2022 Petition: Denmark must follow international evidence-based guidelines for ME (anyone can sign)

The Danish Health Authorities rejects the new NICE guidelines and keep clinging to CBT and GET.

Please sign and share this petition to help put pressure on the Danish Health Authorities so they will start following current biomedical science.

I've linked both an English translation and the original Danish petition here. Please sign the original Danish one and only use the google translated English version to see what you sign.

It's very simple to sign, all you need to do is sign with name, city, country and email-adress, and verify the email-adress after signing.

Danish original petition (sign here):
https://www.skrivunder.net/danmark_ma_folge_internationale_evidensbaserede_retningslinjer_for_me

English google translation:
https://www-skrivunder-net.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=no&_x_tr_pto=wapp

 

Done. This one is very easy to sign.

 

Done.

 

Done.

 

Signed !

 

signed . thanks for bringing this petition to our attention .

 

Signed.

I found it very easy to have Danish and English translation open in 2 windows and swop between to complete my details.

U.K. is “Storbritannien”, when on the drop down menu.

Please confirm your signature from the email - see bold wording saying Yes:

…din underskrift.
Ja, jeg har skrevet under på denne underskriftindsamling

 

Tweeted

https://twitter.com/user/status/1486257358842085376

 

Great to see this shared and supported in here!

Just to give a bit of context, this petition actually predates the document which came out just the other day from the Danish Health Authority and amounts to a kind of position statement, largely rejecting the updated NICE guidelines. That document was in response to a (brilliant, in my view) letter from the Danish ME Association and both are accessible as pdf's here: https://me-foreningen.dk/om-me/me-og-politik/ (under the December 2021 heading, titled "Skrivelse til SST om NICE 2021" and the link just below that). Both are well worth a run through Google Translate. The petition does a great job at catching the ball indeed as it seems nothing is about to change by mere... uhm, pointing out helplessly outdated information and serious scientific shortfalls.

In very quick summary:

- On diagnostic criteria, the Danish Health Authority cites the plentitude of such and a lack of consensus as their main argument for rejecting the criteria proposed by NICE -- in other words, they do not actually reflect on the content of those.

- The Danish Health Authority insists on keeping ME (or, in their terms throughout the document, "chronic fatigue syndrome (ME/CFS)") filed under the 'functional disorders' umbrella term. Just to note, this goes directly against the unanimously passed parliamentary motion from 2019, instructing the body to separate the two.

- On GET, in a really 'interesting' section and by much rhetorical exercise, the Danish Health Authority goes from initially stating, "NICE disencourages the use of GET as a treatment of ME/CFS", to arguing that GET treatment protocols currently in use in Denmark are in line with the NICE recommendations. In essence, they are confounding graded exercise with pacing, arguing that current regimes already take into account patients' (non-)tolerance for exercise and protect against overexertion.

- On CBT, the position of the Danish Health Authority is basically to keep this as a primary treatment, contrary to what the guidelines recommend.

So, very little progress here, but another good reason to support the cause by reading and signing the petition above

 

Thank you @Anders_Vang for the back story.

I thought we “had it bad” in the UK but I am so sorry to read all this. We knew it was an uphill battle in Denmark, because on Karina’s “experience”.

Solidarity with our Danish friends - I will be sharing the petition on #MEAwarenessHour tonight

 

I think I must have missed a trick here 'cos never got an email.

ETA: OK, it had gone into my junk mail. Sorted.

 

Thanks for the solidarity

I guess it isn't really going great anywhere... But yeah, especially seeing the parliamentary motion leading to so little was disappointing -- not sure to what degree that's gonna go much further. Have to say tho, the Danish ME Association are so on it, following up with the Ministry and Health Authority every step of the way. So there's very good work being kept up here and we have to keep believing care and science will eventually prevail!

Right, Wednesday, ME Awareness Hour, come on brain remember!

 

Signed and wish you all good luck.

 

Question -- Started to sign the petition, but stopped at the field "By" in the box under the surname. I don't know what this is. @Noir, can you please tell me what I need to fill in here? Thanks. And good luck with all your efforts.

 

@Willow my “auto fill” understood Danish better than me and added my town/city into the “By” box.

 

Can confirm that the mysterious word "by" means city.

 

Thanks for the input. Finished signing the petition.

 

But if you prefer it can be less specific than city - I just put "UK" for mine, as it displays it. Can also edit it afterwards.