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Right. I Exactly. It does happen. People in positions of power are more easily able to abuse people and then cover it up.

It's all anecdotal. But that's sort of the problem of a proprietary training programme like this--none of it has been properly analysed or vetted, and the 'creators' have no impetus to share such information. It's in their best interests to keep it secret, which is a huge problem.

It's from Bristol local authority's own safeguarding/child protection policies. She checked those with a colleague. However, it's a key point in many policies for protection of children and vulnerable people more generally, so the point should apply wherever the research is conducted. The old...

Absolutely. I spoke to Christine and she was happy for me to quote this comment as she thought it covered the key safeguarding issue well. It's a solid argument to make. Obviously, there's variation in local safeguarding policies, but I founded a young LGBT writers' programme, which means I...

Thank you. That's a very helpful point. I've wondered about that too. 'Very Severe' is just a qualification of another severity level (like 'Very Moderate' or 'Very Mild'). Maybe it needs to be another word altogether? Some possibilities: extreme, critical, advanced, complex, dire. I'm leaning...

In the UK, a private MRI is about £200-250, so I can't imagine it's much more expensive on the NHS. I've seen US prices at 8-10 times that ($2000-2500), but that's probably the effect of private healthcare and competition in the market.

That's not quite what that article says. It says that if the nano-needle can't separate the two illnesses, additional tests might be needed. It doesn't specifically say that it can't distinguish between the two. That remains to be seen.

I've got a baby face but feel ancient.

Also, I think most of us occupy a range. It would probably be helpful to express things as a max/min. E.g., 60/30. Or the other way around if you prefer.

Presumably, stage 1 would be remission? For that 5% that apparently recovers.

I've wondered if it should be moderate, substantial, severe, very severe instead. I can't quite think of a better scale, unless you have 'stage 1' to 'stage 4' or something like that. Moderator note: This post has been copied, and posts discussing it moved to this new thread: ME severity...

Moderator note. This post has been copied and following posts moved from this thread. See also this members only poll and discussion Library thread: Questionnaires and Scales used in ME or CFS research I've wondered if it should be moderate, substantial, severe, very severe instead. I can't...

I get that. But it doesn't matter so much if it's not accurate, so long as it's consistent. If it reads 5,000 steps per day, but that's mostly moving your arms energetically, it's a) still capturing something active and b) not a problem if it logs 5,000 steps every day that you're similarly...

But is there? We don't know that. We don't even know what the physiopathology is. The Biobank hand-grip strength test paper showed that the different severities were almost different illness. The results were distinctly different. How can we ensure a treatment is safe for severe patients if...

The FitBit couldn't do this alone. But it's an example of where you might compare subjective and objective measures. If patients report worse symptoms and worse sleep, and the FitBit shows, for instance, worse heart-rate, broken sleep and a lack of deep sleep, then those things potentially match...

I think I've already got it (I'm based in Salford, so was shown this and the Trafford report when I was first diagnosed), but I've saved this again anyway and added it to my NICE folder. Thank you.

The Independent website is a navigate. I hate reading things on their site, even if the Guardian turned me off years ago.

That was more what I was thinking. Or that you could first assess mild-moderate patients in this way and see if/how exertion changes sleep. The effects could perhaps then be extrapolated across to severe patients, so that you only really need to rely on a FitBit for the course of the trial...

Could you include two sleep studies at the beginning and at the end (one at each time point before exertion, the second at each time point after exertion)? That way, you could objectively assess sleep quality at beginning and end to see if anything has changed. You could use wearables...

So I can't really talk about confidential stuff, but cognitive problems appear in all the major criteria for ME/CFS and we have discussed those criteria already (at length).