Millions Missing Can’s Tweets

Apr 20

Millions are Still Missing… as millions more could be added to our midst. Explore the Canadian Campaign Guide for lots of ideas, resources & tools to help guide your personal plans for #MEAwareness this year! bit.ly/2QI5Ev5 #HealthEquity #MyalgicEncephalomyelitis

Oct 27

Have your say! Committee on Bill #C22 now accepting written submissions from the general public. #CDBBy23 #LetsGetItDone ourcommons.ca/Committees/en/

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Canadian Labour

@CanadianLabour

Oct 27

#C22 is finally being studied at committee. Canada’s unions ask all parties to continue to move this bill through Parliament as quickly as possible, and ensure the disability benefit gets into the hands of those who need it. #canlab #CdnPoli #HUMA @DWP_BC

On the left, a photo of two women sitting at a table cluttered with glasses and bowls, both are looking at a laptop screen. On the right the graphic reads: A life with disability should not mean a life in poverty. And below it reads: It's time to #EndDisabilityPoverty

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Oct 25

Actions you can take: 1) Stay tuned on how you can have your say on the committee process 2) Call/write/email your MP to tell them to fund the CDB! Make it a top priority to craft something that will provide adequate support. #EndDisabilityPoverty #CDBBy23 #LetsGetItDone

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Mike Morrice

@morricemike

Oct 25

A recap of where we stand with the #CanadaDisabilityBenefit and what happens next. Short version: thanks to groups like @Disability_WP and advocates across the country, we've made progress - but until the benefit is funded and delivered, we need to keep pressing for #CDBby23!

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World ME Alliance calls on WHO Director General to recognise ME alongside long Covid - World ME...

Oct 19

The World ME Alliance has today written to

@DrTedros

at the

@WHO

congratulating his recent stance on #LongCovid, but calling on him to recognise the links with #MyalgicE, the ongoing devastation this disease causes and meet with us to #LearnFromME.

worldmealliance.org

On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long Covid is causing...

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Mike Morrice

@morricemike

Oct 18

C-22 passes unanimously, now the #CanadaDisabilityBenefit goes to committee for witness testimony and amendments! Kudos to all the tireless disability advocates across the country. While the work continues, this milestone is yours. #CDBby23

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In the Chamber

@HoCChamber

Oct 18

Vote result: Bill #C22 was adopted at 2nd reading and referred to the #HUMA committee. #cdnpoli Yeas: 328

Nays: 0

Canada Disability Benefit Act - Minister of Employment, Workforce Development and Disability Inclusion

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CTV News

@CTVNews

Oct 13

Do you have long COVID? We want to hear from you bit.ly/3yDtxqu

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Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Ed Yong is on sabbatical

@edyong209

Sep 26

🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it. This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/

theatlantic.com

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

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Standing in Solidarity from Canada with

for people disabled by #MyalgicEncephalomyelitis & #LongCovid.

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Protesters are demanding that Biden declare Long COVID & ME/CFS a national emergency. The pandemic is far from over. meaction.net/2022/09/19/ele

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#MEAction in Washington DC to Stop #LongCovid

#MEAction in Washington DC to Stop #LongCovid

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ahimsa

@ahimsa_pdx

Posting in solidarity with protestors in Washington DC today! Another #PwME who is #StillSickStillFighting✊ #LongCovid #MEcfs #MillionsMissing ⁦

Me wearing sunglasses, a hat, and a red millions missing t-shirt. I'm holding up a sign that says, "Solidarity with #MEAction protestors in Washington, DC!" It also has 3 hashtatgs - #StillSickStillFighting, #LongCovid and #MEcfs

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Packing up our signs & ready to protest at 12 pm ET at the White House! Watch live here on Twitter!

@potus

, intervene for the millions affected by these disabling diseases. #MillionsMissing #CovidIsNotOver #LongCovid #MECFS Email Biden here. act.meaction.net/page/44417/act

Sign saying: Biden administration wake up! We/me are suffering in the dark

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TODAY IS THE DAY WE PROTEST! We are gathering at the White House & online from our beds to demand bold, urgent governmental action for the millions of people living with #MECFS #MyalgicEncephalomyelitis, #LongCOVID, & other infection-associated, complex- chronic diseases.

Graphic in red, black & white. 2022 #MillionsMissing Today we protest to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated, complex- chronic diseases. Sept. 19th

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760

One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood

Ed Yong is on sabbatical

@edyong209

Sep 12

Brain fog isn’t unique to long COVID. The same specific problems affect many HIV patients, epileptics post-seizures, cancer patients w/ chemo brain & folks w/ chronic illnesses like ME/CFS. Many of these conditions have long been stigmatized & neglected 7/

theatlantic.com

Brain fog isn’t like a hangover or depression. It’s a disorder of executive function that makes basic cognitive tasks absurdly hard.

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Just a Reminder... One week from today, join in person or from your home demanding gov't action for the #MillionsMissing living with #MyalgicEncephalomyelitis, #LongCovid & other #infection associated #ChronicIllness.

