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Best CFS and/or Fibromyalgia groups to donate to?

Discussion in 'Action Alerts and Advocacy' started by michal, Feb 17, 2010.

  1. michal

    michal

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    Which research organisations support with collecting money?

    Hi,
    I would like to give a donation to 2-3 CFS research organisations. I asked my firends and family about the supporting of CFS research and they sent me untill now aroud 1000 EUR. Now I am thinking where to send this money. I am not strong at all in the research area but I would like to spend this money efficient (for example I have read that CDC doesnt make a good CFS research). So I would like to ask you where could I send the money. Now I have impression that everyone send the money to WPI but maybe its not good to send all the money only there. I checked some research organisations and I liked these ones:
    WPI, CFIDS Association of America, European Society for ME (ESME). My question is what do you think about these organisations - is it a good choice? or could you eventually propose other good research organisations?
    I also will try to motivate other CFS patients in my country to try to collect some money with they families and friends - I already asked some patients if they already supported a research but no-one did it - but some of them told me that even if they dont have too much money they will try the some thing like me. I think this is only the thing what we can do now to push the research when the CFS research organisations dont get too much support from grants.
    I also will try to contact the CFS organisations in other countries (more the other countries like US, UK - they support the research already quite a lot) - and maybe they can motivate the patients in their countries to do the same. But I have no contacts to foreign CFS organisations - so if you have some - just write me. Or just the people from other countries - who visite this web site- they can already contact their country CFS organisations because its easier because of the language.
    Ok, I think we have to try something to dont wait other 20 years for an efficient treatement. If someone has another idea how to push the research or something else what we need - just let me know. If I can help, i will try to do my best for it.
    caf
     
  2. Bob

    Bob

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    Hi Michal,
    In case it's helpful, I know two organisations in the UK who I would feel very happy about giving money to.
    Both of them have been long-term promoters of biomedical research into ME.

    The first is Invest in ME (IiME)...
    IiME have taken a keen interest in the WPI over the recent years and have invited the WPI team over to the UK every year to give talks at IiME's international conferences on ME in London.
    They are also keen supporters Dr Jonathan Kerr, who has also been at their conference every year.
    At the moment, Invest in ME are looking to fund more biomedical research and are currently seeking funds to support Dr Jonathan Kerr in a research project of his (details on their website).
    http://www.investinme.org/IIME Campaigning-Can Do Biomedical Research Fund.htm (donate to their biomedical research fund)
    http://www.investinme.org/index.htm (introduction to IiME)
    http://www.investinme.org/helpus.htm (general donation page)

    The other is ME Research UK... they also fund biomedical research, and they are currently funding the XMRV research project in Sweden that's been talked about on these forums.
    http://www.meresearch.org.uk/ (homepage)
    http://www.meresearch.org.uk/donation/index.html (donation page)
    http://www.meresearch.org.uk/research/projects/xmrvsweden.html (the Swedish XMRV study)


    I have faith in both organisations and they are definitely on our side.

    Best Wishes,
    and thank you for helping our cause,
    Bob
     
  3. jspotila

    jspotila Senior Member

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    All money donated to The CFIDS Association supports our research and public policy programs. Dr. Suzanne Vernon is giving a webinar tomorrow (February 18th) about our research strategy. You can sign up for the webinar here. Whichever organization(s) you decide to support, thank you!
     
  4. Frickly

    Frickly Senior Member

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    Hi Michal, I posted the following on our facebook cause and might be another option for you:

    Donations for "The Center for Multidisciplinary Research on Chronic Fatigue Syndrome and Gulf War Illness"

    A leader in the field of Chronic Fatigue Syndrome (CFS) research, Dr. Klimas is the current President of the International Association for Chronic Fatigue Syndrome and the principal investigator of the National Institute of Health's (NIH) Center for Multidisciplinary Studies of CFS Pathophysiology at the University of Miami. Dr. Klimas has been appointed to the inter-agency CFS Coordinating Committee, chaired by the Surgeon General of the United States as well as the founding editor of the Journal of Chronic Fatigue Syndrome. Dr. Klimas is also the Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center. In addition to an active clinical practice, Dr. Klimas is an internationally recognized lecturer and leader in the field of Chronic Fatigue Syndrome as well as a principal investigator in a number of ongoing studies on CFS and GWI.

    The Center for Multidisciplinary Research on Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI), led by Dr. Nancy Klimas, is dedicated to the treatment and study of Chronic Fatigue Syndrome and related neuroendocrineimmune diseases. The center focuses on better understanding of the neuro-immune-endocrine interactions in CFS and GWI, and their role in the pathogenesis of these complex disorders. Through clinical practice and research, the Center is offering health care that affects people’s lives in real and meaningful ways.

