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I think it's a stretch to assume this is part of a coordinated campaign to manufacture consent for ACT. KKH has been critical of bad research in ME previously, so unless he's done a full 180, I can't see it. It's vaguely possible that a Guardian editor got the idea to write about acceptance...

I suspect they would keep before and after records. I think the easiest solution, if they do want to do this, is to retain both copies and allow both to be accessible. That way, you're not continuing to perpetuate the harmful stuff in science while also allowing others to see where that harmful...

I think KKH is likely using 'hope' to mean 'expectation and false hope' and 'hopelessness' to mean 'acceptance'. Given KKH's previous articles, I don't think he's pushing for an ACT-style approach to ME. More that he's trying to be an upbeat realist. That's not to say everyone should be...

People give different answers when they're being observed. It's as simple as that. And if you're observed over a longer period, that will have an effect. It's just training people to respond more positively. The underlying problem is still the same.

I feel like I've encountered his work before. The name rings a bell. It's a decent article, though. I think it's a nice rejoinder to the 'but we must give patients hope' clinicians. I think many patients do want some kind of hope -- but it's not hope in some treatment that won't work. I have...

I agree there. The good news is that the APPG has cross-party support, so I think, in theory, we can get it. Also, they like to support NICE.

The report is quite useful. They point out that the refusal of clinicians to accept the new NICE GLs emphasises their scepticism towards pwME. In other words, those who refuse to use the new GLs are continuing their gaslighting of us. They also point out that the clinicians who complain about...

My (informed) opinion is that the DHSC sees this a project they are going to continue with or without SJ. Ministers are too busy to run these sorts of things closely anyway. They set the ball moving and bureaucrats do the day-to-day project management. We should assume it's going ahead for now...

The Scottish Government has also just stated that clinicians' refusal to accept the new NICE guidelines is symptomatic of the general disbelief patients experience when dealing with clinicians. So we need to start bringing that up too. It is clearly a continuation of their gaslighting.

So diagnosis without seeing patients. Seems nothing has changed. The consultant physician should be seeing everyone and leading in drawing up the care and support plan. Sadly, this is going to continue to remain a problem until we get proper investment. And we will still have to fight to make...

I daren't read them. Are they as bad as one suspects?

I think the names will be released when the DHSC signs it off. They did with the professional members of the RT; it just took time. Personally, I think all patient reps for these sorts of things should be available publicly, for transparency purposes, except in certain circumstances. That...

You learn something new every day! I'm not sure I'd want to eat benzocaine sweets anyway.

Not fighting against yourself might plausibly free up energy to do other stuff. If you accept your illness, you might be able to pace better and acknowledge your limitations, thus avoiding the worst of your PEM. You might also feel more in control and thus happier. That's not the same as...

I think they need a better acronym than AID. I keep reading AIDS, and I imagine many other people will, too. Minor quibble, but it seems really strange they didn't consider the high likelihood of confusion with a very common and familiar term.

Agreed.

Nah, we acknowledged methodological flaws too. The overall ratings of low and very low for clinical trials required meeting multiple thresholds for crapness. It's just that the BPS people only ever talk about the indirectness thing, because if they had won that argument, it might have allowed...

I'll note this for a longer version. I didn't want to increase the space discussing PACE, though it ended up taking a lot of space anyway, as it was only one trial. The other ones were also important in making our decision. But in a longer article or paper, I can certainly dedicate more space...

I think it's perhaps just a reflection that of the pwME who do have carers, they are unpaid friends and family, and may have to do an awful lot. Then there's the issue of patients who are carers and face stigma and disbelief as a result of FII and the like. I wouldn't focus too much on it. I...

Thanks, Robert. All noted. What I meant about the older surveys is that GET was still relatively 'new' at the time. And I suspect clinics were also less militant about it (i.e., they were still trying things out, so some were more flexible). So in those early years, people may not have...