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Bon lurkage, @Keela Too! :thumbup:

I think there must be stuff on that FB thread about Welsh stuff that I can't see. I've been through every single comment. Ah well!

IIRC we've got at least one such patient here and I wonder if it would be a good idea for patients to link up and educate each other on the issues if they're not already familiar with them and maybe do a bit of role play. If I was going to be on a committee like that I'd be getting my friends to...

Thanks! That's good that there are some professional roles left.

Sorry, I'm not able to see it (possibly because I'm not on FB!). Did he give any more detail? I'm a bit confused because I thought that all the positions were filled now.

Do you have a link for that, please?

I wonder if it would even be possible to do a competing Cochrane review? I don't know if there's any kind of rule that only one group can do them.

In terms of giving weight to patients' views, I hope that expert patients on the committee will have a chance to speak out about the methodological problems with the PACE trial (and other trials with similar flaws). There is no justification for not taking methodological critique on its merits...

Do you have a link to the register of interests? I'm curious to see what kinds of things are covered.

IIRC, Ron Davis prefers people to donate to OMF because then they can spend the money anywhere (such as by setting up the Harvard group, I assume). I thought they used to have a FAQ response on this precise issue but can't see it now.

If that's so then I see a strong case for people supplying that missing information.

I understand that your hands are tied and that you may know things that put another complexion on this but from where we're standing, it's looking as though the committee is being loaded with some people with very strong pro-CBT/GET viewpoints. If they're in a strong majority, I don't see why...

But how can that be avoided, if such people are in the majority on the committee? What's to stop a BPS majority saying that PACE and its ilk are things of beauty and that the NICE recommendations for CBT and GET should stand and forcing that decision through?

I understand the need for due process, but if due process produces a weird result it suggests that the process failed. In that case, don't people have the right to lodge a complaint? Need that be considered 'lobbying'? I'm not sure what you mean here. @Alena Lerari, a PWME who applied to the...

Doesn't that mean that the committee will be judging itself? If the committee is loaded with BPS proponents, what's to stop them forcing a decision that they're unbiased?

Do we know how many positions remain to be filled? Was I right that the total committee is likely to be 13-15 or is this a different kind of committee than I thought?

The committee being set up is presumably a topic-specific committee, not a standing committee, @Jonathan Edwards?

What's the running total of BPS proponents so far? According to the source below, the full committee would normally be 13-15 people. I share @Esther12's concerns about competent voices being outvoted. I just tried to find NICE's policy on committee selection in case they're already clearly in...

How can you possibly know that 3-for-1s make people spend money that they can't afford? What is your data source? I daresay they do increase shopping spend, at least on the item in the offer. But you're saying that this is money that the shopper can't afford. What's your evidence for that...

I think the main thing is that people give what they can afford to good-quality biomed research, whoever is doing it; that we donate regularly if we can and are so inclined, to offer a stable income for research; and that we do what we can to pull in more donors.