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It’s a horrible process, yes. I had to go to appeal to get basic level. But in order to actually “pace” I need higher level. I’m not sure that “well yes I can do x, y, z but I shouldn’t” will wash.

I guess there will be a new health minister. It’s so disappointing because Gwynne had experienced Long Covid there was hope he’d be a good ally.

I agree with this approach. On moving here, I was met with thick grease. I applied the cleaning product and I bought cheap shower exfoliation gloves which I put on over rubber gloves, and just squished my hands in the filth, with a bowl of warm water for rinsing! Gloves only survived one job...

I bought one of these for £28 in the sale. Cheapo versions are available on Amazon, eBay etc. It is brilliant for cleaning the bath, and also the wooden floor if I have spilled something. You do have to have some arm strength to control it, but no bending or scrubbing pressure needed! In fact...

Andrew Gwynne Health Secretary Sacked over offensive comments https://news.sky.com/story/andrew-gwynne-sacked-as-health-minister-over-comments-posted-on-internal-whatsapp-group-13305272

I dare you to reply “because”

A different type of frailty called PEM perhaps? Which isn’t actually frailty.

I feel like Sonya promised a review of all docs in light of the last letter?

That’s nice. Or you can just ask visible for their data, they have monthly FUNCAP 27 as well as daily exertion, heart rate etc.

I think the “feel like…” is corporate speak. It is useful in a 1-1 or personal situation to acknowledge someone’s sense of a situation and/or their feelings. It is passive-aggressive in a corporate/formal situation to minimise someone’s complaint as a “feeling”. It recognises that point of...

I was recently in severe pain (same as most months) I looked on the internet. I’d rate my pain at 8 on the 1-10 pain scale. If I didn’t know it was period pain, I’d call an ambulance. Apparently it’s not a concern to have such pain for up to 3 days during menstruation. Intense pain, limiting...

I got eczema and hay fever for the first times in the 2 years before I became unwell (which is now the “start” of my ME) recently become allergic to my cat, also have the micropor tape irritation, can’t bear it!

This just reminded. I read “something” on the internet about sleep apnoea. It said one of the signs can be “controlling” behaviour. It was clearly referring to men. I thought that was interesting as it is traditionally a “male” problem (although it affects plenty of women) If you are having un...

That would hurt my arms.

What were you doing with your arms when you were going up/down the stairs? I find my arms hurt and tire easier than my legs. If I did stairs I would hurt them by either raising them to hold the bannister (I’m very short) or doing the Arm action we unconsciously do when going up stairs - elbows...

I am definitely disabled and always identify as disabled. So maybe it’s just me and three others in this data who think so? I do think the Visible data is useful but I’ve not been impressed with the recent findings. I think it’s a case of good data in poor hands, though. It seems a bit “we’ve...

I think PIP and benefits is a really good demonstration of why people don’t slow down. Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years. Are you well enough to wash, dress, cook, walk etc yes but it tired me out and...

Oh my days. We’re researching the opinions of sick people now?

I agree with Trish. I think the BPS types have managed to weaponise the initial “oh yes I do feel a bit better” as evidence that we are needy, attention-seeking, perfectionist, high achieving moaners who just need CBT and yoga. I think that what we would describe as hopelessness, and the mental...

My point being this is a very narrow field, as it’s looking at women who do have ME/CFS or LC, don’t have migraines, can use a combined pill and do do so. I am actually getting a migraine