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Give ME the Money

Graham submitted a new blog post:

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!


In 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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Comments

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.
 
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.
 
@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 said:
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/
 
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Thanks Bob: that was the quote I had in mind. Very useful! Now to find somewhere safe to store it!
 
Private Commercial liens under Uniform Commercial Code arrest them in Commerce seize assets in the Millions
 
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
 
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?
 
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.