    If you would like to help further research in this area you may donate in the following ways:

    1)Print form at: www.med.miami.edu/give and specify that donation will go to “Chronic Fatigue Syndrome-Morton Fund.” Donations may be mailed to: University of Miami Miller School of Medicine Office of Medical Development, P.O. Box 016960 (R-100), Miami, FL 33101

    2)Online gifts can be made at: www.med.miami.edu/give, under Department select: “Chronic Fatigue Syndrome – Morton Fund”

    Gifts to the Morton Fund directly support CFS research at the Center for Multidisciplinary Research on Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI).
     
  5. Frank

    Frank Senior Member

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    Michal great that you collected this amount!
     
  6. michal

    michal

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    Thank you for your tips. Its a bit difficult to decide.
    We can also see how much money are missing for the research.
    But I have already a small good news - Some people wrote me that they decided to do the some thing.
    I am continuing to make a small campaign for research organisations.
     
  7. Dolphin

    Dolphin Senior Member

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    ME/CFS Pocket Money Research Fund

    Here's another one:
    ME/CFS Pocket Money Research Fund
    http://www.pocketmoneyfund.org/

    It only started recently but would be good to get it to keep going as I think it has potential.

    As you can see from, http://www.pocketmoneyfund.org/contributor.php , people from lots of countries have supported it.

    If you are contacting groups to encourage them to raise money to give, you could also encourage them to put the logo on their site.

    We need all the countries around the world to try to give. At the moment, most countries are raising little or nothing. We have no researchers in Ireland interested but we have still raised money because we know it is important.
     
  8. Dolphin

    Dolphin Senior Member

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    This is the spirit we need.
    There is a list of a lot of groups at: http://www.me-net.combidom.com/meweb/web2.6.htm

    As I say, even if they could put up the ME/CFS Pocket Money Research Fund http://www.pocketmoneyfund.org/ logo and/or links to other research funds, it would be a start. We need as many different countries trying to raise money.
     
  9. realjoy

    realjoy

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    Besides here :D

    My daughter is competing for a scholarship, and had the idea of using it as an opportunity to give back and also bring more awareness. It's one where you win by the amount of online votes that you receive. She wants to pledge $0.10 per vote to groups and/or research to help her Mom and people like me (awww!) Anyway, I said definitely aboutmecfs and WhittemorePeterson. I was also thinking maybe fmaware (NFA) or AFSA. What do you all think? Any thoughts or suggestions? Do you think it's a good idea?

    Joy
     
  10. leelaplay

    leelaplay member

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    Hi realjoy - and welcome to the forums

    What a great thinking on your daughter's part. Maybe she had good parenting!

    Your 2 ideas of aboutmecfs.org (ie here) and WPI are great. I can't give an opinion on which are good, but there's a list already started here, Which research organisations support with collecting money that can offer you some more options.

    I'll post a note to the admins asking these threads to be merged.

    Please tell your daughter I think her project idea is great - and wish her good luck.

    islandfinn

     
  11. leelaplay

    leelaplay member

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    [if: my caveat is that I know next to nothing about the UK groups or of the politics involved]

    XMRV and the MEA Ramsay Research Fund (UK)
    |
    Charles Shepherd posted this to co-cure Feb 19 '10

    The ME Association's Ramsay Research Fund (RRF) is a separate ring-fenced research fund that supports biomedical studies aimed at increasing our understanding of the underlying disease process in ME/CFS as well as clinical studies aimed at finding more effective forms of treatment.

    The full cost of the general administration of the RRF is paid for out of our general unrestricted funds. So there are no staff salaries involved in administering the RRF and all donations go towards research activity.

    Full details of research that has been funded by the RRF in the past few years, almost all of which has been published in reputable peer review scientific journals, can be found in the MEA website summary:
    http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=30&Itemid=205

    Full details of studies that are currently being funded, or are about to be funded, can always be found in the RESEARCH SECTION of the most recent MEA Board of Trustees website summary. January 2010 summary:
    http://www.meassociation.org.uk/ind...es-meetings-18-and-19-january-2010&Itemid=219

    Research that has been funded by the RRF and published within the past year includes:

    a.. Gene expression in ME/CFS by Professor John Gow et al. :
    b.. http://www.meassociation.org.uk/ind...nic-fatigue-syndrome&catid=30:news&Itemid=161
    c.. Factors involved in the development of severe ME/CFS by Professor Derek Pheby.
    http://www.meassociation.org.uk/ind...into-severe-risk-factors-for-mecfs&Itemid=219
    Research being funded by the RRF that is currently in progress includes:

    a.. Muscle energy metabolism in ME/CFS (neuroimaging study) - Professor Julia Newton et al, University of Newcastle
    b.. Various initiatives involved in post-mortem tissue research. These include funding for the retrieval and examination of post-mortem specimens and the setting up of a post-mortem brain and tissue bank. Part of this work involves funding a feasibility study which is examining all aspects - ethical, financial, legal, practical - of setting up such a facility. There is an article on this post-mortem research, and body donation procedures for medical research, in the February issue of ME Essential magazine.
    XMRV RESEARCH: The MEA has made it clear in our regular website summaries that we are very keen to consider good quality funding proposals relating to XMRV. To take this forward Dr Shepherd has met, or been in contact, with almost all of the UK virologists and retrovirologists who are involved in XMRV and ME/CFS research. However, the MEA/RRF has not yet been approached for funding assistance - so none has been given.

