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Sadly they are asking them to improve by pushing their terrible clinical toolkit

It keeps managers in jobs. It keeps facilities managers in jobs. It keeps adjacent cafes and shops in jobs It keeps companies paying to rent buildings. It keeps bus and train drivers in jobs.

Healthcare 4 ME have been busy adding up numbers and making chaotic infonumbergraphics. Apparently there is an annual report. https://meassociation.org.uk/wp-content/uploads/2026/01/Annual-report-for-Health-and-Social-Care-MEA-PDF-2024-2025.pdf It beggars belief that in the year 2026 anyone...

Another “kind of like ME but not really” diagnosis cured! If only I didn’t have actual ME/CFS…

Don’t watch this programme but might drop in and see how well she’s doing with thinking and moving.

An update via email today NHS care for ME now On Friday 1 May our lawyers issued our second letter before claim. Our challenge is in direct response to the Government's announcement on 24 March that it would not begin to consider NHS provision for severe/very severe ME before April...

It’s the fundamental misunderstanding of pacing again. Some (cough, BACME) seem to want it to move into “pacing up” aka doing much more. Some seem to leave the lingering “and you will be recovered”implication hanging in the air, unspoken but sort-of implied. It carries a sense of “if you...

That’s interesting @Cornelli I would be interested in hearing a positive experience of learning to pace via an OT I do think a massive part of “learning to pace” is just learning you have to let go; it’s not fair; no you can’t do that any more; no that isn’t worth the inevitable crash...

I understand all of that but telling your story in person to a politician hits differently to a social media campaign. As I say I have no issue with the campaign per se, I’m just fed up of being asked to talk/video/photograph myself and talk about myself. There is certainly a place for telling...

This Fatigue App sounds like it’s suffering from the same problems as the Elaros one - it’s a database with lots of “added value” extras. Only problem being the “added value” is internet trash info /AI slop which is cheap, ineffective, useless and annoying to users. Compare to user generated...

Does anyone know how they are calculating your “points” allowance and or usage? I know how visible do theirs, and I know it’s based on the Workwell paper (fairly scant scientific basis but in their defence they don’t claim that it’s perfect, and you should reduce or increase the daily level...

I just think they need a better campaign, it’s not going to ”cut through” as you say, and the only box it’s ticking is community involvement.

I’m glad they are doing something, but I’m really fed up of these types of campaigns. I don’t want to share my story, I’m a private citizen and I don’t want to think about my ME journey or what it’s taken from me, in public.Its bad enough in private. Just give me some care. Health, Social, whatever.

They did have a kind of report which got pulled shortly after its launch, I wish they would bring it back. The usual monthly report is always the same for me, top 5 symptoms don't change much.

There is a free app called Bearable which allows you to edit symptoms to suit yourself, and will generate reports from your records. Visible will do this too, pulls things into a graph by symptom or compare two symptoms over a time period. It’s not great at downloading info, you need to CSV...

Visible has 4 in symptoms 1.None 2 mild 3 moderate 4 severe And in a crash Y/N

Nice. I wonder whether they will be writing to Elaros? BACME?

I think the NICE guidance for ME/CFS NG206 is clear on not offering generic courses or treatments for other illnesses to people with ME/CFS because of the risks, as well as clear on exercise not to be advised or undertaken unless agreed and overseen by a physiotherapist/medic. Again, this is...

Hovering isn’t a good thing. Squatting is different and half the world does it. You see footprints on toilet seats sometimes!

Not quite what you asked, but I get occasionally what I called “irritated bladder” and it means I need to keep going every five to ten minutes. Just like cystitis without the burning. After various efforts with daily medications for incontinence (which made it much, much worse) and some...