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Fatigue is what I felt when well after a long hike, dancing all night or being up several times a night feeding a baby or caring for a sick child. Everyone experiences fatigue. Such fatigue doesn't prevent doing it all over again the next day and the next day .... ME/CFS fatigue is different...

I think 2 weeks after I filled it in. Not sure now you ask.

I beg to differ. there are real risks that partipants will feel inadequate because they can't figure out which option applies, that they will be dismayed at the lack of understanding of PEM, that they will be horrified by the inappropriate and ambiguous options offered and so on. As it turned...

Since there is no questionnaire we've seen so far that distinguishes whether people with LC experience PEM, as some do and some don't, this seems to mean they are muddling together pwME and pwLC who may have completely different conditions. Does this matter? I don't know, but it does add to the...

The Partipant information sheet pdf is dated 13th October 2023, so it's possible I read it when we did the first questionnaire. If so I've forgotten. That first one, TIMES was a symptom list, so not too awful. We only realised how off beam the project was heading when we saw the second one...

Has anyone had their email inviting them to have a second go at the activity quesionnaire that we did the first version of 2 weeks ago? I've been looking for the first time at the patient information that was linked from the first version and wasn't, at the time I did the questionnaire, available.

Many thanks to John and @Catherine Ashenfelter for adding The Grace Charity for M.E. to the list of organisations supporting this campaign.

That their GP, primary care practitioner will have misdiagnosed them with depression, anxiety, 'we all get a few aches and pains, there's nothing medically wrong', burnout, and offered antidepressants, told them to buy some vitamins, told them to try to get more exercise, go to the gym, try...

Fantastic. Welcome to another 6 months of bashing your head against the BPS wall, @dave30th.

Thank you for continuing the conversation constructively. I'm sorry if my reaction seemed dismissive. Give him time. It's possible, especially if some researchers and clinicians with experience of ME/CFS like Todd Davenport continue to challenge the effort preference thing. He may come to his...

Thanks, @Braganca. I hope you're right. The problem I see with moving on from the problems with the Walitt Nath study's conclusions is that they are not going away. If they are allowed to be the key people at NIH deciding on ongoing studies funded by NIH some awful dross will continue to be...

Crossposted with Ravi's latest post. Are people 'harping on' about the intramural study? I'm a bit out of touch with what's happening. If so, which people? ME organisations and individuals are and have been for decades pushing for more funding. I don't think it's either/or. The BPS people...

I don't think that's a good reason for stopping funding such research. There's so much more that could be sensibly explored, including replication of small promising studies that were too small to stand on their own.

$63,407 97% of the goal and 2 days left. Looks promising.

I certainly agree that their own intramural studies led by Walitt and Nath are a failure and should be discontinued. They have shown themselves unfit to research this area because of prejudices about 'effort preference' and worse. But does Nath also have any say over the amount or direction of...

@cassava7 I'm so sorry to hear you are continuing to have such a difficult time. I wonder whether this post is of any use to you and your doctors: https://www.s4me.info/threads/gastroparesis.3476/page-2#post-535089

@MelbME are you likely to test a comparison group between intravenous delivery of saline etc and the equivalent quantity of the same solution orally? Is there something specific about bypassing the stomach and going straight to the bloodstream?

Good. He had definitely gone rogue some time ago. I could never understand why Karl Morten thought he was a fit and proper person as a research colleague.

Serving up a load of balls. Crossing the line. Underhand...