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OMG!! Thanks for taking the time to explain. Now I understand:(. (I'm a fan of "The Muppet Show", but I see now how insulting such a comment is coming from him especially)

I read that as him trying to be funny, there was a smiling emoji att the end of the sentence. Not the best time and place for jokes though, I agree! I don't know what the "a day with the muppets" debacle is? Should I know that?

They do accept self-referrals. It says on their website that they treat them like any referral: "Reception Post-infectious diseases at Karolinska, formerly Postcovidmottagningen, receives patients in need of highly specialized examination. Our reception's main task is to investigate and...

A really unexpected and weird way! I think I might actually ask for a referral. Since I have developed new symptoms after covid but at the same time improved in my usual ME-symptoms. Maybe they can find something that's treatable;). And if I'm lucky I get to meet Per Julin!

Thanks for sharing @mango :) I agree! It’s worrying and very disappointing to read RME:s statement :(. Seems like a lot of lobbying has been going on... Almost like another person from another patient organisation is speaking. They steer further and further from the goals and values they once...

Thank you @mango for all the background information!:) Even though I am part of the Swedish ME Community I have been out of the loop for a while. Appreciate this update a lot! Oh, that is interesting news! Is the patient organisation condemning the IVO investigations? That is odd! Where do...

Thank you for sharing this @mango :). I've registered and hope I have energy enough to watch.

(I'm not sure where to post this, or if it's already been posted.) Long Covid - Exploring the latest science and pathways forward From Gez Medinger's YouTube channel. The opening presentation from the 17th Integrative Healthcare Conference, 2022 in New York. Hosted by David Brady and with a...

My impression from listening to Jonas' story is that he recovered partly because he was diagnosed early, within a year if I got that right, and that he subsequently did everything right in terms of pacing. And had the means to rest properly during those first years. Exactly what some ME...

In the latest version of the research protocol there's a mentioning of a 'sister-studie' being planned in Region Östergötland. It will have a separate ethics application. I contacted Anna-Karin Norlin, the lead researcher for the upcoming 'sister-study', and asked if an ethics approval had been...

Pretty good overall, but some statements troubled me: "A lowered metabolic rate and decreased energy is typical in ME..." (is lowered overall metabolism really present in all ME-patients? Why do some patients lose weight due to ME while others gain weight if that's the case?) "The disease...

:banghead::banghead::banghead::grumpy::grumpy: Oh why, oh why did I watch this!!

:laugh: Yeah, it can definitely have the opposite effect if you don't want to hug someone. I cringe when people make their kids hug people when they clearly aren't comfortable doing that, it can feel like such a violation of boundaries to a child. Eeeh, hugging with masks..?? Your sister...

I was thinking about how many ME - patients live alone and are isolated (like me) or can't tolerate another person's touch. It might not be the most necessary research to do and we already know instinctively that touch is soothing, but I thought it was interesting that there were objective...

Self-soothing touch and being hugged reduce cortisol responses to stress: A randomized controlled trial on stress, physical touch, and social identity Aljoscha Dreisoernera,*, Nina M. Junkera, Wolff Schlotza,b, Julia Heimricha, Svenja Bloemekec, Beate Ditzend, Rolf van Dicka Abstract...

I hadn't seen that. Yes, that looks promising to see Per Julin and Anders Rehnström involved. I might ask my GP for a referral to the Post-covid clinic in Huddinge. Before Stora Sköndal closed down I was seeing Anders Rehnström. I really liked him as a clinician, what if got to see him again...

I'm so sorry to hear they are still suffering from Postcovid:(. I think the info and links @mango has shared are great and can't think of anything to add. But then again my brain is so scrambled from Post-covid :confused:. I do emphatize deeply with your family, me and my mom also still have...

Wow, so now they just lump ME/CFS, post-covid and burn-out together? What looked really bad to begin with now looks even worse. Or is it perhaps better for us that the studie refers to 'long-term complicated fatigue' instead of ME? (although ME is seemingly (mis)placed under that very...

This was disappointing though: "The ME clinic does not offer treatment or rehabilitation. After investigation and referral response, the patient can be followed up in primary care"

It's a shortened and translated version of this article from September 19 (pay walled) https://www.dagbladet.no/tema/me-forskere-har-funnet-tre-undergrupper/74229259 Translated excerpts from Expressens article "Ny studie ger hopp för ME-sjuka: Stort steg":