#Cfs

Tom Kindlon

@tomkindlon.bsky.social

10 hours ago

Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations — Katherine Tuzzolino et al. "our results indicated that an increase in age is associated with reduced (i.e. less burdened) symptom scores. One explanation for this finding could be that as our sample aged, they had a better understanding of their functional capacity and could better manage the illness and its symptoms." "Notably, we found that the ME/CFS groups were not as burdened by emotional issues compared to the Control group"

Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations

journals.sagepub.com/doi/10.1177/...

Screenshot from Science for ME weekly update

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

Tom Kindlon

@tomkindlon.bsky.social

10 hours ago

The association between hair cortisol levels, Epstein-Barr virus infections and chronic fatigue in adolescents — Berit Elise Bergem Kongsnes et al. "elevated hair cortisol levels prior to EBV infection were not associated with an increased risk of developing chronic fatigue" "Chronic fatigue at six months following acute EBV infection is associated with reduced levels of hair cortisol" "our findings suggest that symptomatic fatigue precedes these physiological changes rather than resulting directly from them."

The association between hair cortisol levels, Epstein-Barr virus infections and chronic fatigue in adolescents

www.tandfonline.com/doi/abs/10.1...

A biopsychosocial theory turns out not to be true

Screenshot from Science for ME weekly update

#MEcfs #CFS #PwME #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

11 hours ago

George and his ME/CFS 3-panel cartoon 1st panel: George on his phone in a taxi: "today I'm starting graded exercise therapy at the ME/CFS clinic… Scientific studies prove it helps recovery". Woman talking to him on the phone: "okay… I hope it helps." 2nd panel: you see George walking away from a taxi into the ME/CFS Accredited GET clinic with graded exercise therapy on the window 3rd panel: weeks later George is being pushed in a wheelchair by the woman in the 1st panel walking away from the graded exercise therapy unit. He is angry with a thought bubble of swear words blocked out.

7/

More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

13 hours ago

Irish ME/CFS Association - for Information. Support & Research logo Might you be available for interview? Please let us know We will be sending out a press release to local and national media in late April/early May in advance of Dr Bansal's 5 talks (in Cork/Dublin/Galway/Limerick/Sligo) in May. We would particularly like to have local people from (a) Cork city and county (b) Galway (c) The Mid-West (d) the North West, but people everywhere are welcome to reply. You are not committing to anything at this stage but sometimes we need to act fast so it's useful to know who might be available.

If you prefer not to use the link below, you can contact us/Tom Kindlon if you prefer

docs.google.com/forms/d/e/1F...

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

Spoonkie Spoons

@spoonkie.bsky.social

14 hours ago

If your brain connection feels worse than a 90's dial up modem you might have a case of Idling Of March ..
#IdesOfMarch

#CFS #brainfog #spoonie #webcomics #buffering #dialup

Tom Kindlon

@tomkindlon.bsky.social

17 hours ago

Photo of Prof. Bhupesh Prusty

ME Research UK:

Prof. Bhupesh Prusty and his team have recently published results from their ME Research UK-funded study showing that immunoglobulins from the blood of people with post-infectious ME/CFS caused disruption to the mitochondria of healthy cells. bit.ly/4rgD13s

#MEcfs #CFS #PwME

Tina's Driving Lesson

@tinavstammy.bsky.social

17 hours ago

I don't think there is any way we can explain it. This is a pretty good description, but I couldn't have truly imagined this until I experienced it. #CFS #MECFS

I also couldn't have imagined it could go on for years, and I would still enjoy my now very constrained life.

Ben Nevis

@bennevis.bsky.social

19 hours ago

Tin Foil Hat Territory?
#NeuroLinguisticy
#FND (Ficticious Non Diagnosis)
#WMD (Word Morphing Dystopia)
#MUS (Make Up Something)
#CAD (Chronic Acronym Disorder)
#cfs (Conveniently Fabricated Stigmatisation

www.longcovidadvoc.com/post/tin-foi...
@longcovidadvoc.com

Tom Kindlon

@tomkindlon.bsky.social

19 hours ago

11/

“If you define the treatment requirement so strictly it is never satisfied as long as there is a hypothetical chance of recovery, & claim treatment should take place over a long period of time, you are in practice depriving ME sufferers of the right to disability insurance.”

