Alison Williams
@tadpole99.bsky.social
Tanka editor for Presence
https://haikupresence.org/home
Writer of haiku, tanka and more
http://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
https://haikupresence.org/home
Writer of haiku, tanka and more
http://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
Reposted by Alison Williams
#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!
December 7, 2024 at 3:00 PM
#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!
December 6, 2024 at 10:02 AM
Reposted by Alison Williams
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...
www.change.org/p/me-associa...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 4, 2024 at 7:15 PM
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...
www.change.org/p/me-associa...
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.
November 30, 2024 at 1:02 PM
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.
Reposted by Alison Williams
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
Everyone with ME and #LongCovid ME is at risk of disease progression without a clear understanding of #PEM
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity.
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
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...
thesicktimes.org
November 27, 2024 at 10:47 AM
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
Everyone with ME and #LongCovid ME is at risk of disease progression without a clear understanding of #PEM
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
#pwme #me #tarot
November 24, 2024 at 5:36 PM
Reposted by Alison Williams
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? ❤️
November 23, 2024 at 9:27 PM
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? ❤️
Reposted by Alison Williams
"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...
& #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...
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...
thesicktimes.org
November 23, 2024 at 9:31 AM
"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...
& #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...
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
#pwme #longcovid
November 22, 2024 at 6:35 PM
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
#pwme #longcovid
Russian dolls
in our youth
we learned how
to build a shelter
and retreat to it
Presence Issue 77 November 2023
November 21, 2024 at 11:26 PM
Russian dolls
in our youth
we learned how
to build a shelter
and retreat to it
Presence Issue 77 November 2023
Its surprising what gems from the past a little digging will unearth.
www.s4me.info/threads/me-a...
#pwme
www.s4me.info/threads/me-a...
#pwme
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...
www.s4me.info
November 21, 2024 at 5:12 PM
Its surprising what gems from the past a little digging will unearth.
www.s4me.info/threads/me-a...
#pwme
www.s4me.info/threads/me-a...
#pwme
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
#pwme
November 21, 2024 at 1:30 PM
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
#pwme
Reposted by Alison Williams
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
The MEA have until now restricted comments on all X & F/b posts
#pwME need safe online spaces where we can discuss this
November 21, 2024 at 10:41 AM
November 20, 2024 at 11:20 PM
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
#pwme #me #me/cfs #advocacy
November 20, 2024 at 4:12 PM
November 20, 2024 at 3:22 PM
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
#pwme #me #me/cfs #ukraine #chronic
November 20, 2024 at 12:50 PM
Reposted by Alison Williams
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?
#longcovid #mecfs
Do you have a meme/gif that actually relates the experience of ME/LC?
November 20, 2024 at 11:55 AM
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?
#longcovid #mecfs
Do you have a meme/gif that actually relates the experience of ME/LC?
Anyone else using www.makevisible.com
and how useful are you finding it? Its working well for me.
#me #me/cfs #technology #heart-rate
and how useful are you finding it? Its working well for me.
#me #me/cfs #technology #heart-rate
www.makevisible
November 20, 2024 at 11:33 AM
Anyone else using www.makevisible.com
and how useful are you finding it? Its working well for me.
#me #me/cfs #technology #heart-rate
and how useful are you finding it? Its working well for me.
#me #me/cfs #technology #heart-rate
Reposted by Alison Williams
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
November 19, 2024 at 4:26 PM
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME