Clare Fowler
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claref.bsky.social
Clare Fowler
@claref.bsky.social
40 followers 140 following 22 posts
Crocheter, music lover. Muddling through with ME/CFS. A work in progress
She/her. 🏴󠁧󠁢󠁳󠁣󠁴󠁿💚
Posts Replies Media Videos
Reposted by Clare Fowler
gwenynen.bsky.social
Watch till the very very end 🤣🤣🤣🤣 dying....
norway.bsky.social Lars🌻🇳🇴 #NAFOCatsDivision @norway.bsky.social · Jan 26
The clip from night time is sending me 😂
January 27, 2025 at 9:37 PM
Reposted by Clare Fowler
tomduffinphotos.bsky.social
One of the "losers" from the calendar voting - this is a blue sky February day in Leith - the swans timing was perfect

#Leith #Edinburgh #Scotland
December 3, 2024 at 8:41 PM
claref.bsky.social
Post a picture you took (no description, but do use alt tags) to bring some zen to the timeline.
Winding road down towards Loch Maree
November 18, 2024 at 9:59 AM
Reposted by Clare Fowler
fortydeucetwits.bsky.social
First pass at a Tennis Starter Pack.

To be clear, I'm vouching for no one. Caveat emptor.

But it's a place to start!

If someone should be/wants to be added (or removed) just holler.

go.bsky.app/EYk5Feg
November 8, 2024 at 2:02 PM
claref.bsky.social
I’m going to try to be more active on here. I set up an account ages ago but have finally deleted my account on ‘the other place’. It’s been nice to see how many people I follow are already here. Now I just need all my sources of tennis news to make the move too
November 8, 2024 at 9:56 AM
Reposted by Clare Fowler
tomkindlon.bsky.social
This trial has funding to analyse 25000 samples but is well short.

To register/find more info, go to: decodeme.org.uk/portal

Please tell others.

This article explains why the study is important: www.healthrising.org/blog/2023/10...

#MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
DecodeME Complete the DecodeME Questionnaire by 15th of November 5pm to Become a Participant Just two weeks to go Please highlight this opportunity widely, on and off-line. UK participants only but important to all of us around the world
November 1, 2023 at 1:44 AM
Reposted by Clare Fowler
crista.bsky.social
I'll try being kind for a moment and say to my dudes who are feeling some way about the "men are bad" convos - look, I'm a cis white lady. We're also often absolutely The Worst & The Problem. When you feel that chafe, examine why and work on it quietly. It'll make you less shitty.
ruemcclammyhand.bsky.social regular meghan 나영지 🇵🇸 @ruemcclammyhand.bsky.social · Oct 26
hearing women talk about how men are bad will only bother you if you’re the kind of man who’s part of the problem and deep inside their hearts all men know that’s true
October 26, 2023 at 5:50 PM
Reposted by Clare Fowler
neilhimself.neilgaiman.com
Fascinating article about art, fame, parasocial relationships and what reviews are for: news.artnet.com/opinion/devo...
The World’s Most Popular Painter Sent His Followers After Me Because He Didn’t Like a Review of ...
Ben Davis on the fallout from his critical review of Devon Rodriguez's "Underground," and what it says about "parasocial aesthetics."
news.artnet.com
October 22, 2023 at 3:50 AM
Reposted by Clare Fowler
whysharksmatter.bsky.social
Here's another Bad Social Media Behavior that we can leave behind on the Other Site:

When someone asks someone else a question, and you don't know either of them and don't know the answer to the question, you can feel free to not interject with a random guess. It is not helpful, essentially ever.
October 17, 2023 at 5:34 PM
Reposted by Clare Fowler
partialobserver.bsky.social
Housing people is cheaper than treating the effects of people being unhoused

Free school lunches are cheaper than the consequences of children being hungry

Free medical care is cheaper than the costs of people being sick

Universal Basic Income increases productivity and makes people happy
astrokatie.com Katie Mack @astrokatie.com · Oct 17
So weird how as soon as the pandemic started it became very immediately clear that things like socialized medicine and giving people money so children don’t starve actually work really well but now that it’s been a couple years we have to all pretend we didn’t notice that
October 17, 2023 at 4:32 PM
claref.bsky.social
Search your camera roll for “hell”
October 16, 2023 at 5:14 PM
claref.bsky.social
I started reading ‘Why Women Grow’ by Alice Vincent today and I can’t stop thinking about this short passage. Even in my relationship with my incredibly supportive and feminist husband, this rings true.
Picture of text from the book ‘Why women grow’ - quote “I thought about the invisible work that happens in heteronormative couples- the buying of birthday cards, the checking of calendars… These small weights had been falling into my lap”
October 16, 2023 at 4:34 PM
claref.bsky.social
This
bextraordinary.bsky.social Bex, if you can keep it @bextraordinary.bsky.social · Oct 8
I think one of the worst quirks of online spaces is the idea that if someone doesn't post about something, they don't care about it. It encourages performative posting often makes things worse.

I care a lot. I just don't want to add another poorly-informed voice. I'm reading & thinking.
October 8, 2023 at 3:25 PM
claref.bsky.social
I had to read this article multiple times before I believed that they managed to get through it without mentioning #MECFS once. I wish I was surprised www.bbc.co.uk/news/health-...
October 6, 2023 at 11:08 AM
Reposted by Clare Fowler
tomkindlon.bsky.social
"Last Chance to Make History – the Huge #DecodeME Study is Closing Soon – and it Needs Your Help"
www.healthrising.org/blog/2023/10...

