1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

USA: News from Simmaron Research foundation

Discussion in 'News from organisations' started by Viola, Nov 22, 2017.

  1. Viola

    Viola Senior Member (Voting Rights)

    Messages:
    105
    Location:
    Ireland
    Vote to get money for Simmaron Research foundation (free and easy)

    Hi everyone, this came up on my Facebook. I don't know how long it is going to go on for. It involves daily voting, but any votes would be good.

    It is very easy. You just click on the link below, then after a few seconds a box comes up with info and click on vote Then a box comes up and you click on "I am not a robot" and input your email address. That is it.

    I hope this link works. http://mygivingstory.givingtuesday.org/fbcontests/profiletab/MyGivingStory/2730817

    Edited to add: This is a link to the Simmaron Research Foundation website scientific advisory panel http://simmaronresearch.com/scientific-advisors/
     
    Last edited by a moderator: Aug 20, 2023
    edawg81, zzz, PandaEyes and 4 others like this.
  2. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    That was easy! :thumbup:
     
    Viola and Joh like this.
  3. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    Bumping this up in case anyone missed it during the holidays. Voting is exceptionally quick and easy, even for a technologically challenged person such as myself!
     
    Joh, Viola and Esther12 like this.
  4. Viola

    Viola Senior Member (Voting Rights)

    Messages:
    105
    Location:
    Ireland
    Just a reminder, a few more days to go. You can vote daily. I don't actually know how they are doing.
     
    Joh likes this.
  5. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    I haven't been able to vote since yesterday. I get a message to update to a supported browser, yet Firefox, which I use, is listed among the supported browsers. :confused:
     
  6. Viola

    Viola Senior Member (Voting Rights)

    Messages:
    105
    Location:
    Ireland
    I think it is over now
     
  7. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    I am still seeing the Vote page, but am still getting the weird 'update to a supported browser' message.
     
  8. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Little Bluestem likes this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Last edited by a moderator: Aug 20, 2023
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,984
    Merged thread

    Simmaron Research board has voted to expand the foundation’s mission to include a localized effort to mitigate the impact of the #COVID19 pandemic



     
    Last edited by a moderator: Aug 20, 2023
    Kitty, Michelle and merylg like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,984
    To be honest, I'm disappointed by this. There is a shortage of funds in the ME/CFS world.
    I hope other ME/CFS research charities don't follow suit (I don't imagine many will).

    It could be the case, of course, that they won't use existing funds, but that seems unlikely.
     
  12. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,478
    Location:
    UK
    If ME charities do want to look at Covid-19 research I think a good project would be a long term monitoring of people selected at random, tracking symptoms, recovery and how many had long term issues over a good number of years. As in how many who got Covid went on to develop ME like symptoms and if so were there particular symptoms or severity that they had initially.
     
    Kitty, Milo, Michelle and 10 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,984
    Yes, that could be useful. Though it is worth pointing out that ME/CFS-specific research may also go on to be useful for those who suffer long-term effects of COVID-19.
     
    Kitty, Michelle, merylg and 9 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,984
    In my country, a charity can’t do things outside its aims. It’s probably the same in many countries. So it probably depends how vague or specific such aims are. So probably not a big worry for most charities with ME or ME/CFS in their titles.
     
    Last edited: Apr 23, 2020
    Kitty, alktipping, chrisb and 2 others like this.
  15. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    There's going to be a lot of attention and money on COVID-19, and people like Wessely, Gerada, Crawley can be expected to try to use their 'expertise' as a way of getting a piece of that pie, shaping how people with post-Covid19 symptoms are viewed and treated, which I expect will in turn lead to further problems for patients with ME/CFS. Some decent ME/CFS charities getting involved early, and perhaps getting positions of influence, could be much better for us than having them sit it out and focus just on ME/CFS.

    It does depend on the details of what is being done. This could mean all sorts: "a localized effort to mitigate the impact of the COVID-19 pandemic".
     
    Kitty, StefanE, 2kidswithME and 8 others like this.
  16. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It might be reasonable to expect that they will not emphasise the psychoneurotic elements of any long term sequelae until the health of the Prime Minister is assured.
     
    Kitty, Simbindi, Lidia and 5 others like this.
  17. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,984
    Perhaps I needed to be more specific. I don't have any major problems with money from ME/CFS charities being used for post-Covid studies. However my interpretation of this is that is not necessarily what is being referred to, but just general COVID research.
     
    Last edited: Apr 23, 2020
    Kitty, 2kidswithME, Lidia and 4 others like this.
  18. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,291
    Location:
    Canada
    Honestly this should not be underestimated.

    Where medicine is driven by dogma and propped up by politics, sometimes it can be forced to take weird concessions because the politics have changed too much.
     
    Kitty, alktipping and Sarah94 like this.
  19. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,204
    Kitty and Dolphin like this.
  20. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,815
    We have seen this over and over down the years. Everyone else is more important than us so the money to help us is used for someone more deserving - the exact explanation given when the CDC used the money they were given for ME for other projects.

    Grants have been used to look at liver disease, almost anything except us.

    That could be why there has been no help for us for over thirty years. I am past making excuses for them.
     
    Kitty, 2kidswithME, Simbindi and 6 others like this.

Share This Page