Alison Williams

GP and dentist, only when able, both 5 minutes walk with rollator away.

I absolutely get this, I have dragged myself places rather than (as healthy people put it) 'just' getting a taxi. There's so much more to it, the chat, the getting in and out. I like being able to set my own pace and stop and rest when I need to.

I've been using the Visible armband and app for almost 6 months. Its been really helpful, I feel like I'm pacing much better. You can download the app for free to get an idea if it might work for you. The armband/tracker adds a lot of extra features is subscription based.

The hallmark symptom that differentiates ME/CFS from other illnesses that involve fatigue is PEM - Post-Exertional Malaise, a disproportionate increase in symptoms that hits 24-72 hours *after* activity.

Visible has helped me pace successfully. It has done more for me than the medical profession. I'm happy to pay the sub and accept a few technical glitches. This device should be NHS funded so everyone can benefit.

Visible has helped me pace much better than I used to. It also tracks symptoms and does some other things. I got the subscription version after trying the free app.

Personally speaking I'd rather be assisted to live!

Some kind of life-sucking worm? Sorry, but ME is just not pretty.

Well, this is a new take on assisted dying.

There's going to be a stocktaking. How long does it take to count no home-based care, no hospital care, in fact, no care.

#pwme

I read this and it is like a description of another world. This is what we need, and we get nothing. I am not even very severe, just severe and barely managing. Very severe must be a living nightmare.

I don't want to follow you. I don't want anything to do with your company! I got my package but only thanks to a kind neighbour, no thanks to Evri. Your courier just dumps all the parcels for this large appt block wherever he likes. He does this every day!

I agree, we need different metaphors, better metaphors. I rather like Vlad Vexler's metaphor of chronic illness as a dance, a brutal kind of dance sometimes but still, a part of life, some rough terrain that can be negotiated more or less skillfully.

Local 'fatigue service' is commissioned on the basis of 'getting people back to work', if you are too ill to work, no service for you.

#Evri handed my package "directly to a neighbour" I tracked it down, thanks to an actual neighbour. It was in a heap of packages in a different area of my apt block, in a lobby by a door that I do not have access to. The heap included packages for every part of this block of over 200 flats!

You know they are calling it 'graded activity therapy' now, or 'pacing up'. Or, as my doctor said to me many years ago when I was mild/moderate, 'Do a little more every day!'

Long, but not a difficult read. Well structured so you can get to the info you need easily. Highly recommended!

How long can it take to stocktake something non-existent?

I don't mean I want a *cure* when I say I need help. I mean I need practical help to live with it, advice, ongoing support, advocacy, not just a shrug and a wave from medical professionals and a "Sorry, there's nothing we can do."

My first reaction to this headline was, what ME services?

#pwme #mecfs #ME

Sign the Petition ME Association Chair Neil Riley must step down

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action.

www.change.org/p/me-associa...

A long low (bed-height) desk so I can recline elegantly on my body-pillow while typing and still have room for a glass of lightly-sparkling electrolytes at hand.

#MECFS #pwme

a) rest and rest b) no c) avoid having to go to medical appointments, they are the worst PEM inducing things of all

#PEM #pwme #MECFS #pwLC

Stop? It's happening all over again with Long Covid.

Heard some of the 'assisted dying' debate. It struck me that there are are two kinds of relevant 'personal experience'. 1. An empathetic connection to someone in distress. 2. A discomfort at having to witness someone in distress. A difference with implications for chronic illness too.

ME is an illness, often severely disabling, for which there is no treatment or care available from the NHS.

I'm glad it worked, but I have to point out that the NICE guidelines say that this psychologically-based process should NOT be used by GPs as a treatment for #ME

white butterfly
thoughts
of Kodokushi
and other ways
of escaping

bus engine
espresso machine
laughter
how loud it is
in the outside world

Blithe Spirit Vol 34 Number 4 Nov 2024

#tanka #poetry #pwme

It's an #ME care desert here on the south coast of England too, and most places in between I suspect.