Discussion in 'Advocacy Action Alerts' started by andypants, Feb 3, 2019.
This went well, didn't it?
This is so incredible that I can't stop not believing it.
I want that in Germany, too. Is there more info somewhere how this was achieved?
New article tonight from Politiken:
Folketinget styrker indsatsen for patienter som 29-årige Marie Lousie, der lever med konstant træthed
google translation: The parliament strengthens its effort for patients like Marie Louise, 29, who lives with constant fatigue
The politicians state in the opinion that doctors should focus much more on one particular diagnosis of neurology, G93.3 post-viral fatigue syndrome / ME. And they want it separated from the collective term 'functional disorders', which contains a large number of medically unexplained diseases, in which doctors cannot determine what patients fail through regular examinations and tests.
I believe the Danish MEA partnered with one of the political parties/representatives to prepare this and bring it forward. Similar to the partnership with CM in the UK, maybe. I think a lot of work has been done over a long period of time to get there, but I don’t know any of the specifics.
Let's not forget the general, community push:
Unrest brought to light Karina's case to a wide audience
Protests of Per Fink
Karina's family, relentlessly promoting ME awareness in Denmark
And lots, lots of local advocates banging down doors.
I would also like to remind everyone that the fight isn't over until the vote this Thursday.
Please if you are in Denmark or you know someone who is -- tell them to directly thank their MP between now and then, and emphasize that science is on their side.
It will matter.
The highest levels of Denmark's health administrators must be getting quite nervous -- they've been pushing these therapies some time. I expect they will say just about anything right now, and that the idea of a "loud minority" of "mad patients" are pushing "false narratives" will feature prominently.
Logic & compassion will win the day, but I think some pointed thank-yous would not go amiss!
Rumors say the Danish Health Authority will be launching a counter offensive tomorrow.
I expect things to get pretty ugly. Don't think anyone was actually expecting this much progress to be made, and now the entire functional disorder approach is in danger. After all what's the point in having Fibro / IBS be a functional disorder when ME/CFS no longer is?
Fink and some of his colleagues have worked on this their entire life. Also the director of the Danish Health Authority went out of his way to vouch for the functional disorder approach very publicly last year. It will be a bitter fight, and I expect them to tell politicians to stay out of ''science''.
OK, I heard the same, but wasn't sure how public that info was. Now that it's out there, yup... this is coming down the pike.
No one belongs in such a Frankensteinian nonsense of a category. Might as well call us "problem patients" and be done.
Fink in a Rumpelstiltskin hissy fit over the IOM Report, in:
Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017. Per Fink. Journal of Psychosomatic Research 97 (2017) 127–130
"An additional challenge is the small but very active patient groups that aggressively spread misinformation on the social media. In some cases, they also try to undermine doctors and researchers with whom they disagree. Unfortunately, it seems to have some impact on research. The Institute of Medicine in the US report on CFS/ME avoids including any studies on psychological factors or treatment by stating that this is a medical condition and not a psychiatric one [7,8].
This can only be counteracted by authorities, layman information on the internet, in books etc., and doctors must be aware of the scientific basis of medicine."
I'd love to know his reaction to the WHO/CSAC/MSAC November 2018 decision that following an evidence review, the ICD-10 G93.3 categories are to be retained in their legacy chapter for ICD-11; and that the SNOMED CT Danish Edition has incorporated the SNOMED CT International Edition change of parent for CFS and its Synonyms terms, placing SCTID: 52702003 | kronisk træthedssyndrom under parents:
Sygdom i organsystem
> Sygdom i nervesystemet
I agree completely.
I always feel so awful with all the focus on ME/CFS, because Fibro deserves focus / research just as much. Hopefully this will bring better things for all patients in Denmark.
First, good to see you.
Second, I imagine there was a lot of red-faced jumping up and down.
