A Life Suspended by ME

Amplifying the voice of Canadians living with ME while advocating for treatment access, appropriate medical care, & equitable research funding spanning decades.

[A Life Suspended by ME @b5field]

Don't be Fooled - ME Can Strike Anyone - Anytime!
Support the ME Community.

#MyalgicEncephalomyelitis #MillionsMissing #NeglectedIllness

[A Life Suspended by ME @b5field]

Millions Missing Canada...

with nearly 200 others, signed the letter from Maytree to Premier @FordNation.

We call on the #OntarioGovernment to create a poverty reduction strategy built on evidence, lived experience, and dignity.

#EndDisabilityPoverty
https://t.co/3DimwqyDmy

[A Life Suspended by ME @b5field]

Easy Action...

Rising food insecurity & cost of living means income supports for Canadians living with disabilities are needed now more than ever. You can help lift Canadians out of poverty by sending a letter to your MP today! https://t.co/ohcGNaB3lv

#EndDisabilityPoverty

[Tom Kindlon @TomKindlon]

2/
From:
"Patient-Reported Treatment Outcomes in ME/CFS & Long COVID"
https://t.co/SuTLt0BSiN

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

[A Life Suspended by ME @b5field]

♥

[Kyle @kylofone]

today marks 1,000 days since my partner became fully bedbound. i planned on writing some reflections on 1k days of caring but honestly i've got nothing in me. eternal love and support to all enduring this, especially those who've been living it for many more years, even decades.

[Jack | amatica health @JackHadfield14]

🔬Simplified breakdown of the Decode ME results:

DecodeME identifies 8 gene regions linking immune response, mitochondrial energy control, and brain-cell signalling to ME/CFS

Genomic evidence the disease is biological.

Let’s breakdown everything in depth 🧵

[Carole Bruce @CaroleBruce17]

Yes pacing helps when opposed to GET but it does not guarantee improvement nor stability, it is a poor substitute for real, effective treatment options. Some people pace to the minute and see no improvement, it’s important to try but also important imo not to be hard on oneself.

[Hillary Johnson Author, Journalist @oslersweb]

What have doctors learned about myalgic encephalomyelitis in the last forty years?
They have learned to keep a straight face when their patients tell them they have it.

[Vipin M. Vashishtha @vipintukur]

A common virus once thought harmless to humans might be linked to Parkinson's disease, a new study says. The germ, Human Pegivirus (HPgV), was found in half the autopsied brains of patients with Parkinson's, but not in any brains from healthy people. 1/

[ODSP ActionCoalition @ODSPAction]

REPORT: Ont’s so-called Poverty Reduction Strategy has failed

#Poverty is rising w/more & more ppl unable to afford necessities for a dignified life, incl. those w/jobs

This is the direct result of myopic govt policies. We need a new path forward
#ONpoli
https://t.co/56o2NQGM0g

[ThePOTSPostman @ThePOTSPostman]

Saying ‘I get tired too’ in response to someone’s chronic fatigue, is like saying ‘I have a cold’ when someone else is battling pneumonia.

It’s not helpful.

[Cornell Center for Enervating NeuroImmune Disease @CornellMECFS]

🔬 NEW from @CornellMECFS: Study reveals protein changes in #MECFS using blood-derived extracellular vesicles. First analysis in male patients shows altered EV cargo dynamics post-exercise.

🔓 Read: https://t.co/XSKewWsowr
📊 Data: https://t.co/hgiV40yyCJ

[Masked Rogue 😷 🇵🇸 @unMaskedRogue]

According to the UN, this benefit is grossly insufficient and disabled Canadians are being coerced into euthanasia by the inadequate support that this government is providing. This is nothing to be proud of and it’s hurtful to see politicians pat themselves on the back for it.

[UBI Works 🇨🇦 @ubi_works]

Guaranteed livable basic income

- encourages work
- is universally accessible to those who need it
- is livable
- costs less than poverty

[Hillary Johnson Author, Journalist @oslersweb]

Unwilling---or unable? NIH's Brian Wallit, Avindra Nath face a delightful smack down of their $8 million, ten-year paper about "effort preference." A consortium of international scientists:
"data provide no evidence" and
"conclusions...unwarranted"

https://t.co/ewq13prKYp

[A Life Suspended by ME @b5field]

@ODSPAction I don't get it.

For those who:
- already have the DTC,
- have filed their recent tax return,
- meet all the necessary requirements,
why on earth do they have to apply for the benefit???

Shouldn't it just be sent to them?
What am I missing?

#CanPoli #CDB #Bureaucracy

[Michael J. Prince @princepolity]

Ableist public policy on crude display.

[Sarah Colero @Sarah_Colero]

"The danger of linking disability with employment is that the only disability issue becomes how to get disabled people employed," she said. "Linking disability with employment is missing the whole point of having a disability minister." @KristaCarrNB
👏 https://t.co/N2a6GPMegD

[Michael J. Prince @princepolity]

Cabinet has Ministers for Families, Indigenous Relations, Veterans, and Women and Gender Equality. Also Secretaries of State for Children and Youth, Labour, Seniors, and Sport. People with disabilities? No seat at the table. Hugely important and disappointing in 2025

[Michael J. Prince @princepolity]

A concise and compelling analysis of why having a seat at the cabinet table matters for advancing disability issues and opportunities. 👇

[Bettina Grande @GrandeBettina]

Prof. Kristian Sommerfelt (Norway) shared devastating data:
50% of severe #MECFS patients worsened over time.
0% of very severe ME patients improved.
This is disease progression.
#PEM must be recognized, understood – and avoided.
#MEAwarenessDay
#MECFS2025
#PEMisnotNegotiable