#mecfs #cfs #pwme

Rowdy Rabouw

@rowdy.codes

1 day ago

New #cfp added for Commit Your Code Conference in September 2026. More details at cfp.watch/cfps/2026-co.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

Rowdy Rabouw

@rowdy.codes

1 day ago

New #cfp added for code.talks in November 2026. More details at cfp.watch/cfps/2026-co.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

Jean-Jacques Chabérnàque™ ⫶ 👽🕊️

@jjchabernaque.bsky.social

1 day ago

Das Bild zeigt einen weißen Hintergrund mit dem Text in schwarzer, handschriftlich wirkender Schrift: „March 15thInternational Long COVID Awareness Day“ Darunter befindet sich ein Awareness-Band in den Farben Grau und Türkis, auf dem „LONG COVID“ steht. Das Bild dient dazu, auf den Internationalen Tag zur Sensibilisierung für Long COVID am 15. März aufmerksam zu machen.

Übrigens: Der 15. März

Wieder so ein inhaltsloses Datum, das mit dem Etikett "Long Covid Awareness Day" im Kalender steht - nur, damit irgendjemand "etwas" getan hat. Das war's dann auch schon mit den Bemühungen.

DANKE SCHÖN! 😍

#LongCovidAwarenessDay
#LongCovid
#Covid19
#CFS
#Fatigue
#ME/CFS

Jude FireSong, aka Fabulous Phoenix Boy

@fabulousphoenixboy.bsky.social

1 day ago

{🧵, 5/5}

I want to be disability proud but also I need the space to mourn all the things I used to be able to do

#spoonie #SpoonieLife

#disabled #ChronicallyIll #ChronicIllness #InvisibleIllness #FibroWarrior #ChronicFatigue #CFS

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees — Matthias Tack et al. "our study found an incidence of at least 11.8% (CI 95% 7.8–16.8) for PCS with fatigue and 3.2% (CI 95% 1.3–6.4) for post-COVID-19 ME/CFS in HEs 21 months after the first SARS-CoV-2 infection."

From Germany:

Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees

www.mdpi.com/1648-9144/62...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

George and his ME/CFS 3-panel cartoon 1st panel: George: it's my ME/CFS… I'm having a really bad day 2nd panel: woman to George: any idea what caused this setback? 3rd panel: George: I've narrowed it down to something I haven't taken (in the background are lots of boxes of different prescriptions)

6/
More from a series of comic strips about life as a person with ME/CFS.

"George and His ME/CFS"

🎨Rick Menard

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al. "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."

5/

Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients?

www1.racgp.org.au/ajgp/2026/ma...

Screenshot from Science for ME weekly update

#MEcfs #CFS

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

10/

“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.”

#MEcfs #CFS #PwME #CFSME

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

1 day ago

From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme

2/2

Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund

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

Irish ME/CFS Association

@irishmecfsassoc.bsky.social

1 day ago

Photo of Vera and Tom Kindlon

Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.

Will be very useful as there has been relatively little fundraising for us in recent times

In photo: Vera Kindlon & @tomkindlon.bsky.social

Longer message in next post

#MEcfs #CFS #MyalgicE #PwME

1/2

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

9/
“(Contd) Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease.”

You would think doctors shouldn’t be spouting unevidenced rubbish in a court room like this!

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

8/

Nav’s consulting physician “said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. (contd)”

#MEcfs #PwME #CFS

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

7/
Nav’s consulting physician “talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

11/

“And yes, they’re often unglamorous. A chair. A timer. A routine that looks boring on paper. But boring, in this context, can be a gift. Predictability can be a form of care. Ease is a strategy.

Small changes are how capacity returns. (contd)”

#mecfs #longcovid #pwme #cfs

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

6/
Nav’s consulting physician, Ingvild Damskog: “believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

10/

“That can be uncomfortable. Sometimes it brushes up against grief. Sometimes it requires renegotiating old beliefs about strength and resilience and what “trying hard enough” is supposed to look like.”

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

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

5/

Nav’s consulting physician: “believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment).”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

9/
“Saving energy isn’t about doing less with your life. It’s about creating the conditions where life can actually happen. Where your body isn’t spending everything it has just to keep up with unnecessary demands & where participation doesn’t require a crash afterward.”
#MEcfs #PwME #CFSME #CFS

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

4/

NAV’s lawyer:
“(Contd) People who believe in the biomedical model are just waiting for a pill, he claimed, & they are not open to other approaches, or motivated to try. “If they continue as they are now, he will never recover!”

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

3/
“(Contd) (according to the lawyer, a view shared only by a small, peculiar group, and contrary to “general opinion”), which meant that they did not seek documented effective treatment* in the public health system”

*Comment: rehab/CBT/GET approaches are not evidence-based

#MEcfs #CFS #PwME

New London Boy 🏳️‍🌈🏳️‍⚧️

@newlondonboy.bsky.social

1 day ago

a man is sitting in a chair with a bowl of popcorn in his lap . Alt: a man is sitting in a chair with a bowl of popcorn in his lap .

Sorry to hear that buddy. I'm not feeling great either. Hope the fatigue eases for you. 🫂
#CFS #pwME