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Article: Three for One: Family Foundation Steps up for ME/CFS Research

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 30, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. ballard

    ballard

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    Just donated!Thank you to the McGrath Family Foundation for their generous gift. :D:balloons:
  3. Cort

    Cort Phoenix Rising Founder

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    Glad to hear it Ballard! We are lucky to have several innovative research programs going on CFS and this is definitely one of them. :thumbsup:
  4. taniaaust1

    taniaaust1 Senior Member

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    What CFS definitions are those who are doing the studies using? A good study depends on having a well defined patient group. Otherwise what appears as "good" studies, if with mixtures of different patient groups may be "ruined" studies
  5. Francelle

    Francelle Senior Member

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    I know my maths brain is not what it once was but as I read it, donate one dollar and the McGrath Foundation will donate two dollars not three dollars.

    Not complaining of course!
  6. Nielk

    Nielk

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    francelle,It says: your one dollar becomes three. This means that for ecery dollar donated, they will match with two but, the actual result is that yourinitial investment becomes tripled to the charity.All the best,Nielk
  7. Francelle

    Francelle Senior Member

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    Nielk I am commenting on what Cort said not on what the actual offer is. Cort said that "you put a dollar in for M.E./CFS research and the McGrath FF will match it with three more dollars", which is not correct.
  8. Cort

    Cort Phoenix Rising Founder

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    I believe the CAA uses, as do all research groups that I know of the in the US, the Fukuda Definition as the base definition. (No researchers anywhere that I know of have used the CCC or the ICC as the basis for their studies. A few may have incorporated the CCC into their studies). One reason for this is that the Fukuda definition has been THE definition for so long that is embedded like rock in CFS research. In order to get funding from the govt. researchers need to use a definition the federal govt accepts.

    My guess is that what needs to happen for researchers to directly compare the results of using the ICC and Fukuda definitions in their studies. If that happens they can begin to carve out how different the ICC is and why it should replace Fukuda and eventually the ICC or another definition will gain traction.

    If I remember correctly the CAA did require flu-like onset and attempted to get as many people as possible that fit the CCC into their XMRV study.

    The CAA has reported that they have never used the Oxford criteria or the Empirical Definition in their studies.
  9. Cort

    Cort Phoenix Rising Founder

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    My math, as usual is not very good (sigh) :confused::confused:
  10. SpecialK82

    SpecialK82 Senior Member

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    Cort - thanks so much for highlighting this terrific deal! Thanks McGrath Family for caring about us!

    I just donated :victory::victory::victory: (3 victories for the price of one :D)
  11. Cort

    Cort Phoenix Rising Founder

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    Great to hear SpecialK! :thumbsup::thumbsup::thumbsup:

    I just read this from Anne on the CAA's Research1st website - I thought it bore highlighting...

    (It would be fascinating to see how many studies with promising results have not been followed up on (anyone up to that??))
  12. Cort

    Cort Phoenix Rising Founder

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    Suzanne Vernon just commented "Hi Cort! Our 2011 RFA accepts use of the 94 and the CCC."This is good news - I don't know if there are others out there and there may be but this is the first I've heard of a grant opportunity that allows investigators to use CCC.
  13. Marco

    Marco Old blackguard

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    Great funding initiative and an interesting research agenda including this one :
    Regardless of the sophistication of any algorithm any analysis is only going to be as good as the data inputed (GIGO). ME/CFS research is frequently dismissed for being poorly designed; too small; inconsistent; not replicated etc and frequently confounded by the various case definitions which would make any 'Cochrane Review' type sifting process pretty redundant as 'gold standard' research will be few and far between (or in the case of the PACE trial would conform to the RCT gold standard but fail every test of external validity).I wonder how they will ensure the quality of the research being considered? Fukuda criteria only would exclude Oxford etc studies but Jason's work suggest Fukuda cohorts will include a proportion of confounding patients. Is size of cohort or non-replication a deal breaker? Given the state of research funding we are lucky to see any studies regardless of size and even less likely to see attempts to repeat and replicate.Will they just throw the data at the program to see what emerges or will it be a 'Bayesian' type guided search that tests the degree to which the data fits a prior hypothesis?I'd be curious to see the details.In the meantime something similar has already been done when CDC made available a collection of data on the Wichita cohort :

    One paper looked at biological pathways rather than single genes.Their conclusions (despite the Wichita cohort) were interesting :

    http://www.liebertonline.com/doi/pdf/10.1089/cmb.2007.0041

    Apologies for the digression.
  14. Cort

    Cort Phoenix Rising Founder

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    No problem, Marco. Lots of good points. It'll be interesting to see if anything dramatic or significant pops out. You would be a good one to interview that researcher :)))
  15. Daffodil

    Daffodil Senior Member

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    this sounds great but with so little money to donate, i would rather donate to someone looking for specific pathogens because i believe an infection or infections is causing the disease....and looking at more downstream effects is the same waste of time and money that has been going on for decades..although perghaps the gene expression part...but i dont know much about that.
  16. Cort

    Cort Phoenix Rising Founder

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    Hi Daffodil, You might try Dr. Montoya then. By the end of next year the CFI's Lipkin study should provide us with a really good picture of which pathogens are present, how many people with CFS they are present in and even, I believe, what types of people have them.
  17. Daffodil

    Daffodil Senior Member

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    Thanks Cort. Every morsel of new info I get helps me hold on another day - no small feat!

    So now we not only have Roche finding XMRV..but I have heard that Lipkin is finding evidence of retroviral involvement...maybe he has already found the retrovirus, who knows.

    If Lipkin does find XMRV or a new retrovirus, will they still wait till the end of 2012 to let us know? I would think that news about something like that would come out right away since its spreading right now. Wouldn't they have to tell us at least as soon as they feel sure enough?

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