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Alison Williams

@tadpole99.bsky.social
127 followers 81 following 86 posts

Tanka editor for Presence haikupresence.org/home Writer of haiku, tanka and more haikusoup.blogspot.co.uk Recently diagnosed with ME/CFS and learning to live with it A bit of a hermit Fascinated by Icelandic volcanoes Retired librarian

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Reposted by Alison Williams
Anil van der Zee @anilvanderzee.bsky.social · 24/09/2026
Great rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands... #pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Alison Williams @tadpole99.bsky.social · 16/09/2026
Quail Eggs issue 6 is out! quaileggstanka.blogspot.com
quaileggstanka.blogspot.com
Quail Eggs - a tanka journal
Quail Eggs a tanka journal
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Alison Williams @tadpole99.bsky.social · 21/03/2025
GP and dentist, only when able, both 5 minutes walk with rollator away.
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Alison Williams @tadpole99.bsky.social · 12/03/2025
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.
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Alison Williams @tadpole99.bsky.social · 02/03/2025
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.
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Reposted by Alison Williams
Mira of Kyiv 🇺🇦 @reshetz.bsky.social · 02/03/2025
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Alison Williams @tadpole99.bsky.social · 23/02/2025
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.
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Alison Williams @tadpole99.bsky.social · 22/01/2025
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.
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Alison Williams @tadpole99.bsky.social · 19/01/2025
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.
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Alison Williams @tadpole99.bsky.social · 19/12/2024
Personally speaking I'd rather be assisted to live!
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Alison Williams @tadpole99.bsky.social · 12/12/2024
Some kind of life-sucking worm? Sorry, but ME is just not pretty.
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Alison Williams @tadpole99.bsky.social · 11/12/2024
Well, this is a new take on assisted dying.
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Alison Williams @tadpole99.bsky.social · 10/12/2024
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
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Alison Williams @tadpole99.bsky.social · 09/12/2024
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.
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Alison Williams @tadpole99.bsky.social · 09/12/2024
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!
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Alison Williams @tadpole99.bsky.social · 07/12/2024
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.
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Alison Williams @tadpole99.bsky.social · 07/12/2024
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.
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Alison Williams @tadpole99.bsky.social · 07/12/2024
#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!
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Alison Williams @tadpole99.bsky.social · 07/12/2024
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!'
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Alison Williams @tadpole99.bsky.social · 06/12/2024
Long, but not a difficult read. Well structured so you can get to the info you need easily. Highly recommended!
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Alison Williams @tadpole99.bsky.social · 06/12/2024
How long can it take to stocktake something non-existent?
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Alison Williams @tadpole99.bsky.social · 06/12/2024
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."
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Alison Williams @tadpole99.bsky.social · 06/12/2024
My first reaction to this headline was, what ME services? #pwme #mecfs #ME
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Reposted by Alison Williams
Alexis Gilbert @alexisme.bsky.social · 04/12/2024
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...
change.org
Sign the Petition
ME Association Chair Neil Riley must step down
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Alison Williams @tadpole99.bsky.social · 03/12/2024
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
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Alison Williams @tadpole99.bsky.social · 03/12/2024
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
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Alison Williams @tadpole99.bsky.social · 01/12/2024
Stop? It's happening all over again with Long Covid.
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Alison Williams @tadpole99.bsky.social · 30/11/2024
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.
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Alison Williams @tadpole99.bsky.social · 27/11/2024
ME is an illness, often severely disabling, for which there is no treatment or care available from the NHS.
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Alison Williams @tadpole99.bsky.social · 27/11/2024
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
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Alison Williams @tadpole99.bsky.social · 27/11/2024
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
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Alison Williams @tadpole99.bsky.social · 27/11/2024
It's an #ME care desert here on the south coast of England too, and most places in between I suspect.
