@mango On a lighter note: The parents of severely ill Marie Louise, Vibeke and Esben, are finalists in Denmark's Patient Award in the category Firebrand, for their ME activism. Public voting open until 31 May. I voted from outside Denmark and it seems my vote was counted. Vibeke and Esben's entry showed top left on the voting page for me (but check their names and the word ME-Foreningen feature in the description, in case the site presents the options randomly). If you wish to vote, first select "Stem på" and then select the bigger button "Stem". Google-translated entry from the voting page: ETA: Link: http://sundhedsparlamentet.dk/afstemninger.php?2018 (don't know why the link says 2018 when vote is in 2019) Note to self: stay off computer when crashed as likely to forget something important, like a link...
Exactly. This letter to members was sent after some blogposts very thoroughly described the problems with this study (https://translate.google.se/translate?sl=sv&tl=en&u=https://pacegranskaren.wordpress.com/2019/02/28/metodologiska-och-etiska-problem-i-en-svensk-beteendestudie-av-me-sjuka-del-5-sammanfattning/) The board of RME are aware of these blog posts but they apparently didn't like people discussing this study and sent the letter partly as a response to it. We don't know exactly why this is happening but it's like all the things that the ME community has learned from the BPS clique are suddenly gone. Like that ethical approval doesn't tell us anything about safety or methodological quality or that it's really important to not participate in studies with a study design that makes your alarm bells go off loudly.
Thanks @Ravn for the instructions it was ieasy to vote and they didn’t ask for email address ETA maybe a thread of its own to highlight to everyone they can help by voting??
It definitely means that those in charge have no understanding of ME/CFS or the BPS model of ME/CFS. What has happened recently though is that the BPS model has changed a lot. Especially in Scandinavia... Or well.. It has changed outwardly, inside it is still rotten to its core. CBT or GET are no longer ''cures'', and sometimes they are not even ''treatments''. In the case of CBT it is sold simply a way to help patients deal with psychological problems that they might have as a consequence of their ME/CFS. In the case of GET, it isn't really graded exercise anymore. It is simply about making sure that patients who have enough energy, use said energy to avoid becoming decondtioned. Of course the problem is... Why then.. Is the PACE trial still used as evidence as treatment for both? Why still use the Cochrane reviews, when the ''new'' CBT / GET isn't anything like that used in studies used to cite the efficiency of both treatments? And why are the treatments still de facto exactly the same? It's because those advocating for BPS like Fink and other Scandinavians are lying. They lie constantly. They know the treatment are still exactly the same, but they have managed to dress up the decaying corpse of false illness belief. Which has sadly been enough to convince sufficient people. It's also one of the crazy things about the BPS trail of thought that they have admitted to the importance of lying. ''People hate being told they have a mental illness, so instead we have to sugar coat it'' (This isn't an exact quote, but many of us have come across this sort of paternalistic approach to ME/CFS before). Now they seem to no longer feel like it is enough to lie to patients. They must also lie to policy makers, politicians and even people working in health-care. For the greater good! This is why I always say that someone like Fink is infinitely more dangerous than someone like Chalder. Because at least Chalder is somewhat honest. Whereas Fink is a gobbledygook chameleon. I suspect that this sort of BPS approach to ME/CFS is going to survive for long after a bio-marker has been found. Sadly.
