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We don't seem to have this on the calendar. Can it be added, @Andy?

I couldn't tell what you wanted in your letter (sorry!). I had read almost 1,000 words and still couldn't tell where it was going, and was only skimming it to find where you were going to get to the point (sorry again!). It's important that he doesn't just skim. What do you want from Prof...

It's possible to leave comments on this article for those who want to draw parallels with the Cochrane review of CBT/GET. Tagging @dave30th and @Jonathan Edwards and @Graham and @Tom Kindlon (and am sure I'm leaving loads of useful people out!).

'Problematize'! Yikes.

I think the forum was set up with goals a bit wider than the science. The core values are listed as follows: Core Purpose and Values: Science for ME is an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us...

Just wondering how everyone is doing who has been attempting this... How are things with you, @leokitten?

Just tagging @dave30th and @Jonathan Edwards to see if there's any interest in this idea of an open letter to practioners...

Agreed. That would seem reasonable but I wonder how this would be expected to work in practice. My concern is that they've all be brainwashed to consider critical patients 'the enemy' and 'unreasonable' and that their training hasn't prepared them to grasp just how poor PACE is. And they're...

I'm very much against the 'naming and shaming' approach of clinicians who've been misinformed by people who seem to have been very successful in influencing colleagues and the media. The potential for it backfiring and the legal risk would be enormous. I also see the clinicians as victims in...

Is that predictive text? Apparently Word used to autocorrect 'Norman Tebbit' to 'Normal Teabag'.

I don't want to derail this thread but I'm interested in what to look for with OI if not autonomic dysfunction - can someone direct me to the thread where this was discussed, please?

Well done, @Emsho, superb job!

That was your 2,000th message, @Esther12! :)

Even recording it and posting it later would be good for those of us who can't go. I hope they'll do that, but I don't recall that being mentioned either (OTOH, I don't follow AfME's own social media).

Am I right in thinking there's no livestream this year? I can't remember seeing it mentioned.

Are either/both of you going to this conference, @dave30th, @Jonathan Edwards? Any thoughts on what looks interesting/rubbish on the programme?

BTW, I do think that patients volunteering for good-quality research is absolutely key to moving things forward for all of us as fast as possible. Trials and studies do have big problems recruiting and this slows research down considerably. The NIH intramural study is going slower than it needs...

Thanks, @mlapenna, for taking seriously the concerns expressed on this thread and for taking time to address them. I think it's a great idea to try to boost recruitment to good ME/CFS studies - it's win/win for both patients and researchers and can help get us all better faster. But I think...

Has anyone seen a schedule of the papers being presented?

Not having registered, I didn't realise you were asking for this kind of information, @mlapenna, and I share Trish's concerns. I think it would be better to openly maintain a list of studies and broadcast that list. Clinicaltrials.gov is worldwide (I'd thought it was US-only, but it's not) and...