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They blocked my for asking if they had any comments about Crawley's failure to get ethical approval.

I don't see why someone wouldn't use such devices these days. I think they are not sufficiently good for medical purposes (diagnosis etc) but I would have thought they were for some from of longer term activity monitoring. Also I believe they are quite fashionable which means that many would be...

I assume it is US only patients?

I was going to say that suggests she knows there are flaws with the trials. The idea that young patients would cheat with accelerometers (fitbit etc) but that she still uses questionnaires is interesting. I like the idea of using smartphones, most have build in accelorometers and hence can...

Is that based on the Dilbert principle of promoting someone to a job where they can't do any harm? Maybe the question for Bristol University is does it signal a change in policy over getting ethical approval (i.e. don't bother or run a feasibility study and switch into a full study).

I would guess they wanted to see what it said about them and whether its bad. The correspondence is mainly administrative. I am guessing of course.

Best post is @Lucibee's summary of the 2004 docs https://www.s4me.info/threads/correspondence-from-the-dwp-for-2004.2771/#post-51130 Also 2003 docs https://www.s4me.info/threads/correspondence-from-the-dwp-for-2003.2682/

My guess is they wanted to look at the DWP correspondence that was posted here. You have to be a member to look at attachments and JohnTheJack tweeted that they were mentioned in them.

They have no presence here. They have made no attempt to have a presence apart from joining. Not even a bird avatar? We also registered as a stakeholder with NICE. We do hope to have an 'official status' at some point but just for the purpose of a forum to discuss science around ME and...

It would be interesting to know how common these symptoms are in ME. "self-care, social withdrawal and significant reduction in mobility and activity." all seem to follow from being severely ill. And also a bit of choosing where to use limited energy. I think some patients struggle with...

Yes I agree. But don't take any members identity for granted. If an organisation/researcher joins we van match the email address to the account. or the domain under which the email is created. But for example if NIH join and have a NIH email account then I would take that as official. But...

Really all the members only sections do is prevent search engines from indexing it. We don't vet new members and many are quite anonymous (we just check against spammer blacklists and possibly VPN usage). I think that is right in terms of ensuring patients can access the forum easily. But that...

We have no particular rules as to who can become a member we only bad obvious spammers who are flagged as such on blacklisting sites on initial entry. We do have rules that members must abide by. I think we would be concerned if people were misusing a name (e.g. if someone else registered an...

Some times it takes someone to properly think through a problem to get a good solution rather than the knee jerk reactions that we get from doctors in the UK. I remember then the fire service were trying to reduce calls the started removing all the abandoned cars because many of the calls they...

I think that is the real issue - the theories don't follow any reasonable logic. I've always liked the idea that a doctor could classify something under a "I haven't a clue" label - it would at least be honest. But MUS they are claiming understanding of something that is 'unexplained' simply...

I wonder how many of the practitioners actually look beyond their very limited training. I suspect they need to be told in strong terms that the science is moving on. But I agree an alliance with BACME is bad especially if people in BACME have any influence. I think it shows just how important...