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Thank you @dave30th for all the great efforts and important work. You’ve done a h... of a job. It is very worrying that it has to be like this. Scary thinking if no one from “outside” did it. As patients and individuals we are disqualified from bringing anything of value to the table. Not to...

Great talk. Good she’s quite well after two rough years, at least that’s the impression. But as ME-patients we now a thing or two about mobilizing strength and being positive, even when not being close to “normal” health and activity. Anyway it is uplifting (for future patients) knowing of...

Advocacy is complex, and given the situation, there is really no way of slowing down here or there. But I think Barry makes some important points. PACE and BPS (and a ton of other things gs) still needs to be contradicted/fought in good ways, but I very much support the idea of trying to set the...

Agree. Where the heck would we be without the enthusiasts? But no wonder people are getting impatient. We’ve heard for years and years expressions that now it is happening, we will know a whole lot more and offer patients “something” within 10 years, within 5 years and so on. These statements...

Sounds like Mayo have institutionalized LP or something similar. What a complete mess. They are putting very bad attitudes on display. The big question is why? Do they really believe in this crap? Do they really think they will “repair” patients? Do they really think the messy approach will make...

It would be very interesting to do rigorous exercise-tests these in combination with sleep tests. Asking a lot, but.. I find the sleeping part exactly the same and one should imagine it must tell a whole lot?! I agree that there is no/zero restoration at all while “asleep”. When going to bed...

Interesting and important. At first, the layman in me really calls for solid distinctions and accuracy. What is GET and what is PACE style GET? These terms need to be defined. If being the devils Advocate, I think we have to acknowledge that the long-term harmful effect of GET not is well...

Interesting and important. At first, the layman in me really calls for solid distinctions and accuracy. What is GET and what is PACE style GET? These terms need to be defined. If being the devils Advocate, I think we have to acknowledge that the long-term harmful effect of GET not is well...

I guess that exercise tests will provide a lot of knowledge. In theory of PEM,it seems like gold standard, except from patients at risk when pushing limits. That is a little (or much ) on the side, but obviously a little problematic. A 2-day test is for practical reasons good, but what I find...

Ouch, what a read, adding one more one-sided and partial article in defense of PACE and Sharpe. I wonder: Where are the good investigative journalism and important questions? Why can’t journalists dig deep and properly? It would require investing resources and more than a superficial approach...

Always a bit sceptic and wish one could shy away from headlines like “its not psychological”, “it’s real” and such. These headlines are poor. Says quite a lot of the public perceptions and how bad it is in that sense, but we’re beyond this now. For long. Makes me wonder about the real knowledge...

This is one of many examples of what many have experienced, and what I would characterize as the scary part of EBV, - meaning that many top athletes and other people can push way to long not knowing of the virus. As I understand it, EBV may hit like a hammer or be “quiet” and something in...

Great interview and thanks again for your interest and relentless good work. You give great insight to the challenge, the magnitude, all the different parts that needs attention. In the end I like the “I basically have no strategy, I just want these people to behave like scientists”.

Yes, important point. Almost every legitimate and sensible concern is labeled in media as patients opposing “all in the mind” phrase. Thats beside the point and not really contributing to raise awareness of the underlying bad science and the potential negative impact. It is so easy to dismiss...

I have seen the Jamison clips. Isolated these clips mostly is ok and pretty neutral. Thanks for participating. Won’t spend valuable time seeing the rest of the series, but I understand that the context is quite bad. When it comes to the question of a potential response, it gets hard. The...

I see your point and agree that there is time that not qualify like a crash. I also use PEM and probably still will. When mentioning PEC, it is as stated, just from a theoretical view. My point with PEC is that “malaise” is just plain wrong. PEM is not “feeling a little ill”, it is just the...

It is an interesting remark. PEM is sort of so incorporated, been the argument confronting BPS-stuff, that one actually can forget how it can be understood. PEM is for many reasons inaccurate. The “malaise” bit has always felt annoying, because it is a term that in no way is near describing the...

See your point. I was to categoric in my attempt to say what I think everybody sort of feels, a great imbalance. Won’t say more on that, other than agreeing that “homeostasis out of control” is bad wording. What we can agree upon maybe is that the article is awful.

To long here, but LP is so fascinating because l’ve experienced the madness and the danger of it. I don’t want that to happen to any ME-patient (PEM and other cardinal symptoms). Read/glimpse of the paper. It is so frustrating not having the marker(s) reading this. Per se we have to put up...

Yes, this point is very important. LP is absolutely the total opposite of pacing, ref the brainwashing “STOP”, the harmful PUSH TROUGH to LIVE THE LIFE YOU LOVE. Ooh, lord.. The STOP-paradigm is exactly why it is dangerous and often harm ME-patients (defined and meaning PEM-patients). I haven’t...