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That would be news to the many people experiencing it. Including me. My ears are especially surprised not to hear right now. And now. And for the last several years. It's not recorded anywhere except in passing mention, because there's no point "diagnosing" a symptom. As I said, it's not...

It's common in both ME and LC. Some after vaccines too, although it's still unclear whether it's vaccines alone, or the immune system's reaction to the vaccine. Temporary in some cases, chronic in others. It's one of the most common frustrations I see and it's always dismissed by clinicians...

This post has been copied and discussion moved from this thread: Tinnitus treatment It's common in both ME and LC. Some after vaccines too, although it's still unclear whether it's vaccines alone, or the immune system's reaction to the vaccine. Temporary in some cases, chronic in others. It's...

There is a strong tendency for those improvements to be short-lived, so if they didn't check at multiple points in time, this is useless. It's absurd that such research still has to be done through social media, all because healthcare systems refuse to acknowledge LC and leverage the existing...

Just like Cochrane and how their rules and principles don't apply to us. By their own guiding principles none of the evidence base for anything MUS and BPS is valid, they all fall short of basic requirements as being highly biased, conflicted and having very low reliability. The exception is...

Correspondance from an autopsy case, so early finding. https://www.nejm.org/doi/full/10.1056/NEJMc2118155?query=TOC Autopsy material from a child who died from an acute flaccid myelitis–like illness showed EV-D68 RNA and protein in anterior horn cells and their axons, strongly implicating the...

POTS is probably the issue that I see the most recovery from on LC forums. It's hard to understand how it hasn't been possible yet to study it in detail given how you can basically follow it from trigger to resolution in a matter of weeks in some cases and there are objective measurements that...

Decent article reporting on the recent LC symposium and has good discussion overall of ME and how this is nothing new. The one thing I noticed above all is the continuous use of "it's not completely overwhelming the system yet, therefore no urgency to act" that pervades everything I see in...

This is not organic, it's strategic messaging. As the pandemic ebbs, long-haul Covid still drains patients and confounds doctors https://www.theguardian.com/world/2022/may/29/long-covid-causes-how-many-treatment It's not a completely terrible article, but it continues the pretense that this is...

Yes that's what I'm asking, it's hard to understand the general suppression of those news without at least some coordination. SMC is just the usual suspect as they did exactly that for many years and as Fox is showing, they are still actively vilifying everything about us. Otherwise it's one...

I mean in general, most articles of LC in UK media avoid any mention of ME, none have covered the APPG report and Javid's announcement. Other than The Times, I see nothing.

We know why.

BBC still completely suppressing any talk of ME. At this point it's obviously a top-down directive. I wonder how much of this is simply bowing to what the SMC are telling them, since the Guardian is also doing the same.

Hmm, correct. Not sure what her association with this is then, but she is clearly endorsing it so it doesn't make much difference. On numerous occasions, she pointed fingers at us as the best example of bad patient advocacy, for literally saying most of the same things here. The only difference...

I've seen several supportive tweets from this person recently, vice-president of the German national legislature:

Similar idea, maybe worth reaching out and build from the same base? They already have ME/CFS as a topic.

Good grief the hubris of this woman. What could have possibly convinced her she knows enough about this to actually write a book showing her ignorance? Might as well have titled it "Have you tried yoga? A guide to Long Covid." As if long haulers are not self-managing already. The detachment from...

The BPS gang has always presented their position in an absolute non-negotiable way: only psychology is allowed (let's spare the lie where they pretend otherwise, it's completely insincere). They are the only ones who only allow their own research as valid. They are the ones with an extremist...

Somehow news that MS is largely caused by mono barely made the news either. It did get some coverage but considering that this is identifying the cause, you'd think there would be major interest. So no surprise this doesn't get much interest. I'm not sure what's going on as this should be major...