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Thank you David! I think social media has changed a lot. It’s very scattered and doesn't have the same reach anymore, so it's less likely people hear the news about a crowdfunding going on. Maybe that could explain some of the slower pace.

"A central symptom in the debate is “PEM”, post-exertional malaise. This is often cited as evidence that ME is a unique biological disease. The reality is different. PEM is reported in a variety of conditions, including fibromyalgia [7] [8], depression and in healthy individuals [9]. Recent...

Nice! Your way of speaking is very comfortable to listen to. And the tier format, which I’m used to seeing cover the interests of “the real people” out in the “real world” made me feel a little bit like my life and the thoughts I have on a daily basis can also be casually, unapologetically a...

It is always about how wonderful it is that it's "easy and cheap" (I assume it's a key requirement to get research funding). Effective isn't important, just cheap. I just watched a video from a silly norwegian insomnia trial and they went on and on about how it's very cheap, very easy to...

Thank you from me too. I've been too brainfoggy to be able to comprehend or read much here for a while. When I saw a social media post that s4me had written a letter to cochrane with a petition it felt like that moment when Gandalf comes to aid at the end of two towers. Such a relief, and a...

Your work with posting on social media through the years is really wonderful, @Tom Kindlon. Thank you!

From listening to LP practitioners, my understanding is that the goal of the LP is to give people hope, a new way of seeing their illness and symptoms, and a curative placebo effect. And the true illness of people with ME is that we believe we have an untreatable illness. So wouldn't a...

The report on women’s health has been published by the committee now, and I see that Silje Reme is one of several people that were invited to have presentations for the committee. Reme’s talk was on «sex/gender differences in pain». I can’t find any information on the presentation. I wonder if...

Tweets by Fereshteh Jahanbani about antiphospholipid syndrome and ME.

The authors start out laying down some expectations for what the participants’ stories will be: profound and meaning-making. And this is perhaps what is expected to be the moral of the stories of ME in adolescence? Then they compare the participants stories, and analyse their storytelling...

In a podcast episode after Eia and Steinkopfs debate on the news, they read an email from a follower who says Eia ‘let himself be bossed around by an assertive lady with ME’. Sagen says he has a gift for Eia, and introduces psychology professor Silje Reme as a guest. (Reme organized the recent...

I really don’t understand why Eia is on the Women’s Health Committee. It feels like when the government decided to make the national competence service for ME, only to employ people that has no competence. Or how the Norwegian prime minister has written a preface in Live Landmark’s book about...

You have such a talent for making these videos, Adam. Thank you so much. I remember looking for informative YouTube videos on ME when I first got diagnosed, and finding very little, just something about trying mold avoidance and other things I could not make sense of. I wanted to find something...

Since it's listeded under predisposition factors I understand it as a hypothesizing that over exertion leads to ME. I wish they would stop mentioning personality as the only factor that could make someone over exert themselves. It's so removed from reality, and contributes to stigma.

Patient feedback isn't a bad thing.

I always find it weird to single out type A personality as the main thing that would make someone overexert themselves. If you're talking about children with ME, then it is not their personalities forcing them to school, it's the adults around them. How far a child will push themselves to get...

Publishing a book during a pandemic that comes across as mocking vulnerable people that have to be careful and shield themselves is an... interesting choice.

The type of trope above makes me feel like people think disabled and sick people having needs, like door openers and being careful about viruses, makes us rude or cruel, because we «impose» those needs on others. This extreme, exaggerated way he is behaving is how a lot of society feels about...

There were so many parallels between the way they are treating insomnia patients and the way ME patients are treated. They talked about how there are factors that trigger insomnia (illness, crisis, side effects of medications) and then there are factors that maintain insomnia, which is worry...