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I’m thinking more social media campaigning, going viral with a slogan, then releasing a press release what is “psychwashing”? The disturbing medical trend which disproportionately affects women and people of colour. Not only denying treatment, but actively causing harm. I’m not a scientist...

Psychwashing

This topic has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Ah. Yes. I was going more with slight of hand; 3 card monty Don't look over here while we stop counting Long Covid and rename it anxiety - which is...

I think I said elsewhere, ME (and suspected ME/“meets the criteria for, etc) needs to supersede everything else. Because there’s a lot of double-speak, and in UK hospital now, Millie McAnish isn’t treated in line with NICE guidelines because the ME diagnosis was from “another doctor” and she’s...

I think the idea for a Jigsaw of insidious double-speak treatment is a good idea.

I believe the BACME guidance says something at the front that AforME and the MEA have contributed/approved? I can’t find it now, maybe I’m mixed up.

How many times will this wheel be re-invented? NICE published its Baseline Assessment tool in 2021 (Baseline in the classic sense, not the “establish your baseline”sense) BACME has this guide updated 2022 PROMS 23-24 all totally different Can I get any HCP to treat me with any of the above? No.

I’m trying to imagine other Clinician groups creating guidance with the option to include WRAP How might the public/patients react? If you “offered’ it to MS patients Cancer patients Lupus patients HIV+ patients

Yes well my cat may be useful.

Yes - a bit like the deflated look of a new Dr when they ask if I’ve had my vit D levels checked? and I point out I take it daily, have done for a decade. And again it’s a big old piece of work, that workbook. Why would you think that’s useful for someone with fatigue? We need to raise it with...

We know that pwME are considered disagreeable, and resistant to “treatment” by healthcare professionals particularly ones of the BSP persuasion. I think that’s why the “agreement” part is ringing alarm bells. Many of us were asked to “agree” to do something we didn’t want to, otherwise be...

“Just pick out the bits you can eat” my life as a vegetarian who always gets served meat “Just pick out the bits you need” my life with ME in an NHS of generalised advice

This is the contents list for the WRAP - it’s basically a workbook for the patient to fill in. Bold is my emphasis, the more unhelpful sections IMO Contents Page Section 1 Things...

I just use a wellness wheel. I’ve changed a few of the topics a bit.

WRAP advocates exercise, alongside lots of things pwME can’t do like talking to someone (sarcasm! I often can’t talk) It’s very much not specific to ME, I thought NICE 2021 had guidance that clinicians aren’t supposed to recommend standard courses/treatments that don’t take ME into account...

Anyway I have a philosophical strongly-held belief, not merely an opinion, that I deserve treatment for my ME which is biologically tested and medically proven to work I want NHStreatment which is not BSP or psychological...

Ask David Putrino, he’s collecting my (and others) visible wearable data.

Wow wow wow @Trish excellent sleuthing. I’m available if anyone needs me to - get things mixed up, moan, have a general suspicion “somethings going on”. Otherwise, here cheering everyone on!

So was it the MEA mixing them up by quoting TIMES in an article about Gladwell CFQ and Tyson PROMS? my head spins.

Hang on I’m confusing myself there are 3 projects Gladwell’s review of Chaldea Fatigue Questionnaire TIMES PROMS Gladwell https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2335861