PurpleSpeedwell
@purplespeedwell.bsky.social
Mostly bedridden with #MyalgicEncephalomyelitis, a devastating illness with little funding and no treatment. Toronto, Canada Ally of #pwLC #pwME #LongCovid #POTS #MCAS #MEcfs
(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.
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…
medium.com
(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.
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.
wired.com
. @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
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.
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...
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
theguardian.com
(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.
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.
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.
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...
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.
charlieangus.substack.com
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...
BATTLE FOR LAKE ONTARIO !!
YouTube video by Charlie Angus
youtube.com
#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 – 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.
evernate.com
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
Special Edition: "Coffee" with a Clinician in recognition of Severe ME/CFS Awareness Month
YouTube video by Bateman Horne Center
youtube.com
“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”
Whitney Dafoe@whitneydafoe.bsky.social · last yr.I'm sick of ME/CFS being compared to a never-ending flu. This ain’t no f*ing flu. I feel like every system in my body is broken and in pieces…But even if you have a very severe flu and are bed bound, the never-ending part is a huge deal… www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid
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...
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...
nwmd.social
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...
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...
nwmd.social
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
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...
The royal free epidemic of 1955 - ORA - Oxford University Research Archive
ora.ouls.ox.ac.uk
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.
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.
reuters.com
Impressive report by @crunchme.bsky.social This will be useful for advocacy to increase research funding. 👇 crunchme.notion.site/homepage
CrunchME
The evidence and insight base to crunch infection-associated chronic illnesses.
crunchme.notion.site
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.
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.
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
media.tenor.com
I am Canadian. 🇨🇦❤️ I absolutely reject Poilievre. #NeverPoilievre
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.
Royal Free 1955@rfh1955.bsky.social · 2y agoThe Sunday Times, UK. 4th January 1970. The only news article we could find on Beard/McEvedy's 'Reconsideration'. #myalgicencephalomyelitis #myalgice #cfsme #myalgice
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.
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.
The Sunday Times, UK. 4th January 1970. The only news article we could find on Beard/McEvedy's 'Reconsideration'. #myalgicencephalomyelitis #myalgice #cfsme #myalgice
