Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Carol Head, SMCI President, On ME/CFS Research Funding

Discussion in 'General ME/CFS News' started by Rowena Ilagan, Mar 23, 2017.

  1. Rowena Ilagan

    Rowena Ilagan

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    Carol Head, President of the Solve ME/CFS Initiative (SMCI), tackles the question, "Why Is Funding ME/CFS Research So Difficult?" in the latest issue of the Chronicle. Are you signed up to receive SMCI's print publication, The Chronicle, published four times a year? It is available to anyone who wants to receive it. Sign up here: http://bit.ly/2hFXrUd
     
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  2. Valentijn

    Valentijn Senior Member

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    @Rowena Ilagan - Could you post snippets for the item too? I'm generally disinclined to sign up for things or even click links if I have no idea what the content is. I see no real content in the post here to interest me, and I just go on to the next post.
     
  3. AndyPR

    AndyPR Senior Member

    For those who are interested in reading Carol's article, which is part of Solve's newsletter;
    click to read online, https://issuu.com/solvemecfsinitiative/docs/chronicle_020217_epub?e=17941417/44997562, or as a PDF, http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017-1.pdf
     
  4. Dolphin

    Dolphin Senior Member

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    https://goo.gl/PgzKEI
    i.e.
    http://solvecfs.org/wp-content/uploads/2017/03/news-and-update-the-chronicle.pdf

    Comment: "First, by far the primary source of funds for medical research in general is the federal government." This is true for the US. In other countries, governments spend a lot on providing universal healthcare but spend a lot less on research budgets: the US is very generous in how much it spends on research. So in many countries, more can be raised privately for research for specific conditions than is spent by government-funded bodies.
     
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  5. Cinders66

    Cinders66 Senior Member

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    We in uk have the double whammy of a stigmatised, misrepresented illness which raises little in the private sector outside those affected , as Carol says, and an MRC that's failing to do the decent things and step in or take the extra-ordinary measures it took to establish the HIV research field in the 90s.

    Carol Head is doing a great job as SMCI CEO. They've just spent a week in congress lobbying Washington regarding federal funding for ME/CFS. It's the lobbying and pressure we don't see in U.K. so they can get away with neglect, at least it's there in America where government has a history of well funding research.
     
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  6. Dolphin

    Dolphin Senior Member

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    However funding of medical research is kept at arms length from government and politicians in the UK as in most countries (outside of the US). It has been called the Haldane principle. I think a lot of wasted effort could be put into lobbying politicians in many countries. I know I did it initially and then learned more about the system in Ireland.

    Although it would be lovely to get a similar extraordinary measure like HIV got, I don't think it is that likely to happen.
     
  7. Cinders66

    Cinders66 Senior Member

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    Do you mean it's not worth lobbying politicians because they leave the medical profession to it? I agree they are hands off in my experience too, but that's neglectful if they're informed that the medical community are biased /failing this community. Applying pressure direct on MRC, that would be worth it though don't you think? especially if media could be brought on side. HIV campaigners went direct to laboratories in the USA didnt they? I can't accept that HIV got special measures but we are not considered worth it, I think we are a cruelly neglected, severely suffering group and If we decided to leave it to fundraising ourselves in uk that's about (combined charities) £3-400 000 a year max? Peanuts when you think say to fasten up treatment development for pancreatic cancer Cancer research are infecting £10m. That's the kind of money we deserve and the king of money that actually makes progress. .
     
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  8. Dolphin

    Dolphin Senior Member

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    There may be some value if one can show a bias but I just thought I would highlight that decisions on funding are generally separate. I just thought I would highlight the difference to the US system where lobbying can pay a bigger part in how much illnesses get.

    I'm not sure why you would think that for an illness that affects maybe 200,000 people in the UK, that only £300,000-£400,000 could be expected to be raised privately per year. There is potential to raise much more than that. I remember looking into the MS charities around a decade ago and they were raising £13-15 million per year for research.
    By comparison, the medical research council was giving around £0.6 million per year from multiple sclerosis research. I doubt MS was particularly discriminated against by the Medical Research Council.

