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I totally agree that any physical activity, not just steps, is important and good to record. Also changes in heart-rate are relevant for those with POTS/orthostatic intolerance. My daughter's heart-rate goes ridiculously high when sitting watching an exciting 6 nations rugby match on TV.

I did raise this at the end and the Physios for ME attending (Nikki Clague Baker and Karen Leslie) agreed this was important.

Some comments in the chat after Sarah talked re wearables were that other activities such as playing the piano or stroking the cat showed increases in steps. For people with ME, the former certainly could be relevant activity. Of course these types of wearables don't I assume measure cognitive...

Tempting, but probably not productive...

Posts moved from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Excerpts from Email re workshop tomorrow: "Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30. The workshop aims to generate research...

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