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MEA Press Release: Severe ME Day - M.E. sufferers hit out at "humiliating" DWP benefit assessments For Severe ME Awareness Week, charity the ME Association, lays bare the struggle faced by members to obtain the basic Personal Independence Payment, a benefit for people who may need help with...

This is the presentation of Jon Stone on the website for the upcoming conference. Didn't know his PhD was supervised by Michael Sharpe. https://my.eventbuizz.com/event/schizofrenidagene-2019/detail/speaker_detail/461790

Have never visited Stone's website before, and this might already have been shared on the forum, but find it unsettling that he links to Henrik Vogt and recovery Norge when writing about fatigue and CFS/ME https://www.neurosymptoms.org/fatigue/4594358000 ETA: He also claims (my bold): This...

I read their answer that even though their clinical experience tell them many of their patients recover, they have no way to put a number or percentage on exactly how many we're talking about. ETA: But how recovery is defined by them is also a valid question. BTW; They are nicknamed the...

I think it is the correct word. The original word is "tallfeste" (to put a number on). This is how the dictionary translates it https://www.dinordbok.no/norsk-engelsk/?q=tallfeste Perhaps "measure" would have been more accurate to use?

About the evidence behind prognosis for children/adolescents stated in the Norwegian guidelines for ME/CFS A patient have asked the Norwegian Directorate of Health why it's stated in the national guidelines for ME/CFS that the prognosis is better for young patients than adults, and referring to...

Yes. As far as I understand the wish is to spread this information far and wide.

Some of the lectures in the program A section called "Psychosomatic" have these 3 lectures: Linn Getz “Biology, biography and allostatic load - a language to describe accommodations, catering and the price to survive" Vegard Bruun Bratholm Wyller “Chronic fatigue: An integrated biopsychosocial...

I'm creating a separate thread for this, as I believe there will be some articles and additional information of interest before, during and after this conference. There's been a large annual psychiatric conference in Stavanger, Norway called "The Schizophrenia Days" since 1989. It has grown...

Thanks :)

Yes. From @Snow Leopard 's link there are three new letters. Have now asked for them.

There's also a "philosophical epilogue": The preceding evidence suggests that CFS/ME is not one illness, and understanding its aetiology is therefore challenging in the absence of clearly defined subgroups, some delineated by biological factors, and others by psychological factors. But finding...

Here follows a continuation of the analysis and comments to Karina Hansen's journal by Stig Gerdes (her previous doctor) and patient advocate Bente Stenfalk. It is shared with permission. Most of it is google translated, with some minor adjustment, but I hope it's understandable. In Denmark...

Yes, I guess it is. The (biopsychosocial) national competence center uses CFS/ME, and some researchers, but in media it's mostly only ME. Perhaps simply because it's easiest. Patients use ME rather consistently so perhaps also that has been paying of. Some doctors protest though as the name...

The Norwegian news site about research Forskning.no has written an article about ME based on Komaroff's JAMA article. They also emphasise that NHS and CDC have completely different approaches to ME. NHS recommends GET/CBT while CDC has removed those recommendations and advice patients to instead...

https://solvecfs.org/dr-jarred-younger-to-complete-brain-image-study-with-increased-funding/ The Ramsay seed funding was leveraged by Dr. Younger into a powerful R01 study that will replicate the use of MRSI in a much larger cohort of ME/CFS and healthy control subjects. The study will also...

Yes! That's the correct link. Thank you! Now at least people have access to it :-)

Thanks for the suggestion, but no, that didn't seem to work either..

For some reason I could not embed the link to the original Danish post on Facebook. Am trying again: ETA: Perhaps it's just a temporary glitch, will try again later. But the original Danish text was shared on the public Facebook group "Karina-sagen". <iframe...