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I read this assuming it was from Tuller, and waiting to get to the CFS specific part - oops. Intersting blog though, thanks for posting.

[I'd typed this, but decided not to post it... then discussions about 'tone' on another thread made me think that it would be worth posting.] I had responded to the specific example you gave: I feel like you're presenting an exaggerated view of what those calling for caution say, eg: I...

Has anyone attributed all the political and social issues surrounding ME to a single trial? Without White guiding them they're really in trouble, aren't they?

Maybe they've made it harder to target people due to the recent FB scandals?

Thanks both, yeah I was multiplying it all by 100 at the end. Got it now. Does make their graph seem extra odd.

What figures would be right for the %HRR? Google failed me there, and I thought it looked like it was possible 'highest measured HR' would equal 'predicted max HR', and therefore we could just divide by 1.

Thanks for all the summaries on this. I find pain harder to manage as I get more run-down, so I'm a bit surprised that they didn't find a difference here. My expectation would have been that healthy people rate pain as worse when they're exhausted to when they're not. Maybe it's more that I...

Thanks @Lucibee - D for attainment though. That's what I get for trying to blindly follow a formula without having any understanding of what some of it refers to (where does 9.81 come from?!). I'm still getting a really high figure: 84[kg] x 9.81 x 0.4 [total height in meters] x 20 / 125...

Okay, I'm only just waking up, have no idea what I'm doing here, and inserted numbers into their equation that were plucked randomly from google, but I came up with a result of 142146.9. Rather more than 1. I'm guessing that shows I've messed up something.... sorry for just asking and hoping I...

There's been a lot of expressions of anger over the years, and a lot of citing of ACT UP. To me, that approach doesn't seem useful with ME/CFS. We're in a very different situation to that faced by HIV/AIDS campaigners 30 years ago.

Best wishes to @Tal, and I'm really pleased to hear that they're doing better, but I do also have a concern that some of the information they were given at the Leeds centre may have been a bit manipulative, and made it difficult for informed consent to have been given. Some of it reads like...

I don't think anyone here wants deference to those who do us harm, but I do think that a lack of caution from patients has done more harm over the years than too much caution. Would things like this really be likely to benefit us? A lot of the issues around ME/CFS/PACE are really complicated...

I feel like I should say less to encourage Action for ME to at least try to engage with people more... but come on!

I think it would be fair to have @Action for M.E. comment on whether they've received money from the DWP, or other government departments. Someone who was formerly involved with the charity raised concern that this is affecting their willingness to speak out on the problems facing patients.

This would have been a reasonable position at the point when PACE was first asking Action for ME to support its applications for funding. "Hmm... there is uncertainty here that should be properly investigated and considered before we decide whether to lend our support or not". I keep being...

I've not looked into what you're saying, but it would be great if you could explain it a bit more before I tried! I thought that they'd given very little info on their fitness data, so how are you getting independent results of any kind? Thanks.

Thanks to Suzy for all her work on this. I know I haven't been able to follow all the details.

Does 'young' include the middle-aged, or have I missed my chance? I'm deeply immature.

I always feel nervous about things like this, in case it's some SMC-style propaganda piece.

It will be interesting to see the response that gets. The SMC have such a long record of being appalling.