Tom Kindlon

But we do this weird selective amnesia thing. We forget that all of us use tools that make life easier, we just don’t moralize some of them. Take eyeglasses and contacts. No one judges when someone puts on glasses. No one hears, “Have you tried harder first?” when they buy their first pair of readers. We don’t moralize ergonomic desk chairs, or the pillow that keeps your neck from locking at night, or even the dishwasher that saves your wrists from repetitive strain. So why is a rollator loaded with stigma and a standing desk not? Why is a shower chair framed as a tragedy, while a jar opener is just “handy”? We accept some supports without flinching, because everyone uses them. We reject others because we’ve agreed, without ever speaking it aloud, that those tools signal weakness. This is bias. Straight up. Bias stitched into the seams of everyday language until it becomes the air people breathe.

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From: "The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

onelifelivedwell.substack.com/p/the-quiet-...

#chronicillness #Spoonie

Support A Walk For M.E. on iDonate.ie A Walk For M.E. for Irish ME/CFS Association, created by Lee Colligan | iDonate.ie

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Irish ME/CFS Association: Thanks very much to Lee. There has been relatively little fundraising for the Association in recent times apart from his marathon efforts so we are hoping people will get behind him again

Lee Colligan’s fundraising page for us
www.idonate.ie/fundraiser/L...

Repost of @a_walk_for_m.e on IG:

It’s that time of year again.
March 14th will always mean something to me. It’s Josh’s birthday.
This year I’m climbing the height of Mount Everest in my local gym to honour him and raise funds for those living with M.E.

#MEcfs #CFS #PwME
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Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Feb. 23 - Mar. 1:

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

www.s4me.info/threads/news...

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...

All welcome to comment and make suggestions before the document before it is finalised.

Great interview

#me
#longcovid

Our paper on Symptom Patterns, Recovery, and Impact of
#LongCovid is now published. This is follow up data over 1 yr. Note how the pattern of symptoms changes over time with most starting out as fluctuating pattern and more ending up with a constant symptom pattern.
academic.oup.com/ofid/article...

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.

The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

The ME Association - Governance Review Update and Organisational Structure: February 2026   - The ME Association Our New Operating Structure We're pleased to share the final details […]

We're pleased to share the final details of MEA's new operating structure. This update builds on the feedback provided during an internal consultation period and reflects our commitment to creating a sustainable, effective organisation that delivers on our mission.

News Medical: Study identifies antiviral protein IFN-γ as a potential biomarker for Long COVID fatigue - The ME Association A study, led by The University of Cambridge, has identified […]

News Medical: Study identifies antiviral protein IFN-γ as a potential biomarker for Long COVID fatigue 

Read more: https://meassociation.org.uk/vpow

#LongCovid #LongCovidResearch #PostCovidSyndrome

Graphic from Action for ME promoting the next free online Mindfulness workshop for adult with ME & carers. This takes place on Friday 27 March 2026 at 12.30pm. Top half of graphic features a photo of several daffodils in bloom. Action for ME logo in top left corner.

Join our free online Mindfulness session for adults with ME & carers.

📆 Fri 27 Mar 12.30pm, via Zoom

The session is designed for people with ME & is led by volunteer Alice, a qualified mindfulness meditation teacher, & supported by a staff member.

To attend email avril.mclean@actionforme.org.uk

"Though little consistency in specific genes was observed across studies, which highlights the need for larger studies, mitochondrial dysfunction in ME/CFS cases was evident across studies." INFORM. INFLUENCE. INVEST.

From ME Research UK:

New evidence of mitochondrial dysfunction across different ME/CFS study populations.

Find out more: bit.ly/46UrRKe

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Image of lots of little envelopes flying away from a hand

This month's ME Research UK e-newsletter has been sent to supporters and is also available on our website - tinyurl.com/55ychead. Signing-up is easy - tinyurl.com/3pakcek2

#MEcfs #CFS #PwME

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‪“Hundreds attend Dublin protest for disability emergency payment: Organisers say last year’s budget left people with disabilities up to €1,400 worse off annually”‬

‪https://www.irishtimes.com/ireland/2026/02/28/hundreds-attend-dublin-protest-for-disability-emergency-payment/‬

‪#disability‬

Around 400 people attend disability rights protest Up to 400 people have attended a protest in Dublin on the cost of disability.

(Not ME-specific)
“Around 400 people attend disability rights protest in Dublin”

At the bottom is the video clip that was on the 9 o’clock RTE One news last night
www.rte.ie/news/2026/02...

#disabled #disability

Binita KaneBinita Kane • 1stVerified • 1st Consultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGEConsultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGE 2h • 2 hours ago • Visible to anyone on or off LinkedIn Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe Long COVID and Myalgic Encephalomyelitis (ME). Despite hundreds of thousands affected, to this day, there are no commissioned NHS services for those at the severe end of the spectrum - though patient advocates, charities and some MPs are working hard to change this. The transition to the independent sector was never in my life plan - it happened organically. I am very grateful to HLTH Compliance for inviting me onto their podcast to share my journey and experiences of setting up the clinic, which emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. My most severe patients are bedbound, tube-fed, have 24/7 full-time care and no regular NHS support outside of their GP (+ possibly a dietician). Here I talk about how it happened, my road to getting independent CQC registration, as well as the broader challenges of treating Long COVID and ME. Long Covid Kids Long Covid Support Karen Hargrave Action for ME Solve ME/CFS Initiative ME Association ME Research UK https://lnkd.in/esKihrD6 Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

I haven't watched this myself so far but have been generally impressed with media interviews Dr. Binita Kane @binitakane.bsky.social has done

www.youtube.com/watch?v=pk00...