    I think people can think because there is universal healthcare, that it is government's responsibility to pay from most of the research. However outside the US research medical research budgets are tiny compared to healthy spending. There are a lot of illnesses to go around. Depending mainly on governments (outside the US*) to raise most of the necessary money is likely to lead to slow progress.

    *The situation in the US is different. A lot of people are not helped that much by the US health system e.g. if they have their own private health insurance. So possibly as a way to help everyone, they invest a lot more in medical research
     
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  9. Webdog

    Webdog Senior Member

    I suspect as more get diagnosed (roughly 90% of ME/CFS sufferers remain undiagnosed), private donations will increase substantially. If we only went from 10% diagnosed to 20% diagnosed, that could result in a sizable increase in the donor pool.
     
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  10. Dolphin

    Dolphin Senior Member

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    Good point. Though the figures may be higher in some countries now. Leonard Jason found 9% in a study in the late nineteen nineties in the US (1999 paper) and the CDC found 16% diagnosed in the US in the early 2000s (2003 paper).

    It was one of the things that motivated me to put a lot of time and effort into raising awareness. Though it has frustrated me that this hasn't turned into as much fundraising and donations as I would have liked. If people think that governments have the sole or main responsibility for raising money for research, less private money can be raised.
     
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  11. Cinders66

    Cinders66 Senior Member

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    But MS is a validated respected illness. As my original point said, the reason in uk we suffer is because of the double whammy, an illness that can raise hardly anything privately and an illness given virtually nothing by the state past thirty years. If we'd had the £0.6m / year given to MS over past twenty years (as we should) that's £12m we would at least have gotten somewhere and in my view that's £12m AT LEAST that the double MS pwME population are now essentially owed.

    If you add up what our charities are raising privately per year for research - AFME £40 000, MEA 100, 000 , IiME £100, 000 , MERUK £ 80 0000? It's NOTHING compared to what MS can raise despite having more sufferers and MS charities have money on top to fund MS nurses for their severely ill, fund a brain bank along with Parkinson's UK which we haven't got, whilst incidentally MRC is fundin many others.

    I also wouldn't call the ring fencing for HIV extraordinary measures in the normal sense of the word because it's no Big deal, Norway and America are doing it, MRC have done it for CFS , they've done it for addictions etc I think. It's just notsomething . They usually do but hec, prior to ME striking, laying in a darkened room all day wasn't something I normally did, nor most people so I would argue SOMETHING beyond plodding on at a snails pace needs to done for this highly debilitated and neglected patient group and we HAVE NOT had our fair share of the state research budget. That's what I'm asking for, an injection of cash now to makeup or the neglect since the 80s. It would make a big difference and it's only fair.

    (Plus our health service hasn't exactly injectedmoney into ME care either so we aren't being looked after on any hand)
     
  12. Cinders66

    Cinders66 Senior Member

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    I disagree with your last point here too. Because we've been starved of any state support then all pwMEs efforts have gone into private fundraising and this is all he charities have focused on too. I've given more than I can comfortably afford as do many including paying for our own advocacy in the 25% group. It isn't for lack of effort that ME raises little, its because of stigma/name etc.

    The illness has been stuck in the mind/body camp for years. We aren't going to be able to undo that damage over night and fo us to raise significant funds we woul need a complete image change or name change, preferably some solid dramatic science convincing everyone that exercise isn't the quick fix after all etc. I appreciate some might be politically small state minded, and there'ds been good efforts to "try" to bring down the BPs Barriers to recognition. Also I know there's a lot of "wait for the science to transform things thinking" but personally I think our MRC has been completely let off neglecting us and that in 2011 or Before there should have been more ring fencing committed over five years , as even sir peter spencer argued saying the one off given in 2012 was "tiny compared to need".
     
