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PurpleSpeedwell

@purplespeedwell.bsky.social
685 followers 852 following 43 posts

Mostly bedridden with #MyalgicEncephalomyelitis, a devastating illness with little funding and no treatment. Toronto, Canada Ally of #pwLC #pwME #LongCovid #POTS #MCAS #MEcfs

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Reposted by PurpleSpeedwell
Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(11/12) If government authorities and the medical profession took #MECFS seriously from the start and allocated resources in proportion to the prevalence and impact, there is a good chance that there would be effective treatments already or at least a major head start on the pathophysiology.
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.
wired.com
The Painful Truth About Long Covid
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
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Rose Mary @rose-mary-x.bsky.social · 26/09/2026
. @georgemonbiot.bsky.social & @natashadevon.bsky.social discussing #MECFS on LBC earlier. This clip is from his closing comments, which I thought were very powerful. Actually, I burst into tears 😭 Thank you both 💙 #MyalgicEncephalomyelitis #GreatestMEdicalScandal #LongCovid
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Alem Matthees @alemmatthees.bsky.social · 27/09/2026
I realise not everyone can do that or find it useful, and I frequently ran my brain into the ground due to thinking and suffered severe brain fog. I just tried to choose to live as long as possible with passive hope and minimal attachment to expectations. One day things will change.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
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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Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(1/3) I would not repeat years of very severe #MECFS again for billions of dollars. Not just because of the ongoing difficulties, but also the risk of not surviving. Just one single day would wipe the smug and doubt off the faces of those who disbelieve. Just one single day, but there is a catch.
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Alem Matthees @alemmatthees.bsky.social · 17/09/2026
I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.
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PurpleSpeedwell @purplespeedwell.bsky.social · 10/09/2026
Terrifying AI youtube.com/shorts/aLqMW...
youtube.com
Terrifying…
YouTube video by MeidasTouch
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Charlie Angus @charlieangus104.bsky.social · 07/09/2026
Do you remember when we were told that if we gave the tech giants complete freedom from regulation they would create a world of freedom and choice? That wasn't the plan at all. And now we are learning just how dark it gets. charlieangus.substack.com/p/peter-thie...
charlieangus.substack.com
Peter Thiel Meets the Antichrist
Tech experts warn that we are on the verge of creating Superhuman AI — a development that could result in the extinction of our species.
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Charlie Angus @charlieangus104.bsky.social · 07/09/2026
Trump's attempt to coerce us into accepting the renaming of a lake isn't a tantrum. It is an attack on our nation's sovereignty. My latest from beautiful waters of Lake Ontario. youtube.com/shorts/2ou1Q...
youtube.com
BATTLE FOR LAKE ONTARIO !!
YouTube video by Charlie Angus
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PurpleSpeedwell @purplespeedwell.bsky.social · 07/09/2026
#Canada A good source of Canadian manufactured supplements: Evernate supplements are authorized by Health Canada. Non-GMO, free from artificial fillers, dyes, and preservatives, third party tested. Available at evernate.com and well.ca.
evernate.com
Evernate – Canadian-Made Natural Supplements | Third-Party Tested
Premium supplements made in Canada for energy, sleep, gut & metabolic health. GMP-certified, third-party tested, clean ingredients. Free shipping over $50.
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Pierre Polyester @canadian-critic.bsky.social · 06/09/2026
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#MEAction Network @meactnet.bsky.social · 29/08/2026
5. Watch & share the “Coffee with a Clinician” special about severe ME that @meactnet.bsky.social, @batemanhornecenter.bsky.social, @solveme.bsky.social, & @openmedf.bsky.social aired on August 12th. www.youtube.com/watch?v=Hlfb... #MECFS #MyalgicEncephalumyelitis
youtube.com
Special Edition: "Coffee" with a Clinician in recognition of Severe ME/CFS Awareness Month
YouTube video by Bateman Horne Center
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Yann (ME/LC) @me-cfs.bsky.social · 28/05/2025
“Our lives are not on hold waiting for us, they are cancelled, in ruins, burned to ashes, gone and lost forever, and even if we got better in a week which would be a dream come true for all of us, we would still be left having to start our lives all over again from scratch”
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PurpleSpeedwell @purplespeedwell.bsky.social · 22/05/2025
Ontario, Canada Please sign this letter asking the Ontario government not to claw back the Canada Disability Benefit from #ODSP payments. #poverty #disability nwmd.social/s/copylink/4...
nwmd.social
Home - Income Security Advocacy Centre
We advance the systemic interests and rights of low-income and equity-seeking communities and meaningfully support Indigenous Peoples and communities, with a focus on improving income security program...
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PurpleSpeedwell @purplespeedwell.bsky.social · 22/05/2025
Ontario, Canada Please sign this letter asking the Ontario government not to claw back the Canada Disability Benefit from #ODSP payments. #poverty #disability nwmd.social/s/copylink/4...
nwmd.social
Home - Income Security Advocacy Centre
We advance the systemic interests and rights of low-income and equity-seeking communities and meaningfully support Indigenous Peoples and communities, with a focus on improving income security program...
