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Great discussion (especially on Severe ME Awareness Day). - With regards to the question about being hopeful or not, I see an alternative stance: It is to just stay strong no matter what, medical breakthrough and cure or not, spontaneous remission or not, whatever happens, meanwhile, just...

I respecfully disagree with one small word here: "just"! Being supported by someone who listened (I like the italics), is to me not 'just " a thing: 'tis a rare and precious thing… Listening to someone, truly. Hearing someone. What I wish psychology were. Or stuck to. - Maybe the role of...

Paul Garner first did not take post-viral conditions too seriously, then he took them very seriously and even found the neglect of medical science in this area "appalling", and today he… once again does not take them too seriously. However disconcerting and frustrating these shifts are...

I’m often left with the impression that many ME researchers (and doctors) keep missing the essence of PEM even when studying it head on. It’s often as though they see it as an amplification of a preexisting set of symptoms, rather than a sui generis pathological process that kicks in. I...

Hume: " The idea of cause derives from the experience of constant conjunctions. - Kant: David, you would not apply the idea of cause to constant conjunctions in the first place if that idea did not already exist in your mind. It’s there prior to all experience. Causality is an a priori...

It is hard not to view the term "psychosomatic" as a direct relic of ancient body/soul dualistic conceptions. What we call emotions, perceptions, cognitions, consciousness, dreams and the "unconscious" if one wants to hold on to that one, do not exist in some immaterial dimension called...

For me pacing takes the form of continuously interrupting any activity after 10-15 minutes and lying flat on my back for a while. Then I resume another 10-15 minutes and interrupt and lie flat again. I can’t do this all day however. At one point I have to stop all activities for good, there is...

I am glad you are raising this @InitialConditions. I sure get those late afternoon crashes. In fact most of my crashes are triggered by bad pacing precisely in the late afternoon time frame (and also late morning). Here is a theory I was given: Let’s say pwME do suffer from a certain...

I read s4me every single day since years now (but do not write as much as I would like), and this group has been a source of comfort and courage and knowledge of the best kind to deal with ME challenges. And today in this baffling covid-19 era, even though the whole planet is tackling it...

As @rvallee already noted Dr Khan’s words on « time to take the insult out of the injury » were all so welcome, and his tone felt so sincere and genuine. Bravo and thank you Dr Khan! (and of course to everyone else who is contributing to this)

Thank you so much @Adam pwme and congratulations for these great videos. I see them as perfectly complementary: Your previous "moving the goalposts" video showed the scientific flaws of the Pace Trial, and this one shows its humanistic flaws - the harm indeed. Also I very much like how this...

If ever the biomechanical stimulation device had not produced sufficient physiological responses, I think prof. Moreau had a back-up plan such as using a treadmill but his early results showed that the former was more than enough to trigger measurable anomalies. Personally I see this device...

The notion of central sensitisation syndrome is in a sense more insidious even than the notion of MUS because it gives the impression that we are no longer in the "unexplained" area. We have an explanation now: Your CNS is "sensitised"! Which explains everything! And nothing… Maybe such...

Done. A bit strenuous, but at least this made me smile:

His claims about his vagus nerve theory seem cautiously moderate, he doesn't believe it to be the smoking gun, he says. I like the section where he explains very simply: When you have a cold , you may get a blister, your immune system is compromised and a herpes virus reactivates. What if the...

Ron Davis was hardly known to the patient community when he was first assigned to the IOM panel, and I don’t think any stories had been published on his son anywhere yet.

I had no idea they were studying PEM in such a way. Should you come across any of these patients who helped steering the study in this direction, @B_V , please extend them my sincerest thanks! And my thanks to you if you were one of them. So we now have a "Team Post-Exertional Malaise" and I...

That is how I see it as well, the reduced blood flow is not the whole story when you crash but only the initial state of things, and then the brain during this hypoperfusion "crisis" sends signals which trigger all kinds of responses. Something I have read is that one of those immediate...

This distinction has been made before but I always love it when a doctor makes it:

"1990: The CDC receives more than 2,000 calls per month from the public requesting information about a flu that never goes away" - How do you make it go away? asked a CDC authority to another. - Well, we just called it chronic fatigue, that should do it. All joke aside, there is always some...