I’m a member. What they neglect to mention is that the journalists faked having ME and getting treatment to gain access to the group and steal information and patients names without consent. Very disturbing. Maybe, but this was not government money or even research money, this was patients own money used to try something that seemed like a promising option. I know I for one do not regret having given it a go. My money, my health, my choice. Obviously in retrospect it didn’t make a difference, but I still don’t think it’s for others to judge my and my family’s decision to try it. Should the clinic have offered rtx before the phase III? Probably not. But I refuse to be looked down on for prioritizing any chance of improvement for myself. I, like all of us, didn’t have more years to wait for my life back if there was a possibility it would work.
But money is money. The development of effective treatments for rheumatoid arthritis has not come from government money. Most of it was patients' own money given to charities for research - which is then research money. There is no other sort of research money. I was not intending to look down on patients here. My disappointment was with the doctors involved. But what might help get somewhere is for patients to say to private clinics that they are prepared to pay for new treatments but as long as they know that the treatments are being used to get useful information, with the results being published as a scientific report. If a clinic treated 200 patients with ME with rituximab it would have cost very little more, and quite likely a lot less, to compare 100 patients given standard dose with 100 patients with half dose. This is roughly what I thought might be useful to do at UCL. If the phase III trial had come out positive the results from the clinic would then provide important information about whether the same benefit could be achieved with a half dose - saving patients thousands of dollars.
Wasn't this dr. Kogelnik's promise a few years back when he initiated Rituximab treatments for ME patients? Does anyone know if he still is giving Rituximab treatment?
Dear @andypants I don't think anyone is judging you and I think we all understand why you and others decided to try the treatment before RituxME was completed. I also understand those who criticise the doctor providing the treatment, but it would be very sad if that led to patients feeling ashamed or judged for having tried Rituximab as off label treatment. I don't think that's been anyones intention at all.
De Kogelnik asked me if I would collaborate with him on a trial. But I could never pin him down to any sort of discussion about the scientific question it would answer. As far as I am aware he has treated several patients but not published anything.
Is there any protection for people in data protection laws? At the least can we name and shame those 'journalists'?
It is certainly uncomfortable to hear about, but I don't know if it is illegal. A couple of years ago there was a professor in sociology who did the same in a Facebook group for young ME patients. She used the group as material for her research without getting consent. I think she just got a warning afterwards, and things were left at that. But regarding this newspaper... It is quite a big deal that they are featuring something ME related, and the articles presents ME as a serious disease. It is not that long ago a doctor recommended Lightning Process for ME in this newspaper without receiving a single critical question. The journalists have worked hard and done a lot of research this time, and I am not sure a naming an shaming would do any good for further articles about ME from this newspaper. Good information about ME in media is sorely needed - the biopsychosocial approach to ME is heavy in this region and the newspaper's interest on ME and research has previously been very low. Perhaps they'll be more interested in future now that they have more in depth information through researching for these articles? So if one of the journalists really did become a member of the Facebook group for patients who have been treated with Rituximab at this clinic, without introducing herself to the group or the administrator, then I suggest it is for the members in the Facebook group to decide what to do. Perhaps a notification to the editor if they think it was uncool. But your question about protection for people in Facebook groups is interesting. I too would like to learn more about that. They do have quite a lot of freedom for wallraffing and undercover work, which can also be a good thing and lead to very important journalism.
It was a blog written by an underaged person, and not made anonymous enough in the paper so it got recogniced. That researcher used the word "fora" about personal blogs, so lots of confusion and rumours about beeing a member of facebook groups or forums, but they used public sources. There might be ethical side to consider, but legally - anything that can be read by more than 20-30 persons is a public statement after norewgian law, closed or secret facebooks groups included. So I would guess the journalist is on safe grounds. Facebook groups really gives a false sense of privacy. (google translate) ""There are probably a lot of outside media who do not realize that there's no more than about 20 people, so you're in a public situation," continues the IJ leader." https://www.nrk.no/ostfold/nett-troll-kan-ikke-gjemme-seg-i-lukkede-facebook-grupper-1.12506846
Recommendations by Danish Health Authorities out for the Danish 'funktionelle lidelser' tomorrow, which will include recommendations for ME/CFS, since it falls under the Danish 'funktionelle lidelser'. Notable members of the committee are Per Fink and Lisbeth Frostholm. There will also be media coverage of the recommendations this week, how much we still do not know. Will be interesting to see what happens. Most important things to look out for in the recommendations from a ME/CFS perspective 1) CBT / GET recommendations for ME/CFS or the 'Funktionelle lidelser' in general. and 2) Where will the focus on diagnostics be? As we know Denmark is sort of unique because Fink has been allowed to run wild with his 'funktionelle lidelse' and 'Bodily Distress Syndrome' diagnosis in the Danish healthcare system, I know of multiple ME/CFS patients that have been diagnosed with either of the two instead of ME/CFS. Will be incredibly interesting to see if the issue is even addressed at all. The recommendations are of course, just recommendations, and if they are terrible it will be very important to fight them and be vocal. The Danish regions have waited for the recommendations to be released for a while so they can base their new strategy on the recommendations. Interestingly, the chairman of the regions has already noted that the Danish ME forening does not seem satisfied with the work done by the Danish Health Authorities regarding ME/CFS.
