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1. Activity pacing (like the APT arm of the PACE trial found to have no beneficial effect on it's own). In 2011 Bath was offering activity pacing and Mindfulness CBT. Part of the method for the patient to establish their own baseline was to keep an activity diary. In it each day is sectioned...

Thanks @Peter Trewhitt that's even better. Prevarication definitely. Either way this thread is now evidence of Cochrane's contribution towards causation of harm. This is from something I've already prepared: 1. Human rights (who.int) For those unfamiliar with this, my I introduce you to...

Almost 3 1/2 years ago. [My bolding in the narrative] First Do No Harm – What you need to know about the Cumberlege Review | Bevan Brittan LLP " Recommendations and actions for improvement In the introduction and overview to the report, comment is made that while the review team were asked to...

Excellent, :thumbup:! I've been looking for this for years!

True, but for the future, it is very important to now record the issue of consent; lack of clear impartial information which should have been provided prior to requesting consent, on the potential impact of this reseach, as a 'material risk' which patient's have the right to be informed of. The...

From the British Society of Physical and Rehabilitation Medicine. In the 'Others' list we are sui generis "thing of its own" "unique" and definitely not in the list of post viral illnesses or other long term conditions with the entry shown as "CFS/ME" The British Society of Physical &...

Thanks @Dolphin A quote on the forum somewhere recently, fits very well to this situation. 'Men occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing ever happened.’ Sir Winston Churchill. There is less talk in research papers about 'recovery'...

Rehabilitation is defined by WHO as: Rehabilitation is defined as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment”. Rehabilitation (who.int)

Agreed on the new paper published. There it is right there: "The toolkit will address the assessment needs and research recommendations (for a core outcomes database) identified in the 2021 NICE Clinical Guideline on ME/CFS. It will be produced following consultation with patients and with...

I think the purpose of the 2023 and 2024 papers was to update the earlier papers in respect of the use of patient data following on from the GDPR on data in General Data Protection Regulation - Wikipedia# Relevant also is the fact that Crawley's paper in 2013 looked at employment/benefit...

I haven't fully broken it down either it's far too much reading, and am not sure I've found everything. But I think together we've all found enough to prove the 20 year repeat which seriously brings doubt on whether valid consent was obtained for the PROMS research - because if it results in...

Here's a visual for you :banghead: The Code is More Like Guidelines (youtube.com)

That's the slight of hand they pull though @Trish They teach you about establishing your baseline, staying below your energy envelope, but in their activity homework you (in collaboration prompted by their suggestions and 'living to your values') actually increase your activity weekly! In...

Correct. ETA: not just Bristol. White did the same outcome research as Crawley (both published in 2013).

Take this comment, for example from the 2011 MEA article you found: "It seems that when people have had a poor experience of graded exercise therapy they felt they hadn’t had permission to step back,’ he says from the 2011 MEA article. [my bold] This is NEVER being taken into account in...

Precisely! I also referenced Crawley's separate paper (also published in 2013) in respect of 5 centres from the National CFS/ME Outcomes Database. The Crawley and White paper later that year does the same thing but for 6 centres. Similar results. I think the Correction in the White paper...

Yes - that's why I'm including it.

How weird! I've just finished a chapter on Epistemic Injustice quoting the same references, amongst others. It concludes that for pwME this, together with the 'multiplication' of suffering (Komaroff 21 July 2021) specific to pwME which includes silencing, over the last 67 years amounts to the...

There you go, if only they'd listend to hs rather than their own voices! What's the pharse "llisten to your patients, they're telling ou what's wrong". By completing ignoring severe patients for so long they've completely missed athis symptom. :)

Found one @Avro quoted @bobbler this morning CAnt' work out how to do this so have copies and pasted instaead from the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 | Page 22 | Science for ME (s4me.info) " bobbler said: ↑...