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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Joan Grobstein M.D. to the IoM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 28, 2014.

  1. Nielk

    Nielk

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    Hello. I’m Joan Grobstein, M.D.

    This committee has been asked to develop evidence-based clinical diagnostic criteria for ME/CFS. This could be a very easy task because the Canadian Consensus definition has already been developed by experts in the field, has been recommended by the primary professional society for this disease and was recently endorsed again by experts. Clearly, experts think the evidence supports the Canadian definition. It isn’t perfect, but it doesn’t have to be. Few medical definitions are perfect, since knowledge changes over time. The Canadian is adequate and should be used. Thus your primary task has essentially already been done. If you choose to endorse it, you can spend the million dollars allocated to this report to identify the many gaps in our knowledge of ME/CFS and put together a sorely needed research plan with adequate funding.

    Unfortunately, the evidence base for ME/CFS has been adversely affected by two factors: lack of research funding and a multitude of definitions of the disease. ME/CFS receives approximately 6 million dollars per year in most years. Compare this to the billion dollars per year that has allowed AIDS patients to lead essentially normal lives. Because of poor funding, none of the definitions are particularly well-supported by research and many aspects of the disease--multiple infections, immune and mitochondrial dysfunction, and orthostasis--have not been adequately studied. Large, well-powered studies are rare. And, because there are overly broad definitions of “CFS” that include many patients who don’t have ME, there are studies in the literature that do not apply to ME patients at all.


    The CDC study will not clarify the definition. The design is flawed--most of the data is self-reported symptoms. The patient community has begged the CDC to collect data on promising objective measures such as 2 day CPET, viral loads and natural killer cell function. The CDC has refused.


    Please note that treatment of infections, hypotension, and immune and mitochondrial dysfunction have helped patients in small studies. Looking at evidence of successful treatment, published and unpublished, helps to define the disease’s essential features.


    Post-exertional malaise, orthostatic intolerance, cognitive dysfunction, and viral symptoms are the most disabling aspects of ME/CFS. The Canadian includes these and other important aspects; Fukuda and other even broader definitions do not require them. Broad definitions make it impossible to identify abnormalities in bona fide ME patients.


    Since the definition issue can be easily solved by endorsing the Canadian, I urge you to address the issue that has made it difficult to characterize the disease and make progress: poor funding. Be bold. Good science costs money. DHHS has asked the wrong questions, but you can still give them the right answers: use the Canadian and increase funding. The medical community has treated this group of patients poorly.


    You, as medical leaders, have the opportunity to begin to change that reality.
     
    slayadragon, Ren, taniaaust1 and 3 others like this.
  2. alex3619

    alex3619 Senior Member

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    Its nice politics, especially addressed to the HHS. This is what the HHS and CDC should have been doing. So it makes a statement. Alas the IOM panel cannot properly respond, as indeed they cannot respond to much of the advice many have given. They cannot cancel the contract (the IOM or HHS would have to do that, not the panel), they cannot proceed except by using the IOM process, a process which is procedurally flawed.

    Yet the message is out there. Politically this is a good message.
     
    Last edited: Jan 28, 2014
    taniaaust1, SOC and Nielk like this.
  3. leela

    leela Slow But Hopeful

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    I loved how she looked up at the committee and emphasised "Treatment helps patients!" with such urgency!
     
    SickOfSickness and Nielk like this.
  4. leela

    leela Slow But Hopeful

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    Oh and I wish to clarify that Leela Play is not me, for those who are (understandably) confused by the double-leela situation.
    Leela Play is a wonderful long-standing member of the community and patient/advocate who works tirelessly with all our other wonderful
    activists. It is so heartening to see and hear our one voice, one body begin to gain momentum and power.
    Such gratitude to all who contribute with their unique strengths and talents!
     
  5. Nielk

    Nielk

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    Video of Joan's presentation:

     

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