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Sep 8

#MillionsMissing 2022 is Sept 19th at the White House* or from your home! We demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, & other infection-associated, complex- chronic diseases. millionsmissing.meaction.net/protest2022/

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Open Medicine Foundation

@OpenMedF

Sep 6

The 2022 ME/CFS Zoom Working Group Meeting Agenda & Guest list is now available! This event is for biomedical researchers to share ideas & knowledge about the molecular basis of #MECFS. Because the group will discuss unpublished research, the meeting is closed to general public.

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Another dear soul who caught #COVID now diagnosed with #MyalgicEncephalomyelitis. #Disabled, unable to work, unable to survive on #ODSP, & too sick to live on the streets, she's applied for #MAiD. Tragic... #CDB isn't coming fast enough.

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Despite Canada’s reputation for universal health care, many citizens with manageable health conditions have turned to crowdfunding to afford treatment, medical support, and the cost of living. When that fails, they turn to medical assistance in dying. trib.al/fJHfWKb

Thx to

for an excellent article. #MyalgicEncephalomyelitis & #LongCovid are "frighteningly similar, if not identical". Dr. David Systrom More quotes by Drs. Klimas, Komaroff, Nath & advocates Jamie Seltzer @exceedinghergrasp1 & Emily Taylor

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The emergence of long COVID was no surprise to researchers who study the post-viral condition myalgic encephalomyelitis/chronic fatigue syndrome, because the same set of symptoms has arisen after many other viruses. wb.md/3pGX8ud

Aug 17

Many thanks for the welcome. We're looking forward to working with you fine people to move the needle forward for the global ME community.

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Aug 17

We are proud to announce Millions Missing Canada are joining our Alliance. With their three key goals "stop the harm, fund the research, start the treatment" they are going to fit in well. Collaboration remains the key to global movement. #pwme #MyalgicE worldmealliance.org/2022/08/millio

Aug 13

An exciting upcoming event for those who can make it. A huge turnout could mean everything! #MyalgicEncephalomyelitis #LongCovid #MillionsMissing

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Aug 13

Join us in Washington D.C . on September 20th at 12 pm ET for an in-person* #MillionsMissing protest outside the White House. RSVP: meaction.net/event/millions Virtual actions sign up here: bit.ly/VirtualMM2022 *We will have community rules & mask requirements to minimize risk.

Photo of a #MillionsMissing protest with protesters in red shirts and holding signs and a bullhorn. Underneath is a graphic of the White House and wording: When: September 20th and Where: The White House

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Thanks to

for this great PSA designed to broaden awareness of #LongCovid, #MyalgicEncephalomyelitis & other post-infection diseases while highlighting the need for research to better understand it in order to adequately help patients. #HowLong?

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Solve ME/CFS Initiative

@PlzSolveCFS

Aug 10

We're excited to announce that Solve M.E. and our Solve Long Covid Initiative created a new PSA campaign in collaboration with the @EIFoundation entitled “How Long?”. Please help this #LongCovid PSA go viral!

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Ryan Prior, THE LONG HAUL hits shelves Nov. 15

@r_prior

Aug 9

Four years ago for #SevereME Awareness Day, I shared my story of #mecfs for CNN. Every morning I look in the mirror, grateful that I can work, write, and walk out my door. Others with ME and #longcovid are not so lucky. Today we honor their voice.

amp.cnn.com

Millions suffer from an invisible disease: My ME/CFS story

Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic...

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Cheryl Benson #SavingCheryl

Replying to

and

I am crying, we’ve have lost so many thousands, this is just a handful. Decades of extreme suffering mostly alone for all of us. I like to focus on what I can do it kept me alive, today I grieve with Hope because #LongCovid is a blessing-billions are interested in finding a cure

B. Fifield

@b5field

#SevereMEDay Tributes… honouring a few of the good people who once traveled alongside us. Sadly their journeys have ended prematurely due to #MyalgicEncephalomyelitis. #SevereME bit.ly/3A5WzNL

Art on a Mission

@ArtMission

#SevereMEDay Tributes… honouring a few of the good people who once traveled alongside us. Sadly their journeys have ended prematurely due to #MyalgicEncephalomyelitis. Remembering Fondly Today: bit.ly/3A5WzNL #SevereME

Art on a Mission

@ArtMission

Justin Trudeau and 9 others

#SevereMEDay We once lived our lives in colour. With an adequate investment in research, treatment and medical care, we hopefully can again. #SevereME #MyalgicEncephalomyelitis

Today, August 8th, is #SevereMEDay. It's a day of awareness for those often hidden from society. Housebound or bedbound and unable to work, people with #SevereME are too often forgotten. Today we build visibility, and commit again to fighting for your lives. #MyalgicE

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Justin Trudeau and 9 others

#SevereMEDay We once lived our lives in colour. With an adequate investment in #research, #treatment and #medicalcare, we hopefully can again. #SevereME #MyalgicEncephalomyelitis

Aug 3

“We’re taking this unusual position because of the unusual circumstances. What we recommend here is really based on our philosophy that what our community deserves is well-researched, evidence based treatments.” #pwME #MyalgicEncephalomyelitis worldmealliance.org/2022/08/we-do-

