Today there was an interview on TV, channel 4, with Prof. Jonas Bergqvist and the partner of a ME-patient. She got ME/CFS 4 days after a flue vaccination 8 years ago. The interview was very good, also included comments on the film Unrest, and will surely contribute to increased knowledge about ME/CFS. It will be possible to watch it world-wide, if there are any Swedish-speaking people out there. https://www.tv4play.se/program/nyhetsmorgon/3952617
Do we have any members from Finland? I found this #MissingMillions vid on Youtube which unfortunately does not have sub-titles. Have they started early or is this from last year? https://www.youtube.com/watch?v=P0twfFpAj2g also a Finnish CFS forum which is also in english; " CFS-verkko was created by 28-year old Finnish journalist, author and medical writer Maija Haavisto, herself a CFS/ME patient since 2000, though living in Amsterdam, the Netherlands since 2010. She has also written a book titled Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia (2008), which was published in Finnish by Finn Lectura as CFS:n ja fibromyalgian hoito in 2010, the foreword written by professor, sleep researcher Olli Polo. Finn Lectura also published Haavisto's second medical textbook Hankala potilas vai hankala sairaus in 2001. Thanks to a grant she is currently working on a new medical book about treatments for autoimmune diseases, hopefully due out in 2013. Haavisto has written two novels dealing with CFS/ME, Marian ilmestyskirja (2011) and Makuuhaavoja (2012), both published by Muruja. She has also adapted the former into a play, which will hopefully go into production in 2013 or 2014. She is looking for an international/English language publisher for all of her books. Haavisto is a columnist for the Tukilinja disability magazine and writes about health (and other) subjects for various magazines. She has also been interviewed about CFS/ME for several Finnish publications. She was a speaker at two low dose naltrexone conferences in Britain in 2010 about the use of LDN in the treatment of CFS/ME. She also does medical translation." https://cfs.gehennom.org/?inenglish
I don´t know if there are any here, but JES is on PR and also Maija Haavisto used to be there. Here is her twitter if anyone with an account would like to invite her https://twitter.com/diamondie
I wondered the same when I saw the facebook post and am very interested. Thanks for bringing it up. It was definitely this year (read other accounts about it). Wondered if it was somehow connected to the conference in Finland.
Svenska Dagbladet: ”Hög tid att ge personer med ME upprättelse” https://www.svd.se/hog-tid-att-ge-personer-med-me-upprattelse Google Translate, English ("It's high time to give people with ME redress") https://translate.google.se/transla...att-ge-personer-med-me-upprattelse&edit-text=
Uppsala Nya Tidning: "ME-patienter utan vård" http://www.unt.se/asikt/debatt/me-patienter-utan-vard-4904389.aspx Google Translate, English ("ME patients without care") https://translate.google.se/transla...e-patienter-utan-vard-4904389.aspx&edit-text=
More about ME/CFS in Swedish media. Next Monday, February, 26th, the well-known author Karin Alvtegen will be interviewed about her ME/CFS in the TV show "Ask the Doctor" (Fråga Doktorn) at 6.45 pm. Karin Alvtegen has kindly, although getting severe PEM afterwards, admitted to several interviews on TV, radio and in newspapers lately. They have been very good and informative, and it seems like Swedes usually know about ME now. Thanks Karin for your great job!
And just now it´s another discussion on the radio about the ME scandal in the popular radio show "Nordegren and Epstein" on channel 1. It ends with a discussion about "how medical students are taught to treat patients with ME/CFS as there are diverging opinions about what to do". " How much do you doctors have to know about a condition before you begin teaching about it"? " Do you, doctors, get updated about newly described conditions"? " What rights do I have to get a second opinion from a specialist?" Dr. Jan Östergren, who was interviewed had good answers, and the discussion about a proper care of ME-patients was definitely pushed forward .
Thank you for the links, @Helen I thought it was interesting to hear dr. Jan Östergren in the radio interview. As far as I understand he is in charge of curriculum for medicine students at Karolinska (the biggest university hospital in Sweden). He emphasised the importance of teaching students how to accumulate knowledge, reading research, also after their formal education has ended. That medicine is lifelong learning and the starting point must always be what the patient is telling. ETA: And it is SO wonderful that media finally seems to be moving on from "ME; is it real?" to asking good, critical questions and actually beginning to understand what huge impact this disease is having on patients and to show empathy with the patients.
