ME/FM Society of BC
@mefmsocietyofbc.bsky.social
📤 163
📥 230
📝 15
pinned post!
The
@bcndp.bsky.social
budget has once again failed our community.
@josieosborne.bsky.social
we urge you to act immediately and prioritize the care this community deserves. Please see our response here -https://www.mefm.bc.ca/post/response-to-the-2025-bc-budget-me-fm-society-of-british-columbia
7 months ago
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Building a strong support network is essential for every caregiver! 🤝 Discover strategies to connect with others and find the support you need. You're not alone in this journey! Download your Caregivers Toolkit -
www.mefm.bc.ca/caregiver-re...
#Caregivers
#SupportNetwork
#MEFM
#LongCOVID
5 months ago
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🌟 Excited to launch our Caregivers Toolkit! A must-have for those supporting loved ones with ME, FM, & Long-COVID. Packed w tips & support resources. Download & share now!
#MECommunityStrength
#MEBCCommunitystrength
#MEFMBC
#Longcovid
#FM
#BChealthcare
mefm.bc.ca/caregiver-re...
5 months ago
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Caregiving for someone with
#MEcfs
,
#LongCovid
or Fibromyalgia? A new resource is launching THIS FRIDAY to support YOU. 💪 Stay tuned!
#caregiver
#resources
#comingsoon
6 months ago
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🌟
#IWD2025
: 80% of ME cases are women. Menopause + ME? Hormonal shifts can worsen fatigue, pain, & brain fog. MYTH: “It’s just aging.” FACT: ME is a distinct illness. Rest isn’t failure—it’s survival. 💪💜 👉 Tips + support:
shorturl.at/qDWU0
#MEAwareness
#MenopauseAndME
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Celebrating Strength on International Women’s Day: Navigating ME and Menopause with Compassion
Today, as we honor the resilience and achievements of women worldwide, we want to shine a light on a community that embodies unwavering strength: women living with ME/CFS. Did you know that women make...
https://shorturl.at/qDWU0
7 months ago
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The
@bcndp.bsky.social
budget has once again failed our community.
@josieosborne.bsky.social
we urge you to act immediately and prioritize the care this community deserves. Please see our response here -https://www.mefm.bc.ca/post/response-to-the-2025-bc-budget-me-fm-society-of-british-columbia
7 months ago
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More Myth Busting! 'GET' isn’t a cure for ME/CFS or Long-COVID and can be harmful. Protect your health with accurate info!
#MECFS
#ChronicIllnessAwareness
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8 months ago
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Myth Busting!! Symptoms of ME/CFS & Long-COVID can fluctuate. Yesterday’s abilities don’t mean today’s. Let’s understand and support!
#ChronicIllnessSupport
#LongCovid
#MECFS
8 months ago
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Myth Busting! ME/CFS & Long-COVID are real, with biological changes like immune dysfunction. They're not psychosomatic myths. Let's spread awareness!
#MECFS
#LongCOVID
8 months ago
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Feeling festive without fatigue? Discover pacing strategies to manage your energy this holiday season. Learn more in our free email series! -
www.mefm.bc.ca/need-support...
🎉
#ME
#FM
#LongCOVID
#PacingTips
9 months ago
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🌟 Your voice matters! Help shape better healthcare in BC. If you're in Canada with ME/CFS, Fibromyalgia, Lyme Disease, or Long-COVID, we want to hear from you. Share your experiences to drive real change. Take the survey now:
info595.questionpro.com/Health2024
#HealthcareBC
#PatientVoices
10 months ago
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Our FREE Holiday Pacing Module is OUT!! What's your biggest holiday energy-zapper? Share with us! 🌟
www.mefm.bc.ca/holiday-module
#HolidayPacing
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Holiday Module| MEFM SOCIETY OF BC
https://www.mefm.bc.ca/holiday-module
10 months ago
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We need your voice! Help inform better healthcare in BC. GO TO SURVEY NOW (
info595.questionpro.com/Health2024
) Click on image below to read entire article or view it on our website (
www.mefm.bc.ca/.../we-need-...