Thanks for clearing that up, @inox That's something completely different, I agree. I'd only heard the facebook group version.
It took a bit digging around to find out - someone asked the author in the end, to make sure. The paper was mainly based on personal blogs (so, personal opinions and stories), and a couple of public facebook pages (sharing news, research etc) - not something you would normally call "fora" - for most that reads as "forum", and in my opinion the paper by doing so very much gives a false impression about the culture and discussions going on in places actully ment for ME patients to share experiences and opinions, like groups and forums. Since they also anonymised their sources, it's not at all obvoius for a reader what they really have studied.
First article out regarding the still unreleased recommendations. https://politiken.dk/forbrugogliv/s...ej-til-folk-med-lidelser-lægerne-ikke-forstår Igum, the journalist behind the article is a great guy who has basically been behind the vast majority of ME/CFS coverage in Denmark for the past 2-3 years. I'm saving my energy for tomorrow. So not going to go into details about the article. Most important part of the article is the end where Astrid Nørgaard from the Danish Health Authority says the following regarding 'funktionelle lidelser' ''We know that individual exercise, cognitive behavioral therapy and medical treatment can help with the physical symptoms. We need that knowledge for doctors and the population"
She also says: They (the patients) risk too much treatment, stigmatisation and unnecessary assessments and procedures that may contain risks and seldom helps with their serious symptoms. We'd like this to change. The term newspeak from Orwell's 1984 comes to mind (particularly duckspeak..)
It's not wrong. They just don't realize that they are fooling themselves with poor methodology and are yet another source of unreliable information, unnecessary and harmful treatments that don't help.
Yup. Here we go... The official recommendation from Danish health authorities for ME is exercise. It is presented as good news; as the diagnoses on the list thus are considered as conditions you can do something about yourself by starting to exercise. Other (for me) surprising diagnoses on the list are: cancer, acute infections, metabolic syndrome and polycystic ovary syndrome. Politiken: Motion er den vilde medicin: Se 31 lidelser og sygdomme, hvor du selv kan gøre en forskel google translation: Exercise is the wild medicine: See 31 disorders and diseases where you can make a difference
I hope there are people on Twitter who can comment on that Danish recommendation that is even dangerous to ME-patients.
The newspaper Stavanger Aftenblad has interviewed the general secretary of the Norwegian ME Association Olav Osland, assistent general secretary Trude Schei and the leader of the ME Association, Rogaland Country Åse Marie Lønning. Stavanger Aftenblad: ME-foreningen anbefaler bare dokumentert behandling (The ME Association only recommends documented treatments) The article is behind paywall. - We can't recommend this or other treatments as an organisation, as there is nothing clinically safe for time being. That's why the researchers at Haukeland before the study was published advised people not to try the treatment. But as a human being, I can understand that you will try out a lot when you feel so helpless and frustrated as many patients do, "says Osland.
If anyone has the time / effort try to engage in this thread. Scandinavians as well as English speaking folks are welcome. The most important part is that we make it clear that Denmark is often considered one of the worst places to be a ME/CFS patient. https://twitter.com/user/status/1008564834449920000 Søren Brostrøms twitter thread is the most likely to be able to gain attention. He is the director of The Danish Health Authority and wrote a terrible opinion piece in Politiken that is behind a paywall.
Radio interview on Denmarks Radio about 'funktionelle lidelser' basically one long propoganda piece for Fink. https://www.dr.dk/radio/p4nord/p4nord-morgen/p4-morgen-2018-06-18 Another piece of garbage by DR https://www.dr.dk/nyheder/indland/e...-hjaelper?cid=soc_facebook_drnyheder_6ni8u59t I don't recommend wasting time on either. The media coverage in Denmark is abysmal.
Interview with The Danish Health Authority on 'functional disorders' and their newly released recommendations! TOO MUCH FOCUS ON DIAGNOSIS https://politiken.dk/forbrugogliv/s...p-kampen-om-diagnoser-fokuser-på-bedre-hjælp« Translated version https://translate.google.com/transl...p-kampen-om-diagnoser-fokuser-på-bedre-hjælp« Oh no, it's been paywalled... Actually a decent article that gave insight into the Danish situation. Danish Health Authority apparently sees no positive at all by employing the ME/CFS diagnosis. Not sure this day could get any worse. At this point I don't get why the Danish Health Authority doesn't just endorse Finks 'functional disorder' / 'Bodily Distress syndrome' diagnosis instead of keeping up this charade where they seem to employ Finks approach / diagnosis in all but name.
