1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Next CFSAC meeting June 16-17, 2014

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 24, 2014.

  1. leela

    leela Slow But Hopeful

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    I know I'm extra irritable b/c i'm in a really bad crash, but I am so so sick and tired of what an ever-increasing taxpayer circus-clown act this meeting has become. I cannot fathom how humans can possibly act this way to one another. Bleurgh!
     
    Dreambirdie, Kati, RL_sparky and 5 others like this.
  2. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    I'm glad they were able to get these findings to show this association. However, whenever this comes up I think about all of us ME/CFS patients that are not being captured by Medicare stats because some doctors won't use the ICD code for "chronic fatigue syndrome" due to its stigma, etc. They put us under other codes. I wonder what the TRUE picture would be if ALL of us were being captured by these statistics.
     
    Kati, SOC, Keela Too and 1 other person like this.
  3. NK17

    NK17 Senior Member

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    " Homo homini lupus est."
    " Man is a wolf to [his fellow] man."
    - Plautus 195 BCE
     
  4. Nielk

    Nielk

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  5. Nielk

    Nielk

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    Carol Head of solve CFS/ME voiced her concerns of the P2P process.
     
  6. Nielk

    Nielk

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    Dr. Lee speaking about "post IOM". Taking a model of the Epilepsy community post their IOM report.
     
  7. Andrew

    Andrew Senior Member

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    Who is Margaret Jacobs, who expressed gratitude that IOM should agree to look into an illness.
     
  8. GalaxiiGrl

    GalaxiiGrl

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    Indeed. We should be grateful that IOM agreed to accept a million dollars to do this job!
     
  9. Nielk

    Nielk

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    They are getting us ready to accept the IOM report. They want our organizations to work together in anticipation.
     
  10. Nielk

    Nielk

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    Billy Moore : Why do we not have an NIH representative today while we discuss P2P. Very disrespectful from NIH to the community.
     
    dandy1day, Valentijn, Kati and 4 others like this.
  11. Rrrr

    Rrrr Senior Member

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    Where can we see this/find this testimony????
     
  12. Nielk

    Nielk

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    When it comes out on the CFSAC site.
     
    Sasha likes this.
  13. Andrew

    Andrew Senior Member

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    They are trying to get us to fall into line. The message loud and clear is don't expect any consideration from NIH. Our places as patients, advocates, and experts is in the audience -- listening to them and only commenting when called upon. This is nothing more than a token involvement. Look at what happened to the veterans. They gave their input to IOM, and IOM ignored all of it.
     
    Sing, Valentijn and Nielk like this.
  14. Kati

    Kati Patient in training

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    It sounds to me that there is still a whole lot of paternalistic medical bullying happening out there.
    CFSAC is a big joke. :-(
     
  15. leela

    leela Slow But Hopeful

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    i've only been paying attention to CFSAC for maybe four years, and even in that short time the bizarre charade has gotten increasingly more overt
    and hostile. so strange and frustrating to witness. at least wanda jones had some sense of humanity and propriety.
    this new chair just feels like a weird robot to me. i can't watch any more, i get too pissed off. thank you Nielk for having the stomach to watch and report for us. and thanks to all who continue to serve and offer testimony, even if it feels like spitting into the wind.
     
    Sing, Kati, SOC and 4 others like this.
  16. Nielk

    Nielk

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    As can be attested by the lack of people in the audience and less people testifying by phone, the whole community seems to feel the same.

    Maybe this is their tactic. Get us all angry and frustrated to the point that we all get burned out. HHS certainly has the upper hand here because they are running this show - in case you had any doubts.
     
  17. Nielk

    Nielk

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    I don't know how many of you watched this till the end but, the last hour was particularly disturbing to me. They seemed to want to galvanise and unite us in respect of preparing to warmly accept the IOM final study result. Some of the CFSAC members want us to make a big media fanfare about it. They feel that this is a unique opportunity to make a name for the disease.

    The reason I was so disturbed is that they assume that whatever comes out of the report will automatically be accepted by the community. What if, as many advocates and experts in the field expect, the outcome is a disaster for us? I think that we should definitely organize and prepare for that very possible event. What are our options then?

    In addition, what if the P2P and IOM results clash? If these are truly independent studies, that should definitely be a possibility. That is the risk of running these expensive initiatives simultaneously without transparency. The fact that they don't seem to be worried about that possibility makes me think that HHS has a lot more knowledge/input as to the results of these studies.

    Why is it that Dr. Lee can state with confidence that she knows that the IOM report will be very positive? Why does she think that they will answer all her questions and more? Is she getting information which she shouldn't? If this was a true independent study, she should know nothing about their progress beyond how many meetings they have had and how much they have expensed out.

    If I had any respect/confidence in HHS before, it is all lost now.
     
  18. Nielk

    Nielk

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    In their effort to try to calm us down and prepare us for the big "reveal" - study report, they invited a representative of the American Epilepsy Society who gave an interesting account of their experience with the IOM. They (patient groups) were very active with the IOM throughout the study. They worked together and were very please with the results. For them, it put Epilepsy bck on the map and gave them much needed awareness.

    There is a huge difference though between the Epilepsy study and our IOM study. Epilepsy organizations were also sponsors of the study. They wanted this study, which was not to find criteria of the disease. As I heard others stating, it is like comparing apples to oranges.

    All this, is to try to get us psychologically on board and ready to receive with "enthusiasm" the verdict.
     
    NK17 likes this.
  19. Valentijn

    Valentijn Activity Level: 3

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    They should have brought in a representative of patients with Gulf War Syndrome. Surely their IOM experience would have been even more relevant, as GWS is so similar to ME/CFS.
     
    Nielk and shannah like this.
  20. Dreambirdie

    Dreambirdie work in progress

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    Those meetings are a farce. I can't stomach them.

    What I'd like to see is an ACT-UP style group crash it and take over the reigns of power. Only experts on ME and those with family members affected by the disease should be allowed on the committee.
     
    jimells, Sing, leela and 1 other person like this.

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