Kalliope
Senior Member (Voting Rights)
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)
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)
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