).
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We need your voice! Help inform better healthcare for people living with ME, FM, Lyme and Post COVID in BC.Thank you for your time in completing this survey. By clicking
We need your voice! Help inform better healthcare for people living with ME, FM, Lyme and Post COVID in BC. Thank you for your time in completing this survey. By clicking "Start", you consent to the ...
https://info595.questionpro.com/Health2024
10 months ago
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reposted by
ME/FM Society of BC
Maggie Keresteci
10 months ago
Having
#LongCovid
has made it crystal clear that we do not have a robust, systematic way to support caregivers. We need a co-designed person-centred system where supports are built in Q: What happens when a
#caregiver
becomes a
#Patient
in Canada? A: Nothing....absolutely nothing
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reposted by
ME/FM Society of BC
Billy Hanlon
10 months ago
Burnley Express: 'ME: 'My daughter has ME, she went into the appointments able to walk and came out in a wheelchair'' 'We speak with Michiel van Zanten who lives with ME & Janet Sylvester from MEAction whose daughter Emma has been living with ME for 12 years'
www.burnleyexpress.net/health/me-ch...
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'My daughter has ME, she went into appointments walking and came out in a wheelchair'
There are an estimated 1.3 million people in the UK with ME 🏥
https://www.burnleyexpress.net/health/me-chronic-fatigue-syndrome-tired-doesnt-even-describe-it-4897269
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reposted by
ME/FM Society of BC
Adithya Ramachandran 🇨🇦
10 months ago
Chiming in to add that my spouse and I have had zero respiratory infections since the last one in January 2020. The only reason: Masks. All public places. We started off with cloth, upgraded to KN95s, and then finally N95s when Omicron popped up. Our prepandemic average was 2-3 per person per year.
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reposted by
ME/FM Society of BC
Isabel Jordan (she/her)
10 months ago
Today, on the International Day for Persons with Disabilities, I am beyond proud that the Canadian Institutes for Health Research have released their Anti-Ableism Action Plan, entitled "From Intention to Impact". 1/3
cihr-irsc.gc.ca/e/54121.html...
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From Intention to Impact: CIHR Anti-Ableism Action Plan - CIHR
https://cihr-irsc.gc.ca/e/54121.html?hsid=c305a8db-2541-4e3f-b005-5eefba119d13&utm_medium=twitter&utm_source=cihr_irsc
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reposted by
ME/FM Society of BC
10 months ago
Immune cells become exhausted in
#MECFS
. Read about the latest findings of the PNAS research paper of M. Hanson et al. here:
news.cornell.edu/stories/2024...
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Immune T cells become exhausted in chronic fatigue syndrome patients | Cornell Chronicle
The study found that key CD8+ T cells showed signs of constant stimulation that lead to an exhausted state, a condition that is well-studied in cancer.
https://news.cornell.edu/stories/2024/12/immune-t-cells-become-exhausted-chronic-fatigue-syndrome-patients
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reposted by
ME/FM Society of BC
Lawrence (Larry) Mróz
10 months ago
The BMJ will remunerate patient and public reviewers | The BMJ
www.bmj.com/content/387/...
#PatientEngagement
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The BMJ will remunerate patient and public reviewers
The BMJ will offer £50 for reviews by patients and the public From January 2025 patients and members of the public who complete a review for The BMJ will be offered £50 or a 12 month online subscript...
https://www.bmj.com/content/387/bmj.q2581.abstract
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This
#GivingTuesday
, support those living with ME, FM, & Long-COVID! Your gift can funds vital support groups & email series that empower individuals. 💌🤝
www.canadahelps.org/en/dn/9932?v...
Monthly or 1-time donations make a difference! Not able to give? Share our mission or sign up for membership.
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https://www.canadahelps.org/en/dn/9932?v2=true
10 months ago
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reposted by
ME/FM Society of BC
betsy ladyzhets 😷
10 months ago
We made a zine!