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PEIPolitical 🇨🇦 @peipolitical.bsky.social · 25/03/2025
Naheed Nenshi 🇨🇦 - "Danielle Smith’s comments during her Breitbart interview are antithetical to democracy. I'm old enough to know just how fragile this beautiful nation is, & I’ll be damned if I let a reckless, incompetent and unethical Premier undermine what we’ve built here together." 🇨🇦 #cdnpoli
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Royal Free 1955 @rfh1955.bsky.social · 19/03/2025
A reminder that my colleague @ciaranj_farrell (Twitter) managed to locate and ask (successfully) for permission for this to be made public, after over four decades of being archived. Colin McEvedy's "The Royal Free Epidemic of 1955" #mecfs #cfsme #myalgice ora.ouls.ox.ac.uk/objects/uuid...
ora.ouls.ox.ac.uk
The royal free epidemic of 1955 - ORA - Oxford University Research Archive
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allyann @allyann.bsky.social · 09/03/2025
Lindt to supply chocolate to Canada from Europe to sidestep tariff hit Swiss chocolate maker Lindt & Spruengli (LISN.S), will supply chocolate to Canada made in Europe to avoid Canadian tariffs imposed to counter the higher U.S. customs duties imposed by President Donald Trump.
reuters.com
Lindt to supply chocolate to Canada from Europe to sidestep tariff hit
Swiss chocolate maker Lindt & Spruengli will supply chocolate to Canada made in Europe to avoid Canadian tariffs imposed to counter the higher U.S. customs duties imposed by President Donald Trump.
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Theo Moudakis @theomoudakis.bsky.social · 05/02/2025
Please enjoy my cartoon for Thursday's Toronto Star
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ME/CFS Science @mecfsscience.org · 28/01/2025
Impressive report by @crunchme.bsky.social This will be useful for advocacy to increase research funding. 👇 crunchme.notion.site/homepage
crunchme.notion.site
CrunchME
The evidence and insight base to crunch infection-associated chronic illnesses.
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Miriam IRL @miriam.blacksky.app · 21/01/2025
Amid all the chaos yesterday, you may have missed that Trump also rescinded executive orders promoting racial equity, diversity, inclusion, and protections against discrimination for gay and transgender people.
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Sherrilyn Ifill @sifill.bsky.social · 07/01/2025
Sharing here a long thread I just shared on Threads about Zuckerberg. Yes, I encouraged folks to come to Bluesky. Anyway, pull up a chair.
media.tenor.com
a red chair sits in front of a wall that has a sign that says new amsterdam on it
ALT: a red chair sits in front of a wall that has a sign that says new amsterdam on it
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JoanneMW 🇨🇦🍁 @joannew2767.bsky.social · 06/01/2025
I am Canadian. 🇨🇦❤️ I absolutely reject Poilievre. #NeverPoilievre
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Colleen Steckel @colleensteckel.bsky.social · 04/01/2025
The harm caused by these 2 is far beyond what most can imagine.
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PurpleSpeedwell @purplespeedwell.bsky.social · 04/01/2025
The diabolical framing of a severe neuroimmune disease #MyalgicEncephalomyelitis as mass hysteria because it affects more women than men. Without any proof, and ignoring the physical reality. Beard and McEvedy never even met any of the patients.
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heartofdanielle.bsky.social @heartofdanielle.bsky.social · 04/01/2025
If it involves women, it must be anxiety. In this case, mass hysteria. 🙄 That is why there has been no concerted effort to collaborate on the mystery of CFS/ME.
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Dee3D @dee3d.bsky.social · 04/01/2025
The usual unevidenced psychiatrist lingo: 'MOST LIKELY due to', etc. That profession always use terms such as 'probably', 'it is thought' , 'it is assumed'; in this case, 'most likely'. Never any actual indisputable proof, just their own personal beliefs. Hence no progress made in decades.