I don't think this has been posted yet, it's from March 2019: feature article on TV Syd, (Denmark). Top marks to article for describing impact of ME, and to Daniel the featured patient who comes across very well. Bottom marks for interviewing a doctor from the Functional Disorders Center in Aarhus who insists GET and CBT help and suggests you can think yourself more ill. The proof, allegedly, is the stories on Recovery Norge. https://www.tvsyd.dk/artikel/laegen-kaldte-daniels-sygdom-boernemishandling https://translate.google.com/transl...aegen-kaldte-daniels-sygdom-boernemishandling
A brilliant letter to the editor in a local Norwegian newspaper. It's written by a nurse and ME-patient. Tønsberg blad: ME. Vi må faktisk snakke mer om det google translation: ME. We actually must talk more about it. Patients are distrusted, children have missed schooling and social relationships, parents are suspected of neglect since the children remain ill despite cognitive therapy (CBT). Alternative undocumented treatments have made patients sick and commercial operators are getting richer. The problem has spread within NAV's doors and the livelihoods affected. ME patients are "voted" as the patient group with the lowest quality of life of all diseases. We are the sickest of the sickest and we are totally neglected in the big picture. ....... We want you doctors and all health professionals to receive training on ME. And we want more people (!) to want more public money for research. We want you who are healthy and learned to speak our case, there are enough patients who have exposed their worst and most vulnerable experiences in life in newspapers in the hope of change. When you receive us patients that you don't know what to do with, channel the frustration upwards in the system, not down on us.
Jonas Bergquist was in studio yesterday on Swedish television talking about ME research. Not able to give a recap in English now, but perhaps others can? https://www.youtube.com/watch?v=XVOpRybvgx0
Actor Svein Tindberg read a moving text about ME on Sunday's MillionsMissing event in Oslo. He has written the text himself and dedicated it to his friend Frøydis. Gave me goose bumps! https://www.youtube.com/watch?v=zXK4SS5m5_c
Weird how every medical professional who falls ill to ME agrees that we were right all along and that what they were taught, if at all, is misleading and harmful. Must be a coincidence. Either that or we're some kind of wizards. Yes, must be that.
Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?
There's this from Helland: https://translate.google.com/transl...e-er-veldig-spennende-resultater/&prev=search Presumably Vogt's been promoting LP with anecdotes somewhere?
Maybe Norwegians have a thing about lights in the sky? I have always found them very sensible and sympathetic but we all have our demons it seems.
There are numerous examples. They come all the time and Lightning Process is even mentioned in a digital reference book for doctors in a section about treatments for ME. The latest approval is from today. There's been a debate in the newspaper Aftenposten lately and today MD Georg Espolin Johnson defends PACE and claims MD Henrik Vogts organisation (consisting mostly of people who claim to have recovered from ME by Lightning Process) is "documentation that patients have recovered by cognitive approach". Text with google translation
I have no idea what's going on. Alternative treatments have been rather popular for a long time among the general public, but to see doctors and other health care personell embracing Lightning Process as ME treatment has been very surprising and disheartening. They are usually sensibly sceptical to undocumented treatments, yet a Lightning Process coach has been allowed to write regularly for a newspaper in medicine and for the journal for the Norwegian Medical Association as well as teaching med students and the Norwegian Labour and Welfare Administration about ME and her treatment for it. I would very much like to know who opened those doors for her. On a side note, our princess has gotten a new boyfriend. A shaman and healer from USA who is visiting the country in these days. He has claimed to be able to heal among other blood cancer. But of course, it doesn't work if the patient has given up. This and other claims have brought an intense debate about alternative treatment vs school medicine. Which is a good thing, but very strange to now see doctors strongly criticising alternative, undocumented treatments and the patient blaming these often entail. Where are these doctors in the ME debate? Where are they when patients alert that the undocumented alternative treatment Lightning Process has gotten access into Norwegian public health care and is being pushed on a patient group by their colleagues? Where are they when it matters?
When doctors practicing school medicine embrace and promotes LP, giving a da.. about documentation, not bothering the big risk of harming patients, one gets, let’s say, a little worried. What is next to come as a mismatched solution to almost everything? It wouldn’t surprise me if a couple of doctors, sooner than later, brings shamans in as the next big thing in school medicine. If LP deserves promotion, why not a tiny little bit of shamanism?
That may be a subject needing to be treated with a degree of sensitivity. It may already have been tried.
On Monday 3 June there will be an interpellation/debate about ME in the Swedish parliament. Will probably be live streamed, recorded and available to watch here https://www.riksdagen.se/sv/webb-tv/ https://www.riksdagen.se/sv/dokumen...motande-av-patienter-med-diagnosen-me_H610263
