The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Brain imaging study crowdfunding request from sympathetic Harvard researcher

Discussion in 'General ME/CFS News' started by Dolphin, Nov 12, 2017.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    More detail from this link (broken up for ease of reading):
    Whole thing here:
    https://because.massgeneral.org/cam...onic-fatigue-syndrome-research-at-mgh/c153689
     
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  3. Dolphin

    Dolphin Senior Member

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  4. Dolphin

    Dolphin Senior Member

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  5. Dolphin

    Dolphin Senior Member

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  6. dreampop

    dreampop Senior Member

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    I would love to see the Massachusetts Hospital/University complex get involved. Not to mention there are a ton of biotech and pharmaceutical companies a little west of Boston.
     
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  7. neweimear

    neweimear Senior Member

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    Why can't he apply to NIH, were they not saying recently that lack of funding is partly due to low number of grant applications from ME/CFS researchers? Really, the patient community is constantly donating....there are only so many researchers we can help.
     
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  8. Londinium

    Londinium Senior Member

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    Can't speak for NIH specifically but a lot of medical research funders require there to have been some form of pilot study before they'll commit funds. Across a range of illnesse, seed funding is generally provided by charities to provide small sums of money to generate a proof-of-concept study that will then allow the scientists to get more mainstream funding.
     
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  9. RobinDurham

    RobinDurham

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    Hi @neweimear , @Londinium is correct.

    I've posted here before a long time ago. Most researchers who enter the field do so because they know someone personally that is ill. For Mike Vanelzakker, that person is me! I've known Mike since I sat behind him in 8th grade social studies class, and decades later I am severely afflicted with ME/CFS and Mike has gotten his PhD in neuroscience and is spending part of his career trying to study it.

    I asked Mike about applying for a grant to the NIH for pilot study money. He said, "NIH does not do pilot funding, but they expect you to apply with preliminary data. Can't have data without money, can't get money without data, etc..."

    Mike has found creative ways to fund some of his work, but the type of imaging he wants to do is cutting edge but expensive. He definitely realizes how difficult it is for patients to donate. I agree that we're spread pretty thin with fundraising! It's a struggle to generate seed funding when so many of us are not working.

    But, having been hearing about his study design for a while, I'm very encouraged about what he's trying to do. He's been tweaking it over time, including adding an exercise challenge, and reaching out to some of the talent in the Boston area to consult such as Kenneth Kwong, who's very well regarded in the brain imaging field. The more high level academic researchers we have working in the field, the better.

    Mike has become not only a researcher but an advocate too. Last weekend Boston area patients organized a screening of Unrest and invited 150 medical professionals to attend. Mike was one of the panelists who stayed to answer questions afterward. I'll upload a pic (he's second from left.)

    Thank you @Dolphin, for posting this here and all of the years of advocacy you've done!



    Unrest.jpg
     
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  10. dreampop

    dreampop Senior Member

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    That's great to hear Robin, I'm sure we have the money in the community for this, its just about getting it out to multiple sources like here, maybe gofundme?
     
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  11. RobinDurham

    RobinDurham

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    Thank you! I hope so. That's a good idea about multiple avenues of donation.

    The video of the Boston unrest panel discussion is up on YouTube, I'll link it here.

     
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  12. Orla

    Orla Senior Member

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    Ireland
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  13. Dolphin

    Dolphin Senior Member

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    @neweimear

    Maybe 50 families with ME/CFS in the Rep. of Ireland (population 4.8 million) have been donating or fundraising for ME/CFS research in any one year (in the past*). It is probably more per capita in the UK but less in most countries.

    So I think there is a lot of potential for more to be raised. For example when one sees how much gets spent on often very speculative therapies, a lot of people do seem to have some money.

    *I have less info on recent years where some will be donating to charities like OMF. But I don't get the impression the numbers are huge.
     
    Last edited: Nov 18, 2017
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  14. RobinDurham

    RobinDurham

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    This is a really good point. We are all driven to the speculative therapies because there's no hope at a doctor's office. We don't have FDA/NHS approved tests and treatments because our studies are small and not often reproduced. Researchers stay away from the field because they can't fund their careers, and the NIH claims the pot is tiny because they're not getting enough decent applications.

    At some point I gave up on the supplements and started giving a little to research. I think you, me, and @Orla have been around for a while and remember a time when the only people doing pathophysiological research (vs. the psych stuff) were clinicians like Drs. Peterson and Klimas, etc. Their work kept the field going, and we had the Pacific Fatigue Lab (now Workwell) who eventually come out with those CPET studies. They had a little donate paypal button so those must have been at least in part funded by patients. Now we have an intramural NIH study, a smattering of academic researchers, and a gradual shift away from GET (thanks to you in part). I agree with you that the money is there. For me, the outlook is probably better than it's ever been!

    It's just tough when you first get sick are desperate for help because your life is imploding, and donating to advocacy or research is less attractive than trying the next trendy thing. But, we're seeing the long term investments pay off and it's worth continuing to make them.
     
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  15. Dolphin

    Dolphin Senior Member

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  16. pattismith

    pattismith Senior Member

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    thank you Robin, this searcher really deserves some funding
     
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