The director of the Norwegian ME-documentary that was recently aired on national television with 300 000 viewers, initiated a fundraiser on Facebook for 300 000 NOK (a NOK for each viewer). He reached his goal within two days and now aims for 500 000 NOK (61 000 USD/ 46 000 GBP). He is very close to this new goal and a local newspaper has written about the fundraiser. Bergensavisen: Trist at syke på finansiere forskning på egen sykdom Google translate: Sad that patients must fund research into their own disease Many of those who have given money are themselves affected, either as patients or relatives. "It is obvious that people who have been ill and away from society for many years do not make particularly strong financial support. Nevertheless, I see many patients being committed and giving money to the fundraiser. It is really sad that the patients must fund the research on their own disease. Much of the research is already paid by non-profit organizations, such as the Kavlifondet. It is unbelievably sad that one must raise money for hospital research rather than it being allocated through the state budget.
Very good article about young ME patients and their meeting with the health care system. This was written by psychologist Ketil Jakobsen before Christmas last year in the Journal for the Norwegian Psychology Association. The text hasn't been available online until now. Jakobsen has many years experience with adolescents and ME, and writes superbly on the subject. Ketil Jakobsen: Hvem er fagperson og hvem er amatør? google translation: Who is professional and who is amateur? Lack of respect for youth's own understanding and frame of reference contributes to powerlessness, despair and broken treatment relationships. Many of the councils and views they have met could be good general advice for other ailments and illnesses, but for our youth they have been perceived as easy-going and irrelevant. The experience of the project suggests that the meetings with health professionals who launch their own superficial explanations and views will be an additional burden for the young people and a source of distrust in the healthcare system. As healthcare professionals, we must realize that our lack of specialist knowledge can in some ways help to develop illness and suffering in the wrong direction, and honesty about what we do not yet know and understand is often best in the long run.
Where does he get this from? Have there even been any comparisons looking at differences in biomarkers in Oxford versus Canada selected patients? What biomarkers is he talking about? Why did the journalist not challenge this unsubstantiated statement, given that the other researchers claimed the use of Oxford was a major problem and the health authorities [Helsedirektoratet] in Norway specify Fukuda or Canada should be used? From the Danish version of the article https://videnskab.dk/krop-sundhed/me-forskningen-er-fortsat-praeget-af-usikkerhed-og-uenighed (translation mine)
The article may have inadvertently given us a clue about what's really going on. One, it looks like some researchers are starting to play nicely together: Two, Wyller has not been invited to play: Conclusion: Wyller wants to be one of the in-kids but isn't; he's feeling left out. Anyone else wish this was just another silly schoolyard squabble? From the Danish version of the article https://videnskab.dk/krop-sundhed/me-forskningen-er-fortsat-praeget-af-usikkerhed-og-uenighed (translations mine)
Yes, great article documenting young patients not so great encounters because of lack of knowledge. I think each and every ME-patient, young and old knows a thing or two about this, due to the negative stereotyping of the group as a whole. Reminds us of the great paper a couple of years ago on epistemic injustice by Geraghty et al. That one explains possible consequences when the “receiver” prejudicing and judging a whole group, near automatically not will pay attention to personal testimony’s. Lack of knowledge is a scary thing, and it takes many negative unacceptable twists and turns. Loosing trust is one thing. It is not strange but somewhat a paradox that many patients will avoid engaging with so-called professionals. The really devastating thing meeting such c..p is that it in many cases will have a negative impact on long run prognosis.
SVT Nyheter Halland: ME-forskaren: ”Det finns en strimma hopp” https://www.svt.se/nyheter/lokalt/halland/me-forskaren-det-finns-en-strimma-hopp ME-researcher says: "There's a glimmer of hope" Very short text + 1 min audio. Emeritus professor Anders Rosén mentions a few common comorbid conditions (FM, neurological illnesses, thyroid issues) and says that all of them have elements of autoimmunity. "The immune system is definitely involved, and it's hampering the metabolism. There's absolutely a glimmer of hope, that we will be able to build on these fundamental findings about the metabolism, develop it further, and eventually be able to find a suitable treatment."
SVT Nyheter Halland: Därför har Försäkringskassan svårt att hantera ME https://www.svt.se/nyheter/lokalt/halland/darfor-har-forsakringskassan-svart-att-hantera-me "This is the reason why Försäkringskassan (the Swedish Social Insurance Agency) has problems managing ME" They claim it's because there are no guidelines for how long people who are ill with ME are supposed to be on sick leave, and the fact that doctors have "different opinions" re: the diagnosis and the treatments...
SVT Nyheter Halland: ME-sjuka Loise: ”Har inte hövligheten att ha ihjäl en” https://www.svt.se/nyheter/lokalt/halland/me-sjuka-loise-har-inte-hovligheten-att-ha-ihjal-en 3 min video clip filmed by Loise who is ill with ME. "It doesn't have the decency to kill you."
In the latest issue of Journal of IiMER, prof. Ola Didrik Saugstad gives a recount of the harsh ME debate in Norway. Page 36-39. Prof. Saugstad is and has been a strong supporter for ME patients and biomedical research and active in the debate. Aspects of the debate were CBT, LP, Wyller, Recovery Norge and PACE.
Thanks, this is interesting. One gets the impression that the IOM report is very threatening to the psychosomatic paradigm. As it should be .