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Royal Free 1955 @rfh1955.bsky.social · 04/01/2025
The Sunday Times, UK. 4th January 1970. The only news article we could find on Beard/McEvedy's 'Reconsideration'. #myalgicencephalomyelitis #myalgice #cfsme #myalgice
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Cheryl in Nova Scotia 🇨🇦🍁🍁 @minibubbly.bsky.social · 03/01/2025
Poilievre will destroy Canada ⤵️
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Cheryl in Nova Scotia 🇨🇦🍁🍁 @minibubbly.bsky.social · 03/01/2025
This video thread by Paris Marx shows how rotten to the core Poilievre truly is and the destruction he will cause in Canada, he is a bully, a liar, he is pushing a right wing narrative that will definitely hurt millions in Canada. ⤵️⤵️
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Sparrow / Liz @untonuggan.myatproto.social · 02/01/2025
I know that sometimes working on a "micro" level and just helping individual people figure out stuff like what shower chair to get can seem like you're "not doing much" But I figure, eugenicists want disabled people to die Helping us stay alive, and suffer less, *is* important
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Brent Forman 🇨🇦 @joeblow604.bsky.social · 03/01/2025
5 yrs before #MyalgicEncephalomyelitis I started #oilpainting. A friend (who painted) stayed with me when he wasn't working out of town. He left me with his paints and brushes, a homemade easel, a #BobRoss tape and a joint. This is what happened! #myfirstpainting #art #MEcfs #pwME #longcovid #pwLC
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Maike Osborne @maosbot.bsky.social · 01/01/2025
References: 1. QoL: doi.org/10.1371/journal.pone.0132421 2. Recovery: doi.org/10.1093/occmed/kqi013 3. Treatment: me-pedia.org/wiki/PACE_tr... 4. Med schools: doi.org/10.17226/19012 5. NIH funding: doi.org/10.3233/wor-203173
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Maike Osborne @maosbot.bsky.social · 01/01/2025
Myalgic Encephalomyelitis: 1. Sufferers have lower quality-of-life than patients with heart failure, MS & end-stage renal disease. 2. Recovery is rare. 3. Treatment is often more harmful than helpful. 4. <1/3 of med schools include it in curriculum. 5. It's the NIH's least funded disease vs burden.
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Laura Helmuth @laurahelmuth.bsky.social · 29/12/2024
Guinea worm used to afflict 3.5 million people each year. This year, thanks in part to Jimmy Carter, there have been 7 cases. He negotiated the longest humanitarian cease-fire in history to distribute water filters & larvicides www.scientificamerican.com/article/jimm... via @tanyalewis.bsky.social
scientificamerican.com
Jimmy Carter, Who Has Died at Age 100, Spared Millions of People from Guinea Worm, a Debilitating Parasite
Former president Jimmy Carter’s charity has helped transform Guinea worm from a disease that used to infect millions to one that infects fewer than a dozen
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Stephen King @stephenking.bsky.social · 29/12/2024
Jimmy Carter has passed away. My wife says he was the last decent man in politics.
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Rod (Izzy) Ⓜ️Ⓜ️ 🦅🇺🇸 @1zzyzyx1.bsky.social · 29/12/2024
Remembering Jimmy Carter
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PurpleSpeedwell @purplespeedwell.bsky.social · 25/12/2024
A lovely, inspirational Christmas song by a teenaged Stevie Wonder. www.youtube.com/watch?v=zvPb...
youtube.com
Someday At Christmas
YouTube video by Stevie Wonder - Topic
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Ron Stonebear Shields @stonebear4747.bsky.social · 22/12/2024
"Celebration of ignorance."
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The Canary @thecanaryuk.bsky.social · 20/12/2024
A woman from Canada with severe ME has been approved for MAiD - but she wants to live After decades battling ME/CFS, Marcia is going fully public in a desperate bid to secure her survival and fight for change www.thecanary.co/global/world...
thecanary.co
A woman from Canada with severe ME has been approved for MAiD - but she wants to live
After decades battling ME/CFS, Marcia is going fully public in a desperate bid to secure her survival and fight for change
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Mia Farrow @miafarrow.bsky.social · 14/12/2024
I had polio when i was 9. I was taken from my parents & placed in a Hospital for contageous diseases- the polio ward. I would see them once a week - thru the glass window at the end of my ward. I could not walk. It was terrifying. Kids died. Iron lungs were awful. Dont let RFK Jr ban the vaccine
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Avis Favaro @avisfavaro.bsky.social · 12/12/2024
More than 15,000 people received medical assistance in dying in Canada in 2023, about 15% more than previous year. www.ctvnews.ca/health/maid-... @ctvnews-rss.bsky.social
ctvnews.ca
MAID cases rose to 15,000 in 2023, but growth of cases halved
More than 15,000 people received medical assistance in dying in Canada in 2023, but federal statistics show the growth in cases has slowed significantly.
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 05/12/2024
A meme that never gets old. #MEcfs #LongCovid
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Kirsty Hall @kirstyhall.bsky.social · 05/12/2024
I’d also be very interested in seeing if any of these recovered kids relapse at a later date. Obviously I really hope not but anecdotally I’ve known people in the MECFS community who follow the pattern of ‘ill as a kid, got better and then felled by it again later in life.’
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John Peters @johnthejack.bsky.social · 05/12/2024
Claims for which there is no evidence made about a paper which makes claims for which there is no evidence. #MEcfs #LongCovid
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Chronic Historian ♾️♿️🏳️‍🌈🏳️‍⚧️💜🖤💛🦓🏴󠁧󠁢󠁳󠁣󠁴󠁿🍉🐺🐈‍⬛🧑‍🌾🌱🌳 @enbycriphistorian.bsky.social · 03/12/2024
This is the reality of MaiD in Canada. Every request for, accessibility devices is met with “if you’re suffering unbearably we could have you dead in six weeks”. For a fucking wheelchair lift that the person wants so she can *live*.
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