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@Trish your answers to the questionnaire were so satisyfing to read! I hate answering questionnaires. It takes so much brain power to try to avoid all their traps of manipulation and misinterpretation, and then they never allow the patient to actually convey the important things anyway. Right...

Following their weird logic, wouldn’t the fact that they are warning against fear because it makes you ill also be making people ill, because people will start to fear having illnesses caused by fear? If I were to take them seriously, that just worrying about something will actually make it...

[An attempt to translate by a very brainfogged person who finds the writing in these emails quite incomprehensible. :oops:] Email from FHI (national institute of public health) to Henrik Vogt. FHI has established a national knowledge program for covid-19, as comissioned by the ministry of...

Wonderful idea, @Wyva! I hope you will soon see lots of ripple effects from the important advocacy you're doing

I had a similiar conversation with a psychology student. She told me about a subject she was studying that semester called ‘treatment research’ (norwegian: behandlingsforskning). In this subject she had learned that because psychologists fight to have the same authority as doctors, they make...

So beautiful they hurt. Thank you for sharing!

I had to laugh when I read in the ministers reply: "You must be met with respect and understanding from the health care service" Yes, we know that we should be met with respect and understanding, but we aren't. It's like they are admitting that we are abused, saying it should be better, and...

I have no trust in St. Olavs on this, and I wish it was a project at Haukeland instead. My experiences with St. Olavs hospital as a ME patient has been awful. I got diagnosed there, once as a teen, and then had to be diagnosed again after 18, because apparently you can't keep the diagnosis...

I have this too. And many other things described in this thread like adrenaline and conversations with laughter. I know ME patients symptoms and experience often vary from person to person, but it always strikes be how similar our experiences are too, down to very specific details. I'm so sad...

Wow these are beautiful! Thank you for sharing @Simon M

Me too. It's hard to understand this is a concept anyone ever believed. If anything, the ability to feel pain seems even more useful for infants that can't use reason and experience to predict if something will damage them or not. Did they think children spontaneously gained the ability to...

I hope I don’t catch a virus right now on top of being very bothered by this article, cause we humans are so fragile, we can’t handle being bothered by things.

The LP coach they used in this trial has this on her website: On her linkedin the bio says (google translate): I didn’t know it was legal to claim the LP is effective for treating diseases.

“Prior to attending the three-day LP course, the participants had a telephone conversation with the course instructor to clarify any issues they might have and to allow the instructor to assess whether they were sufficiently motivated to proceed with the intervention. The latter was based on a...

Thank you @Parsnip for sharing. It's so important that stories like this are heard. I admire the strength it took to get all this down, and all the details you remember. It really means a lot to me to hear your story, I felt so lonely for so many years because all the stories I heard about LP...

I don't understand how in any way a committee can prevent a ME patient being harmed by this trial. The harm is done from the moment they are told that they "chose to have ME" - would the committee have stepped in already in the first minutes of the course? What good is a committee when patients...

That's his point in his book, that psychological therapies actually can cause harm, but that many people are reluctant to believe this. I read his book once it was announced that he would be involved in the LP study, and he goes into detail about many ways of how therapy can harm patients, and...

I'm happy this was said on the air. I'm so tired of this idea that researchers are being scared away because a level of quality is expected from science. Nina E. Steinkopf did so amazing, I was in awe of her watching it yesterday. Thank you for the transcriptions @Kalliope

Saw this article appearing on reddit r/all today with 46K upvotes. UPI: 'Brain fog' can linger with long-haul COVID-19, study says I'm too brain fogged to read the article, but it mentions ME/CFS The top comment on the reddit thread, with 3,7K upvotes, says how sympotms of long-haul COVID are...

Donated. So grateful for Keith Geraghty's work and for continuing to work on ME. Thank you! 82% now