iiinova — where your digital self keeps evolving

Cathy Sergi @cjsergi9.bsky.social · 05/01/2025

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

mygivingcircle.org

Vote for the charities you love to share $500,000

Each year MyGivingCircle gives $1,500,000

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Tom Kindlon @tomkindlon.bsky.social · 22/12/2024

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

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

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Cathy Sergi @cjsergi9.bsky.social · 22/12/2024

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...

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Cathy Sergi @cjsergi9.bsky.social · 01/12/2024

#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...

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#MEAction Network @meactnet.bsky.social · 30/11/2024

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

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Royal Free 1955 @rfh1955.bsky.social · 30/11/2024

The Calgary Herald, Canada. 30th November 1996. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

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Yann (ME/LC) @me-cfs.bsky.social · 17/11/2024

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]

s2survey.net

Questionnaire | page 1

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Colleen Steckel @colleensteckel.bsky.social · 16/11/2024

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...

open.substack.com

Connecting via Bluesky

Building a stronger ME community

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Carole Bruce @cabruce.bsky.social · 13/11/2024

Very helpful article especially for #ME #LongCovid people testing the water here. 👇

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Cathy Sergi @cjsergi9.bsky.social · 17/11/2024

Thanks for sharing this Carole, so helpful! 👍🏻👏🏻 x

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Physios For ME @physiosforme.bsky.social · 14/11/2024

👀 👀 have a look at how you can help improve physiotherapy education

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Paul Keeble ME/LC @paulkeeble.co.uk · 21/10/2024

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.

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Tom Kindlon @tomkindlon.bsky.social · 31/10/2024

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

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

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Tom Kindlon @tomkindlon.bsky.social · 21/10/2024

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/

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Cate @midcatecrisis.bsky.social · 15/11/2024

Please take the time to sign this - one link for USians and one link for the rest of us.

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Todd Davenport @sunsopeningband.bsky.social · 17/11/2024

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/

pubmed.ncbi.nlm.nih.gov

Chronic fatigue syndrome: lack of association between pain-related fear of movement and exercise capacity and disability - PubMed

These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widesp...

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Gretch @gvnett.bsky.social · 17/11/2024

There are not enough words to describe life with a chronic illness. #notjusttired #mecfs #longcovid

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.

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Andrew Gifford @andrewgiffordphoto.bsky.social · 17/11/2024

Mike Harley runs marathons to raise funds for ME research. A well good human. Def worth a follow! :)

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Anna Wood @annakwood.bsky.social · 15/11/2024

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

amzn.eu

25 Birds : Wood, Anna K: Amazon.co.uk: Books

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 17/11/2024

We have been here a while From Broken Wings to (hopefully) Clearer Skies www.investinme.org/iimer-newsle...

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