@cjsergi9
M.E. Dx 2015. Since 2016 no longer able to work as a teacher due to this life-changing debilitating illness 😔Need a wheelchair if I do manage to go out. 95% housebound. Still love music, films, TV & having a laugh. And 😺 Infrequent but interested 🦋user
Pls take a minute to vote for Invest in ME Research & help them receive a share of £500,000 in grants at MyGivingCircle.org.
Every vote counts, so let's rally together & make an impact. It’s free to vote so go on… pls
🙏🏻
mygivingcircle.org/invest-in-me...
#pwME #MECFS
Chronic Pain at Christmas Christmas can be especially challenging for those managing chronic pain. It's crucial to: Pace Yourself: Plan ahead and make decisions that minimize stress and physical demands. Communicate with Confidence: Have a prepared one-liner if you need to set boundaries or say no, e.g., "I'm taking a short rest now so that I'm able to take part again later. Thanks for your understanding." < Chronic Pain Ireland
Coping Over Christmas
chronicpain.ie/information-...
Written by a chronic pain group but relevant for anyone who needs to pace their activities.
#ChronicPain #LongCovid #MEcfs
Please vote for free for the small volunteer-run charity INVEST in ME RESEARCH & help them receive a share of £300,000 in grants at MyGivingCircle.org at the end of the year. Every vote counts, no pressure to donate #VoteForImpact #MECFS #pwME
mygivingcircle.org/invest-in-me...
#MECFS #PwME
Pls vote for Invest in ME Research at MyGivingCircle.org
It’s free to vote & will help Invest in ME Research win a share of £300,000 in grants.
It’s easy! This is the page you get to when you click on this link:
mygivingcircle.org/invest-in-me...
Square image that features 9 squares with images of clothing. The top 3 squares feature sweatshirts with different sayings, strength in community in red, still sick still fighting in navy, and #MillionsMissing in black. The 2nd row of squares feature the strength in community design, small business Saturday, and #MEAction logo in a heart. The 3rd row features jogger pants with different sayings, the meaction logo in a heart in red, still sick still fighting in navy & #MillionsMissing in black.
This #SmallBusinessSaturday, we are excited to share new items in our store!
We have a new design, Strength in Community, featuring our logo in a heart!
We also have a new item- joggers! Our #MillionsMissing & #StillSickStillFighting are also available! www.bonfire.com/store/meacti...
#pwME
The Calgary Herald, Canada. 30th November 1996. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The We&Me foundation is funding a large healthcare study in people with #MECFS and #PAIS (including #LongCOVID). The larger the sample size, the better, so fill it in if energy permits and share.
s2survey.net/pais/index.p...
[It’s quite long but it lets you pause; better to open in browser]
Really helpful, thanks Colleen 👏🏻👍🏻 x
I wrote an article to help people with #MyalgicEncephalomyelitis connect on Bluesky. Feel free to share. (My Substack is free)
open.substack.com/pub/colleens...
Very helpful article especially for #ME #LongCovid people testing the water here. 👇
Thanks for sharing this Carole, so helpful! 👍🏻👏🏻 x
👀 👀 have a look at how you can help improve physiotherapy education
The 250,000 figure for ME sufferers is now ancient, from research done in the 1980s. There are 750,000 - 1.2 million ME patients in the UK from recent research. Funding wise the only biological research I can find since 2000 is decodeME@3.9mil, making it about 13p per patient a year.
Why might existing ME/CFS prevalence estimates not apply to the UK population today? Rates of ME/CFS differ by factors including age, Different ethnicity, and sex. If populations differ in terms of these populations factors, rates of ME/CFS are not directly comparable e.g. between studies, areas of a country, or across countries. The impact of COVID-19 and long COVID Different methods • Medical records: only captures those accessing health care, accuracy can vary. • Self-report: Whilst people who self-report may indeed have the disease, it is important to remember that this may not always be the case e.g., due to misdiagnosis. Application of diagnostic criteria: Differences between ME/CFS criteria limit comparability e.g., Fukuda for "CFS" does not require post exertional malaise while Canadian Consensus Criteria for "ME/CFS" does. • Research suggests that the symptoms of long COVID and ME/CFS overlap - and evidence from the USA has suggested that the number of people self-reporting symptoms of ME/CFS has increased since the COVID-19 pandemic. Nevertheless, not everyone with long COVID meets the diagnostic criteria for ME/CFS. INFORM. INFLUENCE. INVEST. SC036942 ME RESEARCH UK
Earlier, ME Research UK highlighted that there are major limitations of taking existing prevalence estimates and applying them to the UK population in 2024. The next article in this series explains why this is the case in more detail:
www.meresearch.org.uk/what-are-the...
#MEcfs #CFS #PwME
It's been great to see the influx of people from the ME/CFS and long Covid community in the last week.
Here's a starter pack by @chromatowski.bsky.social that's worth checking out:
bsky.app/starter-pack...
It lists interesting people to follow and also has a feed
#MEcfs #CFS #PwME #LongCovid
1/
Please take the time to sign this - one link for USians and one link for the rest of us.
Just a gentle reminder that fear of movement doesn’t correlate with cardiopulmonary exercise test results in people with ME/CFS. The cause of exercise/physical activity intolerance in living with PEM/PENE isn’t that they are afraid to move. A 20-year-old study. pubmed.ncbi.nlm.nih.gov/15283620/
Plain white background with the words Bausted- language of the chronics- to the exist in a state so far beyond exhausted that you cannot be compared to someone who is just tired.
There are not enough words to describe life with a chronic illness. #notjusttired #mecfs #longcovid
Mike Harley runs marathons to raise funds for ME research.
A well good human. Def worth a follow! :)
Lovely people of bluesky - if you are looking for gifts this season, my book - 25 birds, one year one garden is reduced on Amazon!
All profits to biomedical research (#mecfs)
#ukbirding
25 Birds amzn.eu/d/cxOGiEg
We have been here a while
From Broken Wings to (hopefully) Clearer Skies
www.investinme.org/iimer-newsle...