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“(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
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
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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
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
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“(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
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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
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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
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“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
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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
A good explanation for anyone who’s been wondering what PEM is when mentioned by people with MECFS #PwME (and crashes)
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“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
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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
"You should think of your energy as if it's a luxury item. Not everyone can afford it." Credit: @femalequotient Image of Taylor Swift on a podcast #pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise
"You should think of your energy as if it's a luxury item.
Not everyone can afford it."
Credit: @femalequotient
Image of Taylor Swift on a podcast
#pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise
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“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
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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
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“(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
Sorry to hear that buddy. I'm not feeling great either. Hope the fatigue eases for you. 🫂
#CFS #pwME
Had another rough night with a lot of pain, so I slept until 11 am CET.
Now having my coffee while watching Gardeners' World from last night. So soothing.
#chronicillness #chronicpain #mecfs #fibromyalgia #arthritis #spoonielife #pwme
What we cannot afford - from my ME/CFS photo project
glass.photo/andrewgiffor...
ALT: Colour photo of a Queen Elizabeth mug stacked with used teabags
#Photography #MECFS #pwME #LongCovid #NHS #Welfare #Billionaires #Inequality
A palm with a lot of tablets
✅ Melatonin
✅ Antidepressant working on melatonin receptor
✅ Seroquel
✅ Antidepressants for myalgia
Optional Benzo for the over exertion days!Still sleep is nowhere to be found!I might have judged the alcohol and drug addicts in my family a little too much to end up exactly like them #pwme
Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical and metabolomic data — Li et al. UK Biobank data, with self-reported diagnosis. "Our analysis reveals that total protein (TP), vitamin D (VD), total bilirubin (TBIL), urea, and alkaline phosphatase (ALP) are the five biomarkers with the highest contribution to the prediction of CFS risk."
Pipeline-optimized machine learning for chronic fatigue syndrome diagnosis: A lightweight, interpretable model using blood biochemical & metabolomic data
www.sciencedirect.com/science/arti...
Screenshot from Science for ME update
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Some people with Long COVID and ME have found SGB to be helpful while others have found no effect or a worsening of symptoms. Dr Zeest Khan, an anesthesiologist and Long COVID patient/advocate, has posted a very helpful video that covers the procedure, how it works, what symptoms may be improved, the side effects and risks, and her own personal experience with SGB. She also recorded a podcast about SGB. Both can be found on Dr. Khan's website.
Stellate Ganglion Block (SGB)
longcovidmd.com/videos
Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...
Comment from Tom: I haven't looked at this video or listen to the podcast myself so far.
#LongCovid #MEcfs #CFS #PwME
Long COVID and ME/CFS on the Front Page of the Boston Globe The Boston Globe ran an excellent front-page story by Felice Freyer about Samantha Crausman of Rehoboth MA, who has severe Long COVID and ME/CFS. The article quotes Lucinda Bateman of the Bateman Horne Center and Amy Proal of PolyBio Research. We're sure any reader of this newsletter will identify with this quote from Samantha's physician father, Dr. Rob Crausman: "If I have one more person tell me that she just needs to do yoga, I will lose my mind." Please Note: The article is behind a paywall for Boston Globe digital subscribers only, but we felt it was important to include for ME/CFS awarenerss.
Long COVID and ME/CFS on the Front Page of the Boston Globe
www.bostonglobe.com/2026/02/20/m...
Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...
#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
George and his ME/CFS 3-panel cartoon 1st panel: George puts on his fitbit and has this thought bubble: "ahh… The fit bit my doctor recommended! This should help me avoid postexertional malaise". In the background you see a postal delivery person walking back to their van 2nd panel: next morning… We see George getting out of bed in his pyjamas with this thought bubble "it's set to beep when my heart rate reaches 110… When I need to stop and rest…" 3rd panel: George is still in his bedroom and his pyjamas but now standing up and is fitbit peeps 3 times
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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
Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM Friday, March 27 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Photo of Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, March 27
Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...
Carers/parents/similar welcome.
#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Crashed hard, been gone weeks. Severe post-exertional malaise. Not resting by choice, resting because the alternative is worse. “Why I Can’t Just Meet You for Dinner” explains the economics of it.
#PEM #LongCOVID #MECFS #PwME
substack.com/@darthfoo/p-...
Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” 2 Comments / By David Tuller / 13 March 2026 By David Tuller, DrPH A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic.
Very sad to read of this 23-year-old with severe ME, ill since age 4.
Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️
An example of the problem biopsychosocial models for ME/CFS cause.
virology.ws/2026/03/13/t...
#MEcfs #PwME #CFS #SevereME
The BPS model of M.E. did not arise from scientific evidence. It emerged from a convergence of:
medical uncertainty - due to deliberate lack of funding for biomedical #ME research, institutional power, economic incentives & historical biases about women’s illness.
#pwME
Oh well... It's just another day that sucks big time
#chronicillness #chronicpain #mecfs #fibromyalgia #spoonielife #pwme #lowmood
Printable “Critical Needs” communication cards. The sheet includes illustrated cards labeled Food, Hydration, Medicine, Toilet, Bathe, Brush Teeth, Fresh Clothes, Hygiene Wipes, and Change Sheets, plus two blank cards.
Printable “Symptoms & Sensitivities” communication cards. Illustrated cards labeled I Can’t Speak, I Can’t Think, I Am Hot, I Am Cold/Chills, In Pain, Nausea, Cramps, Touch Sensitivity, Sound Sensitivity, Light Sensitivity, and Smell Sensitivity.
Printable “Comfort” cards with icons for Do Not Disturb, TV Remote, Phone/Computer/Tablet, Decide For Me, hot pack, cold pack, pillows, blanket, wash cloth, and eye mask
nine labeled icons: Severe Reaction (911), Call Doctor, Emergency Room, Can't Eat/Drink, Can't Sit Up, Can't Move Body, Can't Swallow, Difficulty Breathing, and Chest Pain. Two blank cards are included for custom use.
From the OMF-supported MERC with @BatemanHorne: During a crash, #pwME may struggle to think or communicate clearly. Communication cards help patients point to needs like water, pain, light sensitivity, or emergencies.
Find these cards in our Crash Survival Guide: https://bit.ly/44MgSS9
