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Special edition of the journal Work with at least 12 articles on ME/CFS

Discussion in 'BioMedical ME/CFS Research' started by Tom Kindlon, Jun 23, 2020.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Some or all of these are worthy of their own threads, but I'm not going to set up those threads at this time.

    From: Dr. Marc-Alexander Fluks
    [​IMG]
    [​IMG]

    [​IMG]
    Source: Work
    Preprint
    Date: June 16, 2020
    Guest Editor: Amy Mooney

    ___ Jacobs K.
    From the Editor.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203167

    ___ Mateo LJ, Chu L, Stevens S, Stevens J, Snell C,
    Davenport T, VanNess JM.
    Post-exertional symptoms distinguish myalgic
    encephalomyelitis/chronic fatigue syndrome subjects
    from healthy controls.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203168

    ___ Lee J, Wall P, Kimler C, Bateman L, Vernon SD.
    Clinically accessible tools for documenting the
    impact of orthostatic intolerance on symptoms and
    function in ME/CFS.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203169

    ___ Davenport TE, Stevens SR, Stevens MA, Snell CR,
    Van Ness JM.
    Properties of measurements obtained during
    cardiopulmonary exercise testing in individuals
    with myalgic encephalomyelitis/chronic fatigue
    syndrome.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203170

    ___ Ausubel B
    What ME/CFS caregivers want you to know.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203171

    ___ Mirin AA.
    NIH can no longer turn its back on chronic fatigue
    syndrome.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203172

    ___ Mirin AA, Dimmock ME, Jason LA.
    Research update: The relation between ME/CFS disease
    burden and research funding in the USA.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203173

    ___ Vink M, Vink-Niese F.
    Graded exercise therapy doesn’t restore the ability to
    work in ME/CFS. Rethinking of a Cochrane review.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203174

    ___ Lopez-Majano D.
    Impact of myalgic encephalomyelitis on treatment of
    comorbidities: A lived experience.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203175

    ___ Chu L, Fuentes LR, Marshall OM, Mirin AA.
    Environmental accommodations for university students
    affected by myalgic encephalomyelitis/chronic fatigue
    syndrome (ME/CFS).
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203176

    ___ Tokunaga K, Sung AP, Tang JJ, Guglielmo MJ, Smith-
    Gagen J, Bateman L, Redelman D, Hudig D.
    Inclusion of family members without ME/CFS in research
    studies promotes discovery of biomarkers specific for
    ME/CFS.
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203177

    ___ Podell R, Dimmock ME, Comerford BB.
    Documenting disability in myalgic encephalomyelitis/
    chronic fatigue syndrome (ME/CFS).
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203178

    ___ Mooney A.
    Research, recommendations and lived/personal experience
    with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    (ME/CFS).
    Work. 2020 June 16.
    https://content.iospress.com/articles/work/wor203179
     
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    To facilitate sharing:

     
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  3. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Note that these articles are currently behind a paywall but I understand the intent was for open access. May be a timing issue. I'm checking on that.
     
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  4. Denise

    Denise Senior Member (Voting Rights)

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    As I understand it all articles about ME in this issue will be open access and available in a couple of weeks (early July?).
     
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  5. Medfeb

    Medfeb Senior Member (Voting Rights)

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    @Denise yes, I've heard the same thing.
     
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  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Trial By Error: A Few Interesting Studies

    By David Tuller, DrPH
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    That is simply stunning. I would really like for this to be expanded on because it's one of those facts that need overwhelming evidence for people to believe, most physicians would scoff at the idea, rejecting it as absurd, even with this paper as evidence.

    I don't doubt the work, I just know that citing peer-reviewed papers is not enough without eminence-based validation. The ability to cherry-pick and discount contradictory evidence on ME is impressive, as if there is a visceral need for the belief system of conversion disorder to be true.

    One would think that medical authorities would be interested in addressing this. I really don't understand how that's not the case. The need for denial is so intense that even a figure of this magnitude would barely register a shrug. Government is obligated to act on evidence and to actually follow through a reliable process in order to validate it. I don't understand why medicine can simply void that and just go with feels.
     
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  8. boolybooly

    boolybooly Senior Member (Voting Rights)

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    At least we got the abstract for that one, detailing that NIH ME research funding was only 7% of the value comensurate with the disease burden. The preceding paper intriguingly entitled "NIH can no longer turn its back on chronic fatigue syndrome" has no information about why, due to the lack of an abstract. I surely hope the confusion about paywalls can be resolved since the power of information like this is enhanced by availability to form a point of reference for public debate.

    I think its a valid question to ask though, why does the profession dismiss ME?

    When I look for answers the following perspective occurs to me.

    Primarily economic, we know the insurance lobby worked hard on reducing their liabilities by framing ME as mental illness which until the 1996 Mental Health Parity Act and subsequent legislation was a driving force behind the misrepresentation of ME in adversarial legal proceedings because payouts for mental conditions were many times lower than for physical conditions.
    https://en.wikipedia.org/wiki/Mental_Health_Parity_Act

    Dr Byron Hyde gave us some pointers about how this propaganda snowball began to roll with the academically fraudulent claims of hysteria in disease, by McEvedy, in his Little Red Book, which topic was discussed in Jen Brea's documentary Unrest.
    http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf - see p11+

    As I see it economic pressures also acted on health care provision decision makers who swallowed the lie which came from opportunists looking to advance their careers either by serving the insurance lobby or by using that illegitimate dynamic to expand the patient population they were funded to serve by government.

    This raises a secondary aspect of the primary cause, professionalism, while the path of increase for certain professionals was short termist misdiagnosis this created pressure to suppress contradictions to their narrative which unduly impacted NIH and NICE decision making, still evident in the difficulties over criteria, definitions and best practice guidelines today. The knock on effects of which had powerful import for GP practice which is circumscribed by these agencies and most medical professionals would find themselves obliged to avoid sticking their necks out and thus were absenting themselves from the political battlefield. This was a wholesale capitulation of an entire profession to the undue influence of the capture of regulation by the insurance lobby and has important lessons we must recognise to prevent repetition in the future.
     
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  9. Trish

    Trish Moderator Staff Member

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    Threads have been started for the individual studies.
    They have been listed with links to the threads and the articles by one of the news team, copied below:
    https://www.s4me.info/threads/news-in-brief-june-2020.15439/#post-270040

    This one also appears to be from the same batch but not included above:
    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline, 2020 Davenport et al
     
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  10. Denise

    Denise Senior Member (Voting Rights)

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