Please help to get the word out either by liking and/or re-posting this, or by highlighting the study in some other way

#MEcfs #CFS #PwME #LongCovid #PwLC
Last Chance to Make History – the Huge Decode ME Study is Closing Soon – and it Needs Your Help Decode-ME The big "genome-wide association studies" or GWAS studies are unique at being able to pluck out the genetic factors that leave one susceptible to disease - and can directly lead to new treatment possibilities. They play a crucial role in understanding disease study and thanks to the pluck and vision of our researchers - we finally have one - the UK's DeCode ME study. The DeCode ME study has funding for a cool 25,000 participants and is closing its doors to new participants in just over a month. Right now, though, it appears to be about 25% shy of its goal. In GWAS studies the participants are the juice that makes the study successful. More people are better, in fact, they are much, much, much better. The more participants the study has, the better chance it has at getting at the core elements of ME/CFS. If you're over 16, live in the UK, and have ME/CFS, GWAS wants you - and be
October 6, 2023 at 12:23 AM
claref.bsky.social
Finally got around to listening to this. As a short, plus size person I can relate to so much here. I found the comment about plus size clothing often being made to be temporary because people expect you to lose weight hit home so hard. Anyway, go listen - its awesome
October 5, 2023 at 4:43 PM
Reposted by Clare Fowler
snapcracklepoppies.bsky.social
This is what separates “chronic fatigue” from ME/CFS — and it’s so frustrating because even medical providers often don’t know this.

I kinda wanna print these off and take them to appointments with me 🤐
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Oct 4
The original diagrams:
Post-exertional malaise: an increase in the severity of symptoms and/or the appearance of new symptoms after physical or cognitive exertion, which may be delayed. Post-exertional malaise is incongruent with experiences of fatigue after overexertion in healthy individuals. PEM symptoms are grouped by the body system in which they present with some common-language descriptions. Below, a blue wheel with "PEM symptom presentation" in the center has little icons on each spoke to represent different symptoms: sensory, autonomic, cognitive, pain, immune, neuromuscular, energy level, metabolism. At the bottom it says, PEM is not: being more tired than usual after activity; deconditioning; second-day muscle soreness; necessarily relieved by sleep. Symptom presentation in ME/CFS. While the National Academy of Medicine criteria require post-exertional malaise, fatigue that is not relieved by rest and not in response to increased or unusual activity, unrefreshing sleep, and cognitive and/or orthostatic intolerance with significant functional impairment lasting six months or longer, ME/CFS typically presents with symptoms in all systems. These symptoms include but are not limited to those below. Below is an image of the human body with symptoms and arrows. Fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temperature dysregulation, urinary frequency, myalgia/arthralgia, sensory sensitivities/sensory reactivity, swollen lymph glands, flu-like symptoms, shortness of breath, palpitations or chest pain, appetite changes or nausea, diarrhea/constipation, and post-exertional malaise.
October 4, 2023 at 4:35 PM
claref.bsky.social
I bought lots of new yarn this week and now I can’t concentrate on just one project. I want to be making stuff with all of them at the same time 🤪
October 4, 2023 at 4:02 PM
claref.bsky.social
This is probably the best explanation of the kind of symptoms I experience on any given day. It’s great to see it stated so clearly 🙏
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Oct 4
The original diagrams:
Post-exertional malaise: an increase in the severity of symptoms and/or the appearance of new symptoms after physical or cognitive exertion, which may be delayed. Post-exertional malaise is incongruent with experiences of fatigue after overexertion in healthy individuals. PEM symptoms are grouped by the body system in which they present with some common-language descriptions. Below, a blue wheel with "PEM symptom presentation" in the center has little icons on each spoke to represent different symptoms: sensory, autonomic, cognitive, pain, immune, neuromuscular, energy level, metabolism. At the bottom it says, PEM is not: being more tired than usual after activity; deconditioning; second-day muscle soreness; necessarily relieved by sleep. Symptom presentation in ME/CFS. While the National Academy of Medicine criteria require post-exertional malaise, fatigue that is not relieved by rest and not in response to increased or unusual activity, unrefreshing sleep, and cognitive and/or orthostatic intolerance with significant functional impairment lasting six months or longer, ME/CFS typically presents with symptoms in all systems. These symptoms include but are not limited to those below. Below is an image of the human body with symptoms and arrows. Fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temperature dysregulation, urinary frequency, myalgia/arthralgia, sensory sensitivities/sensory reactivity, swollen lymph glands, flu-like symptoms, shortness of breath, palpitations or chest pain, appetite changes or nausea, diarrhea/constipation, and post-exertional malaise.
October 4, 2023 at 3:55 PM
Reposted by Clare Fowler
hexcraft.bsky.social
btw you arent going crazy google search quite literally wont give you the results you search for
from wired: Google likely alters queries billions of times a day in trillions of different variations. Here's how it works. Say you search for "children's clothing." Google converts it, without your knowledge, to a search for "NIKOLAI-brand kidswear," making a behind-the-scenes substitution of your actual query with a different query that just happens to generate more money for the company, and will generate results you weren't searching for at all. It's not possible for you to opt out of the substitution. If you don't get the results you want, and you try to refine your query, you are wasting your time. This is a twisted shopping mall you can't escape.
October 3, 2023 at 10:39 PM
claref.bsky.social
If you or anyone you know are in the UK and have ME/CFS, please have a look here www.decodeme.org.uk
September 22, 2023 at 3:20 PM