Hi from Norway

JayCS

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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.
 
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fimi

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On the other hand if you stay here with interesting contributions, you'll have a lot of listeners
I agree with @JayCS, I for one very much welcome and respect your knowledge and views @tormodg, as everyone elses. I do hope you stay as all our experiences can benefit each other, and you will find lots of support on here. Anyway, all that talk of music has got me playing old songs again. It's funny how music can have such an effect on you.
 

Ketch

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Yes, please, do stay! (And belated Welcome!) Nowhere is perfect but at least we have the capacity to truly understand you. That makes it better together, I think...
 

Badger

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It's painful having to try and adjust as playing music gets more difficult. Stopping altogether once it gets too much to cope with is an awful bereavement. It took me many years to accept it and give some thought to how lucky I was to experience it. A bass player I clicked with is still a close friend.

Jazz is fascinating and something I've been listening to more of. It sounds like you have played some interesting gigs. Most people would like to play music, but those of us who have know the incredible feeling that takes you. Hopefully your doctor will be supportive with the application for disability benefits. Atb
 

sunkacola

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No, it was a very interesting link to a new video from Open Medicine Foundation discussing an innovative method to distinguish between ME/CFS and Fibromyalgia in order to provide better and more correct care.

@sunkacola I did read the rules and it said «do not post frivolous YouTube videos» and I explained in my post why I posted this one - and it was posted in the «research» category because it is fresh and important research.

You could have sent this message as a PM. Hanging me out to dry in this thread is not nice.

For the interested it is on the Open Medicine Foundation (OMF) youtube channel.

I could have contributed with interesting content here as I watch a lot of relevant science research. I’ll take it elsewhere.
Very sorry that you took offense, tormodog, as that was not at all my intent. I certainly did not intend to "hang you out to dry", and I have often mentioned on the public forum that a post's contents were deleted and why. This serves to let others know the rules as well, and is not personal.
I only mentioned it here because you had mentioned here the video you linked to in your other post. You did explain why you posted the video, and thank you for that. However, it is at the discretion of the moderators what we permit to be posted and our rules are there only in the interest of protecting everyone on the forum.

You are most welcome to mention things like that, though, and it is easy to do so within the rules by simply writing: " On YouTube, search for the title "interesting facts" " ....or whatever it is. that way people can go to the site themselves and there are no risks. This also applies to articles you read and want to share. Rather than posting a link to it, tell people how they can find it through their own search engine.

Everyone here benefits from shared information and we welcome and encourage that, while keeping in place rules that we have learned we need to have in order to protect our members. Thanks for your input.
 

Auriel

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Does taking it elsewhere mean your leaving us? (I hope not) I think we have to type the link as it would be as a google search (I did it with a YouTube video once) something to do with outside links? Hope you stay, I can ask more about the band your were in (then donate again for asking more non fibro questions)
😄🎶😄
 
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tormodg

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I ran a pretty large science forum in the past and I recognize the problem with spam and hot-and-run posters @sunkacola. But I think moderation by denying all video as a content type is a questionable move as so much useful content nowadays is published as videos on various platforms. YouTube has been huge for over 15 years now and it’s not going away. Making people write «search for» posts limits the ease of communication for a lot of us.

You’d think that in a world of interconnected content, a forum would want to build up a great repository of relevant links and videos in order to be a great resource for patiebts like myself, rather than try to be an unconnected island.

I won’t even attempt to change things here though. But I can at least say something about how I use YouTube etc, and why I think it is important.

For me, YouTube and similar video-based platforms are lifesavers. My illness makes it hard to read (and often write). I watch quite a lot of science and technology channels, and try to keep up to date on scientific happenings (like the imaging of Sagittarius A*, the black hole at the center of our galaxy, which was announced yesterday).

I used to review popular science books on radio for the National Broadcasting Corporation for many years. I did about 100 such reviews between 2002-2010. I love reading science history, discoveries, biographies and technological innovations. I am particularly fond of physics, mathematics and cosmology. (And with a Bachelors degree in performing arts, I had very little of that in school). I also like art and art history.

Now I consume most of that content as videos. I find it very hard to read, particularly advanced content which is hard to comprehend through the «fog». If I read a history book, it takes forever to read a page, and on the next I have mostly forgot what I just read. It is quite annoying, not to say extremely frustrating for a book-lover.

