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  1. Chris

    ProHealth is Proud to Announce its 2017 ME/CFS Patient Advocate of the Year: Jennifer Brea

    I understand the mixed feelings, but still, congratulations to Jen! Also, I like the author's review of the film a lot, it's analytical, sensitive, and even philosophical, in just a few lines. The list of important takeaways for medical professionals and politicians is well summarized, the...
  2. Chris

    Article in French Newspaper «J'écris ma souffrance pour affirmer que je suis vivant malgré tout»

    What a well written and vibrant plea. - Why this absurdity of systematically giving non-medial excuses to patients' sufferings? Why this absurd role reversal where patients must explain to doctors their condition? Since when does uncertainty regarding physiopathology become an obstacle to...
  3. Chris

    MUST Fight MUS

    Great advocacy project @Allele. And it can have many catchy names: MUST FIGHT MUS MUS MUST GO MUST MUTE MUS NO MORE MUS US vs MUS
  4. Chris

    Tues 20 Feb: Livestream of post-Unrest panel discussion, incl. Ron Davis, Lily Chu, Montoya, Tuller

    He also made such a good point when saying about the early days of AiDS that even if certain people did not take it seriously, they could not deny it existed because patients were dying, whereas often ME is both not taken seriously and denied it even exists.
  5. Chris

    Tues 20 Feb: Livestream of post-Unrest panel discussion, incl. Ron Davis, Lily Chu, Montoya, Tuller

    David Tuller had a good one, they were discussing the obvious difficulties of inducing CFS in mice, and I think I heard him add something like "and then you give them subjective questionnaires"!
  6. Chris

    Q&A: Avindra Nath, MD

    Maybe in his next slides his team will no longer be called "Team Tired" but "Team Malaise"? He seems to have understood that patients want to see the term "fatigue" replaced by "malaise" while forgetting the most important part: "post-exertional". Anyone who has really assimilated how this...
  7. Chris

    What does your crash feel like?

    If I had to use just one word for how my crashes feel like: Feverish. (with all that entails - a feverish sensation knocks your cognition out, your whole body feels weak, hypersensitivity to stimuli increases, you are unwell from head to toe)
  8. Chris

    Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome (2018) van der Meer et al

    "Chronic fatigue syndrome (CFS) is characterized by disabling fatigue, which is suggested to be maintained by dysfunctional beliefs." "suggested" - well put, the process of hypnotic suggestion comes to mind. "Look at my pendulum and slowly repeat after me: "I have dysfunctional beliefs, I...
  9. Chris

    1st ME/CFS Canadian Collaborative Conference

    From what I've heard the following can be expected: Lucinda Bateman Peter Rowe Maureen Hanson Alison Bested Ron Davis Patrick McGowan Nancy Klimas Byron Hyde Derya Unutmaz Roland Staub Eleanor Stein Betsy Keller Luis Nacul Chris Armstrong Vicky Whittemore
  10. Chris

    OMF claim that Naviaux has replicated 77% of the metabolic pathway abnormalities found in his 2016 publication via Facebook

    The question I always ask myself regarding Naviaux's hypometabolic hypothesis which evokes a kind of constant low energy state is - how does it account for those huge swing downwards and drastic drops that occur during crashes?
  11. Chris

    Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia, 2017, Natelson et al

    Would this brain lactate elevation be subjectively felt as a "feverish" feeling or some other kind of cerebral malaise? I believe you have said elsewhere that inflammation needs not be invoked to account for fever-like sensations. What about lactate? Is it a naïve view to say: if lactate...
  12. Chris

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Just a thought on the order in which PEM criteria should be listed: If you want to make it clear that PEM is first and foremost debilitating, then I believe any criteria should begin by clearly listing this as the very first point: PEM criteria no 1: a pathological loss of "functional...
  13. Chris

    What blood tests would you get?

    If this effect is not inflammation, then, in what other ways could these factors be affecting the brain? What other processes could be occurring, what would you call them? "The patient describes a feverish flu-like sensation but it's not inflammation, it's…" ? My apologies for asking so directly.
  14. Chris

    Is this the mechanism underlying PEM?

    I can think of five possible ways to partly understand PEM (I am being redundant, having written this in another thread, but too important a subject!) An exertion or stressor triggering: - an immune activation, inflammation - an ATP drop triggering body systems to shut down - increased brain...
  15. Chris

    Coyne and Michael Sharpe on Twitter

    Another Michael-Sharpean Nietzsche quote: "Why does man not see things? He is himself standing in the way: he conceals things"
  16. Chris

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    I am always looking for simple and clear terms to spell out huge differences, these are a good example (sorry, off topic)
  17. Chris

    Crash course in progress

    Thank you all for your replies. @Mattie yes I have POTS. The way your blood flow was measured seems to be the most logical way to do it (upright), when assessing blood flow with a spect scan the patient is lying flat, in this position his cerebral blood flow is at its best, those who...
  18. Chris

    Crash course in progress

    Hello everyone and congratulations on a terrific website with great forums! It is my first day here and though this is not the standard way to introduce oneself I would like to do so by introducing what has been my single most pressing question for years and years: Getting at the heart of...
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