I assume that is the standardised plan of care which has been promised for several years to be developed for ME patients. But they've expanded it to be a plan for fatigue-conditions in general, so I fear it will end up with a biopsychosocial approach and be more suited for other conditions than ME.
I have no trust in St. Olavs on this, and I wish it was a project at Haukeland instead. My experiences with St. Olavs hospital as a ME patient has been awful. I got diagnosed there, once as a teen, and then had to be diagnosed again after 18, because apparently you can't keep the diagnosis once you turn 18? (so bizarre). The first time I was diagnosed was 2010 and the second time was 2015 and nothing improved in those years. I found the experience traumatic. They were so dismissive and had no knowledge or understanding. After my diagnosis the second time they sent a letter to my GP saying I need GET, despite the fact that I already was working out a lot and was really fit at the time. When I got diagnosed the first time the doctors told me I would get better because I was young, showed me the staircase illustration of how I would gradually improve, and told me to continue with school and daily swim practice as normal until I was completely recovered. That was the only information I got about my illness from this "expert team". They set me up for going from mild to severe, and my parents to be unknowingly abusive as they thought forcing me to school was what I needed to get better. The team had no clue about anything, no advice that would help or even be applicable to real life, but still they were pretending to be experts that should tell this misbehaving teenger how to live their life. I found it so annoying. Like I was being punished and disciplined for being ill and not performing as they wanted me to. For instance they tried to make a really ridgid time schedule for me, with elements like 'every day at 17:00 you have to spend one hour with friends'. Completely out of touch with my life, my health and my wishes, and it felt like they were trying to take away my autonomy. When I read my medical records from that time I found that they had mostly focused on how sad I had been during the interviews, and how much I had cried when I explained that I often was too weak to open milk cartons, as if the fact that I cry was the most important thing they learned.
I had to laugh when I read in the ministers reply: "You must be met with respect and understanding from the health care service" Yes, we know that we should be met with respect and understanding, but we aren't. It's like they are admitting that we are abused, saying it should be better, and doing nothing about it.
For me it was the "you are not left to fend for yourself" line. That is a whole different world than the one I'm living in.
I am so sorry to read what St. Olavs hospital put you through, @rainy I completely understand why you don't trust them to be able to make a proper plan of care for ME patients. I'm worried as well about this. Once again there's been a rather positive initiative from politicians to help the patient group, but the professionals manage to mess it up by not familiarising themselves with the literature of the field nor listen to the patients.
I'm sorry to hear about your experience with the health system @rainy . It very much sounds like they were fixated on things that interested them and your stay was all about verifying their view and meeting their needs. This is exactly the problem in ME care to date. Many institutional therapists / clinicians in ME don't see a person. They see their treatment plan. Implementing the program is what motivates them. The idea of constant feedback and assessment from the patient is too much bother / work. They want to feel positive about what they do to you -- feedback would spoil that. You deserved better. And you have escaped their grasp.
Information from Region Västerbotten about referrals to the soon to be opened ME specialist clinic: ME-mottagning: Remittentinformation https://www.regionvasterbotten.se/f...riktlinjer/remittentinformation/me-mottagning
First non-opinion piece on the new NICE guidelines, not surprisingly the competence center "don't understand/are wondering why the new guidelines downplay the importance of individualized physical activity". Storbritannia går bort fra treningsbehandling for ME The UK is moving away from training treatment for ME (google translate) The point that we don't have "good knowledge" on the positive effect of physical activity when it comes to pwME was clearly missed Opinion piece by Ola Didrik Saugstad and Rolf Rønning. For me there were many good point in this piece, but they were covering so much ground I think some parts will be difficult to grasp for those without prior knowledge. ME-pasientene fikk rett! ME patients were right! Opinion piece by Nina Steinkopf urging our health minister to take action in light of the new NICE guidelines Ta grep raskt, helseminister Ingvild Kjerkol! Take action quickly, Minister of Health Ingvild Kjerkol!