At least they've got approved drugs (in the US -- true in Denmark?) However, I just read some really awful things re: when Lyrica was first approved about how FM was a "made up" illness and drug companies were peddling for no reason, just to make more money. They definitely go through a lot of the same flaming hoops we do.
As is common, the Journal of Psychosomatic Research tried to contact him for a rebuttal of my short comment to his article. Thus far, (the published version will only appear in April) he has not taken up the offer.
Great the debate went so well! And that the misleading headline of the article below had no impact. Though with the actual vote still to come let's hope no MPs get swayed between now and then.
I'm guessing the debate was the reason Videnskab.dk decided to publish tody a translation of a month-old Norwegian article about that 4-day course discussed elsewhere on the forum (can't find the thread right now).
The headline just about made me choke on my morning coffee:
Kronisk trætte fik det bedre efter et 4-dages kursus. Hvad betyder resultatet for patienterne?
Translated: Chronically tired felt better after a 4-day course. What does the result mean for patients?
The article is a bit better, fortunately. It outlines many of the problems with the study quite well but still gives too much space to the study authors - in an attempt of journalistic impartiality, no doubt. The problem is a casual reader could well come away with the idea the headline is correct.
Today's Danish article: https://videnskab.dk/krop-sundhed/k...et-4-dages-kursus-hvad-betyder-resultatet-for
The Norwegian original: https://forskning.no/immunforsvaret...yr-resultatet-egentlig-for-de-me-syke/1293066
Jyllands-Posten has now picked up on the 4-day course, too, with a shortened version of the Videnskab.dk article.
Slightly better headline, at least there is a 'maybe' in there.
Norsk studie: Kronisk trætte kan måske have gavn af intensivt kursus
Translated: Norwegian study: chronically fatigued can maybe benefit from intensive course
Yeah that was a doosy. Four days!
IT'S A MIRACLE.
Thanks, @JaimeS I couldn’t remember it all and didn’t want to get it wrong, so I hoped someone would jump in with the rest This forum never disappoints!
eta: translation from Yandex
somatikken. = somatic (i.e. the body) ?
Thank you, JaimeS.
In that same Journal of Psychosomatic Research 97 (2017) 127–130 lecture write-up Fink also wrote:
"To include the BDS/BSD* diagnosis and all the relevant functional somatic syndromes in a separate chapter in the ICD-11 would have been optimal, but the WHO has rejected this option."
Which he had also mentioned at the 2014 Danish Parliament presentations .
*Ed: By "BSD" - Fink means the BSS construct proposed for inclusion in the ICD-11 PHC, a 27 mental disorder only, non mandatory WHO publication that revises the ICD-10 PHC (1996). His Danish colleague, Marianne Rosendal, is a member of the ICD-11 PHC working group, known as the "PCCG" and chaired by Prof, Sir David Goldberg.
Marianne Rosendal is also a member of the update and revision committee for the primary care classification ICPC-2. Since around 2010, Rosendal has been pushing for a BDS-like construct to be included in the ICPC-3, which has been under development for a number of years. I haven't seen a draft of the most recent proposed content for ICPC-3, but I imagine Rosendal is likely still pushing hard for inclusion of a BDS term, or a BDS derivative.
It's like Whack-A-Mole. But this debate is good news and I will be watching the progress of the parliamentary motion with interest.
1 Presentation, Professor Per Fink, March 19, 2014 Danish parliamentary hearing on Functional Disorders. Prof Fink stated that he and his colleagues had tried to get WHO to incorporate a section [in the core ICD-11] for a special group of disorders where BDS could be placed that was located neither in psychiatry nor in general medicine, but had not been successful.
2 Dr Marianne Rosendal (Department of Public Health, Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA (World Organization of Family Doctors) International Classification Committee.
Dr Michael Klinkman is current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development of ICPC-2.
Dr Klinkman is also vice-chair of the ICD-11 PHC "PCCG" working group and represents WONCA.
Separate names with a comma.