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I think MEPedia is fine for historical information, but all the sciencey bits should be removed if no one is updating them.

I think I would have found it very helpful when I was newly learning to cope with symptoms and crashes and still working part time. It might have been possible to have objective data both to demonstrate to my disbelieving employers and doctors (and even some family and friends) that my activity...

People with other chronic conditions such as asthma and diabetes are self monitoring and recording data on apps which help both with the patient managing their symptoms, and their data is accessible to their doctor or specialist nurse in real time. That should be possible for pwME too.

Crossposted with Adrian. I think Adrian's idea is worth exploring. It wouldn't necessarily produce a long readout, rather, if I understand it correctly it would also include analysis of features such as connections between activity, medications, symptoms and signpost patterns the pwME might not...

The items in the S4ME Science library are getting out of date as we haven't had any volunteers to update it for several years. So maybe not the best source of reference.

You've lost me. Can you explain? What is Sb? Are you suggesting these quack therapies are useful or what?

Interesting. Mine is quite different, headache, nausea, dizziness, fainting, inablity to eat, plus all the usual symptoms ramped up etc.

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...