If you're on Instagram I'd like to recommend SerIkkeSykUt (Don't Look Ill). It is by an ME patient who wants to challenge prejudice towards chronic illness. I like her friendly and humorous style. She says if she'd been given a krone (Norwegian valuta) for each time she's heard: you don't look ill, she'd be able to have champagne for breakfast every day, thus the name Most of this is in Norwegian, but here's one in English (and with sound)
A young ME patient has shared her story on a radio programme. This was humorous, relatable but also very moving. It lasts about ten minutes and the language is Norwegian. She talks about how she got ill in 2011 after a flu. How people around her recommended alternative treatments when the doctors couldn't help and how she tried everything. She explains how it is living with ME and its symptoms. According to medical tests she is healthy, but still she's spent two years in different institutions with severe ME. On all the institutions she had to teach her carers and she says: imagine being on an operation table, awake, and having to give instructions to a poor surgeon on how to do this. In the end her brother rented an apartment for her and moved in with her. Since then she has improved enough to occasionally take a walk in a park, and she has the help she needs. She talks about how her friends have helped her with visiting, bringing food, helping feed her, carried her to the bathroom, sent letters on her behalf, dried tears and made her laugh.
A Norwegian national service for all kinds of family, carers and next-of-kind has interviewed the parents of a child with ME. Their girl was only five years old when she got diagnosed with ME. Her parents talk about the disease and their meeting with health care personell. Once a doctor didn't call them back, because the doctor had no answers to give. But that's no solution according to the parents. Some doctors have been condescending and they were told to push their daughter back to full time in kindergarten. Luckily they refused, and later they received confirmation from a doctor at the children's ward at the nearest university hospital that they did the right thing. Their daughter is now going to school, and has her own resting room and taxi that takes her to school. The secret lies in saving energy and prioritise strictly. The parents work half-time in order to care for her. They also have two other children, who often has to play in the basement of consideration to their sister, but their parents tries to take them out on events just for them as often as they can. This was a very sympathetic article and I hope it gets read by many people. Pårørendesenteret: Beate og Arild sin åtteåring har ME google translation: Beate and Arild's eight-year-old has ME
Here’s a very sparse info page about the ME/CFS evidence review SBU is currently working on in Sweden. It’s part of Socialstyrelsen’s (The National Board of Health and Welfare) project to develop guidelines. https://www.sbu.se/sv/pagaende-projekt/me--myalgic-encephalomyelitis/ According to this page, there are 3 experts involved. One of them is a knowledgeable biomed ME/CFS doctor and researcher (One of the best, yay! Works at Stora Sköndal ME/CFS Center); one is a doctor focusing on insurance & social medicine as well as gender aspects in mental illness; and the third one is a professor emerita of psychiatry focusing on burnout (which in Sweden is acknowledged as a separate diagnosis, different from ME/CFS). Unsurprisingly, no patient involvement. SBU = Swedish Agency for Health Technology Assessment and Assessment of Social Services https://www.sbu.se/en/ ETA: Expected publication is "winter 2019".
Excellent question. I don't know who. I don't know why, on what basis/merit, either. Trying to find out. Trying to compare with other expert groups from other similar evidence report projects as well, to find out if this is common.
Extrastiftelsen is a big foundation for volunteer work. On Oct. 24th 09.00 - 12.15 they invite to a seminar about user involvement in priority within research. As many of you remember, the Research Council of Norway invited among others ME patients to have their say in how an allocation on 30 mill NOK to ME research should be further distributed. This is how the Research Council described their project: In this call for proposals the Research Council is testing out an approach to user-identified research inspired by funding instruments employed by the UK’s National Institute for Health Research. The users of the research are able to influence the choice of research topics, both through an open invitation to propose research questions and through participation in broad-based user panels that identify knowledge needs and assist in the prioritisation of projects. In the context of this call, the term “users” refers to patients, treatment providers and the public at large. The process has been educational and answered to specific needs for research formulated by patients and carers, the Council concluded after the project had finished. The result were 4 fully founded research projects among 19 applications. A success story, had it not been that one of the applications that were turned down was prof. Wyller's study on Lightning Process as treatment for ME. This resulted in complaints and protests from among others LP-coah Live Landmark. Even though the Research Council joined the debate and tried to explain that the Council were the ones who made the final decisions, together with an expert panel, not ME patients, an impression was given that ME patients (and our convictions) hindered important research to take place. Scandalous! Prof. Gundersen has been mentioned here before. A couple of years ago he wrote an article in the newspaper Aftenposten warning about ME patients complaints about the PACE trial and patients having a say in academic debate. The response he got was massive with over a hundred comments arguing against him. He's been appalled by ME patients ever since and was very critical of the Research Council letting ME patients have a say. Prof. Gundersen is going to give a talk at this upcoming seminar titled: What problems does user involvement in priority within research give? Among other speakers are representatives from Kavlifondets healthcare research programme (who has supported Fluge/Mella's research with substantial amounts), the Research Council of Norway, one of the user representatives in the Research Council's ME-programme, Ministry for health and care service and Oslo University College. The compère is Nina Kristiansen, editor of Forskningno (a news site about research that has debated both ME and PACE) and also the editor of the science department of Aftenposten where prof. Gundersen published his article defending PACE (he does not write for them any more). The event is fully booked, but will be streamed live and I think this might be interesting to follow. Here is the program Here is the Facebook event (where I assume the streaming will be) (edited for clarity)
