Kirklees and Calderdale Independent ME Support Group. We are a local ME/CFS Support group covering Kirklees and Calderdale as well as surrounding areas.
UK
Joined February 2011
- Tweets11.1K
- Following189
- Followers264
- Likes14.2K
“It’s a fluctuating illness, and you can’t just take a snapshot of it and think that’s what the person’s like all the time.”
Jane Colby explains why #MECFS can be so easily misunderstood on the BBC Politics Show in 2009.
KCIMESG retweeted
Today is PoTS Awareness Day – a day dedicated to raising awareness about postural orthostatic tachycardia syndrome (PoTS), an under-recognised and debilitating condition affecting many people with ME/CFS.
Read more: tinyurl.com/pots-awareness-d…
KCIMESG retweeted
Orthostatic intolerance isolates individuals from many areas of life, including basic daily tasks.
ME/CFS symptom burden/ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations e.g. Mind mind.org.uk/
KCIMESG retweeted
Want to get ahead in your practice? Our online ME/CFS training gives #Healthcare professionals the knowledge and confidence to recognise, assess and support people with ME/CFS using current evidence and best practice. Better understanding leads to better care.
#Learning #CPD
KCIMESG retweeted
Join us for the premiere of "Severe M.E.: Understanding the Reality, Recognising the Risks, and Improving Care" at 10:30am BST, 29 Oct.
A professional look at severe M.E., stigma, loss & improving support.
🎥 youtu.be/hfxbxVAYJwY
#SevereME #BedForSevereME #Webinar
KCIMESG retweeted
Prof. Rob Wüst has spoken to Men’s Health Netherlands about his research into ME/CFS, including the team’s paper which acknowledges funding from ME Research UK.
Find out more: tinyurl.com/k9s57ta3
KCIMESG retweeted
MERUK echoes the points about the need for research, made by Beth Dobbin when she wrote the PM. Especially the need for a cost-benefit analysis and ring-fenced funding, which have been consistently ignored by the UK Gov.
tinyurl.com/mr6c9mjw
KCIMESG retweeted
Olympic sprinter, Beth Dobbin, who now has severe ME post a Covid infection and glandular fever (mono) wrote to the Prime Minister, Andy Burnham, to highlight issues surrounding this disease and call for more research to be funded.
ForwardME and @ThereForME_UK have put together a template letter which you can use to write to your MP, asking them to support @BethDobbin's call for greater research funding.
Template letter: docs.google.com/document/d/1…
Find your local MPs contact details by searching here: members.parliament.uk/member…
N.B. The MEA are a part of ForwardME
#MECFS #MyalgicEncephalomyelitis #BethDobbin #AndyBurnham #PrimeMinister
ALT IMAGE DESCRIPTION: Photo of the Houses of Parliament. Graphic of a megaphone, with the heading "Write to your MP!" Wording: "Ask them to support Beth Dobbin's call for greater funding for ME/CFS research!" Logos: ME Association
KCIMESG retweeted
Orthostatic intolerance is profoundly limiting and isolating.
We are deeply grateful for the insights shared through our recent Symptom Saturday survey, and have drawn together responses about the experience of orthostatic intolerance. tinyurl.com/OIimpactME
KCIMESG retweeted
Gisteren verscheen er een stukje in Men's Health @MensHealthMag over ons onderzoek, en waarom ook profatleten long covid kunnen ontwikkelen (en hoe je het kunt onderscheiden van overtraining/gewone vermoeidheid):
menshealth.nl/nieuws/wat-is-…
#coverboy :)
KCIMESG retweeted
“Those who are not able to work due to #chronicillness are not on vacation. They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing… They are often too sick to leave their homes.” buff.ly/4f2d3v9
Ich bin Antonia und vor fast fünf Jahren ist meine beste Freundin Carmen schwer an ME/CFS erkrankt. Seitdem sehe ich, wie grausam diese Krankheit Leben verändert – und wie wenig die Welt darüber weiß.💙@chronic_fomo
Join us at 10:30am BST on 29 Oct for the premiere of:
Severe M.E.: Understanding the Reality, Recognising the Risks & Improving Care
Exploring severe M.E., stigma, loss, and what professionals can do to improve support.
▶️ youtu.be/hfxbxVAYJwY
#BedForSevereME #Webinar
Template letter in the link….
Send to your MP…. #MEAwareness
Thanks to #ThereForME
I finally sent this excellent letter to my MP, it's super easy & takes 2 minutes
Thank you @ThereForME_UK for providing it
The more MPs who are contacted, the better chance there is that we as individuals & as a patient group are heard.
#pwME
KCIMESG retweeted
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
KCIMESG retweeted
Yvette and Andrew Jackson were interviewed at their farm by ITV Border News, where they talked about the impact ME/CFS has had on their lives, and Yvettes new appointment joining the UK ME/CFS Biobank.
Their segment aired on the 22nd of October, and included an interview with Dr Charles Shepherd, MEA Hon Medical Adviser. Watch the segment on the blog! Timestamp 05:30 – 09:30.
meassociation.org.uk/c17b
#MECFS #pwME #MyalgicE #MECFSBiobank #CureME
ALT IMAGE DESCRIPTION: Photo of Yvette and Andrew in a sunny holiday photo. Heading: "Yvette and Andrew Jackson interviewed about new ME/CFS Biobank appointment on ITV Border News" Logos: ME Association, Cure ME
KCIMESG retweeted
Dr William Weir talking about #ME He doesn’t spare Simon Wessely!
Collaboration for Change" - Newry March 2026 Dr Weir youtu.be/EjF5Unc3ZIQ?is=MdtA… via @YouTube
KCIMESG retweeted
Dr Nancy Klimas talks about Mediator based treatment strategies in ME/CFS. An overview of treatment targets, current care and research directions. [53 mins] +Transcript +Chapters
tinyurl.com/c4krwcce
KCIMESG retweeted
2/2
"We’ve got some big things in the pipeline and we’re not dropping this."
"Thanks to everyone for the support."
bbc.co.uk/sport/athletics/ar…