    We are currently discussing a small study that will retest anyone in the UK who has had their blood tested for XMRV in the United States and wishes to take part. No funding has yet been made. We are also keen to try and sort out why there is such a stark difference between the emphatic negative results from the two UK studies and the very positive results from the US. This and other ideas relating to XMRV research are being discussed on an on-going basis with the relevant experts here in the UK.

    NB: The most recent Gow, Kerr et al study, which found no evidence of XMRV in ME/CFS patients, was supported by the UK Medical Research Council; The Wellcome Trust, The Cunningham Trust and the CFS Research Foundation. MEA position statement on this study:
    http://www.meassociation.org.uk/ind...hed-in-retrovirology&catid=30:news&Itemid=161

    DONATIONS TO RRF: If anyone wishes to donate to the RRF, there are a number of ways of doing so - please see the MEA website or ME Essential magazine. If anyone wants to donate towards the post-mortem research, they may wish to do so through sponsoring Ed Stafford and his increasingly successful attempt to walk the entire length of the River Amazon for MEA/RRF research.http://www.walkingtheamazon.com/


    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    17 February 2010
     
  12. realjoy

    realjoy

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    Hi islandfinn :D

    Thanks for the welcome! I"m not new here, I just dont post much LOL Thanks for the link and for offering to merge the two threads. I think it would be great if she can be successful with this...get a scholarship AND give back at the same time. We'll see how it goes!
     
  13. Tammie

    Tammie Senior Member

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    www.pocketmoneyfund.org is a really good one....at this point, it is one of the best ones

    I think WPI is wonderful, of course, but it seems that their research is going to be focused on XMRV at least for the foreseeable future.....while that is very important, there are a lot of other CFS issues that need to have continued research, too, and if everyone keeps focusing on WPI the other CFS stuff is not going to get the funding it needs
     
  14. realjoy

    realjoy

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    Thanks sarahg :)

    I don't know if she has done it yet or not, but I did go read the thread...very helpful! We'll definitely donate here and pocketmoney. We also want to find one specifically dedicated to FM research as well. We talked and decided we would list 3-4 groups that the funds would be divided between. I'm going to help her set up her own webpage to tell people about it. Let's hope we can get lots of votes and maybe even some other people to jump on board and donate too! :D

    Joy
     
  15. Frank

    Frank Senior Member

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    realjoy can you tell us where and when the online voting will be held, so we can organize the masses ;-) Or maybe you don't know yet ..
     
  16. realjoy

    realjoy

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    Hi Frank :)

    Thanks so much! That would be great! My DD has been putting together a website to tell people about her contest & the fundraising. I did waaaay too much last week and am still trying to heal from my crash (when will I ever learn?) so I am behind. The voting starts tomorrow, so I will try to get the info posted over here then or by no later than Wednesday. It goes until next Tuesday, so there should be enough time. It's a bracket type thing, so there will be stages.

    Joy
     
  17. Dolphin

    Dolphin Senior Member

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    I'd prefer if they were separate to be honest. Which research groups to donate to is a specific question in itself and there are quite a few options around the world. So enough for an interesting thread in itself. It isn't something that is really covered on many sites. So a thread on this could be worth linking to. While this combined thread has now got very long and unfocused and is less attractive as something to link to especially as it is likely to continue to get bigger.

    Threads can include links to each other without always being combined.

    Sorry for the delay replying but the question wasn't asked in our thread.
     
  18. Dolphin

    Dolphin Senior Member

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    Is Islandfinn a man or a woman?

    http://www.gpeters.com/names/baby-names.php?name=Finn
     
  19. realjoy

    realjoy

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    The Link Has Arrived

    Sorry for the delay. DD worked hard to put together a site, and then had to redo it. Anyway, here is the link: www.adimeandadream.com

    I also had a really wonderful conversation with the gentleman that runs pocketmoneyfund and he is going to write a blog about her efforts and the scholarship. Right now, it looks like she is going to make it into the next round of voting, but then it will be her against 63 others. It is done "March Madness" bracket style, with voting re-starting every few days. Her principal also sent out a mass email to all students and faculty! Let's hope it will help with awareness and also bring in some much needed donations :)

    p.s. If there is anything on her site that you thing needs to be worded differently let me know. She doesn't know all the 'right' terms, and my brain fog hasn't let me be of much help
     
  20. Dolphin

    Dolphin Senior Member

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    Great. Just voted and signed up (had to make up a GPA).

    For each round, I hope an E-mail that can be circulated will be created by somebody (not me). If that is done, who knows what will happen. I'll "cover" the ME/CFS community in the Rep. of Ireland anyway.

    Do you know there are 23 regions? so maybe best not to take anything for granted in terms of getting in the top 64.

    So if you’re reading this thread, go on and vote now!
     

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