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@tomkindlon.bsky.socialOct 5, 2026, 9:18 PM

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What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "...Feels like a huge overcoat of concrete is over me..." REM UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 9:14 PM

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Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS "...My partner finds it difficult to understand how things are for me. There can be tension there - he doesn't want to hear about how rough I feel, or what research has shown, and why I've not unloaded the dishwasher for example, when he's been at work all day...." Response from ME Research UK Symptom Saturday Fatigue Survey INFORM. INFLUENCE. INVEST. RESEA,CH UK SCO,6942
@cfscounselling.bsky.socialOct 5, 2026, 9:00 PM

Are you thinking about counselling and are #ready2talk? Learn more about #CFS Counselling Services at https://cfssc.ca/get-help/counselling. #HopeLivesHere

@tomkindlon.bsky.socialOct 5, 2026, 8:11 PM

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What fatigue in ME/CFS feels like.

#mecfs #pwME #cfs #fatigue #chronicfatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

What fatigue in ME/CFS feels like heavy leaden energy-depleted thinking and concentration affected drained battery not charging properly too exhausted to fulfill basic needs plug pulled weak like a constant flu weighed down by concrete wading through treacle increased gravity feeling bone deep exhaustion Recurring themes from ME Research UK Symptom Saturday Fatigue Survey INFORM. INFIINCE. INVEST. RESEARCH UK SCO36942
@tomkindlon.bsky.socialOct 5, 2026, 7:25 PM

🧵
Ultimately, fatigue in ME/CFS shrinks lives so severely it often takes a devastating toll on mental health. This impact is unsurprising given the immense loss of careers, relationships, hobbies, & independence.

tinyurl.com/fatigueimpac...

#mecfs #pwME #cfs #fatigue #ChronicFatigueSyndrome

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Impact of fatigue in ME/CFS "I lost my job, I don't leave my home. I miss appointments. I can't enjoy hobbies." Response from ME Research UK Symptom Saturday Fatigue Survey IC% RESEA,CH U K INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 6:38 PM

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There’s a typo in one of my comments:

“I shared biological studies on ME/CFS because biomedical knowledge is constantly evolving in general and the hope is that the more eyes there are on it, *the* more that people can put the pieces of the puzzle together to find solutions.”
#mecfs #pwme #cfs

@tomkindlon.bsky.socialOct 5, 2026, 5:31 PM

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper

"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

www.sciencedirect.com/science/arti...

#MEcfs #PwME #epatient #epatients #CFS

Abstract It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.
@tomkindlon.bsky.socialOct 5, 2026, 4:40 PM

🧵
Fatigue is an unrelenting,deeply isolating symptom in ME/CFS.It cuts individuals off from family time, social activities, & hobbies, fundamentally fracturing their identity & how they view themselves.It leaves people grieving who they used to be

tinyurl.com/fatigueimpac...
#MEcfs #CFS #fatigue
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What fatigue in ME/CFS feels like Responses from ME Research UK Symptom Saturday Fatigue Survey i INFORM. INFLUE10E. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 4:28 PM

From @meresearchuk.bsky.social

Self-management support for people with ME/CFS should be personalised, delivered in manageable stages, and embedded in a consistent care pathway with ongoing review and follow up finds study from Norway.

Read more: tinyurl.com/ycyrv5ms

#mecfs #cfs #pwme

`Self-management support' often fails to reflect the physical and cognitive nature of the ME/CFS r Researchers in Norway interviewed 12 people with -1 ME/CFS and 4 next of kin about their experiences of self management support for ME/CFS. r Results indicated that participants felt that current support offered by the health care system often failed Lo reflect the physical and cognitive effects of ME/CF_S rParticipant experiences were grouped into three key themes, which reflected that the following should be included in care: Tailored, accesible Consistent care Peer, practical and L support and validation family support. ] r Note: Participants with ME/CFS in this study were all women, limiting the transferability of the results. RESEARCH UK INFORM. INFLUENCE. INVEST. SC 036942 Gronning, K., Lysfjord, L.E. & Rostad, A.K.H. BMC Health Sery Res. 2026;26 (1182): 14962-9
@tomkindlon.bsky.socialOct 5, 2026, 1:53 PM

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"Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS."

#MEcfs #CFS #PwME

@tomkindlon.bsky.socialOct 4, 2026, 10:16 PM

New from France

Interesting long Covid research where all participants satisfy ME/CFS criteria

Evidence for transcriptomic changes impacting muscle contraction in patients with post-acute COVID-19 syndrome

www.sciencedirect.com/science/arti...

