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Signed but signatures still low at about 4346 . What is the reason it is attracting so few signatures?

I think this is one way in which individuals with ME could do more. I think there is a limit to what group campaigns and especially template letters can do so imo individuals need to be in touch with their own individual MP. However hard it is for our energy levels and brain fog, it just needs...

I too am disappointed to see Nicky Morgan is standing down. She has been very supportive of pwme in the Parliamentary efforts of the last year or two. She has also responded to letters written to her by non constituents about ME including from US if I remember correctly. ETA: ‘about ME’ added...

Tried my pulsox for 10 minutes this morning. O2 level varied between 91 and a brief 95, mostly settling at 92. Lung tests earlier had shown no problem. Cardiac team was not unduly concerned. Two normal ECGs last week. Still breathless when in pem but possibly slightly improved from its worst...

It’s good to hear that your CT scan was clear @arewenearlythereyet. That must have relieved your mind considerably but sorry to hear you are still troubled by deterioration in recall. I can relate to the change in symptom pattern. Am not convinced that my energy envelope is lower overall but...

Unfortunately I was too ill to make the journey this weekend. Bedbound while waiting for some scans. I look forward to reading how it went. Disappointing not to hear David and see the S4ME members.

@NelliePledge - of course.

My memory has become very significantly worse this year but I can’t remember an example to give you. I only realised how different it is when, in trialling LDN a few months ago, I suddenly had two afternoons of clarity. The dose was tiny but, in talking to a friend, I was able to access my...

There is discussion on the other forum about the metabolic trap for anyone wishing to pursue it. ETA:https://forums.phoenixrising.me/threads/search-for-a-biomarker-ron-davis-interviewed-on-me-cfs-alert.77687/

Also responding to @rvallee ’s post For those who (have to) attend hospital alone, I hope that the guidelines review committee could discuss the probable effects of this on the patient and consider what adaptations could be made so as to make the consultation more effective. Maybe pwme could...

Thank you @BurnA . As a non scientist, I find it all very difficult. I don’t think the OMF symposium a week ago talked about the “ metabolic trap”. If they are still working on it, it would have been interesting to hear.

Anyone able to say anything about “ baker’s yeast”? Dr Davis was starting to talk about this when Llewelyn King asked him about the NIH. About 18 minutes in. Baker’s yeast? In research. See below. https://en.m.wikipedia.org/wiki/Baker%27s_yeast#Use_in_research Subject was changed to NIH...

There seems to be an unwritten convention that you don’t talk about the ‘not nice’ parts of life. I do post about ME on an ordinary fb page but ‘ likes’ are few or nonexistent.

Do we know why he didn’t present at OMF symposium? What was he supposed to present on?

That’s what I remember of her talk but see @Sing ’s post on the other thread which seems to dispose of this idea. ETA:#87 https://www.s4me.info/threads/3rd-annual-community-symposium-on-the-molecular-basis-of-me-cfs-at-stanford-university-sponsored-by-omf-7th-sept-2019.9297/page-5

Am feeling confused now. Is the utube available yet to relisten to Dr Hanson? She was early in the day. I remember the virus statement too. Were you able to discuss this with her @Sing? Eta: I seem to remember Dr Davies saying something about how straightforwardly Dr Hanson spoke or something...

@Sarah94 See above for details on SS19 and 31. Thank you @Stuart. I need to read carefully but would be glad of any summaries.

There are other posts saying SS31. I didn’t stay up late enough to hear this one but there’s a bit more detail on this tweet so I included it. I googled SS19 + heart failure but got nothing.

They are 8 hours behind us, started 9am, 5 pm our time. I think it is due to run till 5pm, 1am our time.