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Canadian Federal Health Minister to make announcement regarding ME, August 22

Discussion in 'General ME/CFS News' started by DokaGirl, Aug 21, 2019.

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  1. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @rvallee
    “Pretty good article by one of the better newspapers in Quebec. Good quotes from Dr Moreau.

    -- Copy from the translated article below --

    ...............

    “Myalgic encephalomyelitis is characterized in adults by unexplained fatigue of more than six months, joint and muscular pains, headaches, pressure drops when getting up and poor quality sleep. It is a "debilitating disease" that affects about 60% of women and occurs in adults between the ages of 30 and 40, said Dr. Moreau”


    Writing that 60% of women have ME is not only inaccurate but makes less of the disease. Is it possible for someone @rvallee )in Canada to ask the newspaper to issue a correction?

    ETA: question mark added
     
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  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Milo. Do you have a link to any more information about this?
     
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  3. Mij

    Mij Senior Member (Voting Rights)

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    I can't find where he mentions over trained athletes. In this video he discusses specific sub-types and where the 'fun happens'. He mentions sub type 1 who experience vertigo which I find interesting.

     
  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @rvallee

    Thank you very much for noting key email addresses for sending our appreciation to. Your assistance made this task easier.

    A task I was very happy to be able to do.

    And, thanks again for your commentary.
    Cheers.
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    I think the jury is still out but I generally assume that MCS is mostly, if not wholly, MCAS (I think MCAD is also used?).

    The report was specifically on MCS though, but yet another topic where way more research is needed as we are still stuck at the very basic problem of finding the right words that mean the same thing to everyone. Which is becoming a more problematic issue as time goes by, even the very notion of "pain" is being bastardized and repurposed to be squished into ideological framings.
     
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    It's not a great report but it at least gives numbers and scope to the extent of the issue and how everything is yet to be done about an estimated 1M Canadians suffering from serious life-altering health problems from a group of orphan diseases. The framing of environmental illnesses is unclear, the most likely link between the 3 conditions is obviously the immune system but whatever.

    I had a better link from the working group itself but can't find it. As others have noted, the current government will definitely not do anything so the report was published at an especially bad time. Oh well, at least the numbers speak for themselves.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5999262/
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Mostly lost in translation. The original French is OK. Could be worded better but the meaning is down to how "60% of women" can be used to mean "60% de femmes" vs "60% des femmes". The article uses "de femmes" so for francophones the proper meaning should be understood correctly.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    I criticize a lot so I praise a lot where it's due :)
     
  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @rvallee. My O level French is not good enough for such subtleties, or maybe it’s the intervening 50+ years!

    So long as the correct message was conveyed by the newspaper. Thanks for all the information.
     
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  10. Forbin

    Forbin Senior Member (Voting Rights)

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    This is pretty interesting. By analyzing microRNA from ME patients, they found 4 distinct groups, which also had distinct responses to stress/exercise. Group 1 had the most severe reaction and was the only group in which vertigo/dizziness and "mental fogginess" was a major reaction.

    Chart 20.jpg


    When they looked at Group 1 compared to the other groups, the found higher levels of TSP-1 (Thrombospondin 1, aka THBS1), which can produce vasoconstriction effects. He speculates that that this may result in reduced blood flow to the brain causing "mental fogginess."

    Commenting on this, Dr. Moreau says, "This is the beginning of something."

    Chart 21.jpg

    This is oddly in keeping with the diagnosis I got way back in 1983 when a renowned otologist, Dr. Frederick Linthicum, of the House Ear Institute told me that vasoconstriction in the inner ear could be causing my vertigo/dizziness.

    It makes me wonder what the effect of widespread vasoconstriction in the smallest blood vessels of the brain would be? Would a subtle drop in perfusion at the cellular level in the brain be detectable? What kind of effects might it cause?


    Just speculating...
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    It's definitely a subtle language quirk ;)
     
  12. Mij

    Mij Senior Member (Voting Rights)

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  13. Ravn

    Ravn Senior Member (Voting Rights)

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    Oops, looks like I muddied the waters by using the word 'muddled'.

    What I meant was not that the French was 'wrong' as such. As @rvallee points out there is a difference between 'de' and 'des' in French and a careful and informed reader would have little difficulty interpreting the sentence.

    However, I always read with the eyes of a casual reader without prior knowledge about the topic in question, as I was taught to during my brief dabble in journalism studies many years ago. And in this case that casual, uninformed reader is just as likely to assume a simple typo - de instead of des - as he or she is to stop and reflect '60% de femmes = 60% of what?", no matter how logical the conclusion may appear to the more informed. Good journalistic practice would have been to make that clearer (something I failed to do myself with my 'muddled' - ouch!).

    The rest of the French sentence isn't all that clear either: "Il s’agit d’une «maladie débilitante» qui frappe environ 60% de femmes et qui survient chez l’adulte entre les âges de 30 et 40 ans, a dit le docteur Moreau."[translation: occurs in adults between the ages of 30 and 40]

    This could easily could mislead the casual reader to assume that ME in adults only or mainly occurs between the ages of 30 and 40.

    But I don't think a 'correction' is necessary. It's really just nitpicking in the context of an otherwise pretty good article.
     
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  14. strategist

    strategist Senior Member (Voting Rights)

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    So maybe PEM has something to do with TSP-1 going up and acting as vasoconstrictor.

    There's also some literature on how it activates TGF-beta (the one cytokine that stands out more than the others in ME/CFS).
     
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  15. Wonko

    Wonko Senior Member (Voting Rights)

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    So in that case small amounts of alcohol should temporarily 'fix' the issue?

    As an extensive research program, conducted in the 1980s and 1990s, suggests that this is not consistently the case, at least in my case.
     
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  16. TiredSam

    TiredSam Moderator Staff Member

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    I drink precisely 125 ml red wine every evening, no more, no less. Have done for a few years. Initial results are good. I shall continue my research for the cause.
     
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  17. Mij

    Mij Senior Member (Voting Rights)

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    Next ME Conference. Stay tuned!

    upload_2019-8-25_11-29-47.png
     
  18. Mij

    Mij Senior Member (Voting Rights)

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  19. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    How, if at all, does that fit with ME patients' reduced red blood cell deformability?

    Does it compound the 'brain fog' (and other symptoms where RBCs go)?
     
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  20. Mij

    Mij Senior Member (Voting Rights)

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    Transcript from OMF here :

    "I put up the first pie chart is the group one, the last one is group 4. And you see looking about a factor called thrombospondin-1 which is an anti-angiogenic factor. So TSP-1 is more elevated after the stimulation in group one. And it could contribute to a kind of vasoconstriction in those patients which explained why they feel a mental fogginess because you have some effect on the brain blood flow. As opposed to the group 4 which have less symptoms, is going in the opposite direction.
    What is very interesting is thrombospondin-1 is known to act through two receptors. Now we could actually start in vitro experiments to validate. If I block one receptor or the other one with an agonist or an antagonist I can either mimic or prevent these effects. Don't start to look at the literature and try to have those drug and experiment on yourself. We don't know yet to what extent, but this is the beginning of something".
     

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