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Have you previously had an email 2 weeks after you personally filled in the questionnaire @Trish, or two weeks after it has been taken down. I have only done the last one, for my daughter, earlier this week.

My daughter has not had regular significant pain Has now had ME for 13 1/2 years

The following extracts from the FAQ re a mental health PROM are not at all reassuring. Too many concerning statements to highlight. "How I feel and my heath changes all the time, how can I complete the questionnaire? We know how you feel can change on a day-to-day basis. How you feel now may be...

Thanks for the work that you and others have done on this, @adambeyoncelowe

Summary from benefits and work newsletter re 2024 PIP changes Green Paper...

Interesting article from Medscape on brain training: https://www.medscape.com/viewarticle/does-brain-training-really-improve-cognition-and-forestall-2024a100088j?ecd=wnl_infocu1_broad_broad_persoexpansion-algo_20240522_etid6535759&uac=264294PY&impID=6535759

I think this has been arranged by MEAction Scotland/UK, which probably explains why Jaime S is on the program.

Re youngsters (CYP =children and young people) "The chance of a partial or full recovery is better in children and young people with ME/CFS than in adults. Therefore, it is important that the diagnosis is considered sooner rather than later. The sooner treatment is offered, the greater the...

At minimum they need to ask how much people can do in a week. Eg. I could have a shower or prepare a meal or xyz, twice a week on average.

This would be a very reasonable request. If there are any members of MEA left on here, they could ask. (Would probably be rejected immediately if S4ME requested it)

Brilliant

For those, like me who didn't know what the Lacanian model of science is -#3 "For Lacan, science is about knowledge rather than “truth”, and the latter is regarded as something which rather belongs to the spiritual or religious realm (1966)"

I doubt that many, if any other presentations will be available. I guess AfMe may be able to obtain some slides or info from Chris Strain's talk on e-learning. Secrecy, from patients has been their way since inception.

I went to a screening in Crowborough, E Sussex, which is where I first met the group started by the amazing and lovely Graham McPhee. There was a very good Q and A afterwards. There was a community paediatric nurse from the Brighton area there, who had never heard about ME and was keen to find...

Their "Theory of Change Model" https://static1.squarespace.com/static/59fa3e7712abd968ad568746/t/5eea774049ee291ea2b904b1/1592424257950/Theory+of+Change+ipse+model.pdf

Link to a general participant info leaflet: https://static1.squarespace.com/static/59fa3e7712abd968ad568746/t/5eaece41c3dfb005b7286222/1588514370267/Info+for+participants.pdf Have no idea how this relates to pwME

Per the original draft programme for the one day conference, this was an option for one of the workshop sessions during the day: Workshops repeated (2 sessions) 1 Delivering NSS & DHSC recommendations 2 Dysregulation 3 BACME severely affected guide. 4 Long-...

Further info about the conference, including participant bios: https://bacme.info/wp-content/uploads/2022/08/Programme_final2.pdf Looks as though wilderness adventures is no longer there...

"Many people living with long covid are attempting to return to work, or stay in work, while learning to manage an emerging long term condition.2 These challenges may be compounded by workplace burnout, fuelled by labour shortages, the psychological effects of the pandemic, widening...

From Garner's ramble: "You’d wake up in the morning and sometimes feel absolutely fantastic and some days you would feel dreadful and wouldn’t be able to move, have headaches and back pain and all sorts of things. And this fatigue, exhaustion: I could hardly lift my hand from the bed at one...