Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Jen Brea and Senator Ed Markey Brief US Congress Members

Discussion in 'General ME/CFS News' started by Jesse2233, May 27, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Quite a remakable intro from Senator Markey and good briefing from Jen. They're putting a lot of pressure on the NIH

     
    Last edited: May 27, 2017
  2. sarah darwins

    sarah darwins I told you I was ill

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    Haven't watched it all yet but that intro by Senator Markey is indeed excellent. Seems like a prime example of how the level of discussion soars when you take the zealotry of the BPS crowd out of the equation. Hope to see more from this arena in the future. Very encouraging.
     
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  3. A.B.

    A.B. Senior Member

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    Nice work. Advocacy is getting somewhere.
     
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  4. slysaint

    slysaint Senior Member

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    Agree, very good intro. @znahle brilliant. Anyone fancy doing a transcript of his section?

    eta:
    briefly this is what he said:

    Among the mysterious illnesses ME/CFS is one of the most challenging.

    We only know a little bit about the epidemiology.
    It affects more women than men.
    25% of patients become housebound or bedbound.
    91% of patients are undiagnosed.

    Some of the challenges:
    Misinformation and antagonism.
    Insufficient funding for research.
    Several diagnostic criteria making it difficult to compare studies and data with fidelity.
    Lack of FDA approved drugs.
    Lack of Pharma investment.
    Insurance and ICD coding debacles.
    No feasible biomarkers.
    Poor grasp of the history and minimal patient support.
    The Cardinal problem is the severe knowledge gap:

    Slide of graphs showing Autism, MS, Alzheimers research progression curves……….in ME/CFS the line is flat.

    Myths that exist:
    1) ‘Your blood tests came back normal’
    Well, what you measured in my blood came back normal.
    Show slides of data from ME/CFS patients blood samples compared to healthy controls:
    There are hundreds of factors in blood that are very different between the two.
    2)’You look normal’
    Quality of life study rank on the lowest score in terms of QoL.

    3)It’s caused by depression or anxiety.
    Maybe it comes as a secondary but is not the primary cause.
    Look at the evidence; as a scientist if you look, if there is one disease that is screaming out that it is not one of depression it is this one;
    We have increased cortisol levels in anxiety and depression, in ME we have a reduction.
    Enlarged adrenal glands in a/d in ME a reduction
    We have reduced seratonin with depression, here [ME] we have an increase in seratonin levels.
    We have lack of motivation[a and D], here we have lack of energy not motivation.
    Exercise improves depression, exercise can lead to a crash and PEM in ME.

    There is all kind of factual data that debunk all these myths.

    But things on the research front are improving.
    Lists what has been happening over the last two years.

    Why we are in this predicament:
    This is a disease where it has traditionally been defined by symptoms not by bio-markers. And the question is are there underlying objective abnormalities.
    As shown in the Myths section we have numerous objective abnormalities.
    Very serious defect in four major categories:
    Bioenergetics, Neuro-endocrine system, immunology and microbiome

    This is not only a disease that is rooted in biological and physiological abnormality,
    It is a very complex disease, that is rooted across different fields of medicine and biomedicine.

    ME/CFS iceberg:
    It is there, it is deep, we only know what’s above the surface, and there is a lot of work yet to be done.

    Science and Policies paradigm:
    Eg poor quality research, maladapted policies, poor investment in science and technology, inability to retain talent, profit driven private sector investment, misinformation.
    "
     
    Last edited: May 27, 2017
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  5. Hutan

    Hutan Senior Member

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    Yes, that all looked very useful. Thanks to all involved.

    Did I hear right that Jen attributed her improvement to drugs developed from HIV research - presumably anti-retrovirals?
     
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  6. Silencio

    Silencio Senior Member

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    This was a great presentation.. Does anyone know how many congress members were there?
     
  7. shannah

    shannah Senior Member

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    Starting at the 15:40 mark, that seems to be what she's implying. @Hutan
     
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  8. Groggy Doggy

    Groggy Doggy Guest

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  9. Diwi9

    Diwi9 Senior Member

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    @Emily Taylor is burning rubber by putting the pedal to the metal with her advocacy work for ME.

    Thank you to all patients and activists involved, and thank you to SolveME/CFS and #MEAction for their collaboration and leadership.
     
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  10. gabriella17

    gabriella17 Senior Member

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    MEMum likes this.
  11. anniekim

    anniekim Senior Member

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    @Hutan She has said on twitter recently that she is far from recovered but if she didn't take valcyte she would be bedridden.
     
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  12. RivkaRivka

    RivkaRivka Senior Member

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  13. gabriella17

    gabriella17 Senior Member

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