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Collecting reasons to donate (and/or fund-raise) for ME/CFS

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Dec 22, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Prompted by a discussion elsewhere, I wrote something relatively quickly on the issue (see post #2).

    Perhaps other people can add some ideas/reasons they have.
     
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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    15492072_1234213573339833_1254523868311701154_   n.jpg
    Some reasons why I donate to research into my illness (ME/CFS)

    (Following on from a discussion elsewhere, I was prompted to write this)

    I see donating to ME/CFS research as ways to:

    - Help myself.
    There clearly isn't enough known about the condition. So much is guesswork. I would like treatments that work (ideally cure) before I die and the sooner the better.

    I would also like to know about which of the more experimental therapies that might be tried could be dangerous for me. Similarly I would like to know more about which drugs to take and which to avoid for other medical reasons e.g. anaesthetics. There is too much guesswork now.

    I want to get as much support as possible from support systems e.g. disability payments, disability supports, etc. There will likely be some continuing discrimination generally until more is known.

    When there is more known about the pathophysiology of the illness, pharmaceutical companies will be more willing to invest their millions in trials. A little money now can snowball into more money being invested in the condition.

    When you want something of any sort, you very often have to invest time and/or money to get it. What I really want more than anything is my health back so it seems natural to spend some of my money trying to increase the chances of it happening. Given I am not totally broke, not giving any money to it doesn't seem very sensible.

    - Help other people with ME/CFS that I've come across over the years.
    It's nice to try to help other people you know. I have seen all sorts of losses people have had and problems they have endured due to ME/CFS, both because there are not effective treatments for the condition but also even without effective treatments, not enough is known.

    - Helping the millions of children and adults around the world affected, plus others who have not become ill yet. Some of these are in developed countries and some are in underdeveloped countries. In some developed countries, there is some recognition of ME/CFS, but in many other countries, there would be little or no recognition of it due to a lack of diagnostic tests, etc. ME/CFS causes both a huge amount of human suffering but also a huge strain on society: reducing this burden would free up money and resources for other things.

    So donating the research cover so many bases in terms of what I think is worth giving money to. Similarly in terms of what I think is worth fundraising for.

    Here are some ME/CFS research funds in case anyone is interested: http://phoenixrising.me/resources-2/research-charities
     
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  3. Tom Kindlon

    Tom Kindlon Senior Member

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    Somebody wrote this elsewhere in reply to my post:

     
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  4. Demepivo

    Demepivo Dolores Abernathy

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    @Tom Kindlon Merry Xmas to you & your family.

    Thank you for your tireless work on behalf of the patient community.
     
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  5. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    it eases the pain in my soul... we are all that we have, I believe that almost nobody who isn't afflicted by this disease or has a relative affected by it cares about us an ME. Only ourselves can get away from this darkness, together as one!
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member

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    This is proving popular on Facebook so I thought I would post it here.
    3a1cb36b5329bc0467ecd7868e729cfe.jpg
     
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  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    a biomarker would be enough for me, or if I'm more ambitious, to know "the cause"
     
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  8. Tom Kindlon

    Tom Kindlon Senior Member

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