- Joined
- Sep 5, 2020
- Messages
- 3,160
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
tormodg, I'm sorry this happened. The rules and their varyingly strict implementation differ, and are different here than everywhere else, so that takes some getting used to. The reason seems to be a certain fear of spam, which there has been more of than elsewhere off an and praps due to being fully public.
On the other hand if you stay here with interesting contributions, you'll have a lot of listeners, some of us very active.
In my experience this is the best place for that sort of thing, despite the shackles.
Other places have less listeners or less interested in science. That may be due to the type of moderation here.
Although it's a bit tedious, this is the form we can use to refer to something:
Just copy the plain name/title of the webpage. In your case probably:
"Dr. Alain Moreau Updates on ME/CFS & Long COVID Research! May Momentum Tuesdays 2022"
Further papers are coming up, but this is one from 2020 on pubmed on the microRNAs (miRNAs) he is referring to:
"Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology".
The background is complicated, but the miRNAs can perhaps be used for finer diagnosis and can perhaps be influenced by diet, meds, exercise and oxygen (he doesn't expand on that, and it's nothing new that these are good to try / trial). But to me it seems a long way off. Especially as these miRNAs are mainly being studied as biomarkers for ME/CFS, whilst there already are about 10 ideas for biomarkers of FM, but they're all not helping.
Precision / personalized medicine is obviously part of the future.
It's strenuous to watch as he has a strong accent, making English subtitles necessary, which are often wrong.
At minute 9 he talks about a massage cuff as a stress test, so monitored at home, but for a week (5 days).
At minute 12 the influence of miRNAs on POTS (heart & circulatory issues after getting up or standing too long)
At minute 18 they start about Long-Covid. Interesting for me there was him saying that with the variants of the moment, 10-30% might get Long-Covid and 30% of them might get ME. Due to quicker Covid-treatment, that ME-% might be decreasing.
At minute 27 that 30% of people got ME-remission after the vaccine for several months, 70% got symptoms exacerbated for a few weeks.
I'm interested in this, because fatigue has become by far my severest symptom, since getting local pains down to zero and now having got jab-induced MCAS. I don't seem to have enough CFS-symptoms, but he is saying P.E.M. post-exertional malaise is a hallmark symptom, and I definitely have that. What confuses me is that the expression P.E.M. is used specifically for ME/CFS, but fibromites also get fatigue when they overdo it, so I'm not sure of the difference and why PEM would be a hallmark symptom only for ME/CFS. Any ideas or help on that?
If you do decide to take your findings elsewhere, please PM me where, I'll be glad to have a look and comment.
On the other hand if you stay here with interesting contributions, you'll have a lot of listeners, some of us very active.
In my experience this is the best place for that sort of thing, despite the shackles.
Other places have less listeners or less interested in science. That may be due to the type of moderation here.
Although it's a bit tedious, this is the form we can use to refer to something:
Just copy the plain name/title of the webpage. In your case probably:
"Dr. Alain Moreau Updates on ME/CFS & Long COVID Research! May Momentum Tuesdays 2022"
Further papers are coming up, but this is one from 2020 on pubmed on the microRNAs (miRNAs) he is referring to:
"Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology".
The background is complicated, but the miRNAs can perhaps be used for finer diagnosis and can perhaps be influenced by diet, meds, exercise and oxygen (he doesn't expand on that, and it's nothing new that these are good to try / trial). But to me it seems a long way off. Especially as these miRNAs are mainly being studied as biomarkers for ME/CFS, whilst there already are about 10 ideas for biomarkers of FM, but they're all not helping.
Precision / personalized medicine is obviously part of the future.
It's strenuous to watch as he has a strong accent, making English subtitles necessary, which are often wrong.
At minute 9 he talks about a massage cuff as a stress test, so monitored at home, but for a week (5 days).
At minute 12 the influence of miRNAs on POTS (heart & circulatory issues after getting up or standing too long)
At minute 18 they start about Long-Covid. Interesting for me there was him saying that with the variants of the moment, 10-30% might get Long-Covid and 30% of them might get ME. Due to quicker Covid-treatment, that ME-% might be decreasing.
At minute 27 that 30% of people got ME-remission after the vaccine for several months, 70% got symptoms exacerbated for a few weeks.
I'm interested in this, because fatigue has become by far my severest symptom, since getting local pains down to zero and now having got jab-induced MCAS. I don't seem to have enough CFS-symptoms, but he is saying P.E.M. post-exertional malaise is a hallmark symptom, and I definitely have that. What confuses me is that the expression P.E.M. is used specifically for ME/CFS, but fibromites also get fatigue when they overdo it, so I'm not sure of the difference and why PEM would be a hallmark symptom only for ME/CFS. Any ideas or help on that?
If you do decide to take your findings elsewhere, please PM me where, I'll be glad to have a look and comment.
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