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Danish news report today of a study on long term symptoms in children post covid-19 infection. Aalborg University Hospital presents the study on their website and writes that sequelae after covid-19 infection in adults have been thoroughly examined and described (sic), but that until now the...

Patient advocate Sissel Sunde was recently interviewed in a local Norwegian newspaper about her disease. Summary here in the Scandinavian thread. She talked about the different ME treatments she had tried, among other the treatment provided by psychiatrist Bjarte Stubhaug who authored the study...

Moved from the general Long Covid thread. Reviews in Medical Virology Proposed subtypes of post-COVID-19 syndrome (or long-COVID) and their respective potential therapies by Shin Jie Yong, Shiliang Liu Summary The effects of coronavirus disease 2019 (COVID-19), a highly transmissible...

There were three articles about the NICE guidelines in a Danish journal about neurology December 9th. Psychologist Peter La Cour is supportive of the new guidelines, professor Per Fink is not. The articles mention the protests from the Royal College of Physicians. Omstridt ME-behandling...

They might know of this already, but here's the website to Long Covid Kids https://www.longcovidkids.org

Worrying article about children and long Covid from Association of American Medical Colleges. AAMC 'Scary and confusing': When kids suffer from long COVID-19 “It’s incredible to me the number of really high-functioning kids who are completely disabled for a period,” says Alicia Johnston, MD...

This is from 17th November, but I don't think it has been shared yet IDEAS.TED.COM I was a healthy 38-year-old... but now I have long COVID by Margot Gage Witvliet PhD quotes: People with chronic diseases have reported the same pattern of not being believed. I knew these alarming statistics...

Miriam Tucker for Medscape: In Long COVID, CPET Finds Abnormalities Other Tests Don't quotes: These data align completely with prior work in patients with both PASC and ME/CFS by David M. Systrom, MD, director of the Advanced CPET program and Dyspnea Clinic at Brigham and Women's Hospital...

A Life Hidden: The Truth (and Myths) About Positivity and Determination Quotes: It may be comforting to the wider world to believe that illness and disability are a state of mind, and that those afflicted can achieve wonderful things if only they dream big enough. But it simply isn’t true...

People who support the letter can sign it, both individuals and organisations. Link here The letter states among other: Post-viral illness experts, including researchers, clinicians, and patient advocates with expertise in conditions seen in Long COVID (including ME/CFS, postural orthostatic...

Trial By Error by David Tuller Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up quote: It is important to hold organizations to account when they fall short of expectations, as Cochrane has in how it has handled these two published reviews. Until recently, it...

Trial by Error by David Tuller Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up Quote: Landmark and her comrades in the GET/CBT/LP ideological brigades have been humiliated publicly by NICE, so it is understandable that they are throwing tantrums–even one as...

He might be referring to Live Landmark as a recovered patient, rather than himself. Not very clearly stated..

That's a very good point, yes.

The opinion piece by LP coach Live Landmark received a response from two Masters of Science and ME patients. The response have been translated into English and published on Science Norway. Benedikte Monrad-Krohn/Øistein Jansen: Patient activism is not being the British guidelines for CFS/ME...

Some years ago the Norwegian Research Council put aside 30 million NOK for research into ME. They invited the public and users of research (which could be carers, patients, clinicians - anyone) to come with suggestions and wishes for what kind of research projects the money should fund. The...

The opinion piece is shared by Garner on twitter with the following text: - Nice corrupted. Recovered patients not heard. Recovery Norway challenges NICE guidance for rejecting useful treatments that deal with "changes in thinking, emotions, behavior and physiological stress responses." #MECFS

If you click on the likes to this tweet, you'll see it. And yes, it was Flottorp.

Yesterday @mango shared in the Scandinavian thread an opinion piece about NICE written by Sten Helmfrid, the chair person and the vice-chairperson of the Swedish ME Association. The opinion piece was published in the Journal of the Swedish Medical Association. It has now been translated into...

just adding a few google translated quotes: We represent Recovery Norway, an association which among other things consists of people who have had ME/CFS, and who have recovered by using techniques that are about changing thought and behavioral patterns. The process behind the Nice report is...