ME/FM Society of BC

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

🌟 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...

Caregiving for someone with #MEcfs, #LongCovid or Fibromyalgia? A new resource is launching THIS FRIDAY to support YOU. 💪 Stay tuned! #caregiver #resources #comingsoon

www.mefm.bc.ca/post/respons...

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...

🌟 #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

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

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

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

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

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

🌟 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

Holiday Module| MEFM SOCIETY OF BC

Our FREE Holiday Pacing Module is OUT!! What's your biggest holiday energy-zapper? Share with us! 🌟 www.mefm.bc.ca/holiday-module #HolidayPacing

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 ...

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-...).

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

'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 🏥

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...

N95s work because of how they are designed:

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.

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...

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.

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...

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...

The BMJ will remunerate patient and public reviewers | The BMJ www.bmj.com/content/387/...

#PatientEngagement

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.

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...

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...

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.

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...

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”

YouTube video by Department of Health Victoria Jordan’s long COVID story

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?...

Red and white graphic of CAN-PCC Canadian guidelines for post COVID-19 condition. CAN-PCC recommendations public comment survey – November 2024. Draft recommendations for input.

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...

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

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...

Our upcoming Social and Support groups:

www.mefm.bc.ca/post/novembe...

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.

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.