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Since Yellow Card won't record harms from psychosocial therapies, can someone set up a site for people to register those harms? Then perhaps we can collate the data and send it to the relevant authorities. All it needs to be is a website that captures the same info as the Yellow Card website...

Strangely enough, the MRC documents from Kew, which I was reading this morning, mention HTLV-II (not HTLV-I) in connection with ME. They say they're not related, of course. But it's interesting, given that this has just popped up here.

You've got a good mix of treatment. Baclofen works on GABA-B, which might work in concert with the gabapentin (GABA-A) to aid muscle relaxation? Baclofen is especially good for spasm. I used to get terrible neck spasms. I started doing neck exercises (slowly pulling your chin/head back without...

Being confused and having confused brain 'signals' are two different things.

Wow. This is so terrible. I hope Australia doesn't wait until it becomes a pandemic before acting.

There's a good litmus test for how his posts are being received: does he have more replies than likes? If so, even someone ignorant of the facts will see he's very unpopular. People like to be on the 'right' side. Whatever he thinks he's doing, I actually think he's showing those who see this...

People honestly think you have to be a vegetable to need help. It's sickening.

It's just so offensive. They're revealing the bigotry behind their ideology here, I believe. Being trans is hardly new--there are histories of trans or equivalent identities going back millennia. It's just that we have the vocabulary to talk about it now, and an ever-increasing population. There...

The science behind FND is just so woolly. 'Erm, signals, signals, something, conversion, hysteria, signals.' I have no doubt signalling issues are involved in ME (central fatigue, perhaps sensory gating issues), but it's more complicated than, 'Your brain is confused. You think you're having...

Indeed. Hoist 'em by their own petard!

Oxytocin nasal spray works well for muscle relaxation too.

I got this part, but don't understand what's wrong with the O'Leary document(s) or the info published by MEA or Forward-ME here? All I know is there's something supposedly troubling about O'Leary's comments on BDS/BSS/BDD, but I don't know which part is problematic or why. Is it which one of...

I'm still none the wiser. If this isn't in layman's terms, I think we'll struggle to get the community onboard. More simply: what's the problem exactly and what do you want us to do about it?

Why is the O'Leary letter troubling? This is a very complex area with lots of jargon, and I think brainfog may prevent many people from understanding very much of any of this. Am I right in thinking: 1. That you're asking for clarification and consistency around the term BSD or BSS? 2. That...

Younger thinks there are three main subgroups: metabolic, viral (reactivating, persistent or just post-viral) and autoimmune/inflammatory. I don't know how correct he is, and we can't really debate it until he posts the results, but that seems to correlate to the varied results we've seen so...

Exactly. And as you point out, it's a social justice issue and human rights issue as much as anything else. Bill, you seem to imply ME is a new name for the illness ('other recent name changes...'). It's not. It's an older name for the illness. Chronic fatigue syndrome is the newer name, and...

The average of 125,000 (lowest estimate) and 250,000 (highest estimate) is about 190,000. That's the only way I can find a figure of 190,000. I may have missed a study, though.

I frankly don't give a damn what snooty doctors might say. I've had far worse things said and done to me.

Les Simpson found altered blood shapes in ME too. This may, if true, distinguish the two illnesses (although obviously a history of service in the Gulf War is a big giveaway in most cases), but it's such a tiny sample size I'm not sure it's accurate. I'm inclined to think RBCs should be similar...

The point is that names and words don't always make sense. Especially in the English language. But @chrisb is right--the ME definitions are all preferable to the CFS ones, so for that reason we should also prefer the label ME.