    Last edited: Mar 27, 2017
  13. Cinders66

    Cinders66 Senior Member

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    David Cameron and government intervened in uk when it became clear that leaving medicine/pharmaceuticals to just come up with new antibiotics wasnt working. Leaving the ME biomedical research field to progress naturally at the same time as the "CFS needs exercise" dominant message isn't working either. Sometimes the state needs to intervene and I believe ME is deserving not only of the standard financial support MS, Parkinson's got but we didn't (money owed) but extra measures given it's a stigmatised illness and an illness with a mixed message not just ME vs CF But 2 -3 decades worth of entrenched and severely ill accumulated whilst the newly ill today , if well managed can do quite well. Mixed message illness (the widely used line is "most improve over time" , which to the public means generally all well that ends well) is much tougher to fundraise for than degenerative, terminal or just fixed conditions , even if we didn't have to be playing whack a mole with The chirpy recovery through CBT messages of Crawley, wessely and white etc.
     
    Last edited: Mar 27, 2017
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  14. Invisible Woman

    Invisible Woman Senior Member

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    I think another problem is the fact that so many of us remain largely "invisible". The more visible ME/CFS sufferers tend to be more mildly affected and so the people they know think that is what ME looks like.

    Also, most people seem to think that you'll recover eventually, without intervention. So why bother to spend money? Of course, some lucky people do recover or improve significantly. Again these are the people who are visible to the general public. In attempting to help, they can also hinder:

    Example 1: a "friend" recently verbally attacked me in a phone call because I refused to say that "fatigue" was my primary symptom. She has recovered significantly and she believe all of her symptoms are due to "fatigue". As this lady is recovered enough to be considering a career in the periphery of medicine, I am frankly worried about the message she will be giving out.

    Example 2: I was told by someone not to worry: a good friend of theirs had ME and as long as she keeps taking her anti depressants, she's fine. I met the woman one day - she works as an aerobic instructor!

    Most of us have a list of this stuff. It all serves to trivialize the level of disability, the reduction in the quality of life and minimize the need for biomed research in the public's eyes. So, why would they donate?
     
  15. Cinders66

    Cinders66 Senior Member

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    it would have been much better at the CMRC meeting last year on why research interest wasn't there if these sort of issues, along with name /criteria / mixed prognosis and medical education etc had been raised instead of a patronising MRC lesson in how to write a good proposal and high parry blaming patient hostility. Then maybe recognition of the the need for special measures for CFS/ME would have been there.
     
  16. Snow Leopard

    Snow Leopard Hibernating

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    Yes, this belief seems to be pervasive. People would rather believe a comfortable myth than an uncomfortable truth... The idea that people spontaneously recover goes hand in hand with the belief that it isn't a serious illness. Sigh.
     
  17. Dolphin

    Dolphin Senior Member

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    I find a lot of the talk very defeatist here.

    I have been involved in a lot of fundraising for ME over the last 20 years including 2 golf classics and my mom and siblings have for example sold blue ribbons outside shopping centres many times.

    Lots of people will donate.

    Nowadays it's easier than ever to do fundraising with the online facilities where people set up a donation page. You see plenty of examples of people raising thousands for ME charities when these are done.

    I think depending on state funding is a bad idea. I want the best chance of improvement in my life. Depending exclusively or almost exclusively on state funding of research decreases the chances there will be breakthroughs in my life.

    I also don't want to depend on a pipe dream that government bodies will give extra money like they did for HIV. HIV was a very specific case: an infectious disease that is/was fatal. ME is nothing like that.

    Lots of illnesses have been underfunded in the past. Virtually all wouldn't get large amounts of catch-up funding.
     
    Last edited: Mar 27, 2017
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  18. Dolphin

    Dolphin Senior Member

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    I can't remember the exact figure but I think in the region of US$2 (?) million was raised privately in Norway for the Rituximab research in a relatively short period of time.

    Norway only has a population of 5.084 million.
     
  19. Invisible Woman

    Invisible Woman Senior Member

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    I agree that we have to keep trying to raise funds. There is no point sitting back and waiting for someone to help us - most of the progress we have made has been down to patients keeping up hope and doing what they can.

    I think having a conversation about the barriers to fund raising are useful though. When we can see and discuss what they are, maybe collectively we can develop strategies to over come them?
     
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  20. Invisible Woman

    Invisible Woman Senior Member

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    Was that pre or post the public TV apology to ME patients do you know?
     

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