#LongCovid #MEcfs #PwME #CFS #postcovid #postcovid19

Post-acute COVID-19 syndrome (PACS) overlaps with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) but, due to frequent muscle pain and exertional intolerance, neuromuscular disorders are often suspected. We report the results of a comprehensive neuromuscular evaluation in 27 PACS patients (22F/5M; median age 41 ys). All patients developed chronic fatigue (>6 months), post-exertional malaise, and cognitive impairment, with muscle pain in 88% but no neuromuscular deficits at clinical examination. 18/27 patients were unable to work. All patients fulfilled established ME/CFS diagnostic criteria (CDC 1994, ICC 2011, Inst Medicine 2015, NICE 2021). Electrophysiological studies and CK levels were normal. Brain 18FDG-PET/MRI (14/27) showed posterior hypometabolism in 8/14. Muscle biopsy (7/27) showed moderate dysimmune changes in 2/7. Exploratory transcriptomic analyses performed in muscle biopsies from PACS patients and pre-COVID controls unveiled in PACS differentially expressed genes in the cytokine and autophagy pathways. Interestingly, other genes were also differentially expressed in pathways affecting actin, the cytoskeleton, and contraction. Indeed, we found upregulated genes involved in the troponin-tropomyosin complex, a key regulator of muscle contraction through calcium binding. We also found downregulated genes involved in the formation and stabilization of actin bundles at sarcomere Z discs and in mechanical signaling. These findings indicate that PACS patients with prominent muscular symptoms do not exhibit overt neuromuscular involvement on standard investigations but may show subtle myopathic or dysimmune changes and central metabolic alterations. At the transcriptomic level, the data show an impact on key pathways involved in contraction. The overlap with ME/CFS highlights the importance of careful differential diagnosis and suggests a complex pathophysiology beyond a basic muscle disease.
@iballesty.mastodon.ie.ap.brid.gyOct 4, 2026, 7:40 AM

#LongCovid #CFS This seems interesting. I'd love the opinion of an expert. Scientists may have found a “unifying theory” of chronic fatigue https://www.sciencedaily.com/releases/2026/09/260929053543.htm

@desiraemessenger.bsky.socialOct 4, 2026, 6:24 AM

#cfs/me #me/cfs #longcovid #healthcare

@tomkindlon.bsky.socialOct 3, 2026, 2:35 PM

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Photo of Esther Rantzen

#MyalgicE #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of Esther Rantzen
@tomkindlon.bsky.socialOct 3, 2026, 2:30 PM

I thought I would mark Esther Rantzen’s passing.

See image for my thoughts.

May she rest in peace

#MEcfs #PwME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Tom Kindlon's ME CFS & related page: News, Research and more Published by Tom Kindlon(tooltip)Only people who manage this Page can see who's published · about an hour ago · I thought I would mark Esther Rantzen’s passing. I remember sometimes watching “That’s Life” on BBC1 in the 1980s so feel I have known her a long time. I was very grateful when she started raising awareness of ME in the mid-1990s. At that stage, awareness levels were not at the level they are now and it was still quite a controversial condition and diagnosis. I remember in late 1997 or 1998 getting a list of press cuttings from Action for ME and a large percentage of them (maybe 35-40%) involved her! She had had huge success getting coverage of the illness. I imagine she helped many get diagnosed as well as helping in other ways. 1996 is when my mum and I started raising awareness and understanding of ME in Ireland, where awareness levels were a lot lower than in the UK. We were very grateful for her doing a long interview on Irish national radio, the Pat Kenny Show if I remember correctly. There was also a large feature in an Irish national newspaper, I think the Sunday Independent which had the largest readership then (around 1 million). I think she would have kept at it but it was Emily (her daughter) who didn’t want all the focus. I remember she quoted something her brother said that she was a grade D celebrity cripple. I disagreed with some of the things Esther Rantzen said in subsequent years e.g. about LP. But I will be forever grateful to her for her earlier campaigning work for ME. May she rest in peace.
@irishmecfsassoc.bsky.socialOct 2, 2026, 6:51 PM

From left: Orla Ní Chomhraí, Jacinta Fay & Aoife Delany Reade at the post-show discussion panel following "What about M.E.?": 4 Short Plays About Myalgic Encephalomyelitis

More info in next post

#MEcfs #PwME #CFS

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From left: Orla Ní Chomhraí, Jacinta Fay & Aoife Delany Reade
@tomkindlon.bsky.socialOct 2, 2026, 2:37 PM

Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage

eepurl.com/QShnc4nywr

#MyalgicEncephalomyelitisg #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialOct 1, 2026, 6:48 PM

This is up to 223,000 views now

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS

@tomkindlon.bsky.socialOct 1, 2026, 6:40 PM

(Santa Rosa, California, USA)
"Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?"

#MEcfs #PwME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @sunsopeningband.bsky.social

Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head? If you are a woman between the ages of 18-65 and you have myalgic encephalomyelitis (ME) or you are healthy, you may be eligible to participate in a study. A Non-Invasive Way to Measure Blood Flow to the Head If you are eligible and agree to participate in the study, you will answer three questionnaires involving more about you, your signs and symptoms, and how well you can think and pay attention. This is a two-day test involving two different research sessions. During each session, you will do a maximal cardiopulmonary exercise test involving a stationary cycle. Before each test, you will complete a NASA Lean Test. Throughout the study, you will wear an earpiece that measures the blood going to your head. An honorarium is available to participants. For more information, and to participate, please contact info@workwellfoundation.org or tdavenport@pacific.edu. Location Workwell Foundation in Santa Rosa, California Are you eligible? A woman between the ages of 18-65 years Have ME Cleared by a medical provider to complete cardiopulmonary exercise testing If you aren't sure, a screening process is provided as part of the study If you're unsure if you meet the requirements, call or email the study's principal investigator: Todd E. Davenport, PT, DPT, PhD, MPH, OCS Professor Department of Physical Therapy University of the Pacific (209) 946-3159 tdavenport@pacific.edu
@tomkindlon.bsky.socialOct 1, 2026, 12:27 AM

DNA methylation: unifying framework for complex chronic conditions

www.cell.com/trends/genet...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #PwME #CFS #Fibromyalgia

DNA methylation: unifying framework for complex chronic conditions — Sharma et al Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratification, and monitoring of disease trajectories." Article | Thread
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