#MECFS-Special
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tomkindlon.bsky.social
Brigitte, a mainstream German women's magazine, has published a special edition about #MECFS

drvjdg.clicks.mlsend.com/ty/cl/eyJ2Ij...

Google translation
www-brigitte-de.translate.goog/gesund/mecfs...

Screenshot from @chronicliving123.bsky.social newsletter

#CFS #PwME @lammasleaves.bsky.social
'Brigitte' Magazine (German) German women's magazine, Brigitte, a mainstream publication with a large circulation, has published a special edition about ME/CFS. I've not read it all yet, but by all accounts it's well-informed about the history of, and biomedical research into, the condition. Interviews and feature articles with patients, carers, doctors and researchers explain the condition and the impact it can have. Most interesting to therapists is an in-depth interview with renowned ME advocate and psychotherapist, Dr Bettina Grande, who explains how therapy can (and how it can't) help people with ME/CFS. *** You have to allow adverts to read the magazine for free. You may be able to have your browser translate the text. Alternatively, you could copy and paste it into 'google translate' or similar, to read it in your own language.
January 31, 2026 at 1:42 AM
medocspsytheras.bsky.social
Zwei unserer Mitglieder werden im aktuellen #MECFS-Special der @brigitteonline portraitiert.

@mimi139.bsky.social berichtet als erkrankte Ärztin von ihrem Weg, der trotz hilfreicher Behandlungen weiterhin schwere Krankheit bedeutet, die ihre sehr Kinder belastet.
1/2
www.brigitte.de/gesund/gesun...
"Mein Privileg ist, dass ich als Medizinerin mit ME/CFS wenigstens ernst genommen wurde"
Sie hat nur vier Stunden am Tag, die sie nicht im Bett liegend verbringen muss. Eine dieser kostbaren Stunden schenkt uns die an ME/CFS erkrankte Ärztin Mirja, um ihre Geschichte zu erzählen.
www.brigitte.de
January 29, 2026 at 2:38 PM
bettinagrande.bsky.social
Vielen Dank an das „Brigitte“-Magazin für dieses wichtige ME/CFS-Special.
Besonderer Dank an Andrea Berning für eine sorgfältige, verantwortungsvolle und differenzierte journalistische Arbeit, die die Realität von
#MECFS #PEM sichtbar macht und dazu beiträgt,
den öffentlichen Diskurs zu verändern.
ME/CFS: Ein Leben im Dunkeln
Frauen erkranken dreimal häufiger an ME/CFS als Männer. Wie sieht ein Leben mit der Erkrankung aus? BRIGITTE hat mit Betroffenen, Angehörigen und Experten gesprochen.
www.brigitte.de
January 28, 2026 at 8:48 PM
chronicloaf.bsky.social
We are watching two more Stephen King films tonight in the #ChronicLoaf stream, #Sleepwalkers and #Dreamcatchers

But first the weekly Josh Johnson special

Hop in and relax with us tonight @ mzelo.com/app/rooms/ch...

#NEISvoid #ForTInu #horror #CannabisCommunity #mecfs #DisCo
January 28, 2026 at 2:30 AM
chronicloaf.bsky.social
We're watching a couple of our favorite comedians new stand up special series, #BaldBrothersAFreestyleComedyShow, in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#neisvoid #mecfs #DisCo #ForTinu #comedy #ForTinu #cannabiscommunity
January 19, 2026 at 8:20 PM
tomkindlon.bsky.social
2/
Journal Published Confusing Section on "Enduring Symptoms" by David Tuller

virology.ws/2025/12/31/t...

Screenshot from latest Science for ME weekly update

#chronicillness #MEcfs
Trial by Error by David Tuller Journal Published Confusing Section on "Enduring Symptoms" "As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination."
January 6, 2026 at 1:30 AM
tomkindlon.bsky.social
New:

Extract by @kacheston.bsky.social from: "Journal Publishes Confusing Section on “Enduring Symptoms” by @davetuller1.bsky.social which mainly focuses on critiquing the discussion between 2 UK biopsychosocial proponents

virology.ws/2025/12/31/t...

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
The same special section includes some important counter-programming to the biopsychosocial narrative–a piece called “A patient perspective on enduring symptoms – the unmet need.” The author, Katharine Cheston, a post-doctoral fellow in medical humanities at the University of Durham, provides a sharp and welcome dose of reality for readers unaware of the hell patients can go through. Here’s an excerpt: “Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms…The sheer magnitude of the unmet needs is devastating: this population live with disabling and life-limiting symptoms, yet they feel alone and abandoned, receiving little to no institutional support, care or recognition of their suffering.”
December 31, 2025 at 2:32 PM
tomkindlon.bsky.social
. @batemanhornecenter.bsky.social's "'Coffee'" with a Clinician: Pacing for Holidays & Special Events"

www.youtube.com/watch?v=BNZ5...

