#NHSnurse/fitness instructor on ⏸️ C19 survivor battling #LongCovid#ME for 69 months. Advocating for LC sufferers in NI. LC advisor with @hope4mefibroni.
1/As #LongCovidAwarenessDay approaches I want to share a video that my dear friend @JoanMcparland & I made to raise awareness & educate on the awful illnesses #longcovid & #ME. The similarities between the 2 can't be ignored,not the way both illnesses have
https://t.co/7Za8VLpO9F
@DarainChains@hope4mefibroni Are you for real @DarainChains???? Maybe educate yourself on the work that this charity has done for thousands of ppl suffering in NI!!! All done by volunteers who are sick in their beds & suffer serious repercussions on their health for the good of others!!
"Most of the people I've seen with #MECFS are so much sicker than my cancer patients."
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 Invest in ME conference.
Research indicates that for many, severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can cause a lower quality of life, greater functional impairment, and more daily disruption than many cancers or multiple sclerosis. Patients with ME/CFS often report being bedbound, experiencing severe pain, and having little to no available treatment or path to remission.
Key Findings on ME/CFS Severity:
Quality of Life: Studies have shown that people with ME/CFS have lower quality of life scores than those with various cancers, stroke, or heart attacks.
Daily Functioning: Approximately 25% of people with ME/CFS are severely affected, often housebound or bedbound.
Comparison to Cancer: While cancer treatments are intense, they often have a defined endpoint, whereas ME/CFS is frequently a long-term, disabling, and ongoing condition with limited treatment options.
Impact on Life: The illness can be so debilitating that it leads to a total loss of ability to work, socialize, or perform basic daily tasks like washing or eating.
Severe Symptoms: In severe cases, patients may require tube feeding and live in darkness due to light and sound sensitivity.
While cancer remains a highly fatal disease, the chronic, unpredictable, and unsupported nature of ME/CFS leads to extreme, long-term impairment that some sufferers and experts describe as sometimes feeling "worse" due to the lack of effective, universally available treatments
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
https://t.co/MoYCAYdjnc
@JoanMcparland@Starseeker1986 Then please, b4 you post a comment like you did initially about the event & charity, check the charity info & history so that you can aim your upset to the correct ones rather than those that are genuinely trying their best to help. 🙏🏼
Events don’t appear by magic. This was organised and fundraised for, by people with M.E. & LC while ill, unpaid, and at huge personal cost with #PESE
If others can do the same for a Long Covid–only event, we’d fully support it. Overlap isn’t the enemy.
Volunteer NOW!
Maybe you could start something if you feel there is a lack of #LongCovid information or events in NI instead of criticising an #ME charity who are doing their best to include us in their events at a small feel. Some thanks & grace wouldn't go amiss @Starseeker1986
As a severe #LongCovid pt in NI, I wouldn't be here without the help of @hope4mefibroni. The help, support & education this charity has given me is more than ANYTHING I have received from the #NHS who I worked for & caused my illness for over 20 yrs! Your anger is misdirected!
Surely this should be free? An event in Northern Ireland with experts discussing #LongCovid and MECFS
Why can’t they do a event which is strictly LongCovid ???
Or maybe
LC & MCAS
LC & Dysautonomia | POTS
LC & Brain damage
LC & Vascular
LC & Metabolic
https://t.co/EKEAqQW2Qy
Why should they do an event solely for #LongCovid?The charity is run by very ill #ME pts..who have included LC in ALL aspects of their work since it has become clear that there are NO appropriate services run by NHS in NI for LC.Why should it be free?It's a volunteer led charity!
https://t.co/9T2twLuZnt
Hey, it's been a long time since I've posted here. I've joined Bluesky & would love you to follow me there. Still existing, housebound & mostly in bed daily with LC induced ME. Continue to advocate, educate & volunteer when able. #longcovid#ME
🧵Huge thanks to @Linda_ANP & @rebslogan for delivering a brilliant 90-minute session on #MyalgicE to Advanced Practice Nursing students last wk @UlsterUniEPC
Part of our ongoing outreach to close the gap in M.E. awareness/training across healthcare education
#Hope4MEFibroNI
#MEawareness in Northern Ireland 2025 is going to be epic 💥
12 months planning by volunteer patients & their family members, what could possibly go wrong 💙
👇
5 years ago my life was put on ⏸️ after testing C19+. It's never started again & has worsened over time due to #LongCovid induced #ME. I put my life on the line to work in C19 ED as an #NHS nurse-now abandoned & left to rot, unable to work or live just exist mostly from bed.
New #ThereForME blog out today: Will the plan deliver?
Your essential update on the delivery plan for ME/CFS and our final push for #FundThePlan
Link in next post 👇
@CaroleBruce17@MEAssociation@actionforme I absolutely agree Carole. If I'd been told about PEM 5 years ago, I believe I wouldn't be as bad as I am now. I was told to carry on, get back to normal which I did, now mostly bedbound.
Happy Mother’s Day to the fabulous @rebslogan and thank you for everything! We all love you so very much! The girls and I are extremely lucky to have you in our lives! ❤️❤️❤️
1/As #LongCovidAwarenessDay approaches I want to share a video that my dear friend @JoanMcparland & I made to raise awareness & educate on the awful illnesses #longcovid & #ME. The similarities between the 2 can't be ignored,not the way both illnesses have
https://t.co/7Za8VLpO9F