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Thread here: https://www.s4me.info/threads/european-me-coalition-me-cfs-pledge-for-the-2024-european-elections.38784/

Lovely to hear from you Ian. Best wishes to your mother. Well done with the fundraiser.

And attribute that absolutely zero abuse to the disclaimer/warning? Seriously, of course no online seminar that invites audience participation should put up with abuse, but I think this is the first time I've ever seen such a warning. People running the zoom can cut anyone off if they want to...

Some posts have been moved to: Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024

Is this normal in webinars like this, or is it specially inserted because of mythology about abusive pwME? It seems to me to be pretty insulting that they feel they need to include such a statement.

They surely will have seen our letters and are free to read this thread.

Every pwME's efforts at pacing is a research exercise carried out by the pwME as we navigate every day's activity and rest. All I'm suggesting here is adding more information to that research exercise to enable us to learn what we find works best given our individual disease and life situation...

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The items in the S4ME Science library are getting out of date as we haven't had any volunteers to update it for several years.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