#LongCovid #MEcfs

Caregiver Wisdom: Caregivers as Catalysts for Change
Sunday, March 1, 12–1 p.m. PST
Solve ME Advocacy Director Monique Wike and MEAction Advocacy Manager Terese Russo discuss caregivers’ role in education, research, and policy.
Contact: kim@caregiverwisdom.net

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"assistive devices, adaptive equipment, whatever term you prefer, they’re not evidence of decline. They’re evidence of a body trying, and of a person choosing to keep living on their own terms."

#Spoonies #ChronicallyIll #Disabled #Disability
#Chronicillnessblogger #Chronicillnessquotes

Great post (shame it's on Substack). Comparing the "handy tools" accepted by all - glasses, jar openers, to the mobility aids seen as signs of weakness or failure.

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, and meaning under any circumstances"

From:
Recap: Coping with Depression & Emotional Overload
batemanhornecenter.org/wp-content/u...

The Quiet Art of Extending a Life Notes on Assistive Tools, Capacity, and the Dignity of Support Abby Dec 08, 2025 I’ve been thinking about how we talk about tools. Not the glamorous ones. Not the sleek productivity gadgets or the little conveniences that show up in TikTok hauls with crisp lighting and a soft keyboard soundtrack. I mean the other things. The everyday objects that help a person move, bathe, reach, carry, listen, exist. The devices people hide in closets or delay buying or apologize for needing. And how strange is it that something as simple as a piece of aluminum with wheels can hold so much cultural weight? It’s almost comical, except it isn’t funny at all. Maybe it’s the therapist in me, or maybe it’s just being around enough real bodies in real worlds, but I’ve come to believe we misunderstand these objects completely. We’ve wrapped them in the wrong story. And the story matters, because stories become the container we place our lives inside. The story we’ve inherited, often without noticing, is about “pushing through” and “making do.” It’s a story that whispers (sometimes shouts) that the harder route is the morally superior one. I don’t buy it. Because here’s the thing: assistive devices, adaptive equipment, whatever term you prefer, they’re not evidence of decline. They’re evidence of a body trying, and of a person choosing to keep living on their own terms.

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

onelifelivedwell.substack.com/p/the-quiet-...

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders"

#chronicillness #Spoonie

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“Some patients who receive a diagnosis of FND feel dismissed and gaslit. Many go on to find that they really had a serious medical condition, which could be anything from traumatic brain injury to a cerebrospinal fluid leak to ME/CFS or Long Covid.”

#MEcfs #LongCovid

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“(Contd) An FND diagnosis generally means that no further medical investigations will be carried out, and no treatments (other than counseling and physiotherapy) will be offered.”

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“One thing does seem clear: FND is very often used as a way to dismiss a patient’s symptoms as being in some way “not real”. It replaced the old psychosomatic diagnosis of conversion disorder, which in turn, decades before, replaced hysteria. (contd)”

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Comment from my FB page:
“The issue is when doctor #3 diagnoses but another doctor reads it and interprets it as #1 or #2.”

Another reason the diagnosis of FND is best avoided

My partner's fibro has gotten wildly worse since COVID. We get the softest, most seam free clothes, and modify them, and even those are too painful to wear a lot of days.

Do you have any idea how hard it is to go about life when clothes feel like they are burning your skin off?

Recap: “Support Group: Chronic Illness: Facing Limits and Losses (Moving
through Grief)”.

Notes from a Bateman Horne Center @batemanhornecenter.bsky.social support group meeting

batemanhornecenter.org/wp-content/u...

#chronicillness #spoonie #mecfs #longcovid #fibromyalgia #pots

What’s going on with the doctors? Doctors who give FND diagnoses are not all the same. I can think of at least 3 cases. Case 1) The doctor sees FND as a wastebasket diagnosis, something you give out when the patient seems to be lying, exaggerating, a hypochondriac, or when the symptoms seem to be psychosomatic. The doctor doesn’t bother to hide this. The patient probably feels dismissed and gaslit. Case 2) The doctor sees FND as a wastebasket diagnosis, like the doctor in Case 1, but this doctor pretends to believe FND is a real, serious neurological condition in order to appease the patient. The patient probably feels validated. Case 3) Some doctors (I think a minority) treat FND as if it meant “neuro-muscular disorder of unknown cause”*. These doctors don’t hand out FND diagnoses willy-nilly to any patient whose symptoms they don’t understand; they only give it to a much narrower group of patients, patients who have atypical seizures or difficulties with walking or movement which don’t match up to any known neurological condition. I think these doctors are honest, believe patients, and are doing their best to act with integrity. The patient is very likely to feel validated, since in this case the doctor is being sincere, and really believes the patient has a serious neurological condition.

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by @kjohnstone.bsky.social

mecfs.substack.com/p/some-peopl...

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1) This study scanned existing ME/CFS datasets on gene expression and proteomics to look for common genes or patterns. The mitochondrial genes MT-RNR1 and MT-RNR2 had lower expression in ME/CFS cases in two studies.

Unfortunately, the results don't look very robust...

1) Prof Jeroen Den Dunnen won a prestigious Vici grant (€ 1.5M) for his research on antibodies in post-acute infection syndromes such as ME/CFS.

Vici is one of the largest personal scientific grants in the Netherlands. It's the first time it has been awarded to PAIS research.