TRIBUTE : Retha Viviers – an angel and a warrior for ME sufferers left to suffer in silence

Big News! BHC and

launch the Medical Education Resource Center (MERC) to increase the number of #healthcareprofessionals equipped to care for pw multi-system chronic complex disease (msCCD) like #MECFS, #FM, & #LongCOVID. bit.ly/3PPS5D9 #MedEdMatters #MERCatBHC

A wonderful tribute to Retha Viviers — a friend to countless in our community, a staunch warrior for our illness #MyalgicEncephalomyelitis & considered an angel by many.

dailymaverick.co.za

A tribute to the South African woman who was a global leader in the protracted battle to get myalgic encephalomyelitis officially recognised as a disease affecting millions of people.

Chronic fatigue syndrome may be caused by mini blood clots | New Scientist

Tom Kindlon

@TomKindlon

Jul 29

New Scientist: “#Chronicfatiguesyndrome may be caused by mini blood clots” (pay-walled) newscientist.com/article/233139 Someone has written a summary here: s4me.info/threads/new-sc #TeamClots #MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #CFIDS #MEep #MEeps #PwMEs #MyalgicE

newscientist.com

Microclots that block blood and oxygen flow are a possible explanation for long covid symptoms like exhaustion and brain fog. Now it seems they may be to blame for chronic fatigue syndrome too

Expert quits panel on medically assisted deaths, says proposals don’t adequately protect Canadians...

Inclusion Canada

@InclusionCA

Jul 20

“More people will end up being approved for MAID and having MAID performed than is warranted, is the simplest way of saying it,” An expert panel member resigns from the panel because proposals do not protect Canadians with mental illnesses.

thestar.com

Canadians with mental illnesses who don’t qualify for medically assisted deaths could be approved for them anyway if an expert panel’s “soft” recommendations are accepted, a former panel member...

theglobeandmail.com/investing/pers

André Picard

@picardonhealth

Jul 20

‘Really angry’: Why Canadians with #LongCOVID are struggling to access financial aid. The hurdles to qualify for insurance and government disability support are familiar to patients with chronic fatigue syndrome, by

@ealini

@globeandmail

#COVID19 #CFSME

theglobeandmail.com

Why Canadians with long COVID struggle to access financial aid

As more Canadians with long COVID try to apply for insurance and government disability support, many are encountering the same hurdles that have long been familiar to residents with chronic fatigue...

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Highlights of

speaking at todays

hearing. "Over half of #LongCovid patients will develop #MECFS, dysautonomia or both. ME/CFS is one of the worlds most disabling Illnesses..." Link to the start of the 5 min speech. youtu.be/DL9AmIqL488?t=

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Madeline Can’t Afford To Live With Her Illness

André Picard

@picardonhealth

Jul 13

Madeline Can’t Afford To Live With Her Illness. She May Choose To Die Instead. The 54-year-old Vancouver woman with myalgic encephalomyelitis says she can't afford to live anymore, by

@cfrangou

chatelaine.com/health/maid-as via

Why a medically assisted death may be her only option.

Jul 10

So saddened by the news of Retha's passing, who spread hope and light to so many with #MyalgicEncephalomyelitis. You will be dearly missed Retha. ♥ To send messages of remembrance & condolence to her family, visit Retha's KudoBoard: kudoboard.com/boards/5rKYAiA9

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Tom Kindlon

@TomKindlon

Jul 10

Thérèse Bester, a close friend of Retha Viviers, sent me this tribute and asked if I would consider posting it on my Facebook page which I was happy to do. May Retha rest in peace. facebook.com/TomKindlonMECF Retha ran @mecfs_sa #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME

Jun 17

End the legislated poverty of people with disabilities now! Let's push for a 2nd reading of Bill C-22 before June 24! #LetsGetThisDone

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Daniel Blaikie

@Daniel_Blaikie

Jun 17

People living with disabilities have been legislated into poverty for far too long. Canadians are relying on the government to provide them with a clear roadmap for the new Canada Disability Benefit.

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NEW Update from Ron Davis: The Itaconate Pathway!

Open Medicine Foundation

@OpenMedF

Jun 15

NEW update from Ron Davis and

@JanetDafoe

: bit.ly/3b26Seh In an interview led by caregiver & advocate Janet Dafoe, Ron shares details about a new project underway at the ME/CFS Collaborative Research Center at Stanford: The Itaconate Pathway study! #mecfs #pwme #myalgice

youtube.com

Today, we are delighted to share the first in a series of research updates from Ronald W. Davis, PhD, Chair of OMF Scientific Advisory Board & Director of th...

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Prof Doug Kell CBE #FBPE #FBPA #ABTV

Preprint with

and

showing massive #microclots and platelet hyperactivation in #MECFS, much as with #LongCovid #TeamClots #pwME #pwLC

researchsquare.com

The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyeliti...

We have previously demonstrated that platelet poor plasma (PPP) obtained from patients with LongCovid/Post-Acute Sequelae of COVID-19 (PASC) is characterized by a hypercoagulable state reflected in...

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