A nuanced blogpost from a PwME that tried LP 10 years ago and got a lot better (but not recovered) that is worth a read. I have to admit my reflexes are so stuck in anti LP mode that it was hard to not push it away immediately, but I read the whole thing and I'm glad I did. In Norwegian: https://beatesrasteplass.wordpress....sk-helsevesen-hypnose-humbug-og-derren-brown/ Google Translate: https://translate.google.no/translate?sl=no&tl=en&js=y&prev=_t&hl=no&ie=UTF-8&u=https://beatesrasteplass.wordpress.com/2018/10/19/lightning-process-norsk-helsevesen-hypnose-humbug-og-derren-brown/&edit-text=&act=url The Google translation is really bad, unfortunately. To summarize she improved a lot with LP (but didn't recover)and thinks it should be available as an alternative treatment, but still find their methods questionable because they're not honest about what they do and how and because they push a patient blaming narrative. She also thinks it's horrifying that national health institutions promote something that is not medical advice and can even make some patients much worse. ETA: I'm not sure I agree that LP should be allowed in any form, but I do appreciate getting someone's take on it who benefitted but can still recognize the issues.
The Norwegian ME Association with official, good and important inputs for the state budget 2019. 1. Continue the support to the research team at Haukeland university hospital 2. Establish ambulant services for housebound ME patients 3. Earmark allocations for research into clinical treatments of ME patients ME-foreningens innspill til Statsbudsjettet 2018 google translation: The Norwegian ME Association's input for the state budget 2019
Svenska Dagbladet, one of Sweden's biggest newspapers has an article (paywalled) about an ME-patient who had to move in with her grown up son because she is refused social security due to her diagnosis. There are quite a few comments and a debate about ME (neurological condition vs. psychosomatic?) in the Facebook post about the article.
Here's an article about Cochrane's review on GET. Unfortunately it repeats what Reuters said, even though it also says that Cochrane has received extensive feedback about the review. In the end, the article mentions an old misunderstanding about the Swedish ME association RME trying to stop a study on ACT. https://www.dagensmedicin.se/artiklar/2018/10/22/cochrane-drar-tillbaka-me-oversikt/
I followed most of the streaming. To my surprise one of the user representatives for The Norwegian Research Council's project on ME research was an ME patient who claims to have recovered by graded exercise therapy and Lightning Process. She spoke at today's seminar and was the only (ex)patient among the speakers, but was clear that LP is a controversial subject and talked mainly about her thoughts and experiences from having participated in the Council's user committee. I was a bit nervous on beforehand of prof. Gundersen's talk about problematic aspects with research and user involvement, but he wasn't as hard hitting as he sometimes can be. Otherwise it was mainly about the process of user involvement in general, and ME wasn't really that much touched upon on itself other than described as a complex subject where people have strong opinions. The first talk was in English from an advisor at James Lind Alliance. The rest was in Norwegian. Here is the whole event already on YouTube, and here is link to the program. https://www.youtube.com/watch?v=Kdc6bippQjs
Oh, I forgot, thank you for the summary @Kalliope First reaction a little bit shocked by choice of user representative. But that might actually be a clever move, and useful for patients advocates. Since the argument from the local bps-crowd was that patients representatives had bias against LP, and stopped Wyllers research proposal on LP on that grounds. They really can't argue that now.
Maybe he'd prepared a hard-hitting talk about patients rejecting evidence, and misguided criticism of PACE that fails to recognise that Cochrane, the most respected brand in Evidence-Based Medicine, has concluded that.... oh dear.
He did that two days ago, reported both on Facebook and Twitter, how awful it was that even the Cochrane Institute now caved into pressure from activists. That there was no bright future for Science. I commented a lot on his Facebook, answering both him and others calmly, patient, and with lot of facts. Quite negative people that I met in a postive way. I wonder if it was worth the work, but now I am glad I did, maybe it made some think that ME patients were not that bad people some want them to be.
That's a good point. And it was stated clearly that it was the quality of the applications that counted in the end, not patient's opinions. I was trying to watch today's seminar from an objective point of view, and I think all in all this was a good seminar and left the impression that the project from the research Council on user involvement in ME research has been followed through in an orderly and thorough way.
I only had a peek at that debate. Did some of them claim that Larun didn't even have a chance to reply to the criticism before the decision of a temporary withdrawal was made?
Yes some did, but it seemed that they didn’t know who and what Cochrane is, they thought it was an ordinary scientific debate between Larun and others. And that’s kind of not the case.
