Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

ASSSEM need 18,000 Euros to publish biomarker study

Discussion in 'Fundraising' started by Sasha, Jan 25, 2016.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Last edited: Jan 25, 2016
  2. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Oh! Magical translation:

     
  3. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,466
    ´Participants will be recruited from among those who have already participated in the early stages and were doubly diagnosed by our team as Canadians.´

    Those poor people!
     
    panckage, BurnA, L'engle and 7 others like this.
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    956
    Likes:
    3,949
    Is this the same group that a Spanish medical student/PWME told us about a year to a year and a half ago? They were looking for funds to continue research on B cell irregularities they'd found.
     
    sarah darwins likes this.
  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    956
    Likes:
    3,949
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Never Give Up likes this.
  7. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    956
    Likes:
    3,949
  9. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    My understanding is that ASSSEM is a patient-led organisation that (amongst other activities) has raised funds for IrsiCaixa to carry out research into ME/CFS. IrsiCaixa is an HIV/AIDS research institute and seems to be a highly respected institute, as far as my limited insight goes, and I have no reason to doubt the integrity of either of the organisations. One of ASSSEM's supporters uses this forum and has given me no reason to doubt his sincerity.

    I was disappointed that they have not published their recent results, but that seems to a problem with restricted funds that hasn't allowed them to carry out a comprehensive research study.

    The comment quoted above is the type of comment we regularly see from members of the patient community who don't agree with a specific line of investigation or a specific hypothesis. So I'd take it with a pinch of salt.

    But everyone should be content that they are donating to a trusted organisation if making donations, and they should be content that they know how their donation will be used.

    I believe that Dr Julian Blanco led the previous research project, and I believe he presented at the recent Invest in ME conference, and attended the symposium. I think Dr Jonathan Edwards has swapped notes with him.

    Note that I might have some details wrong - I'm going from memory - and it's difficult to understand all the details when always relying on translations and limited info.
     
    Last edited: Feb 3, 2016
    Valentijn, Sasha and Never Give Up like this.
  10. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
     
    Valentijn likes this.
  11. TeresaBCN

    TeresaBCN

    Messages:
    17
    Likes:
    62
    Barcelona
    I live in Barcelona - where the study is being run. It is the same study that they were raising money for last year. Somewhere on their website is says 12k already raised last year + 18k now needed. Not sure what they have been doing for the last year exactly....no explanation given apart from they have got approval/certificate from some authority to go ahead with the study. I asked if they are a charity on their website the other week, they said no, they are a not-for-profit organisation.
    Would be better to let the spanish nationals or residents like me to donate - we receive 75% rebate on donations upto 150€ per year.
     
    Battery Muncher, RL_sparky and mango like this.
  12. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    Update (from their website): http://www.asssem.org/ They seem to have come up with the money somehow.
     

See more popular forum discussions.

Share This Page