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
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.
2
4
1
14
948
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
1
4
4
100
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…
3
10
156
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…
2
38
1
148
1,923
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 👇
4
46
1
87
1,852
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.
3
14
135
2,173
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
1
3
9
267
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…
1
15
52
903
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.
20
29
3
280
6,621
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…
1
93
3
101
1,408
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.
“I was a bit worried for her. I was thinking, how is she going to feel after that?” Dr Amir Khan talking about Miranda Hart’s appearance on Celebrity Traitors and how even small amounts of exertion can make her symptoms worse.
16
15
7
305
106,677
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
4
10
381
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
8
19
435
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
1
1
1
114
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"
1
5
2
19
1,099
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.
2
17
69
979
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
2
5
230
KCIMESG retweeted
In my early 20s I had Malaria, Shigella, Giardia, Blastocystis ++ I was hospitalised & treated in 🇮🇳& then in the🇬🇧 I never fully recovered These bacterial & parasitic pathogens lead to me developing #ME inc #PEM Many different causes ➡️ M.E diagnosis
5
9
74
1,504