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Interesting piece. I couldn't find those quotes, though there were related comments in NICE like: What about this claim?: There were people who have published research on ME/CFS included in the panel. Who is anti-recovery?

The ones at the top of the political pile still hold a lot of sway. The recent 'medical leaders' response to NICE shows that they're not that quiet. I get the impression that these sorts of people prefer working behind closed doors anyway. We can say that the people we choose to respect agree...

Regardless of whatever ideals you think should prevent this being the case, I think it's pretty clear that in the reality we face patients sending stupid and unpleasant messages on social media have made life worse for patients and made it easier for academics to get away with behaving badly. I...

Terence Stephenson is the new head of the HRA and is doing the clock long covid study with Trudie Chalder and Esther Crawley. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/977177/Children_and_young_people_with_Long_Covid__CLoCK_.pdf

New CIA report: https://www.nytimes.com/2022/01/20/us/politics/havana-syndrome-cia-report.html To me this sounds more likely that the idea that a foreign adversary is using a new sonic/energy weapon on a seemingly random selection of different diplomatic employees around the world. edit: At...

Hi @Anne Kielland . Thank you for posting here and offering to answer questions. That's very good of you. I'm only an English speaker so am having to rely on just an auto-translate version of your VG op-ed, and expect I will end up missing some of the nuance to your points, but there were some...

Here's an archive of the web-page I think I'd linked to: https://web.archive.org/web/20130824093822/https://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html To me, the opening paragraph makes it pretty clear that this is a write up of the web-based...

They listed it under 'Other study outcomes': They say: "At T0 and T1, data on physical activity level and sleep are also gathered by using an actigraph and completing a sleep diary." They also had this table on outcomes and when they are to be measured...

Pretty OT, but last year FOM gave an award to Emma Giblin for her (unpublished) CFS work https://www.fom.ac.uk/clinical-excellence-awards/peter-taylor-award-winner-announced "Ira Madan was a fantastic supervisor and without her help and support I could not have done this.” Ira Madan has a...

I remembered one of the authors there, David Scales, had written this piece citing Tuller: https://www.cjr.org/analysis/lyme-disease-contested-illness-empathy.php

What are you hoping to achieve with this correspondence?

Lots of patients with all sorts of symptoms dislike the label 'chronic fatigue syndrome' being applied to them. I don't think that need be any sort of insult to those already labelled with 'chronic fatigue syndrome'. I feel as if twitter is a medium that makes it really easy to misunderstand...

I don't wear a watch because it's too much trouble - I might be unusually lazy.

At the same time, asking participants to wear actometers for at least six months (you need at least two time points) is much more of a burden. I wonder if they'll look at whether activity stayed constant over the 12 days, or changed over that time.

I feel as if it gives useful information about that point of time. That they're only collecting it right after the intervention, before patients have had time to see how this approach fit within their lives over the longer term is more of a problem imo.

They also say: Though it seems that these are only measured at baseline and immediately after treatment.

Looks like some more slides on twitter here:

Sorry, that was just my poor copy\paste. The full name, along with everyone's affiliations is at the link.

I was also thinking about those complaining about how many people on the ME/CFS committee had some personal connection to ME/CFS, (though it was always a clear minority). How many people on the depression committee would need to have had a personal experience with depression, or a family member...

Guideline committee: https://www.nice.org.uk/guidance/gid-cgwave0725/documents/committee-member-list-2 Just posted as there were some familiar names like Tony Kendrick. Not sure why there were resignations. Chair Prof Navneet Kapur Members GP Prof Carolyn Chew-Graham Counsellor Jeremy...