Discussion in 'Advocacy Action Alerts' started by andypants, Feb 3, 2019.
@Jonathan Edwards good opportunity to weigh in on the quality of the RCTs behind BPS treatments.
PS: @Chris Ponting
Expert comments are worth much more than patient comments.
This would be an opportunity for Science for ME to weigh in.
The PACE briefing perhaps?
I doubt that Chris Ponting follows the forum closely - you might want to email him (and it was a good idea to bring this to his attention).
For those of you like me who've managed to set their computers so tweets don't show up properly here's a copy & paste for easier reading - because there's something truly rotten going on in the state of Denmark.
I see S4ME has already tweeted the link to the PACE briefing document.
If you want to tell the Danish Health Authority (SST) what you think about their stance, the contact details are here (in English): https://www.sst.dk/en/about-us/contact
Good article in a big newspaper in Denmark about the ME debate on Tuesday with some general information about the situation for ME patients in the country.
Politiken: 14 000 danskere lider av kronisk træthedssyndrom: "Man trenger bare til en håndsrækning"
google translation: 14 000 Danes suffer from chronic fatigue syndrome: "One just needs a helping hand"
The victims struggle to get the mysterious disease recognized, where the most sick are in need of care in their own home without help from the municipality or doctors. Tuesday, the health politicians at Christiansborg discuss whether Denmark is doing well enough.
They struggle to recognize that they are not 'just' mentally ill. That they have a physical illness that gives them unbearable pain, constant fatigue, brainwashing, hypersensitive senses and disturbed sleep that does not refresh.
Google can be entertaining! Had to read the article after that.
For the record, the original article uses the Danish word hjernetåge = brain fog. So we won't need to rewrite the diagnostic guidelines with a new and rather disturbing symptom.
But good to see a major national paper covering this, and in their Sunday edition, too. Usually the only one covering the topic seems to be the local Esbjerg paper.
Pretty good article overall, too, even if I do always cringe at the "not 'just' a mental illness" bit. And their spell check got stumped on 'mualgisk encephalomyelitis'.
The newspaper Politiken has published two other articles now on ME. Right now on their front page ME is featured with three articles, all written by the same journalist. One of the article is behind paywall.
Here's the other article that's open, it tells the story of the family in the first article, who is caring for a very severe ME patient.
Politiken: 29-årige Marie Louise lider av kronisk træthedssyndrom og ligger på tredje år i et mørkt rum
google translation: On the their year, Marie Louise is in a dark room
Weird. That one is behind the paywall for me. Maybe they put it there after realising how popular it is - currently number 1 of the most-read list.
#MEAction: Denmark parliament holds query on ME
In Denmark, the current official recommended treatment for ME is graded exercise therapy, based on the deconditioning hypotheses of illness. Treatment guidelines for ME are written in the Physical Exercise as Treatment handbook*, which states that GET is not harmful for ME patients. This guideline is what all doctors are referred to, and is the basis of all ME treatment at the Functional Somatic Syndromes clinics, where ME is housed.
Altinget is a news site on Danish politics. They have an article about today's query
Altinget: DF og ME-foreningen: ME-patienter skal anerkendes som i vores nabolande
Google translation: DF and ME Association: ME patients must be recognised as in our neighbouring countries
... while in Denmark the establishment of five regional centers for functional disorders has started. At these centers many different diagnoses are mixed under one roof, and here one is not specialized in the treatment of ME. Here you use treatment methods that you have ignored in the countries with which we normally compare ourselves.
This includes cognitive therapy, Cognitive Behavioral Therapy (CBT), and physical rehabilitation, Graded Exercise Therapy (GET), of which especially physical rehabilitation has proved to be deeply problematic, as many ME patients actually experience a prolonged and severe deterioration in their disease which in some cases is permanent. The studies underlying the recommendation of CBT and GET have been severely criticized in international disciplines.
The Cochrane Review , which recommends the use of CBT and GET, is under control as the quality of the evidence is under severe criticism and in the UK, the recommendations for the treatment of ME are being updated.