However, with online video, I can consume interesting content in bite-size chunks whenever I feel like it.

One thing I particularly like, is to watch lectures like the Royal Institution’s lecture series on YouTube. There is simply amazing content from some of the greatest scientists and thinkers in the world.

I also watch a lot of arts content like the National Gallery in UK which has an incredibly good channel.

While there is a lot of junk on YouTube, I have spent a considerable amount of time identifying interesting channels over the years. I still discover wonderful content creators every day.

I actually learned a lot about ME this way, since there is very interesting science being done here in Norway with trying out cancer medication on ME and Long Covid patiets. It has show very promising results. Similarly, I realized that there is not only a strong link between ME/CFS and fibromyalgia, but that they are in fact overlapping diseases on the same spectrum of pain syndromes (together with things like Interstitial cystitis, IBS, migraines and several diseases with complicated names). This I learned from watching content from NIH in the US.

I work in communication, and video is an extremely important tool for training and communication.

So that’s just my 2c worth.
 

tormodg

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I have apparently been hit by a moderation alert since my long answer post was put in a moderation queue. Sweet.
 

JayCS

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I have apparently been hit by a moderation alert since my long answer post was put in a moderation queue. Sweet.
😏 😎. Happened to me the other day too.
I thought exactly the same, ever so slightly sardonically.
I was thinking it was because I named 3 things on the D-ribos(e)-thread which some people tout as miracle cures... - which it would make sense to flag, I spose.
Apart from the fact that I might be slightly trustworthy, I would have thought....
Just checked: It did get published eventually... 🧐
Hope yours does too. What irony if it didn't....
 

Auriel

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Search engine names get you put in the queue as well (I didn’t learn my lesson the first time went on to do it a second and then almost a third to let you know about it) I’ve learned now 😅
 

DebMarPir

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I had a helpful video removed, too, and didn’t understand why the rule. Mine was about movement with pain. I have to say getting pulled bothered me, too. I also noticed my posts aren’t posted immediately anymore but seem to go into a review queue and so I stopped posting because I couldn’t even correct my own typos …
 

Auriel

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@DebMarPir cos I’ve learned my lesson after being in put in forum jail a few times I just say what to put in the search engine now to find the YouTube videos, never mind it’s ok here we are have some sweets
🍬🍬🍬
 

sunkacola

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@DebMarPir cos I’ve learned my lesson after being in put in forum jail a few times I just say what to put in the search engine now to find the YouTube videos, never mind it’s ok here we are have some sweets
🍬🍬🍬
Auriel, that is the best way to go about it. Just tell people where to find things you want to share - it's simple and easy.

As a reminder to all -- if your post doesn't appear right away it may not mean anything negative, but only that it has not yet been seen by a moderator. While the moderators do their best to stay current, sometimes life interferes as I am sure you all can appreciate.

If by accident you have broken a rule in the past it may mean that future posts go automatically to be reviewed for a period of time. This is the operation of the site, which is set up that way for everyone's protection, and is not personal.
Also, if your post does not appear or is edited, there is no need to take that personally. The same rules apply to everyone, and there are ways to share information without running afoul of any of them. If you ever have questions, please feel free to send me a private message and I will reply.
:)
 

JayCS

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Ah, now I've found your long post at last, tormodg... has it taken this long for it to be put out?
Interesting basis & history. I also communicate(d) using youtube videos at work, several times a day.
For me, YouTube and similar video-based platforms are lifesavers
Yep. Pity the others stand in its shadow and that it's now controlled by the Big G-octopus.
I only know and use vimeo as an alternative. Do you know others that are worth considering?

I've collected about 100 good fibro videos, mainly by docs, linked from my "JayCS's fibro blog".
The life-saving bit is to me more from finding physio treatments for single symptoms than from educative overviews tho, I collect those too, and share how to find them here too, if asked (exercises, stretching, acupressure).
I'm not interested in scientific conjecturing, but anything that can hint on a treatment I could try is welcome.
 

Auriel

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yep same for me anything (preferably natural) that can stop this stupid fatigue making me feel drunk I’d grateful for. ketch on Sunday taught me how to write in different colours! This suits my rainbow brain hehey! 🌈💛🧡❤️
 
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