General thread on functional disorders in Denmark

[Kalliope]

The Danish news journal on health and politics, Sundhedspolitisk Tidsskrift, writes today that 849 ME-patients and carers have signed a protest letter to the Danish Health Authority.

The Danish Health Authority invited the Patient Association for Functional Disorders to participate as patient representatives in the work on developing new guidelines for ME/CFS. The letter expresses worry that this may lead the work on to a different path than of its original mandate and of international research.

Leader of the Patient Association for Functional Disorders Morten Madsen says that the diagnosis functional disorders/general tiredness is given nine times as often as the ME diagnosis. He acknowledges that many patients have had bad experiences on treatment centres for functional disorders, but that also some patients have been helped and those voices need to be heard as well.

The Danish Health Authority don't address the journal's questions for the article but say they are assessing the field and are speaking to a lot of parties, professionals and patients in order to include as many nuances as possible.

The article also mentions DecodeME.

ME-patienter i opråb: Protest mod Sundhedsstyrelsens samarbejde med forening for funktionelle lidelser

google translation: ME patients in protest: Protest against the Danish Health Authority's collaboration with the Association for functional disorders

(Edited for clarity)

 

[Utsikt]

Apparently, you can start any kind of organisation, claim that your concept applies to a condition based on absolutely no evidence at all, and get invited to work on guidelines related to said condition. What a farce.

Maybe we should start the Association for Opinions on Everything and see if we get invited as well.

 

[Maat]

The Danish news journal on health and politics, Sundhedspolitisk Tidsskrift, writes today that 849 ME-patients and carers have signed a protest letter to the Danish Health Authority.

The Danish Health Authority invited the Patient Association for Functional Disorders to participate as patient representatives in the work on developing new guidelines for ME/CFS. The letter expresses worry that this may lead the work on to a different path than of its original mandate and of international research.

Leader of the Patient Association for Functional Disorders Morten Madsen says that the diagnosis functional disorders/general tiredness is given nine times as often as the ME diagnosis. He acknowledges that many patients have had bad experiences on treatment centres for functional disorders, but that also some patients have been helped and those voices need to be heard as well.

The Danish Health Authority don't address the journal's questions for the article but say they are assessing the field and are speaking to a lot of parties, professionals and patients in order to include as many nuances as possible.

The article also mentions DecodeME.

ME-patienter i opråb: Protest mod Sundhedsstyrelsens samarbejde med forening for funktionelle lidelser

google translation: ME patients in protest: Protest against the Danish Health Authority's collaboration with the Association for functional disorders

(Edited for clarity)

Looks like mirror engagement with the DHSC ME/CFS Final Delivery Plan in particular, a la Per Fink. From the article:

As part of the politically determined knowledge gathering, the Danish Health Authority launched two reports, which were completed in the spring. The report from Implement Consulting Group – which has mapped experiences with organization, assessment and treatment in Denmark and five other countries – shows that Denmark is the only country studied where ME is systematically classified as a functional disorder. Diagnostic codes such as G93.3 (postviral fatigue syndrome) are only rarely used in Denmark. Instead, terms such as “functional disorder, general/fatigue” are used.

Haven't the capacity to read the reports, but if google translate is accurate and the article is, then:

• NICE Guideline ng206 29 October 2021 (guideline was the first to include severe and very severe ME/CFS)

The 'Anomalies' paper per Fink was a signatory.​

https://www.qmul.ac.uk/wiph/media/t...alth-wiph/documents/jnnp-2022-330463.full.pdf​

​

the response to 'anomalies' paper here https://www.s4me.info/threads/anoma...ine-for-cfs-me-2023-white-et-al.34097/page-32​

• Public Consultation of the UK My Reality: Interim Delivery Plan opened September and closed at the beginning of October 2023.. From the article:

The meeting at Islands Brygge took place as part of the Danish Health Authority's work on new national guidelines for ME/CFS. It was preceded by an evidence review, which Minister of Health Sophie Løhde promised at an open consultation in November 2023, when she was concerned about whether the most severely affected patients with chronic fatigue receive adequate treatment in Denmark.

• As part of the educational materials implementation under the Final Delivery Plan some FND did creep in, in Module 2 I think it was. Can't find link to eLearning at the moment.

It also updated it's online page for ME/CFS 28 May 2024 (my underline emphasis) https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ Note specifically the title in the url.​

ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. The cause of ME/CFS is unknown.

ME/CFS can affect anyone, including children.

Symptoms of ME/CFS​

The 4 main symptoms of ME/CFS are:

• feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
• sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
• problems with thinking, concentration and memory (brain fog)
• symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM)

Click to expand...

• Follows narrative of Oslo Chronic Fatigue on 'chronic fatigue' which is not ME/CFS and happy patient experiences https://www.oslonetwork.no/ Sharpe and Chalder also signatories to 'Anomalies' paper. From the article:

"We fully acknowledge that many patients have had bad experiences (at the centers for functional disorders, ed.). But we also experience patients who have received great help. Those voices should also have a place," writes PFFL.

• Reommendation in UK final delivery plan that severe ME/CFS be treated in Long Term conditions clinics (re-named and formerly CFS/ME clinics from around 2008. These clinics now treat all illness with a 'chronic fatigue' element such as cancer fatigue.
• By the logic employed below, why hasn't the Danish Health Minister also invited cancer patients or cardiac patients with 'chronic fatigue' to contribute to the work on an ME/CFS Guideline including severe and very severe patients?

He and the association refer to the Danish National Board of Health's own assessment, which shows that the diagnosis of functional disorder general/fatigue is made nine times more often than the ME diagnosis. PFFL relies on the impartial evidence assessment (DEFACTUM 2024), which concludes that there are neither valid biomarkers nor reliable clinical tests that can distinguish ME/CFS from other similar diseases.

What could possibly go wrong - except the overturning of a government initiative to remedy the healthcare inequalities experienced by Danish ME/CFS patients.