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

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

Haven't watched but slides seem sensible

#LongCovid #MEcfs #PwME
"Coffee" with a Clinician: Pacing for Holidays and Special Events Bateman Horne Center 16k subscribers Subscribe 14 Share Save Clip 244 views 17 Dec 2025 Holidays and special events can be especially challenging for people living with ME/CFS, Long COVID, and other infection-associated chronic conditions. In this December "Coffee" with a Clinician session, occupational therapist Amy Mooney, OTR/L, and physical therapist Melinda Maxwell, PT, DPT, share practical, compassionate strategies for navigating these moments while protecting your health. This conversation explores how pacing, planning, and prioritizing can help reduce post-exertional malaise (PEM) and support meaningful participation, whether that means attending part of an event, connecting briefly with loved ones, or finding alternative ways to stay engaged. In this session, we discuss: • Why holidays and special events increase physical, cognitive, sensory, and emotional exertion • Breaking events into manageable pieces and identifying your “golden nugget” • Planning rest as a therapeutic, non-negotiable intervention • Recognizing early signs of pushing beyond your energy envelope • Communicating boundaries and needs with family, friends, and providers • Coping with grief, loss, isolation, and emotional exertion during the holidays • Strategies for rest, regulation, and recovery before, during, and after events This session is part of the Bateman Horne Center’s "Coffee" with a Clinician series, designed to provide education, validation, and practical tools for patients, caregivers, and clinicians. ⚠️ Disclaimer: This presentation is for educational purposes only and does not constitute medical advice. Learn more about Bateman Horne Center: https://batemanhornecenter.org 💙 Support "Coffee" with a Clinician: https://givebutter.com/Coffeewithclin... Presentation Slides: https://batemanhornecenter.org/wp-con... Transcript: https://batemanhornecenter.org/wp-con...
December 27, 2025 at 3:29 PM
lisalindeman.bsky.social
We've declared this Christmas week because I didn't spend all my last energy tokens (i.e. spoons) decorating the house, jacked up on special-occasion prednisone, to turn right around and undo it.
#chronicillness #mecfs #longcovid
December 27, 2025 at 12:56 AM
batemanhornecenter.bsky.social
The holidays can be challenging when energy is limited.

Join us Dec 10 at 10:00 am MST for “Coffee” with a Clinician as we explore practical pacing strategies for holidays and special events 💙

🔗 Register: https://bit.ly/4npZ4Ud
#MECFS #LongCOVID #IACCs #Pacing
"Coffee with a Clinician" online event on Dec 10, 2025, at 10:00 am MST, focusing on pacing for holidays and special events. Register at batemanhornecenter.org/events.
December 9, 2025 at 7:30 PM
exceedhergrasp1.bsky.social
...of the presumption that gradually increasing exercise is a rehabilitative for people with infection-associated chronic conditions like #MECFS and #LongCOVID.

The idea of graded exercise as a special therapy your doctor has to help you carry out is absurd.
November 21, 2025 at 3:56 PM
healthylabyrinth.bsky.social
There's a special place in hell for pip assessors who are liars and cruel
#fibromyalgia #mecfs #invisibleillness
November 16, 2025 at 9:56 PM
tomkindlon.bsky.social
"Systematic literature review: treatment of postural orthostatic tachycardia syndrome (POTS)" ["with a special focus on POTS therapy in children and people with ME/CFS."]

Free fulltext:
link.springer.com/article/10.1...

#POTS #MEcfs
Abstract Postural orthostatic tachycardia syndrome (POTS) is a condition defined by symptoms of orthostatic intolerance and a sustained heart rate (HR) increment of ≥ 30 beats per minute (bpm) upon postural change to the upright position in the absence of orthostatic hypotension, defined as a sustained decrease in systolic blood pressure (SBP) of ≥ 20 mmHg or a decrease in diastolic blood pressure (DBP) of ≥ 10 mmHg within 3 min of standing. In children, a sustained HR increment of at least 40 bpm is required for diagnosis of POTS. POTS is a common condition in adults and children suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In daily clinical practice, therapeutic recommendations are rare and evidence is missing. The objective of this review is to present the current knowledge on non-pharmacological and pharmacological approaches in POTS with a special focus on POTS therapy in children and people with ME/CFS. Of 3853 studies, 45 studies were included in the systematic review. Evidence on therapy in POTS is rare and large randomized controlled trials (RCT) on single interventions are needed. Non-pharmacological approaches such as the use of compression garments, physical training, salt supplementation and transdermal vagal nerve stimulation could be possible treatment options in POTS because they are easy to implement as first-line therapeutic measures in clinical practice. For pharmaceuticals, several studies showed significant effects following therapy with ivabradine and β-adrenergic blocking agents. There are single studies which imply that midodrine (hydrochloride) and pyridostigmine seem to have a beneficial effect on hemodynamics in POTS.
November 15, 2025 at 11:16 PM
bi-ta.bsky.social
Thank you @tomkindlon.bsky.social for sharing our article. This was such an emotional work to do and I poured every bit of my heart in there for this amazing community of #MECFS. Special thanks to those with #severeME whose experiences we have had the privilege of reflecting.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Nov 11
🧵
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

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

"Severe ME/CFS patients face deep social, medical, and structural exclusion."

