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Don't forget the requisite last line of the conclusion -- More research is needed to further refine the therapy for it to deliver these results long-term.* * A particular bug in their results that the LTFU numbers fall to nothing. And interesting I think in that all the other numbers are...

Well, that's wasted money down the toilet.

I have a notion that I keep seeing this statement from a variety of outside sources (people with no previous association to ME). Where are they getting this idea from I wonder? I'm glad this author made a point of correcting that misinformation. It would seem to need rather more wide...

Yes. I'm hesitant to post more, I need to think how to be more clear in what I'm meaning. It's past whatever amounts to prime thinking time for me today.

I expect though that it is justification after the fact. They are physios after all and if someone with ME shows up a physio is going to do physio. So the problem comes before that in maybe referrals. Even if cochrane doesn't keep up the pretense I expect there will be those in a position...

I agree. They are savvy and competent enough to know what needs to be in a proposal for it to be accepted. So they write something acceptable and then go off and do the work (not sure at this stage if they do the protocol and ignore parts for the write up or do half the protocol). Either way...

The continued focus on fatigue is a problem IMO. It reduces the whole issue to a sound-bite. More nuanced neurological understanding would be helpful of course. And in it's absence I'm not entirely sure what sound-bite would be more palatable but this fatigue meme is unhelpful.

Good point. My brain just blew right past that thought. That and a personal attitude of wanting these sorts of things exposed to the light of scrutiny that might have helped my brain over-look the point.

I'm going to be a bit of cranky here and slightly off topic. This is nothing to do with @Kalliope quoting of the author or her use of the term 'journalist' which is the norm and what would naturally be used. But I have a problem with the 'journalist' even as they write something more neutral...

All I get is an image of the cover page, no document.

I do enjoy Irony. This is right on target.

In the old days the military physical training that got picked up by civilians (the routine was on a card) was mostly calisthenics.

Interesting. So Phil Parker is being squeezed out of his own pyramid scheme. That's rough. I wonder what his next trick will be. May I suggest pulling the toxic illness out through a top hat. He can use a lump of coal as the physical manifestation of it. As good as any other BPS...

I would be interested to have links provided for the above mentioned videos. I did a quick google and nothing came up that was related.

Thanks for your response @Andy. That provides some additional context. My comment was based on my usual lack of knowing what's going on (or forgetting sometimes). I just hope to see that biobank samples are being used (with proper approval / oversight) to further research, which I think we...

Maybe #MEAction would consider producing a video to help advocates who speak to the media. @Gecko

Actually, you bring up a point I hadn't considered. Although I see how you got there. I tend toward brief responses. My thought was that boot camp would teach advocates how their words are used and to uh here I'm stuck for a word, to UNnaive them of how the media works. I didn't mean to join...

My usual caveat that I know nothing about how these things are done. On the face of it though it would seem right to me that Solve would have to follow the rules they set. But . . . it would seem that those rules are being rather restrictive to the biobank having anything other than narrow...

I don't blame Saugstad, I blame the media but we have been accidentally thrown under the bus so many times and for reasons that are because our advocates are pleasant, polite, considerate and reasonable people where the media treat this like a gladiator arena. It's like we need advocates who've...

Since JN does ME research and is an advisor to AfME perhaps we should invite her here to discuss her research to get some clarity on issues. It's not like this would be a new thing since we have had several researchers here comment on their research. One would think that she would be willing...