It has come to such an extent that in January 2019, the British House of Commons decided to stop treatment as it "supports the suspension of Graded Exercise Therapy and Cognitive Behavioral Therapy" as a treatment method.
Quite good article from Altinget highlighting the truly horrible situation in Denmark. They are in desperate need of great changes.
The circumstances in the other Scandinavnian countries are somewhat better, but on many things just marginally. These references to centers that take care of and treat patients in a adequate way are very over exaggerated claims, at least in Norway. My impression is they are a litte better of in Sweden clinic-wise.
Propatienter is a Danish news site for patients and their families.
They have an article about today's debate where among others psychiatrist Per Fink is interviewed. Many of you will remember Per Fink from Unrest where he sectioned severe ME patient Karina Hansen. He is a leader of the department for Functional Disorders at Aarhus University and has participated in making the national treatment recommendations for ME.
Propatienter: 29-årig kvinde har ligget i to år i mørkt rum - debatt i Folketinget i dag
google translation: 29-year old woman has been lying a dark room for two years - debate in the Parliament today
"I don't care how we name the illness. But if you look at international research, you can see that when the patients are treated on the basis of a holistic model, where you look at both physical, psychological, social and other factors, they can get better. Some recover, ”says Per Fink.
Liselott Blixt and the ME Association believe that the health service must listen to a research review of over 9,000 studies, made by the recognized American Institute of Medicine. Here, the authors conclude that ME is a physical illness.
"The authors behind the report start by writing that they will look at the research that indicates that ME is a physical disorder. Then it is clear that this is what they find. In short, the report is poorly made, ”says Per Fink and continues:
“Exercise and therapy as treatment works on this patient group. A large Cochrane review (a research review by a recognized research institute, ed.) has recently established that. But there is still much we do not know, so it is important that we continue to research both causes and treatment. "
Might be worth pointing out that the IOM report has been accepted by major health institutions such as the CDC (who changed their website information) and the NIH (who more than doubled their funding on ME/CFS) while the Cochrane review Fink cites has been called "substantially out of date and in need of updating" by Cochrane and is currently being revised.
The Cochrane review is such a stumbling block. The delay and the begrudging half-hearted measures taken by Cochrane are a disgrace and enable people like Fink. I find it hard to believe that he doesn't know he is being disingenuous.
Does anyone know what time the debate is?
Will it be televised?
Can't see it here
When you have to change the meaning of words to make your argument...
I guess that's fine since they also have to change the meaning of evidence and science to push their nonsense.
The IOM report done by people who stated they were skeptical of the evidence. Fink's argument is frankly pathetic. This man is not a serious professional, he is a disgrace to his profession.
The fact that the Cochrane review is still being cited as the cornerstone of evidence should be said out loud. While they drag their feet, bad advice is still influencing policy and research around the world. It's reckless to allow it to remain published while its flawed conclusions are still being milked to the maximum extent by ideologues. Cochrane's position that they are not responsible for how their recommendations are used is completely irresponsible.
If I've understood everything correct, all political parties agreed to this motion which will formally be voted for later in the week.
(hastily translated and my bolding)
Suggestion for motion:
The Parliament takes note of:
- that the effort for patients with ME-fatigue syndrome/CFS (G93.3) is inadequate. The patients experience stigmatisation and doesn't get relevant offers of assessment and treatment.
- that the existing treatment of ME-patients is far from enough, and that there will be taken initiative to the establishment for specialised treatments of ME. It should happen in an interdisciplinary setup with all relevant specialities and should be anchored organisationally in the somatic medicine.
- That the Danish Health Authority updates all relevant special guidelines across the whole course of the illness ME to secure that ME/CFS (G93.3) is described in all relevant guidelines.
- That the Danish Health Authority recognise and recommends the usage of WHO's diagnostic classification system ICD10 and ICD11, where ME (G 93,3, ICD10 and 8E49 in ICDII) is included.
- That the Danish Health Authority and the Danish Health Data Authority with the new code practice differ ME/CFS from the umbrella term "functional disorders".
- That knowledge from other countries is collected and to start treatments for ME/CFS
Congratulations to all our Danish friends who had a very successful ME debate today!
Separate names with a comma.