Search results

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: ↑...

SNAP! Like chewing from opposite ends of a string of spaghetti we find we meet in the middle! There's been a few posts on the forum over the last week where the writers have demonstrated the same symptom I have, not in the topic but in the physical act of typing the words. I think one of...

I'm so sorry to read the experiences that your wife and you were put through @tuppence. How lucky you were to have each other as a team. I agree with everything you say.

Not sure, but this may be what’s going on with a toolkit by Bristol which of course will also be used in Bath. Before reading the rest of this, (2,059 words! which I’ve condensed as much as possible but does not include everything); please bear in mind at all times that NICE Guidelines are...

isn't he just @Trish

Thank you. A massive hug to the lady and her husband, and huge wave to team at DecodeME :heart: and great big :thumbup: to Channel 4. "you can never underestimate.... it didn't just steal from me, it stole from him too and you have no idea how guilty I feel about that sometimes." Currently...

Internet treatment/re-treatment?

I haven't been able to follow all of this discussion, but it seems to me from the recent comments that there may be another issue arising, so I'll just leave this here. What is valid consent? | ICO

Thank you for posting.

Is there a pattern developing here? These are notes I compiled in 2022 [long read] The first UK study to even properly look at outcomes was begun in 2007. It included data from 5 CFS/ME clinics in England covering the period from 2006 – 2010 and was categorized as service evaluation. [1]...

Sorry, forgot to copy over the explanation of neuronal kindling with link. "The theory put forward for neuronal kindling is contained in a paper titled “An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” published on 1 March 2011 (one month after the PACE trial...

Below is an unedited extract of a chapter in a document I'm preparing. "Denial of Medical Treatment and Investigation “Don’t call an ambulance for CFS again”! ..... we as a patient group are regularly denied the ordinary medical investigations into new onset symptoms available to others –...

The Report of the Cumberlege Review titled 'First Do Harm'. 8th July 2020 (delayed due to Pandemic) Independent Medicines and Medical Devices Safety Review report - GOV.UK (www.gov.uk) It was initiated in February 2018. Its primary focus was to examine how the health system responds when...

That's true Andy. But it's what, where, and when it has been said, that I was waiting for, (more so, than the FND aspect), although the fact that it was repeated at an FND Masterclass is a bonus - wider historical context and current day timing. The FND masterclass is annual event, usually...