is currently in place. The MRC does not normally allocate funds to particular topics and research proposals in all areas compete for the funding available. Awards are made according to their scientific quality and importance to human health.

    Details of MRC research can be found on the RCUK Gateway to Research website at:

    http://gtr.rcuk.ac.uk

    and further information on MRC support for CFS/ME can be found on the MRC website at:

    http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

  • Graham January 10, 2015, 9:38 am

    Update: the MRC spreadsheet webpage is no longer there. Now if I were a suspicious person…..

    But I do have a copy if anyone wants it. It is a big file, 14MB, and takes ages to be read into a spreadsheet.

  • Graham January 11, 2015, 12:45 pm

    You may be interested in this link to the MRC site. There are four boards under which applications are considered: molecular and cellular medicine, infections and immunity, population and systems medicine, and neurosciences and mental health. Only the last one mentions chronic fatigue syndrome specifically, and it is where, historically, all the applications for research into ME seem to have been sent.
    http://www.mrc.ac.uk/funding/science-areas/neurosciences-mental-health/remit-and-scope/

  • Sasha January 11, 2015, 12:54 pm
    Graham

    You may be interested in this link to the MRC site. There are four boards under which applications are considered: molecular and cellular medicine, infections and immunity, population and systems medicine, and neurosciences and mental health. Only the last one mentions chronic fatigue syndrome specifically, and it is where, historically, all the applications for research into ME seem to have been sent.
    http://www.mrc.ac.uk/funding/science-areas/neurosciences-mental-health/remit-and-scope/

    I hadn't been aware of that – I wonder if that's why psychiatrists have done so well for funding in the UK.

  • Graham January 11, 2015, 5:47 pm

    There was a quote, many years ago, from Jonathan Kerr about all his applications being shunted to the neurologists/psychiatrists subcommittee, and always getting at least one veto, generally on the grounds that they disagreed with the choice of sample of patients. All this is from an unreliable memory, so if anyone knows where I can find a link to that quote, I'd be really grateful.

  • Bob January 11, 2015, 6:45 pm

    @Graham

    He once discussed this issue at an IiME conference, so an IiME video would be a source.

    Below, is the info that I've got in my notes, but I'm not certain where i got all the info from. I think some is from an IiME conference video, but I might have picked up bits here and there:

    Dr Jonathan Kerr has had his grant applications rejected by the MRC on a number of occasions. On one occasion he was turned down with a score from the MRC referees of 9,9,3 where the '3' was awarded by a psychiatrist*. Dr Kerr has said that he has had a number of grant applications rejected with an average score of 9,8,3 where each time it is a psychiatrist giving the low score and blocking the grant.

    * I'm not sure if this was an assumption made by Dr Kerr – see wording in the quote below.

    I've also got in my notes that one reason used to turn down an application was that he wanted to use CCC for recruitment. This excuse would presumably have been used on just one occasion though..

    And I've found this as well. See the link within the quote:

    Margaret Williams

    At the 2007 Invest in ME Conference, Dr Kerr repeated his message:

    “We have applied several times to the MRC and on each occasion we were invited to submit those applications and on each occasion we got scores typically of 9, 8 and 3 – the 3 score was obviously from a psychiatrist who was complaining about our way of enrolling the patients, the criteria we had etc…David Tyrell told me the MRC will never fund biomedical research in CFS because they are in the thrall of the psychiatrists – so far, he has been right”.

    http://meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

    And there's a bit more here:
    http://forums.phoenixrising.me/inde…to-the-uks-medical-research-council-mrc.1636/

  • Graham January 12, 2015, 5:43 am

    Thanks Bob: that was the quote I had in mind. Very useful! Now to find somewhere safe to store it!

  • Aidan Walsh January 15, 2015, 6:25 pm

    Private Commercial liens under Uniform Commercial Code arrest them in Commerce seize assets in the Millions

  • Aidan Walsh January 15, 2015, 6:36 pm

    There is also another Private way of getting money into research & that is putting in a Security agreement with a UCC-1 Financing Statement & seize the funds off of your Birth Certificates which is written on Bond paper it is worth Millions with the Fed Reserve which is the IMF/World Bank

  • snowathlete March 9, 2015, 11:58 am

    This has been on my "To Read" list for ages. Thanks @Graham for doing all this work. I think it's really well done and so important to highlight this issue.

    How do these biomedical results compare with psychosocial research funds granted? Is it basically 4 times as much?

  • Graham March 9, 2015, 1:56 pm

    Glad it was useful, @snowathlete !

    As far as I can tell, of the small amount allocated to ME/CFS in comparison with other conditions, about 80% of it has gone on psychosocial research. I wouldn't be surprised if the story in the US was similar, although it does depend on how we classify funding of research into the muscles of rats left to nearly drown, on the grounds that they were testing fatigue! (And, of course, in the past, in the US, a significant amount just vanished from the funds.)

    The complication is that many studies are multi-funded, and include both government sources (the DWP, for example, part-funded PACE), and funding through NHIR (the research section of the NHS) is quite difficult to pin down. Much of the psychological stuff though has been funded by charitable bodies (rarely ME charities). Also, how do we rate university funding?

    It's still a good rough estimate though: it is consistent with the Gibson Inquiry of 2006.