@thesicktimes.bsky.social
commissioned artist Katie Drackert to create a printable mini-magazine of our first year’s highlights, as well as top Long COVID and COVID-19 resources. Check it out:
thesicktimes.org/2024/12/02/s...
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Special edition zine: One year of The Sick Times - The Sick Times
We made a zine! To celebrate our first anniversary, we commissioned artist Katie Drackert to create a printable mini-magazine of our first year’s highlights, as well as top Long COVID and COVID-19 res...
https://thesicktimes.org/2024/12/02/special-edition-zine-one-year-of-the-sick-times/
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reposted by
ME/FM Society of BC
Simon Spichak
10 months ago
Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients. I spoke with experts + advocates including
@sunsopeningband.bsky.social
, Adriana Patino,
@sabrinapoirier.bsky.social
to breakdown why.
#pwME
#LongCOVID
#CanadaSky
simonspichak.beehiiv.com/p/everything...
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Everything Wrong with Canada's Proposed Long COVID Recommendations
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.
https://simonspichak.beehiiv.com/p/everything-wrong-with-canada-s-proposed-long-covid-recommendations
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reposted by
ME/FM Society of BC
Illustrator Interrupted
10 months ago
Those who continue to push the FND/psych narrative should lose their medical licenses for wilfully ignoring scientific advances and their Hippocratic oath “to do no harm”
add a skeleton here at some point
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reposted by
ME/FM Society of BC
Sickandtiredaus Jordan Crane
11 months ago
You can protect yourself & your loved ones from COVID with these 6 steps: 😷 Wear a respirator mask 🏠 Stay home if sick ⏰ Test if you have symptoms 🌳 Let fresh air in or meet outdoors 💉 Stay up to date with your vaccinations 💡 Talk to your GP about COVID medicines.
youtu.be/FlBfq22nxt8?...
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Jordan’s long COVID story
YouTube video by Department of Health Victoria
https://youtu.be/FlBfq22nxt8?si=DuQ0GhRDepXon89S
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reposted by
ME/FM Society of BC
DoNoHarm BC
11 months ago
Advocacy alert ‼️ New Canadian draft recommendations for Long Covid are out, & they include concerning guidance to EXERCISE to prevent Long Covid, & to use CBT as a treatment. Have your say by Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern:
www.research.net/r/CAN-PCCRec...
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reposted by
ME/FM Society of BC
Brian Hughes
almost 2 years ago
Your usual reminder that CBT has *never* been shown to improve *actual physical symptoms* in
#MECFS
patients. Self-reported well-being is often higher after CBT; but that's what CBT does -- it gets people to look at things more positively. Actual strength, endurance, mobility etc all UNAFFECTED
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Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient ...
Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis
https://www.cambridge.org/core/journals/psychological-medicine/article/does-the-effect-of-cognitive-behavior-therapy-for-chronic-fatigue-syndrome-mecfs-vary-by-patient-characteristics-a-systematic-review-and-individual-patient-data-metaanalysis/63F43CD7337CA7D005FA5FFE074A341F
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Our upcoming Social and Support groups:
www.mefm.bc.ca/post/novembe...
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November social support group announcement
Social Support for people living with ME, FM and/or Long-COVID. Advanced registration for each session is required. Registration is capped at 20. Our professionally facilitated social support groups a...
https://www.mefm.bc.ca/post/november-social-support-group-announcement
almost 2 years ago
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reposted by
ME/FM Society of BC
Dialogues ME/CFS
almost 2 years ago
www.youtube.com/watch?v=278v...
Videos of the PolyBio symposium held on Friday are available on youtube. Lots of exciting work being done by so many researchers. Thank you so much.
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reposted by
ME/FM Society of BC
Sabrina Poirier
almost 2 years ago
Let’s start a thread of awesome follows on here that relate to
#MyalgicEncephalomyelitis
#MECFS
#LongCovid
or
#InfectionAssociatedChronicIllnesses
. Because it is hard to rebuild community on a new platform…but doing it as a
#PwME…nearly
impossible. Let’s help each other with safe suggestions.
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