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I have now been doing alternate day fasting (36-40 hours fasting then eating normally for a day, rinse and repeat) since February with a couple breaks of a week or so. It is something that has really worked well for me. I’m losing a bit of weight which I wanted. I also generally have more...

I think @benji mentioned somewhere that they are trying to make a live stream available?

Possibly. I didn’t get any side-effects. The saline and the cortisone I got with the rtx helped tremendously in coping with the stress of the treatment (full or half days at the clinic) and especially the long trip home (by plane). But those effects would always come to an abrupt stop a few...

You get saline with the rtx, too.

@Dechi Fast went really well for about 44 hours, after that I started getting the slight stinging feeling in my muscles that doesn’t feel right somehow. It could be nothing, but it’s something I never experienced before ME and obviously I don’t want to take any risks. I carefully eased back...

I don’t think that came across right in the translation, they use something closer to poles (on a spectrum) in the article. Still didn’t like the article, as others mention they try the typical “let’s all find common ground in the middle and then no one needs to argue” point without actually...

I will try to remember, tag me next week if I forget;)

Before ME for a variety of reasons I did longer water fasts of 3-10 days several times with little trouble other than the expected headaches and lowered blood pressure. Maybe a day or two where an old injury would be aching, probably from being more inactive during the fast. The hardest part...

No, though I would have used ‘exhaustion’ rather than fatigue. So not great that they equate PEM with being fatigued.

Thanks @Kalliope I didn’t have it in me to collect all that today so very glad you did!:thumbup::)

@rainy you can try reporting it to the new service Ukom (ukom.no)

I would add the myth that it usually “burns out” after a few years, meaning essentially no point doing anything as it will sort itself out in time. ETA: I wonder if this started because that’s about how long it takes patients to give up trying to get some help and stop seeing doctors, or get to...

I'm still waiting to hear back from the neurologist, and having finally seen the images myself I'm wondering if it's taking so long because he needs a second opinion. I am obviously not a professional and I could be totally off the mark here, but to my eyes I would qualify for a Chiari...

It can take years from first onset of symptoms to a definitive diagnosis. So you could have a clear MRI, get a diagnosis of ME/CFS and then attribute weird symptoms to that and not get another MRI for several years.

Just got back from my appointment. The neurologist was respectful and took me seriously. He was mostly interested in the headaches and any signs of hypermobility (I do have some but not much). I wish I could have talked more about breathing issues as that is really bothering me, but I was too...

Besides, there’s already one well underway in Norway so one would think waiting for those results first could save a lot of potentially useless spending.

I'm seeing the neurologist on Wednesday. For once I'm not planning to rest up before I go, in the hopes of presenting a more accurate picture of my health. Typically when I see a neurologist they will tell me my reflexes are just a little slow, but that is always on a good day. This time I have...

What is the clinical trial?

Breen means “the glacier” in Norwegian for anyone confused by the first sentence :) :p

Not eating dairy is the only thing that seems to help for me. Not that I’m very good at that!