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

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.

 

I counted 97 signatures.

 

Wow, great letter!

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

 

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

 

Very impressive, clear, and very well-supported!

 

A great letter.

Is it being circulated in other countries too?

 

I'm going to post it on VB.

 

And you did

http://www.virology.ws/2020/01/08/trial-by-error-the-danish-me-associations-open-letter/

 

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

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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

 

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

 

He takes an absolutist position that only those diagnosed through criteria he approves of can use the term ME.

 

Article about the open letter in the big Danish newspaper Politiken. Behind paywall, though. The title is: 97 researchers alerts about an illness that made 38 year old Madelleine's life into a living hell

https://politiken.dk/forbrugogliv/a...es-liv-til-et-helvede?shareToken=tl_OpfAAJuiA