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Shocked to see these results of 68% recovery for young people against the 5-8% for adults with mean scores 8/10 functionality. @Andy I accept that there is some remitting/relapsing in a portion of people, but 60% remitted and didn't relapse after 10 years? I find that strange. All I can see...

That's interesting. Baraniuk found I believe, exercise induced POTS in some ME/CFS patients. So it may be autonomic dysfunction is an aspect of PEM, and contributes to this symptom in you.

You may also wish to read my edit to the initial post talking about autonomic NAR. For all NARs, a combination of Azelastine and a steriod spray are often helpful. Their affects are additive. Azelastine in particular seems to be the most effective despite it being primarily an antihistimine...

To some extent I agree, except broadly some NAR can be immunological, just not allergic. It's not clear what exactly is causing it in ME/CFS. I also agree it may be driven by autonomic dysfunction. Afrin is indeed a potent vasocontrictor, but it would be effective for congestion doesn't really...

If others agree, advocacy might be a better place to hold this thread? I don't know tbh.

Researching ME/CFS has been hard, in part, because there isn't always "obvious" areas to look and the symptoms are often global. I'm proposing an area of research that might be of interest is non-allergic rhinitis. I have this in chronic, un-remitting form not caused by allergies, and which...

Wow, well that's digging in.

Seems to be an issue with the nerves regardless - possibly further away from spine and a local issue? Even the response to Nortrip, a particular effective medication in conditions affecting the nerves suggests this.

Perhaps there was some recognition, from someone, somewhere along the line, that this was the case and the article needed to be delayed until it could be addressed. I guess I'm optimistic today.

Sounds an awful lot like the editors weren't entirely comfortably with the objectivity of the piece, asked for a rewrite w/ room for a response and then said go back to the drawing board after having more time to think about it. Who knows, maybe the editors actually looked just a little bit...

This seems par for the course for SMC. All one can do is stick to the issues present in the studies. We all know it's a lash out to defend cbt/get and lightning therapy and present certain members of BPS cult as embattled scientist. The truth sustains over time. I'm glad to see ground is...

@Wonko Very interesting following your remission period. I had a brief period without PEM, but it eventually came back in a mega PEM after about a month. I don't know what happened really, but other than that blip I've been very constant. I'm wondering if your experiencing some changes in the...

Yikes, I don't know if I have the energy for another medical odyssey to figure out the exact cause.

No need to bristle at the inclusion of a mood questionnaire. It's wrong to reject something just because it includes psych issues because BPS abuses. This is an obvious biomedical study done by a knowledgeable reseacher. The inclusions of mood symptoms is probably because he's interested in...

This is a thread for Pulsatile Tinnitus (I'd like to keep it seperate from normal tinnitus, which is a different cause). Recently developed it in one ear, lasted for a few weeks. Now it comes whenever my heart rate goes up. Really annoying. Has anyone had the surgery for this?

There must be a solution in shifting focus from grant financing to awareness, eduction and tissue-banking financing. I do not doubt that many of the grant proposasl are low quality. I just don't see why that should stop a disease from reaching equal funding. The solution is not to force-feed...

Even with the biomarker papers from this week, the Activin B/Acitvin A ratio still seems the most realistic if it were replicated. https://www.s4me.info/threads/serum-activin-b.6951/

Marieke Jepma, Leonie Koban, Johnny van Doorn, Matt Jones, Tor D. Wager. Behavioural and neural evidence for self-reinforcing expectancy effects on pain. Nature Human Behaviour, 2018; 2 (11): 838 DOI: 10.1038/s41562-018-0455-8 Link: https://www.nature.com/articles/s41562-018-0455-8 Abstract...

Yes, although this adds in "those w/ hysteria deny it because they see mental illness as a moral failure", which is of course a blatant lie.

At least from the abstract we see they studied Brucellosis and Chronic Brucellosis. There is now evidence from a recent study (2009), of ongoing infection. But I bet there are a myriad of things wrong with the paper. I.e. Brucellosis can infect the CNS, probably increasing depression and it is...