KCIMESG retweeted
Thank you to @thesicktimes for exploring the “October slide” in ME/CFS and Long COVID, featuring insights from occupational therapist Amy Mooney, BHC nurse practitioner Jennifer Bell, and people sharing their lived experiences.
Changing seasons affect many people with Long COVID, myalgic encephalomyelitis, and other chronic illnesses, but not all in the same way. Research has a long way to go before it can explain the phenomenon. thesicktimes.org/2026/10/20/…
KCIMESG retweeted
This is happening on Thursday (29th).
Please support 🙏💙
All info, resources, and links on our website.
In collaboration with @StripyLightCIC will be hosting an online educational event on Severe M.E.
#BedForSevereME #pwME #Fundraising
KCIMESG retweeted
Olympian Beth Dobbin Calls for ME Research Funding: After revealing her ME diagnosis, the former Team GB athlete wrote to Andy Burnham urging the UK government to invest more in research. bbc.com/sport/athletics/arti…
KCIMESG retweeted
Doncaster Free Press: 'Doncaster woman raises £15,000 for research into illness affecting Olympian sister Beth Dobbin'
'The sister of former Olympian sprinter Beth Dobbin says she is incredibly proud to have raised over £15,000 for ME Research UK.'
doncasterfreepress.co.uk/spo…
KCIMESG retweeted
We're happy to share that we now have an MP briefing live (joint with Action for ME) which you can send to your MP to give them all the info they need to support @BethDobbin in her campaign for increased ME research funding.
You can find the briefing and our template 👇
KCIMESG retweeted
After revealing she was diagnosed with myalgic encephalomyelitis this past week, @BethDobbin has written to Andy Burnham to call on the UK government to fund research into the chronic illness.
Back in May the UK government stated they would invest £4.75 million into a world-first genomics study of ME, but that figure is quite a lot lower compared to current research on other illnesses.
There's no doubting that @BethDobbin has raised significant awareness of ME and you'd hope it will lead to further action by those who could make a difference!
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
KCIMESG retweeted
New research from Prof. Andrea Polli and Jolien Hendrix from the Vrije Universiteit Brussel, Brussels, Belgium, acknowledges funding from ME Research UK.
Read more: tinyurl.com/4mz8nfjc
Link to the publication: tinyurl.com/34j68cur
KCIMESG retweeted
On Sunday, Faye will run the Yorkshire Marathon to raise funds, inspired by her sister Beth, an Olympic athlete who developed ME in 2022. Beth has spoken to the BBC to raise awareness of ME/CFS.
Support Faye: justgiving.com/page/faye-dob…
Read Beth’s story: bbc.co.uk/sport/athletics/ar…
KCIMESG retweeted
Ich höre sehr viele Erfahrungsberichte von ME/CFS-Erkrankten, aber bin immer wieder entsetzt:
Einem Betroffenen teilte der Facharzt mit, dass seine Schmerzen kein Problem seien, weil er sowieso nur den ganzen Tag rumläge und nicht arbeite. Daher solle er sie einfach aushalten.
KCIMESG retweeted
Measures of Overall Illness Severity and Burden for ME/CFS: A Scoping Review
link.springer.com/article/10…
"Our review indicates that studies vary widely in how illness severity and burden in ME/CFS are operationalized."
#MEcfs #PwME
KCIMESG retweeted
Can we give this petition a big push please.
Develop and fund a National Disability Hate Strategy, co-produced with Disabled People’s Organisations, to tackle disability hate crime, online abuse, discrimination, public stigma and improve awareness of visible and hidden disabilities.
petition.parliament.uk/petit…
KCIMESG retweeted
I'm very uncomfortable about Miranda Hart. Her experience is hers to tell. But at the same time it's interpreted as "Miranda is flying the flag, showing she's battling on, willing to get on with life'."
Whilst so many of us are 'battling on' just for basic survival of life.
KCIMESG retweeted
ME Research UK wants to present its work and the realities of ME/CFS in ways that are relatable to supporters. We are collecting anonymous quotes about various symptoms to be used at our discretion online, in print, and for internal education.
tinyurl.com/OIsurveyME
KCIMESG retweeted
Symptom Saturday: Orthostatic intolerance refers to when the body fails to properly compensate for moving to an upright position, resulting in debilitating symptoms. For many living with ME/CFS, orthostatic intolerance drastically restricts daily life. tinyurl.com/OIsymptomsat
KCIMESG retweeted
Understanding severe M.E. means confronting difficult realities. On 29th October, join this essential discussion on care, stigma, mortality, and support.
Professionals, sign up here - eventbrite.co.uk/e/severe-me…
#Learning #Reflection
KCIMESG retweeted
Shortly,@karenphysiocouk will be presenting an abstract at the Chartered Society of Physiotheray conference.
"A mixed-methods randomised controlled feasibility trial of transcutaneous auricular vagus nerve stimulation for people with ME"
KCIMESG retweeted
Decades of underinvestment in ME/CFS research have left millions of patients without approved treatments.
Olympian @BethDobbin recently shared her experience of going from training five hours a day to living with severe ME/CFS, spending much of her time bedbound.
Her story brings attention to a reality that millions of people living with complex chronic illnesses know too well: the devastating impact of these conditions and the urgent need for greater investment in research.
The research gap is significant.
Data shared by Beth from @wecrunchme highlights decades of underinvestment in ME/CFS research compared to other diseases, contributing to a widening gap in scientific knowledge and clinical trials.
Research funding is essential to changing this trajectory.
Patients deserve answers. They deserve treatment options. And they deserve the same urgency and investment in research as people living with other serious illnesses.
Thank you, Beth, for sharing your experience and advocating for the ME/CFS community. We stand with you in pushing for meaningful change. 💙
#MECFS #ChronicIllness #MedicalResearch #ComplexDisordersAlliance
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
KCIMESG retweeted
Debra developed ME aged 40 & for 12 years she has been looking for holistic ways to treat herself for both ME & perimenopausal sxs. 38% of women with ME say menopause worsens their sxs & she knows what helps her may not help others. Much research is needed
tinyurl.com/2zfv8eey
KCIMESG retweeted
Women ‘more likely to be told autoimmune conditions are psychological’
theguardian.com/society/2026…
































