News from Finland

Suomen lääketieteellinen ME/CFS-yhdistys ry has posted a document (in Finnish) with self-care advice for POTS and dysautonomia, on their Facebook page. The author is Hanna Markkula, physiotherapist.

Dysautonomia ja POTS - omahoito
ME/CFS:ää, Long Covidia, EDS:ää ja HSD:ää sairastavien hoidon erityispiirteet


(I'm sharing this as information only. I haven't read the document myself, so I don't know if it's good advice or not.)
 
Suomen lääketieteellinen ME/CFS-yhdistys ry (the patient organisation Finnish Medical ME/CFS Association) on Facebook:

"Tutkimusraportti on julkaistu 19.12.2024

”Krooninen väsymysoireyhtymä (ME/CFS) on monimuotoinen pitkäaikaissairaus, jonka oireet voivat rajoittaa sairastuneiden henkilöiden toimintakykyä huomattavasti.

Invalidiliitto toteutti tutkimuksen, jonka tavoitteena oli selvittää kroonista väsymysoireyhtymää (ME/CFS) sairastavien henkilöiden terveydentilaa, toimintakykyä ja arjessa pärjäämistä.

Suomessa ME/CFS:ää sairastavia henkilöitä on arviolta jopa 10 000, mutta heidän tilannettaan ja toimintakykyään ei ole aiemmin tutkittu kattavasti pätevillä itsearviointimenetelmillä. Saatavan tiedon avulla pyritään vaikuttamaan siihen, että ME-CFS:ää sairastavien tarpeet huomioitaisiin yhteiskunnassamme nykyistä paremmin.”

Lue aiheesta lisää Invalidiliiton sivuilta
https://www.invalidiliitto.fi/ajank...s-rajoittaa-merkittavasti-arjen-toimintakykya

Suoraan tutkimusraporttiin pääset alla olevasta linkistä
https://www.invalidiliitto.fi/sites/default/files/2024-12/ME_CFS_raportti.pdf

Rauhallista joulun aikaa kaikille"

Auto-translate said:
The research report has been published 19.12.2024

"Chronic fatigue syndrome (ME/CFS) is a complex long-term illness whose symptoms can severely limit the functional capacity of affected individuals.

The Invalidiliitto [The Finnish Association of People with Physical Disabilities] conducted a study to investigate the health status, functional capacity and coping in everyday life of people with chronic fatigue syndrome (ME/CFS).

It is estimated that there are up to 10,000 people with ME/CFS in Finland, but their condition and functional capacity have not previously been comprehensively studied using valid self-assessment methods. The information provided will help to ensure that the needs of people with ME-CFS are better met in our society."

Read more on the website of the Invalidiliitto
https://www.invalidiliitto.fi/ajank...s-rajoittaa-merkittavasti-arjen-toimintakykya

To access the research report directly, click on the link below
https://www.invalidiliitto.fi/sites/default/files/2024-12/ME_CFS_raportti.pdf

A peaceful Christmas time for all
Click to expand...
 
Didn't read all the 100 pages but checked parts that seemed interesting.

308 people with ME/CFS (G93.3) diagnosis answered the web survey. 85.1% were female. Average age was 44.6 years. 51.6% saw their illness severity as mild. Two out of three reported having financial difficulties. Three out of ten lived alone. 24.4% were able to work (no mention if full time, at least on the abstract).

Worst symptoms reported were unrefreshing sleep and fatigue worsened by small exertion. Other common symptoms were cognitive difficulties, PEM, problems with digestion, and muscle pain. Only 76.9% filled the criteria for PEM on DePaul questionnaire.
 
From the paper, one patient explains how they were diagnosed. Translated by me.

”By private doctor. According to TAYS fatigue workgroup the criteria for diagnosis is fulfilled but diagnosis could not be made because of previously diagnosed depression.
I have complained on the basis that it is unfair to keep referring to old psychiatric diagnosis."

I have similar experience with TAYS (Tampere University Hospital) workgroup. I too were told during examinations that the criteria for (SEID) is fulfilled. But after their workgroup had their own meeting to discuss my case they decided against diagnosing me on the basis of "the patient's sleep disorder could explain the symptoms and thus we're not able to diagnose for ME/CFS". I also noticed that the person who wrote that and possibly influenced the final decision didn't even meet with me once.

A few years ago there was talk that this new TAYS multidisciplinary team evaluation could help people to get diagnosed faster and more reliably but as I see it, the opposite might have happened. When you have a rejected diagnosis from them your chances of getting help from elsewhere also diminishes because TAYS holds so much prestige here.

Back to the paper. On the results for DSQ-SF there's a interesting bit.
"It should be noted that the results could be skewed because option number 3 "most of the time" got left out of the survey. Because of that only options 2 "half of the time" and
option 4 "all the time" were available.

I do like the comments from patients on this paper though! Also the authors seem to recognize weaknesses quite well.
 
@Kalliope
I don't know but this was published by The Finnish Association of People with Physical Disabilities which is I believe the largest in Finland, and they have 143 member associations(according to their website). I think it's quite possible that some mainstream media could be interested in reporting this too.
 
Kalliope said:
Thank you for that summary, @Yan and thank you for sharing the news, @mango
Do you think this will be reported in media in Finland?
Click to expand...
Doesn't seem that any media picked up this story. I got today in the mail the printed magazine from the "Finnish Association of People with Physical Disabilities" or "it-magazine" as it's called and it has a tiny few row long summary of the study, with a link to their website to learn more if interested. Rest of the magazine is filled with pictures of smiling disabled people and their stories how they found joy in life etc. Quite disappointing but not exactly unexpected.
 
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