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I generally prefer not to donate directly to ME research, but to do it through a charity which has a vetting system to decide which research is worth funding. I'm not surprised Morton has trouble getting direct donations.

I watched Caroline Kingdon who talked about her experience of visiting people at home who are participating in the ME Biobank. She was excellent on the need for the clinician to listen and be adaptable to the pwME's needs and limitations when designing and carrying out research. Very good talk...

I have watched the first 2 talks. Sarah Tyson's section on her team's development of PROMs she said she expects the 3 tested so far on symptoms, PEM and function are expected to be useful for clinical trials. She talked a bit about them in general terms about reliability and validity and the...

I have signed up to attend. If I manage to work the technology, I intend to watch and listen to some of it, but not try to take notes or ask questions

Crossposted with Hutan. Huge sympathy to those with awful ongoing symptoms. For those dreading it, a bit of hope is that it's not so bad for everyone. I am one of the lucky ones with menopause. Last period age 44, hot flushes were just waves of heat that happened up to several times an hour...

I think we need to be careful in our criticisms of use of feedback, because we don't know what changes Sarah Tyson's team are making to their PROMs following feedback from the thousands who have completed the questionnaires, people writing to them, and comments from people here and on other...

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.