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I’ve had a couple of days now spontaneously walking a lot more and feeling really good doing it, even pushing a stroller around the neighborhood. I should have known I would wake up with a heavy cold today! This is the third time I have had two days of spontaneous remission only to be hit with...

Storla is a good choice. I’ve seen him and he gave me a very thorough evaluation and his detailed report was central to getting my disability pension without any extra trouble. He knows ME and he knows the system (the right words and phrases to use, etc.) and while he is helpful to patients he’s...

That sounds closer to my onset experience. 8 weeks with intense flu like symptoms that gradually became something less intense but very reactive. For the next six months I would sweat so much at night I had to wear full length cotton pjs that I could change for fresh ones once or twice every...

I don’t think there will be a choice but who knows by that time maybe there will be. Right now it’s mostly Pfizer, but as far as I know the first Moderna batch just arrived and there are others lined up I think.

I’m getting it as soon as I can. ATM I’m pregnant and not eligible, but by the time they get to my age/risk group I should be at least 2 months post birth and they do recommend it for women who are breastfeeding. By that time I’m sure we’ll also know more. I get the flu shot every year and made...

I’m female. I have never had one, before or with ME.

Same experience here. I was fairly newly diagnosed when I tried rtx and extremely hopeful, especially during early summer when I felt a bit better (I didn’t know at the time that this is a part of my yearly pattern). In spite of all that I quickly realised it wasn’t doing anything at all.

So happy for you, @Jessie 107 :):hug:

If you go to the first post in this thread where all the sections are listed and linked, you can see that the last section linked to is something like comments from experts. JE's is the first one.

I am genuinely looking forward to seeing Vogt’s reaction to this. He won’t be able to stop himself from digging even deeper into his already ocean deep hole of unscientific bs.

WTAF

Donated. Not sure I would be able to this time, but luckily I overestimated some expenses this month and it turned out I had more wiggle room then I thought :)

Agree with the comments above re: sample size and methodology. I do however appreciate the effort to narrow down possible explanations for the increase in lactate. I wish more researchers would do this type of work (and do it better).

From 2003, but this abstract summarizes some of the ways extracellular ATP works particularly in connection with the nervous system. From the article Extracellular ATP and Neurodegeneration.

@adambeyoncelowe I don’t think Trude Schei checks the forum very often. You could also try reaching out directly to the Norwegian MEA through post@me-foreningen.no At the very least they will know if there are plans to get the report translated or not.

I donate a monthly sum to the national ME Association and/or their research fund. Every now and then I additionally support other fundraising schemes that I deem worthwhile. Until recently my monthly donations have been modest and I have felt it was necessary to direct them towards either...

Me too. This was a huge problem for me in the first year or two of being sick, especially at night. It slowly got better as the illness ‘settled’, but returns with PEM.

The survey took me about 20 minutes. Most of it is dedicated to open and ended questions and free form answers, with multiple choice questions towards the end that cover much of the same ground. It was fairly easy to do. The main topics are why you have decided (or not) to have children while...

I’ll give the survey a go tomorrow and report back :)

LDN was mostly helpful in reducing chronic, vague neurological pain for me. It might also have expanded my energy envelope a tiny bit, but then not feeling like every nerve ending is low key burning all the time would probably do that too! I started slow and built up. The first 10 days or so...