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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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Reposted by Alison Williams
Mira of Kyiv 🇺🇦 @reshetz.bsky.social · 02/03/2025
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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 · 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 · 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 · 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
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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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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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 · 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
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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Alison Williams @tadpole99.bsky.social · 20/11/2024
Iceland eruption has started! #iceland #eruption
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Alison Williams @tadpole99.bsky.social · 20/11/2024
A while ago I wrote to my MP about the lack of a commissioned service for severe #ME in his constituency. He has replied to say he is going to approach the ICB about it! Self-advocacy and advocacy for #ME can be paced too. It may not be much but I do what I can. #pwme #me #me/cfs #advocacy
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Alison Williams @tadpole99.bsky.social · 20/11/2024
Hearing so many people say they've just 'crossed over' its like the afterlife here. #spooky
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Alison Williams @tadpole99.bsky.social · 20/11/2024
Having a chronic illness is a bit like being Ukraine. Attacked by a malevolent force no one wants to face up to. Not able to either win decisively or to give up and die. Suffering for so long that people get bored of hearing about it and look away. 1000 days. #pwme #me #me/cfs #ukraine #chronic
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Reposted by Alison Williams
Long Covid Advocacy @longcovidadvoc.com · 20/11/2024
The danger of inferring your experience applies to all! #longcovid #mecfs Do you have a meme/gif that actually relates the experience of ME/LC?
Eric Idle from Monty Python as a medieval man in medieval clothing. Lying on the grass with a heavy backpack with an arrow sticking out of him. 
Text, in white: JUST GET UP & MOVE AROUND A BIT MORE
ME & LONG COVID PATIENTS.
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Alison Williams @tadpole99.bsky.social · 20/11/2024
Anyone else using www.makevisible.com and how useful are you finding it? Its working well for me. #me #me/cfs #technology #heart-rate
makevisible
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Reposted by Alison Williams
Long Covid Advocacy @longcovidadvoc.com · 19/11/2024
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
It is shocking to see allies provoke distress in the  community. We feel that the letter from The ME Association's Chairman of 20 yrs, Neil  Riley, in the ME Essentials magazine was deeply inappropriate, potentially harmful & out of touch.

The 'othering' & stigmatisation of ME patients as 'difficult'  can only be concluded to be abusive & reflective of how people with ME are often demeaned by the medical profession.

Strong action is needed from The ME Association to restore trust & repair reputational damage; an apology for "undue upset" is not an apology.

It is our sincere wish that a way forward is found to resolve the situation. In line with There For ME, we shall remove all links & association with The ME Association.
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Alison Williams @tadpole99.bsky.social · 19/11/2024
first snow I wake from a dream of such deep comfort that for a moment I can hardly move Presence 57 March 2017 No snow down here on the UK south coast #tanka #snow
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Alison Williams @tadpole99.bsky.social · 19/11/2024
My response to the ME Association re Neil Riley's editorial, as someone asked. #pwme #me/cfs #me
Letter to ME Association regarding Neil Riley's editorial (too long to include in full)
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Alison Williams @tadpole99.bsky.social · 19/11/2024
Sent my response to the ME Association regarding Neil Riley's bizarre rant of an editorial. My newly developed self-advocacy skills are proving quite therapeutic. Now to get some rest. #pwme #ME/CFS
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Alison Williams @tadpole99.bsky.social · 17/11/2024
More than two years on, this still seems to sum things up pretty well retired I find myself living a cat's life watching the world through half-closed eyes Presence Issue 73 July 2022
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Alison Williams @tadpole99.bsky.social · 16/11/2024
Post a picture you took (no description) to bring some zen to the timeline.
Rocks in Iceland
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Alison Williams @tadpole99.bsky.social · 16/11/2024
My haiku and tanka library. Even when the brain-fog closes in I can still read and write short form poetry! #pwme #libraries #haiku #tanka #poetry #mecfs
Haiku and tanka library
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Alison Williams @tadpole99.bsky.social · 15/11/2024
How to get over your ex and move on.
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