ME is currently in the news related to a case of alleged research fraud linked to Karolinska Institutet ("one of the world's foremost medical universities and is Sweden's single largest centre of medical academic research", according to their own website). "A suspected fake scientist is spreading vaccine resistance and disinformation about Karolinska institutet (KI) via an international journal. Now the university's communications department takes action to minimize the damage. [...] claims that HPV vaccination may be behind the increase in the number of cases of cervical cancer seen regionally in recent years." Läkartidningen: "KI utreder misstänkt falsk forskare: »Extremt allvarligt«" (Google Translate, English) http://www.lakartidningen.se/Aktuel...-misstankt-falsk-forskare-Extremt-allvarligt/ He has written about ME as well, apparently. A friend told me they mentioned it on the news on the radio earlier today (I haven't been able to listen to it myself). Conflicting results in article describing "HPV-vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis". Andersson L. Vaccine. 2017. https://www.ncbi.nlm.nih.gov/m/pubmed/29195610/
@mango , I heard it on the news today and it is terrible if a medical journal doesn´t look up the writers before publishing. No blame on Karolinska this time, as far as I can see. I have heard of several cases ( young girls sadly) who contracted ME after the HPV-vaccination, so to me it clearly seems to be a trigger in susceptible people.
Sissel Sunde is behind the largest MillionsMissing event in Norway tomorrow. It all started with a guest blog post at one of the biggest bloggers in the country, where Sissel told her story together with information about ME, research and the MillionsMissing movement. The blog post was shared and read over 10 000 times. Now this blog post has been translated to English Life with ME by Sissel For tomorrow Sissel has organised an event in Stavanger city with music, talks and installation of several hundred shoes from ME-patients. One of the speakers are prof. Ola Saugstad, a paediatrician who's been engaged with the ME-field for a long time and has visited many of the most severe ME-patients in Norway. The event will be live streamed from MillionsMissingNorway from 12.00 -13.00 (local time). There will come a video later of the event with English subtitles added.
Letter-to-the-editor by chairman and general secretary of the Norwegian ME Association to the newspaper Dagsavisen. Håp for ME? google translation: Hope for ME?
Letter-to-the-editor by psychologist and ME-patient to the newspaper Dagsavisen Problemet med hvordan vi forklarer ME google translation: The problem of how we explain ME Focus on psychosocial factors has not reduced prevalence. ME is the main reason for sick leave at school. During the last five years, the occurrence has been sixfold. Also, an increasing proportion of adults who get ME are put out of work. They want to work, but are not able to.Socioeconomically, there will be great values in researching symptomatic treatment, discovery of biomarkers, and eventually a cure.
"We hope that the new ME patients can get to hear that a great american metastudie summarizes that cognitive therapy and graded exercise can not be expected to help for ME patients with diagnosis after Fukuda or Canadian criteria recommended by the ministry of Health. The study only shows that such treatment can only be expected to help patients with the diagnosis of the old Oxford-criteria and which do not meet the Fukuda or Canadian criteria. It has led to that u.s. health authorities no longer recommend the cognitive therapy and graded exercise for ME patients. We have a hope that the Norwegian health authorities learn of this. In the first place, we have a hope that the new ME patients get good information of those they encounter in the health care system. When can ME patients even take an informative choice of treatment."
The Norwegian ME Association - Oslo and Akershus county - has made a video with interviews of Norwegian ME researchers for 12th May. I hope someone is working on subtitles in English. The film contains an interview with professor Ola Saugstad about the IOM report, increased research in USA, and what Norwegian ME researchers are looking in to. MD and PhD candidate Asgeir Lande is part of a research group at Oslo University Hospital. He talks about testing the hypothesis whether autoimmunity is one of the causes of ME. MD Øystein Fluge tells about the RituxME and CycloME studies, and the continued work with samples from their biobank. Professor Karl Johan Tronstad at the University of Bergen talks about the Haukeland biobank and how it is used to search for biochemical aberrations and a hunt for disease mechanisms. The goal is to achieve better understanding and possible development of biomarkers and treatment. MD and PhD candidate Katarina Lien from Oslo University Hospital is particularly interested in the symptom PEM. She wants to find out why ME patients don't have a good effect from exercising, but are getting worse. Katarina Lien thinks the metabolism trail is interesting as well as gut flora. https://www.youtube.com/watch?v=gylDjezd3e4
On Swedish radio, channel 1, there was an interview this morning with a female police with ME about her economic situation. A lawyer commented on the demands of proof when not being able to work. https://sverigesradio.se/sida/avsnitt/1073363?programid=1650 1:18 - 1:30
I don't know why, but on Google Translate a pop up appears, I click on it and the article disappears, yet on Yandex, this doesn't happen. It seems to me that the pop up causes the problem? (I don't know what it says). Maybe it depends on what the translation program selects as it's starting point, the actual article, or the page the article is on.