This was disappointing though: "The ME clinic does not offer treatment or rehabilitation. After investigation and referral response, the patient can be followed up in primary care"
The program for the other conference is now available. This one is open for everyone, whilst the research conference November 22-23 is only for researchers, health care personnel and student. Both are organised by the Norwegian ME Association and takes place in Oslo. On their facebook page they say that the conference will not be streamed, but that some talks might be shared after the conference is over. Program translated to English by me. A survey among ME patients in Europe: Does Norway stand out? Assisting General Secretary Trude Schei and board member Arild Angelsen, The Norwegian ME Association Harmful relations between health services and ME patients Researcher Anne Kielland, Fafo Disease mechanisms in ME/CFS - a model senior doctor Øystein Fluge, Haukeland University Hospital Short update from ME-center in Uppsala - what can we learn from post-covid in relation to ME? Professor Jonas Bergquist, Uppala University Panel debate Led by journalist and author Jørgen Jelstad More information and tickets here
I have written about the lack of research ethics education in Norway before, but now there's yet another report that criticises our universities for not having a system to make sure employees are educated about research ethics, and also for not having good systems in place to discover/handle/report potential ethical breaches. Study of research ethics in the higher education sector in Norway (Norwegian webpage)
News article about the opening of the new ME clinic in Umeå, Sweden. The patients will be sent back to primary care after receiving their diagnosis. The clinic will not be offering any kind of treatments, and they will not be doing any home visits to the severely ill. Både glädje och oro vid smygstarten för nya mottagningen för ME-sjuka https://www.folkbladet.nu/2021-11-1...smygstarten-for-nya-mottagningen-for-me-sjuka Many thanks to Malin Carlbom for always telling it like it is. I'm super grateful for all your invaluable advocacy work over the years
The Norwegian Public Broadcaster, NRK, writes about BII - Breast Implant Illness. The diagnosis is not recognised by WHO. Symptoms can be fatigue, loss of memory, rash, brain fog and joint pain. Several of the women with BII that NRK had been in touch with, had been diagnosed with ME or fibromyalgia. I've never heard of it before. What do you think? Could BII have overlapping symptoms with ME, or could implants be a trigger for ME and/or fibromyalgia? Silikonsyke google translation: silicon disease
A big article about ME in the Norwegian local newspaper Stavanger Aftenblad. It is paywalled, so here's a summary: It features Sissel Sunde, ME sufferer and patient advocate who developed ME after a Dengue infection six years ago. She's tried 22 different treatments without getting better, and has spent over 2 000 days indoors. Professor Karl Johan Tronstad is interviewed and talks briefly about his research work. He says that they've analysed 1700 substances in the blood in ME patients and found changed levels in over 300 of them. - "We have seen patterns that have not been discovered before". "We need to understand what ME is in order to provide correct treatment for the patients. We believe and hope for a lot of progress in this field going forward". Leader of The Norwegian ME Association, Rogaland, Åse Marie Lønning says that the patient group is heterogeneous, and it's important to find a biomarker that can distinguish between ME and other patient groups. One of the treatments Sissel Sunde has tried is the 4-day intervention to psychiatrist Bjarte Stubhaug. He recommended routines for sleep and meals, walks and mindfulness. He said that ME is the same as having a bad period and that she wasn't sick, but vulnerable to stress. Bjarte Stubhaug is interviewed an says he doesn't recognise what's being said about his treatment. He says he challenges people's thoughts and behaviour about the illness and talk about vulnerability, which can explain why some people get sick and have a different response to for instance mononucleosis and corona. He says that no one are invited for any "ME treatment" but to a treatment programme for coping with stress, fatigue and health problems. A former patient who recovered from ME by Stubhaug's treatment says she had been ill for 17 years but is still healthy today four years after the treatment. Leader of the Lightning Process Association, Kristin Blaker, says that LP is no treatment for any illnesses, but a self help course for motivated people who want to learn about the interaction between mind and body. Recovery Norge is mentioned, but the newspaper was not able to get hold of anyone from that organisation. Professor Silje Reme who did a qualitative study on LP believes the scepticism towards LP could be due to the course being perceived as a form of alternative treatment. She has been an observer on an LP course and doesn't share that impression. Towards the end the NICE guideline is mentioned and that ME is now defined as a complex, chronic medical condition. It also says that GET and CBT is abandoned and that LP is warned against. The article mentions some of the protest to the guidelines from health care workers and researchers. https://www.aftenbladet.no/lokalt/i...andlinger-de-siste-aarene-men-blir-ikke-frisk
They were talking about ME and exhaustion disorder/burnout on the Swedish morning tv-show Malou Efter Tio today. With pwME Niklas, his partner Vanja Wikström who works as an influencer, and prof Jonas Bergquist. (I haven't been able to watch it myself.) Video, 18 minutes, in Swedish: ”Viktigaste personen i mitt liv” – se tårfyllda hälsningen från Niklas till Vanja https://www.tv4play.se/program/malou-efter-tio/viktigaste-personen-i-mitt-liv-se-tårfyllda-hälsningen-från-niklas-till-vanja/13730031 Video, 3 minutes, in Swedish: Vanjas sambo Niklas har ME: ”Han har fått hela sitt liv kidnappat” https://www.tv4.se/artikel/LlxA1Pqn...s-har-me-han-har-fatt-hela-sitt-liv-kidnappat Vanja Wikström has blogged about it here: Känslosamt hos Malou i dag https://vanjawikstrom.motherhood.se/me/kanslosamt-hos-malou-i-dag/ Here's another article about Vanja, published a couple of weeks ago: Vanja Wikström om alkoholproblemen, ME och vardagsglädje https://www.wellness.se/halsa/a/wOvBBL/vanja-wikstrom-om-alkoholproblemen-me-och-vardagsgladje Google Translate, English ("Vanja Wikström on alcohol problems, ME and everyday joy") And another article published a month ago: Vanja Wikström kraschade när sambon fick ME: ”Kroppen skrek efter hjälp” https://www.baaam.se/halsa/vanja-wikstrom-om-kraschen-och-sambons-diagnos/7929342 Google Translate, English ('Vanja Wikström crashed when her partner got ME: "The body screamed for help"') Vanja Wikström posted on Instagram (she has more than 35 000 followers):
A bit more info about the petition Vanja Wikström mentioned. "For better ME healthcare", by Björn Eklund (who has recovered from ME, author of the book "From bedbound to marathon") För bättre ME-vård https://www.skrivunder.com/for_battre_me-vard (I have mixed feelings about the petition and Eklund's overall message, that's why I haven't signed it or promoted it. I don't believe demanding national clinical guidelines for ME or another government inquiry/report is helpful at this point in time. Also, patient safety and scientifically sound, accurate facts are very important to me, and I have a strong dislike for when personal anecdotes are overhyped. )
A letter from #MEvårdsaknas (ME-healthcare is missing) sent to those in charge of the new ME clinic in Västerbotten: With help from Google Translate: https://mevardsaknas-wordpress-com....r_sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=nui
