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What Do Patients Want? MERUK Speaks

Discussion in 'General ME/CFS News' started by Cort, Jul 31, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    MERUK (formerly MERGE) as one of my favorite organizations. Recently Dr. Abbott gave a talk regarding what patients want. Some of the parts that caught my eye are included below

    Less psychosocial emphasis


    CBT is a kind of general purpose therapy for dealing with symptoms more effectively but only in chronic fatigue syndrome is the case made that it's curative. Just by and by how ironic it is that the home of the dreaded CFS moniker - the US - leads the world in physiological research, while the birthplace of ME - the UK - is solely focused on behavioral techniques.

    Dr. Abbot notes that ME/CFS patients aren't asking for all the research money should be spent on physiological research just a fair proportion of it. This illustrates how tough things are in the UK.

    He then goes through a plethora of intriguing research areas; mitochondria, brain/central nervous system, immune system, vascular system etc.

    Then he illustrates what a 'big' disease ME/CFS is relative to other diseases that have less impact yet get enormously more funding. I think facts like this need to be hammered home more and more.

    Then two heartbreaking examples: studies that worked out; i.e. were successful yet were never followed up on. They boggle the mind - what more did the funders want? The study actually worked - it opened up new ground. These in my mind are tragedies - and there are more of them.

    There's quite a bit more
  2. Michelle

    Michelle Decennial ME/CFS patient

    Portland, OR
    ABSOLUTELY! I think the point you make often that the real $$ is at the NIH is so important. While I appreciate ME/CFS patients may focus their distress at the CDC as they seem to be proactively harming us (i.e. Empirical Definition), the lack of action on the part of the NIH is not a benign thing. It too actively harms us.

    I would also combine the money issue with Mary Schweitzer's post at Co-Cure recently pointing out how researchers are not reading each other's research. Last year when there was a study that came out showing gait abnormalities in ME/CFS patients, I went to look it up on PubMed to write about it and found three other studies from the 1990s showing the same damn thing that had not even been mentioned. How many times do they have to reinvent the wheel?

    What do I want? I want more money for research. I want, as Dr. Abbott points out, that money to be spent proportionately the same way it is with other diseases. And I want researchers to actually read, damnit! In the social sciences you have to be well read in your field before you ever start doing research and I suspect the same is true in the physical sciences. Is it that hard for ME/CFS researches to do a freeking PubMed search?!
  3. Jody

    Jody Senior Member

    I may just be politically obtuse (and I am) or it may be the ol' CFS brain that gets in my way but I do NOT understand why CFS/CFIDS/ME gets this shunning treatment in the medical/research/funding worlds.

    Can anyone explain it to me so I can understand it?
  4. Cort

    Cort Phoenix Rising Founder

    The NIH is a BIGGER problem than the CDC, I believe, because it is our real institution; bigger budget - all focused on research and we're down to $3,000,000 a year there - lower, much lower than it was 10 years ago!

    There are several problems; here are some

    • the review committees at the NIH rarely have CFS researchers on board and often don't know anything about the disease so they reject reject reject proposals.
    • Young researchers are afraid to do CFS research because they're trying to establish a career and there is no career in CFS research.
    • Most of the research community believes CFS is a joke. The definition is terrible and it probably allows all sorts of subsets into studies which makes proving anything difficult - yet the CDC has done almost no work on finding subsets.
    • nobody knows what CFS is; is it an immune disease? a brain disorder? a behavioral disorder? it is difficult to put ME/CFS in a category - therefore there is no Institute at the NIH that is willing to take it on. So it's stranded in a small office and has no budget and no influence.
    • we have a debilitated and mostly splintered community that has never engaged in much active advocacy so things drift at the NIH and CDC according to the whim's of those agencies

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