Excellent opinion piece from Sweden Metro: Agnes Arpi: Okunskapen om ME-sjuka är tragisk google translation: The ignorance about ME patients is tragic The fact that the body and the brain is connected is true, but the statement "it's in the head" is terribly misused. So many patients, meeting different disciplines, have for years been told that they have no reason for their suffering, apart from their attitude. Often it later turns out to be wrong. Thinking of all the time, all life wasted by carelessness, disinterest and ignorance is tragic. When a doctor is in doubt about the patient's symptoms, it's a convenient way to keep your back free to say: "I'm not the one who lacks knowledge, you're wrong." Instead, let the insight "I do not know" be the reason for curiosity, humility and dedication.
Yes, excellent article. There was also information about a new advisory board, created by the Minister of social Affairs, for patient organizations to have direct communication with the government and where meetings will take place regularly. http://news.cision.com/se/socialdep...patientrad-for-halso--och-sjukvarden,c2509423 Google translate: https://translate.google.com/transl...-for-halso--och-sjukvarden,c2509423&sandbox=1
Article in the Swedish newspaper Aftonbladet about 13 year old Irma who has ME. It explains very well her isolation and the family's frustrating meeting with the health care system who lacks knowledge about the disease. Aftonbladet: Irma, 15, lever med obotliga sjukdomen: "Det är så jobbigt" (I was not able to google translate the article)
Yandex, which seems to work better with Aftonbladet articles, translation here, https://bit.ly/2Gzjc0P
Thanks once again, @Andy for helping out. I keep forgetting that there are alternatives to google translations..
Today the newspaper Aftonbladet also published an article by Prof. Anders Rosén who got into ME research after he was retired. He says that researchers are getting closer to a solution of the ME mystery according to the reports that he gets. https://www.aftonbladet.se/nyheter/a/ngKGxd/forskarna-narmar-sig-en-losning-pa-me-gatan Yandex translate: The researchers are approaching a solution to ME-the riddle What causes ME/CFS is unknown and there is no cure. But through intensive work is now coming to the researchers, a response to the serious disease riddle. – I'm hopeful on the basis of the reports that have come in lately, " says Anders Rosén, professor emeritus at the Linköping university. During the last few years have ME/CFS, previously often called the chronic fatigue syndrome, surrounded by an intense debate. Some doctors argue that the fatigue and the pain has psychological causes. The organisations argue instead that the condition is in the highest degree natural. Anders Rosén, professor emeritus of cell biology at Linköping university, together with the collegue, Jonas Blomberg made a compilation of the latest research in the field. It provides support for patients advocates line. Anders Rosén, professor emeritus at the Linköping university. – What we see is that there is clear evidence that ME is a physical disease, with abnormalities in both the metabolism and the immune system, " he says. Affect metabolism In a review article, published in the journal Frontiers in Immunology, notes the professors to the image of what the causes of the disease are getting clearer. – Usually it is an infection that makes the disease arises. It leads to a reaction that makes the immune system is targeted, the wrong and attacks the body's own tissue. This can turn against the body's metabolism and communication between nerve cells in the brain. The latter are suspected to be behind the brain fatigue that many ME patients experience. ”Need more resources” However, it still remains a lot of work. One of the challenges is to manage to detect ME/CFS by sampling. – To find a way to make the diagnosis by, for example, a blood test would be a very important step. It would likely make it easier for patients to be believed, and it would prove that the fatigue is caused by bodily changes. In the longer term, scientists hope to find a way to mitigate – or in the best of cases, cure the serious disease. According to Anders Rosén, there are results from research in Norway, which is promising. – Which has been taken out of a type of white blood cells from ME-affected. The results have been diverse, but likely it can provide positive effects for some groups of patients. What do you think about the chances to find a cure? – On the basis of the reports that have come in lately, I am hopeful. In the US, betting sums on ME. Sweden is far behind, but also we are on a good path. It, however, needs significantly more resources for research. We also need to engage younger scientists in the work, " says Anders Rosén.
Trailer for tomorrow's ME-documentary on Norwegian television. The documentary has followed some ME patients and the RituxME trial for two years. It will be aired on TV2 tomorrow at 21.40. Here is the documentary's Facebook page.
