STM, the Ministry of Social Affairs and health in Finland, has published a draft report on the planned care plan/guidelines for our disease. Only available in Finnish, so far, I believe. http://stm.fi/documents/1271139/7832492/Toiminnallisten+häiriöiden+hoidon+järjestäminen+luonnos+120417.pdf/b94c6a21-dcea-4a76-9e4e-b92d629f353d/Toiminnallisten+häiriöiden+hoidon+järjestäminen+luonnos+120417.pdf.pdf Google Translate, English here. Short summary (in Finnish) here: http://stm.fi/artikkeli/-/asset_pub...hairioiden-hoidon-jarjestamisesta-lausunnolle Google Translate English here: https://translate.google.se/translate?sl=fi&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://stm.fi/artikkeli/-/asset_publisher/suositus-toiminnallisten-hairioiden-hoidon-jarjestamisesta-lausunnolle&edit-text= If I understand this correctly, they were meant to propose a "care plan"/guidelines for ME/CFS, but instead they made it about functional disorders (ME/CFS, POTS, lyme, IBS, PMS, tinnitus, fibromyalgia, pain syndrome, MCS, whiplash etc), based on Fink's model. I believe this is the one for children and adolescents? http://stm.fi/julkaisu?pubid=URN:ISBN:978-952-00-3928-8 There are obviously many hugely problematic aspects to this. Some very similar to those we've already seen in other countries. It's based on Fink's BPS speculative model, not on biomedical evidence or international consensus reports. The head of the guidelines group is Risto Vataja, who seem to have strong ties to the medical insurance side of things, if I'm not mistaken? Psychiatrists/psychologists make up a large part of the group, while there are (as far as I know) no ME/CFS specialists and no patient representatives. Stakeholders aren't able to properly read up on/comment on the details of the model, since the source document they are referring to isn't available online on Fink's website any longer. Deadline for comments on the draft report is 20 May. Please note that my Finnish is very weak, I got most of this info second hand = there may be errors and other mistakes in what I've written above. Does anyone know if EMEA, IiME and/or any other European groups are working on this? What can we do to help? (ETA link to the Google Translate version of the draft report.)
there is this forum for Finnish patients: http://cfs.gehennom.org/foorumi/ "Besides Finnish, posts in English and Swedish are allowed on the forum, as long as they are relevant to the readers (e.g. posts from immigrants living in Finland or about CFS/ME events taking place in nearby countries)." which is on this site: http://cfs.gehennom.org/?inenglish "CFS-verkko was created by 28-year old Finnish journalist, author and medical writer Maija Haavisto, herself a CFS/ME patient since 2000, though living in Amsterdam, the Netherlands since 2010." I think I might have posted this before as I'm having a deja vue moment eta: maybe someone could sign up and ask if there is anything we can do to help
Yes, mango, you are correct. We, as the CFS-Association of Finland, are addressing these problems in our opinion requested by the Ministry. What the response will be, remains to be seen. If someone in IiMER or EMEA could offer support, that would be most warmly welcomed.
I assume Per Fink is part of the international network Norwegian prof. Wyller talks about? Wyller and his research group at Akershus University Hospital have been researching ME for many years. They belong to an international environment that investigates the development of ME after an infection. Wyller believes it is well documented that the disease is a interaction between social, psychological and biological factors. He is quite tired of the fact that someone only relies on one-sided reasoning. From this post (let me know if you want a washed-up translation of the article).
While skimming through the titles of new posts, I misread this title as "Daft report ...". Maybe that is actually more appropriate?
Response from Invest in ME, on behalf of the European ME Alliance, https://api.hankeikkuna.fi/asiakirj...8db6-b636900a93e5/LAUSUNTO_20180521063047.pdf
" Finland must not use UK and NHS as an example. The situation in UK for people with ME is atrocious with largescale prejudice based on poor research (e.g. PACE trial) and misinformation about the disease being propagated by corrupted media sources influenced by a cabal of psychiatrists who have long been in control of research funding and government health departments."
