International ME/CFS and FM Awareness Day Is On May 12, 2018
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Encourage ME/CFS research/ clinical care by volunteering a few minutes/ week

Discussion in 'Latest ME/CFS Research' started by Hope123, Dec 14, 2014.

  1. Hope123

    Hope123 Senior Member

    I'm placing this note here because although I'm looking for a one or a few volunteers, it's not a patient advocacy project per se and it probably would most appeal to those people who are interested in research/ improving clinical care.

    If you have Internet access (I'm presuming you do if you're on this forum) and know the basics of entering information on an Excel spreadsheet, you can help increase the number and quality of researchers and clinicians interested in this illness. As many of you know, there aren't enough researchers/ clinicians in this field and the ones that are present are aging. We need new blood and here's something you can do about it.

    I'm expecting the project to take 30 minutes or so a week which can be done at one stretch or a few minutes here and there as you have time/ energy. It would be done remotely via Internet. However, this project is indefinite in its duration so while I don't expect people to commit indefinitely, a few months at a time would be great to minimize turnover.

    The rewards are both short-term (you get to keep up to date on the research and may get full-text to some articles) as well as long-term (as stated above). I may offer other benefits depending on how the project goes but this is not a paid position.

    If you're interested, drop me a private message. I will check back in a week or so. Thanks.
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Sounds interesting, if I wasnt already in over my head with dealing with the state disability service and a court case for ME/CFS discrimination, I'd probably volunteer.

    Thou I cant at this point of time, Im interesting in what you are planning people to do?

    Is this something like emailing researchers or research doctors and listing the ME/CFS studies in their field to make them more aware of the ME abnormalities in thier specific areas to get their curiousity up? eg sending a list of ME/CFS immune studies with interesting results to a researcher focused in immune areas. (I thought about focusing on advocacy in this way and to try to draw in new researchers before. I believe it is something the ME/CFS community should be doing and needs to do).

    If people grouped to get lists of interesting ME/CFS studies in the different areas. A standard letter could be done for researchers in the various fields to be receiving so they become aware (a letter everyone could copy if they wanted).

    The whole Phoenix rising community probably could help gather research in different areas if a thread was put up for each area asking members to put any studies they know about there eg "ME/CFS immune studies" "can people please share any studies they know in this field with link if possible?... or "ME/CFS hormone studies" (to be send to endocrinology researchers.

    Once that info was in a thread, it would be easy to set up the list.. to go onto emails once a standard letter was done.

    Anyway is it something like that you are proposing to do re the emailing of researchers?
    Last edited: Dec 14, 2014
    catly likes this.
  3. catly

    catly Senior Member

    outside of NYC
    Hi @Hope123 I would be interested. Sending you a PM.
  4. A.B.

    A.B. Senior Member

    Why the secrecy?
    Valentijn likes this.
  5. Aurator

    Aurator Senior Member

    I'm afraid, Hope123, the nature of your project is far too vaguely delineated to encourage would-be participants to come forward in significant numbers. You really need to be more specific about the kind of information you will be expecting participants to supply and how this information will be used.

    It sounds like a patient survey of sorts. Will the results of this survey be uniquely potent in some way in encouraging ME/CFS research? This is the impression you seem to want to give. On the other hand, your loose appraisal of it as something that would "appeal most to those interested in research" undermines the hope that it will achieve anything much at all.
  6. Dolphin

    Dolphin Senior Member

    Hope123 is a capable person who I know works hard for the ME/CFS community. I imagine this project is useful (I have lots of commitments myself so probably won't do it but hope others will).
    Kati and Sasha like this.
  7. Hope123

    Hope123 Senior Member


    Thanks, Dolphin.

    It's not a patient survey and it's not a project to document abnormalities. Those have been done before so I am doing something else. It's a way to connect those new/ younger clinicians or researchers working on CFS to those who have been in the field for a long time or are very active in it. I have a science background and so am familiar to some degree what may attract/ retain people in a field.

    Scientific interest, fame, and money are not the only factors attracting people to a field. Having mentors or getting to know the people in a field (and hence allowing one to keep updated in it, find collaborators/ friends, etc.) influences whether someone continues to research/ clinical care in an area. Both inside and outside science (see interviews of movie stars for example), how many times have you heard that "I got started in XYZ field because I met ABC" or "123 was my mentor and introduced me to this topic"? I got started in my own field because several people introduced me to it, told me I was good at it and then others encouraged me, providing me with contacts, funding, collaborators. Clinicians and scientists in this field are sometimes told by their peers that ME/CFS is not a real illness and hence not worth studying (even Lipkin got told this by NIH); thus, knowing others in the field provides both practical and emotional support for those who might be interested in it.

    Part of the secrecy is, I like to keep my anonymity on this forum and if I were to talk about the project, I would be easily identifiable. Hence the PMs.

    And thanks to the people who have already replied! I will get back to you next week as I have several things going on this week.
    Kati and Dolphin like this.

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