@Kalliope, good points that you summarized from the interview. And as you say, finally media and people are taking ME seriously here. We have now reached the point of no return, and we can proceed with discussions about how patients should be handled and helped. I hope the interest in ME now will spread to all the Northern countries, as topics in media often do. The snow-ball should be rolling from now on... Here is a link to another recent interview with Karin Alvtegen, a ME-patient. Sorry, you have to understand Swedish.
If only that were true... Some really vile stuff was written in this article, published today... Expressen: Omstridda diagnosen ME ökar snabbt – men splittrar läkarna https://www.expressen.se/nyheter/qs/diagnosen-delar-lakarna-i-tva-lager/ Google Translate, English ("The controversial diagnosis ME is increasing rapidly - but splits the doctors") https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=https://www.expressen.se/nyheter/qs/diagnosen-delar-lakarna-i-tva-lager/&edit-text= Expressen: Sörbring: "Det tar i genomsnitt tio år innan man kan få en diagnos" [video clip 1:55 min] https://www.expressen.se/tv/nyheter/sorbring-det-tar-i-genomsnitt-tio-ar-innan-man-kan-fa-en-diagnos/
SVT.se: Emil Heiling är en av de som drabbats av sjukdomen ME https://www.svt.se/nyheter/inrikes/han-ar-en-av-de-som-drabbats-av-sjukdomen-me SVT.se: FAKTA: Det här är sjukdomen ME https://www.svt.se/nyheter/inrikes/det-har-ar-sjukdomen-me SVT.se: 4 frågor: Det behöver du veta om ME https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me
P4 Extra: 15-åriga Johan har sjukdomen ME: Jag hänger fast vid hoppet att bli frisk [audio 6:44 min + text] http://sverigesradio.se/sida/artikel.aspx?programid=2151&artikel=6891962 P4 Extra: Vad är ME -- Jonas Blomberg, professor emeritus i klinisk virologi [audio 4:28 min] http://sverigesradio.se/sida/artikel.aspx?programid=2151&artikel=6892336
That was pretty bad. Lots of misleading stuff in there, but written in a way that could seem 'balanced' to people who don't know the topic. It promotes loopy stuff like LP without explaining why it's loopy, or the problems with SMILE, eg: "In Norway, the former ME patient is running the Live Landmark 'Lighthing Process', a private treatment method that, with three-day courses in mental training, claims to be able to change the mind patterns of ME / CFS patients , thus curing the disease. In the Recovery Norway network, a large number of Norwegians publicly report that they have become better and even completely recovered after the "lightning process" treatment. According to a study by Archives of Diseases in Childhood , the "ligthning process" has some scientific evidence regarding teenagers, but the Norwegian ME association has opposed research support." Then those who have been chosen as representatives of the other 'side' often have details included to make them seem questionable.
Agree. Too bad after all good publicity lately. I checked with some people, and to them like to me it was evident that this newspaper just wanted another angle as they were late on the scene. I let the journalist know our opinions and that we clearly could see her hunt for klicks at the expense of severely ill patients.
I'm just speculating now, but based on what little I've seen from somewhat behind the scenes (timeline, questions asked etc) I wouldn't rule out the possibility that the BPS extremists in question were in fact the ones who set the ball rolling, who had a clear agenda and contacted the journalist in the first place... I'm only guessing, though.
I think that we all need to keep in mind that there will always be this back and forth on the battlefield between science and their pseudoscience. Even when we achieve big advances such as a series of positive articles in the media, or the debate in the UK parliament, we need to be prepared to be met by attempts to undo that progress, after all many of our opponents will be fighting for their livelihood and careers. But we can take heart in the fact that these attempts are in response to our small victories that are building momentum as time passes. All in my own opinion of course.
I understand, and could have agreed to your concerns in this case as well, but I heard from people involved that it wasn´t the fact this time. There have also been so many segments of really good quality about ME, as you know, so people are now well-informed from what they heard, read and watched. The big difference this time is that so many people now are talking about the "terrible disease ME, and the lack of care" and ask themselves and others how this could happen here. Patients may come out with ME now as they can expect to get acceptance for the disease. But yes, there are always deniers. Luckily, we don´t have people that should loose their careers from a breakthrough like in the UK. Things haven´t been written in stone here, so deniers can still change their mind without being questioned too much. All in my opinion, as you say @Andy
Again, I really wish that were true... That's definitely not my experience or what I see taking place, at all. Not in the part of the country that I live in, at least. No acceptance, no knowledge, no respect, no compassion... But I'm genuinely happy for those of you who might have had better experiences ETA: Actually, it doesn't have anything to do with where I live. Looking at conversations online, comments under newspaper articles, talking to friends etc -- I simply don't see the same change as you, Helen. Unfortunately, sadly.
