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Just read this article. A valiant effort, Victor. Thank you. What happens with this study in Norway will affect how LP is perceived in every country unlucky enough to have been infiltrated by it. It's infuriating, unfair and misleading that you should be presented as an activist who wants to...

Wondering about the portable VO2 device as shown in the photo in the MEA announcement. Clearly, getting good data on our oxygen usage during ordinary activity would be highly valuable. Unfortunately it also looks to be a tricky proposition. Many of us spend most or all of our days either...

I don't think these have been posted yet? Recorded at AGM in November 19, posted on Youtube March 20. Some issues with sound quality, especially with the Q&A video. Dr Vallings (eclectic overview of international research, nothing new in there): Prof Tate (presentation of his team's work...

I don't know where Leif Edward Ottesen Kennair and Per Magnus stand on the BPS scale but let's assume they're genuine in their wish to produce quality research. I'm still extremely concerned that the proposed use of CCC is giving false credibility to this study. The CCC stand and fall with the...

Emerge have been sharing a lot of stuff on social media, I particularly loved this song. Shows there is one "body system" unaffected in ME after all: our sense of humour. :rofl: https://www.facebook.com/sarah.prosser.73/videos/3338735606137311

And other researchers/doctors (? sorry, memory lapse) say our immune system is dysregulated, with parts of it overactive and other parts underactive. I also wonder if the type of virus makes a difference? That as a group - or as individuals - we are more resistant to some viruses and less to...

Agreed. I cringe every time an article mentions the word 'controversial'. Often a well-intentioned attempt at increasing credibility but unfortunately tends to have the opposite effect. Anyway, Moreau is not sitting on his hands. This sounds promising: From...

An early start to ME Awareness Day, several short articles in a small weekly community paper (sorry, can't copy and paste): a patient story, a short interview with Prof Tate (doesn't say anything new about his research), and a short interview with the leader of a local support group. The theme...

This is an interesting take on the various strategies taken against corona spread, based on something the author calls 'catch rate', basically a measure of how many people in the community you have to test to find an infected case...

Yeah, NZ is talking about significant reopening soon, too. The first easing from level 4 to level 3 restrictions was quite small and cautious - we're currently still in level 3 - but the next one down to level 2 will be a much bigger jump. At least the borders will stay closed. Still, makes me a...

@Emily Taylor Simply replacing 'fatigue' with 'feeling ill' would go a long way. No expert language required. Feeling ill also implicitly includes feeling tired so the fatigue isn't ignored but it's not highlighted either. For the impact tool another option is to simply drop the fatigue...

For those times I recommend the "grimace and grunt" method of communication ;). But in a more public setting I think it does matter what we communicate. The focus on fatigue to the almost-exclusion of everything else for the last few decades has led to the general public equating...

Looks like the Registry launch was more even popular than anticipated :thumbup: - and that's only in the US for now, the international launch is still to come.

Listen to us! Couldn't agree more. Yet I suspect they genuinely believe they are listening to us. I recall Jason seeking feedback from the wider patient community - and that could be part pf the problem. There will be an awful lot of patients who look at his 'PEM' list and say "Yes, I have that...

You nailed it @Barry. The word fatigue has been hijacked and is being used against us, often innocently through ignorance, but sometimes on purpose. The singular focus on 'fatigue' in ME for the last few decades has swung the pendulum much too far in the direction of ME=fatigue that we need to...

Arrgh! If even people who should know better appear to suggest that PEM (an IOM core symptom) is common in other illnesses, what hope do we have? No point in discussing better diagnostic research criteria if we define PEM so loosely as to make it meaningless.

According to the latest MEISS newsletter there's going to be an ME documentary later this year. That's all the information I have.

I really struggle with the ethics of this. With covid we've been hearing about how infection challenge studies (to test vaccines or to test if people are truly immune after infection) are unethical because no proven treatment exists for covid, in case things go wrong. With LP there is enough...

Ordinarily I'm pleased when a study uses CCC. Not this time. The CCC have one weakness which is the definition of PEM. It's too ambiguously phrased and can be misinterpreted as post-exertional fatigue without any additional symptoms. And I have a dim recollection of Wyller doing exactly that in...

More thinking aloud. Let's assume for a moment that fission really happens as proposed in the Prusty paper, and in a variety of cells in ME. In this case, is the problem (only) excessive fission or (also) an inability to exit fission mode again. As I understand it fission itself is a perfectly...