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

1/
Highlights • Severe ME/CFS patients face deep social, medical, and structural exclusion. • Delegitimation of illness leads to isolation, distress, and denied support. • Gendered stigma shapes how women's pain is dismissed in health care. • Twitter (now X) offers access to the voices of an otherwise unreachable patient group. • This study urges reforms in care, disability access, and illness recognition.
November 12, 2025 at 12:33 AM
germainehypher.bsky.social
See that gorgeous smile, there? That’s recent birthday girl @annakwood.bsky.social having just opened the 🎁 I made for her big birthday: a cushion inspired by Rennie Macintosh, upcycled from purple fabric I had saved for special use.
#sewing #upcycling #charlesrenniemackintosh #chronicillness #MECFS
A white woman with a big smile and long curly hair is sitting on a sofa holding a cushion in tones of purple. The main fabric of the cushion is a heather coloured herringbone tweedy fabric. On this is an appliquéd design, in purple satin and black cord, inspired by Charles Rennie Macintosh’s Glasgow Rose stained glass piece.
November 11, 2025 at 1:57 PM
rippermd41.bsky.social
My husband is so sweet but #MECFS is ruining it 😭

He went to the special gluten free bakery and got me their really good gf bagels.

But my jaw muscles fatigue so quickly during PEM and bagels take a lot of chewing 😩
October 30, 2025 at 7:54 PM
tomkindlon.bsky.social
The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition."

www.mdpi.com/journal/ijms...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS
Special Issue The International Journal of Molecular Sciences is organizing a special issue on ME/CFS called "Molecular Pathologies and Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—2nd Edition." Guest Editor is Prof. Dr. Elisa Oltra. The deadline for submissions is 31 March 2026
October 6, 2025 at 12:53 AM
tomkindlon.bsky.social
Australia: RACGP Special Interest Group: New network to support ‘often misunderstood’ conditions

www1.racgp.org.au/newsgp/racgp...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #Fibromyalgia #POTS
Australia RACGP Special Interest Group: New network to support ‘often misunderstood’ conditions "Associate Professor Shiu said the new group was created to address a growing need in primary care. ‘Conditions such as ME/CFS, long COVID, POTS, and fibromyalgia are increasingly presenting in general practice, yet many GPs feel under-resourced and isolated in managing them,’ he said."
October 6, 2025 at 12:40 AM
newlondonboy.bsky.social
Happy Birthday Kirsty 🎂 I'm sorry it's a rough one for you due to #MECFS. Illness doesn't respect special days 😞You're not alone 🫂 The gif is how I generally feel about my Birthday!
an elderly woman is wearing a clown hat and a blue jacket
Alt: Dorothy,from the Golden Girls, is being forced to wear a clown hat & is looking pissed off.
media.tenor.com
October 1, 2025 at 12:50 PM
leahmcelrath.bsky.social
Bonnie sends special boops to others with MECFS 🥰
September 28, 2025 at 2:19 AM
meassociation.org.uk
Kara Jane's fundraising concert is tomorrow - and you're invited!

Come along to a special fundraising event being held in memory of local singer-songwriter Kara Jane Spencer by her family.

20th Sept, 7:30pm
Speedwell Rooms Staveley
Tickets £20

Get your ticket: https://tinyurl.com/yacbnwk8

#MECFS
IMAGE DESCRIPTION: Photos of the album covers for In Limbo and It's Still Me, by Kara Jane. Heading - Kara Jane Fundraising Concert this Saturday - You’re invited! 20th Sept, 6:30pm, Staveley
September 19, 2025 at 1:31 PM
meassociation.org.uk
Come along to a special fundraising event being held in memory of local singer-songwriter Kara Jane Spencer by her family!

20th Sept 2025
6:30pm
Speedwell Rooms, Staveley
Tickets £20

Tickets: https://www.ticketebo.co.uk/karajanesingscom/kara-jane-fundraiser

#MECFS #KaraJane #InLimbo #Staveley
IMAGE DESCRIPTION: Photo of a microphone, and of the covers of Kara Jane's two albums. Wording - Kara Jane Fundraising Concert. Live music from Emily Louise & Ladies Local Vocals Choir. Sat 20th Sept, 6:30pm, Staveley. All funds raised for the ME Association Ramsay Research Fund
September 16, 2025 at 10:31 AM
meassociation.org.uk
The Guardian: Special needs overhaul risks becoming ‘welfare reforms mark 2’, IFS finds

"Special needs reforms for children in England could turn into “welfare reforms mark 2” unless the government can convince parents that it is not aiming to save money..."

https://shorturl.at/9Ma3V

#MECFS
Special needs overhaul risks becoming ‘welfare reforms mark 2’, IFS finds
Thinktank says EHCP changes are overdue, but government must convince parents that reforms are not about cost cutting
shorturl.at
September 12, 2025 at 1:16 PM
momazonrises.bsky.social
Having someone like @keithmuise.bsky.social advocating for us feels so damn special. Thank you so much, Keith.

#mecfswarrior #autonomicneuropathy #spoonie #LongCovid #Dysautonomia #mecfs #chronicillness #invisibledisability #invisibleillness #CovidIsReal
September 10, 2025 at 6:56 PM