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Very exciting to finally be able to investigate if long lived plasma cells are involved. I remember discussing this with @Jonathan Edwards at the old forum. What do you think?

If I were to add a point of caution regarding using steps (which Im a big advocate for together with SF-36), it would be that it is still possible for many ME/CFS-patients like myself to walk 6k steps each day, but with progressive symptoms. I often walk until I almost can't stand anymore, and I...

I only had a very mild flu. I coordinated a group for people taking it privately. It was my impression that the side effects people reported actually were PEM due to overexertion cause of travelling.

Haha. The problem with Cyclo is that it's not a cure, so patients would relapse. I would guess you can't take Cyclo for many years before it starts causing some serious damage, not only to fertility.

I dont disagree. If I were to guess the results weren't convincing enough as well.

Yeah, they didn't want to do a double blind trial because they thought the reported side effects seemed too big, especially concerns about the effect on fertility if I remember correctly

The paper is published now by the way for those that didn't know

Ive done it two times with a local anaesthetic, and it was ok. Without the local anaesthetic id imagine it would be horrible just by the sounds i heard haha. The first time they found some dysplastic cells, and the second time apparantly not. Ive always wondered if the dysplastic cells could...

PACE yourself, LIFT is coming.

Its hard to do when the psychosomatic-lobby has destroyed the public perception of ME/CFS. Also theres no sense of urgency for the politicians. Ok, people are tired - so what? People dont understand the insane symptom burden ME-patients have to endure.

Its quite remarkable how little worthy research OMF has managed to publish taken into account how much funding they have gotten. People would be better of funding Fluge&Mella who actually tries to find treatment within our lifetime. They do good research as well, and most importantly; they...

@Jonathan Edwards Do you have any thoughts about this research?

You`re right Simon, most of the research is pet projects for funding, and few seem to actually try to find out anything plausible. My main hope for a long long time has been the research at Haukeland. People are sleeping on their work. Their findings on circulatory dysfunction are consistent...

Another paper claiming effect when there is none at all

This is a ridiculous take in my honest opinion

The idea is that long lived plasma cells are involved (I dont know how effective Daratumumab is against them specifically)

I didnt, but the problem has just disappeared. I rarely get it now

This is actually a good point you raise here. Because there is a difference between the intensity of PEM I can get on any given day after doing too much, and the reduced function i may or may not get the next day doing the same. If I wanted to study PEM, I would definetely do it when I get the...

I dont understand how one can look at this negatively, and I dont personally see the relevance of your points either Ash. Its a friggin charity concert for ME/CFS, with Chris Martin. That's awesome, end of story.

I know, but they didnt use 15 years to start a phase 1 study. Hopefully something good will come out of all the funding to OMF, I`m just saying im starting to get skeptical.