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Reposted by Alison Williams
sarah boothby @swastrosarah.bsky.social · 27/11/2024
This matters because confusing an illness as lethal as #ME can be with a mental illness is very high risk, both to health and care professionals and to everyone at risk of disease progression. Everyone with ME and #LongCovid ME is at risk of disease progression without a clear understanding of #PEM
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Alison Williams @tadpole99.bsky.social · 27/11/2024
ill in bed he shakes with laughter at the absurdity of being a human ill in bed Humour: The British Haiku Society Member's Anthology 2024 #tanka #poetry
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Alison Williams @tadpole99.bsky.social · 26/11/2024
Which words catch your eye, #pwme? (Words taken from my journal notes.)
ME wordcloud
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Alison Williams @tadpole99.bsky.social · 24/11/2024
I use tarot cards (as a prompt to my unconscious mind rather than for divination) and it recently struck me that the Four of Swords is the perfect card for ME. A knight, lying down, resting, with his sword close by, ready to fight from his bed as so many people with ME do. #pwme #me #tarot
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Reposted by Alison Williams
Janet Dafoe @janetdafoe.bsky.social · 23/11/2024
Hello blue sky people! I have 16,000 Twitter followers to whom I am dedicated to helping with MECFS. How will I ever reach that over here? Do I need to post on both places? ❤️
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Alison Williams @tadpole99.bsky.social · 23/11/2024
I hope you succeed, and that you get appropriate care. I'm in two minds about when it would be right for me to ask for help, because just having someone else in my space would be a kind of torture too.
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Alison Williams @tadpole99.bsky.social · 23/11/2024
In many ways we exemplify the human condition, which is varying degrees of imperfection. When I write I write from my own experience of life and so much of my experience is of the brokenness that is #ME it would be weird if I walled off that part of my life and 'didn't let it define me.'
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Reposted by Alison Williams
Katy B @katybrc.bsky.social · 23/11/2024
"The article caused ME advocacy groups & campaigns including @longcovidadvoc.bsky.social & #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social a Dr with #ME also penned a retraction letter that more than 1000 people have signed" thesicktimes.org/2024/11/22/a...
thesicktimes.org
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
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Alison Williams @tadpole99.bsky.social · 23/11/2024
For the worst days I keep a 'crash stash' within reach. Water, meal replacement drinks, snacks, wet wipes. I'm used to it but really it's shocking that people have to live this way. My GP said I seemed to be well informed about self-care. Just as well as there is nothing he can offer.
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Alison Williams @tadpole99.bsky.social · 23/11/2024
Venting may not reduce anger but I find that if I can channel my anger into energy with which to write emails - thoughtful ones about the issues, not just expressions of anger - and send them to the people responsible for making me angry it sometimes has a positive outcome.
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Alison Williams @tadpole99.bsky.social · 22/11/2024
It's infuriating to see Long Covid sufferers, even if they are clearly experiencing Post-Exertional Malaise, being advised to exercise and warned against deconditioning. We don't need to make these people worse! #pwme #longcovid
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Alison Williams @tadpole99.bsky.social · 21/11/2024
Russian dolls in our youth we learned how to build a shelter and retreat to it Presence Issue 77 November 2023
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Alison Williams @tadpole99.bsky.social · 21/11/2024
Putin is probably not as mad, or as much of an evil genius, as he would like us to think he is. Reminds me of... someone...
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Alison Williams @tadpole99.bsky.social · 21/11/2024
Also, you get better views on webcams with little or no danger to life and/or limb.
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Alison Williams @tadpole99.bsky.social · 21/11/2024
CFS - Chronically F**ked Syndrome
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Alison Williams @tadpole99.bsky.social · 21/11/2024
Its surprising what gems from the past a little digging will unearth. www.s4me.info/threads/me-a... #pwme
s4me.info
ME Association magazine summer 2019
Someone has just shared with me this quotation from the summer edition of the ME Association magazine: It does worry me that some people with ME...
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Alison Williams @tadpole99.bsky.social · 21/11/2024
Got a reply to my email to the MEA about the Chairman's editorial. The poor person who has the job of replying directed me to the non-apology that we have already seen. I replied that I was not 'unduly upset' I was angry and asked for that feedback to be passed on to the MEA leadership. #pwme
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Reposted by Alison Williams
Katy B @katybrc.bsky.social · 21/11/2024
One of the largest & most active #ME F/book groups has just deleted all recent posts relating to ME Association Chairman Neil Riley, his recent article & wider issues with the MEA The MEA have until now restricted comments on all X & F/b posts #pwME need safe online spaces where we can discuss this
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