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Denmark: Open letter to health politicians from Danish ME Association with impressive list of signatures

Discussion in 'General ME/CFS News' started by Kalliope, Jan 8, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The open letter is even in English :) The letter is also sent to the Minister of Higher Education and Science and the Danish Health Authority.

    The Danish ME Association: Open Letter to Danish Health Politicians

    ETA: In short they demand a long term investment in biomedical ME research.
     
    Last edited: Jan 8, 2020
    Barry, JohnTheJack, epipnoia and 33 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I counted 97 signatures.
     
  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Wow, great letter!

    Thank you to all who participated in this. I hope it gets notice in many countries.
     
  4. strategist

    strategist Senior Member (Voting Rights)

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    Nice list of signatures. Good to see more European researchers too.
     
  5. MeSci

    MeSci Senior Member (Voting Rights)

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    Very impressive, clear, and very well-supported!
     
  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    A great letter.

    Is it being circulated in other countries too?
     
  7. dave30th

    dave30th Senior Member (Voting Rights)

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    I'm going to post it on VB.
     
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  8. Andy

    Andy Committee Member & Outreach

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    And you did :)
    http://www.virology.ws/2020/01/08/trial-by-error-the-danish-me-associations-open-letter/
     
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  9. dave30th

    dave30th Senior Member (Voting Rights)

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    Yes but does anyone get why footnote #4 and #5 are by Hornig's and McGregor's names, respectively?
     
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  10. Andy

    Andy Committee Member & Outreach

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    Footnote 5 at least refers to a paper by McGregor, perhaps footnote 4 should be against one of the authors of that paper? But it does seem strange to have them against their names.
     
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  11. dave30th

    dave30th Senior Member (Voting Rights)

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    I saw that about McGregor, but I've never seen a footnote linked to a name on a list, and if Hornig was a co-author of the other thing it would be consistent. It's a bit weird. Anyway.
     
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  12. Forbin

    Forbin Senior Member (Voting Rights)

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    I'd guess that footnotes 4 & 5 probably pertained to paragraphs on the second page of the letter (footnotes 1-3 are referenced in paragraphs on the first page). Footnote 4 does seem like it could apply to the second paragraph of page 2 of the letter. Footnote 5 is harder to figure out. Maybe it pertained to a deleted paragraph on page 2.
     
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  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    The first commenter on @dave30th 's latest blog (the Danish letter with lots of signatories) seems to have a bit of a bee in his bonnet about something, and the author of that comment has been really condescending. Unfortunately he has been cryptic and so his comment is memorable just for the rudeness. I don't actually understand what he is talking about. Can anyone help?
     
  14. Michelle

    Michelle Senior Member (Voting Rights)

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    I've seen him post in the past as part of the "CFS is not True ME" crowd. Though I'm not sure what specific information he's talking about.
     
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  15. Andy

    Andy Committee Member & Outreach

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    No, there is, seemingly, no help for Guido Den Broeder - his main reason for being seems to be to hold inflexible opinions and to be rude to those people who don't hold those same opinions.
     
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Dave has a lot of patience engaging with people who have a wide range of stances in ME politics . I find some people rather dogmatic and just tend to skip over their comments. I wish I could be more open minded.
     
  17. Solstice

    Solstice Senior Member (Voting Rights)

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    Annoying thing is that he used to hold a lot of sway over one of the patient organisations in the Netherlands. I don't mind him battling for good disease-definitions, but at a certain point he went beyond useful and just became a nuisance seeming to have an axe to grind with everyone who mentions cfs and me in the same sentence. I for one don't care if they say if I have cfs or ME(i always use the latter), as long as it get's fixed.
     
  18. strategist

    strategist Senior Member (Voting Rights)

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    Same. I just want good scientists working on the problem so that we can really understand it. If it turns out to be several illnesses that (speculating) maybe just have a particular kind of dysautonomia or mitochondrial dysfunction in common that produces PEM then I'm fine with that. I'm happy with small steps forward, as long as they represent a real progress of knowledge. Even something like the negative Rituximab trial was progress because we now know it's unlikely to be a B cell problem. The true ME crowd, despite being apparently very convinced that they know some truth, have achieved nothing whatsoever in the last decades.
     
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  19. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    I don´t exactly get what you are asking, but I would think that the authors wanted to provide the readers with two impressive examples of pointful research or considerations underlying their apply.

    I don´t know about the paper attributed to Hornig, but I think that both (with their statements) are chosen well for this purpose:

    The McGregor result is of course not confirmed, but shows strikingly a possibility: if a strong epigenetic change is involved, it may be important for any treatment (as well as it may lead to more details).

    The point they mentioned Hornig for is striking in itself: If PEM is a hallmark, then any application of GET means basically a contradiction.


    (It is, naturally, unimportant here wether the biological results claimed by Hornig (e.g. 2018) would be in line with these of Mc Gregor, as the situation asks for research and confirmations, which is the request of the letter.)

    edit: spellings
     
    Last edited: Jan 9, 2020
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  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I didn't know ME Advocacy had a European Office....
     
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