Search results

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...

:laugh::laugh:

Paul Garner has shared Live Landmark's opinion piece on twitter with the following text: Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process. Nice should hang its head in shame #CFS

Brian Hughes with excellent comments to the Landmark opinion piece on twitter:

Yes, they don't translate opinion pieces, but you can send an opinion piece to them in English or translate your Norwegian opinion piece into English and "try your luck". I can't recall having seen opinion pieces before on their English platform (but then again, my memory is bad so it might have...

Sten Helmfrid says on twitter that English translation is on its way