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As I have followed this thread I have not noticed many 'improvement' cases following the vaccine. The Healthrising poll suggests 23%, 184 improvers with ME/CFS/FM as of today. At 23% I would have expected to hear more reports of improvements. I have had both Pfizer shots now (second about 3...

After initially thinking that I would wait for the vaccine or not have it due to risk of vaccine flare up I changed my mind. Anxiety over family who suddenly entered an 'I'll be ok' mentality plus my husband being placed accidentally in group 6 made me realise the mental stress of not having the...

@Simon M not necessarily existing registries or data but thinking specifically to the Decode ME study. 20000+ are about to receive a questionnaire which will include validation questions for enrollment. This is a huge sample base that could collect some other epidemiological data. Clearly...

Thoughts A life expectancy for ME in the mid 50's (3 studies?) many pwME onsets 1980's and earlier have died Time lag for diagnosis and engagement with right areas of support can be several years hence 'tail off' post 2013 (IOW many are still awaiting diagnosis and would therefore increase...

I have little clue about immunology but here are some links to save time. InvestinME posted the Medium article of their FB page a couple of days ago. Specific mention of MECFS at the end. https://elemental.medium.com/how-vaccines-might-improve-long-covid-c1f41c4d7378...

In 2018 as records came online via Patient Access I found ‘CFS’ listed as minor symptom (past). I asked my GP to amend this. So important that pwME check ME CFS hasn’t been relegated to a prior condition. No record except random tests for GI, ECG etc. No meds except sleeping tablets. Mainly...

With the poor understanding of immune effects with ME my view has been to avoid vaccinations. I don't see too many people. My healthy early 60's husband was offered a free flu jab. I answered a questionnaire the other day on this, ticked the Neurological illness option and it wasn't sure that I...

BBC video with Dr Shepherd saying LC and ME not the same. As per the above comments, how can he be so definite? Or was there some BBC editing? In ME Essential Magazine P4, he writes under the subtitle post/Long Covid is not simply the same as MECFS " ..some people with Post/Long covid have an...

Trazodone helped for 6 months then stopped. Even with a break there’s no effect now. Any thoughts?

Sleep score measured by a wearable HRV (I use App and phone camera) Hours of upright activity (can also be measured with a wearable) Cognitive challenge test The first two I track and do seem to correlate with my better/worse days and are not open to bias or require lengthy questionnaires.

Context P71 Draft “11 are not clearly defined. There is little pathological evidence of brain inflammation” Is there a study due out from Watanbe this year? What a lot of reading and wondering how this will translate into a change of care in real terms. But my first reaction is it’s a lot...

Many US patients still face huge issues because the changes from 2017 haven’t filtered through. Compulsory Medical training is essential. Media coverage essential. Will the so called CFSME specialist clinics be handing the Psychs their P45 in April?

After 6 months of Keto I experienced some benefit but not enough. I know children with epilepsy can tolerate this for quite some time and the benefits are profound. A lot of suggestion in scientific community that there are long term risks but quite honestly it's so poorly researched I can't be...

https://www.healthrising.org/blog/2019/06/15/emerging-insights-mcgregor-metabolism-chronic-fatigue-glycolysis/ Hypermetabolism A section on 3 different glucose responses (n=777) seen in pwME. Implication that Creatinine being used as fuel substitute hence low urea and creatinine values seen in...

Interesting presentation, surprised at level of energy expenditure in digestion. Such a different message from what we are taught in UK, in some ways good but in other ways pretty depressing. "Walking contraindicated" says Mark near the conclusion due to time involved more than actual HR.

For me NAC has had a hugely beneficial effect on the 'wired and tired' insomnia. It was the insomnia that really pushed me to my wits end so I'm positive about it. I have to watch my glutamate levels. My spreadsheet of self experimentation of strategies continues to grow and some things that...