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I've been browsing some of the BACME guides which have all been updated to supposedly be NICE compliant. https://bacme.info/library/management_guides/ The guide to therapy includes a 'pragmatic model' on page 3 which still has stuff like early life trauma as a predisposing factor, and their...

Fixed.

Afternoon sessions Delivering NSS & DHSC recommendations Dysregulation BACME severely affected guide. Long- Covid CYP & Adults Outcome measures led by Pete Gladwell Care & Support Plans Moving NICEly by someone who runs outdoor wilderness therapy Mindfulness by a psychotherapist

I think it would be reasonable for pwME to ask for a transcript of Dr Alan Stewart's keynote speech. He's one of the many medical advisors to the Sussex group led by Colin Barton that has a disproportionate number of medical advisors for a local group, all proponents of the BPS approach. See...

Some posts have been moved to: COFFI - The international collaborative on fatigue following infection

The project funded by the MEA and led by Tyson and Gladwell is creating several PROMs. The first two are TIMES and PASS. This is the project Sarah Tyson wrote about in the latest MEA article, and quoted from pwME who filled in the two questionnaires (PROMs) The separate Gladwell study referred...

Confusing, isn't it. They are both part of this project. TIMES is the symptoms one that was run in November 2023. We don't seem to have had much discussion about it: https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/ PASS...

If the diagnoses are based on questionnaires, this is most likely to be about overlapping questions, not necessarily overlapping conditions.

I sympathise with OT's and physios being put in the position of diagnosing people with ME/CFS and/or Long Covid. As far as I know, they aren't supposed to diagnose, they are supposed to help people manage their daily lives, mobility etc. They also can't prescribe medications, so pwME/LC need to...

Returning to the recent MEA article about this project, a couple of comments: It opens with: We have a thread discussing that study here: Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell I'm not going to start up...

https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/

I have 2 problems with this research. First, why wasn't it done decades ago? Anyone with half a brain could just read the 11 statements and see they were useless for 'measuring' severity of fatigue in ME/CFS, for all the reasons found in this research, yet UK clinics and researchers all over...

I think a combination of upright time as measured here, time lying down and steps could be very useful. I like this version of upright time with an ankle worn device because I think there is a specific problem with sitting feet on floor being much more problematic than sitting with legs...

From an email: ME/CFS Research Update: an overview of the current research in Germany and Austria Hamburg, 10 April 2024 The new ME/CFS Research Update offers patients, relatives and interested parties an overview of the current research landscape based on data from the ME/CFS Research...

I think it is a good idea to expand the severity scale to include more detail at each severity level. I always seem to fall between levels, whatever scale is used. I had a quick attempt to fill this in. I couldn't make sense of how it worked, and how one retrieves saved data for comparison over...

I don't think that's right. I think it is intended to be a whole suite of new resources as a toolkit for clinical care, providing information on which the clinician can base that care. The service evaluation aim is just a part of the package.

I think the latest reply from Cochrane is little more than an acknowledgement of receipt of our letter, sent simply because their standard automated response to all emails includes a promise of a reply within 3 weeks, so they had to send something now the 3 weeks are up. Basically it says there...

Sigh, so the project rolls merrily on. I hope the PASS questionnaire will be radically revised.

I assume an individualised structured titrated return to activity program is a version of GET.

I think the "deliberate" versus "fuckup" question does have relevance because it has implications for the future. The appointment of Walitt to a position of power over ME/CFS, Long Covid and GWI and anything else he manages to drag in to his Interoceptive department at NIH may have been a...