...so yes i did a cut and past thing-pling... more easy to read and it is a goood read -yey Saugstad!!! (Recovery Norge - Henrik Vogt & co) A harsh debate about ME in Norway – A personal view from Professor in Pediatrics Ola Didrik Saugstad, mai2018 | https://totoneimbehl.wordpress.com/2018/06/08/a-harsh-debate-about-me-in-norway-saugstad-mai2018/
ME mentioned on Rapport (one of the two main news programs on Swedish TV) tonight: https://www.svtplay.se/video/18113711/rapport/rapport-10-jun-18-00-2 Available to watch online for 7 days from today.
A newssite for research, Forskningno has an article today about possible wheat sensitivity in ME patients. (Study discussed at this forum in this thread) Forskningno: Hvete kan bety trøbbel for ME-pasienter google translation: Wheat can mean trouble for ME-patients
On May 12th, the Norwegian ME Association donated 250 000 NOK (3 1000 USD/23000 GBP) to dr. Øystein Fluge and his team and 50 000 NOK (6000 USD/4600 GBP) to prof. Kristian Sommerfelt. The money were officially handed over today at Haukeland university hospital. The local newspaper Bergens Tidende wrote an article about it ME-foreningen gir penger til videre ME-forskning google translate: The ME Association provides money for further ME research The ME association in Hordaland handed over 300,000 kronor to ME research at Haukeland and the University of Bergen on Wednesday. 250,000 kroner goes to a research group at the cancer department who is looking for biomarkers for the mysterious disease. If they find it, ME in the future can be detected in blood or tissue tests. ME-sick all over the world waited for the results when the same research group tried out the cancer drug rituximab against ME. The result was disappointing, but the group continues along the same track. The support from the ME association will be included in the funding of a similar study with cyclophosphamide. The last 50,000 crowns go to Professor and Pediatrician Kristian Sommerfelt, who will investigate what happens with children and adolescents who are diagnosed with ME.
The Norwegian region newspaper Stavanger Aftenblad has an article today about prof. Dagfinn Øgreid, the oncologist who has provided Rituximab treatment to ME patients at a private clinic. He is now under investigation from the Norwegian Board of Health Supervision for having prescribed experimental drugs for ME and for cancer, and for having prescribed antibiotics for long term use as well as addictive drugs. Prof. Øgreid says to the newspaper - I am very proud to help patients who have no other help. We have considered some of our projects at the clinic as challenging given that it could turn into an investigation. We have taken this into account. It may be a good thing with an audit in order to define the limits for what is acceptable treatment. This investigation has taken a very long time. I believe that reflects that these are difficult issues to assess and that the answer is not obvious. When asked whether his actions are irresponsible, he answers: - I want to answer with a clear no. That's been my response to this, and it applies to all four cases. Medicine must be capacious and wide. Everything we do is based on research and clinical documentation. The disagreement here is about how much research is needed before you can start applying a treatment. Stavanger Aftenblad: Lege granskes for eksperimentell behandling av alvorlig syke mennesker (Doctor investigated for experimental treatment of severely ill patients)
Today Aftenbladet follows up with even more articles where they have gone deeper into the subject. Dr. Øgreid at Kolibriklinikken says he has treated about 250 ME patients with the drug Rituximab, but that fewer people are coming now after the negative results of the large multi-center study RituxME. Patients who have tried treatment with Rituximab at Øgreid's clinic (Kolibri) have their own Facebook group, and a poll among the members showed that only a few can report recovery and many of those who did improve have relapsed. There are interviews of two ME-patients who has been to the clinic, one with no effect and one with a big improvement at first and then later relapsed, but she is still better than before treatment. Professor Olav Mella and Professor Ola Saugstad warn against treatment at Sandnesklinikken. Saugstad says to Aftenbladet: - This is a vulnerable group that tries most things. I usually tell ME patients that they can try everything as long as it doesn't harm them or ruin them. This treatment is expensive and has potential side effects. I don't like it that a physician is offering such treatment. When asked how he explains that Rituximab has worked on someone, he answers: "Based on the studies at Haukeland, it is thought that it has worked on some, but in the recent study, the treatment showed no certain effect based on statistical tests. We also know that the disease fluctuates, so temporary improvement need not be due to medicine or other treatment, it can also be natural fluctuation. There is a reason that it is so important with studies. All the articles are behind paywall Øgreid: - Vår behandling er tiltenkt dem som ikke kan vente (Øgreid: - Our treatment is for those who can't wait) Å dra til Kolibri er det eneste håpet mange av oss har (To go to the Kolibri-clinic is the only hope for many of us) Jeg håper jeg vinner i Lotto sånn at jeg kan fortsette behandlingen (I hope I win in Lotto, so I can continue treatment) Livet er ikke enkelt, men det er bedre enn å klamre seg til et falskt håp (Life isn't easy, but it's better than to cling to a false hope) Minst 10,000 nordmenn er ME-syke, og det finnes ingen godkjent kur. Likevel tilbyr en Sandnes-lege behandling (There are at least 10,000 Norwegians with ME, and no approved cure. Yet a doctor in Sandnes offers treatment)
To me this is a stark indication of the way some doctors have their priorities wrong. I think Fluge and Mella spent about £2M on giving us reliable information about rituximab in ME - it does not work. I suspect that the private clinic has received more like £4M+ from patients, and this has told us nothing. That £4M could have been used to run an adequate trial of ampligen or anything else that might need investigating. It would pay for ten PhD projects in basic research. It would provide infrastructural funding for the UK ME Biobank for 40 years! And so on.
