Nick Mark, MD @nick

88 posts45 participants3 posts today

**MEActNOW** @MEActNOW@mastodon.social · 31m *

Promising research (preprint) that "proves" that there is damage to the brainstem cerebellum "bridge"!
Study included bedbound patients!
#LongCovid #MECFS

https://www.thailandmedical.news/news/breaking-long-covid-individuals-found-to-have-a-disruption-in-the-critical-brain-bridge-linking-the-brainstem-and-cerebellum

BREAKING! Long COVID individuals found to have a disruption in the critical brain bridge linking the brainstem and cerebellum - Thailand Medical News · 2dBREAKING! Long COVID individuals found to have a disruption in the critical brain bridge linking the brainstem and cerebellumBy Thailand Medical News

**Broadwaybabyto** @broadwaybabyto@zeroes.ca · 4h

Broadwaybabyto @broadwaybabyto@zeroes.ca

This is the longest I’ve ever gone without publishing an article, and the stress of not having anything ready is weighing heavy on my heart

It’s ironic considering how often I write about the importance of resting and listening to your body when it needs a break.

I’m so grateful for the Disabled Ginger community, but my body and brain clearly need a break.

I sit down to write everyday, and so far all I have is 30+ drafts with titles, a few images and (at best) two lines of actual content.

This is the harsh reality of chronic illness. It doesn’t matter how much you WANT to do something… if your body says “No”… Its a No.

You can’t try harder your way out of it. You can’t play through the pain.

The more you try to fight your body, the harder and longer the crash.

If you’re struggling to rest right now, take this as a sign to unplug. Relax. Recharge. Give your body what it’s crying out for and do it without the guilt.

We will all be here for you when you’re ready.

Sharing my article on radical rest from the archives, because I need the reminder & maybe so does someone else:

https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda

The Disabled Ginger · Nov 26, 2024It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical RestBy Broadwaybabyto

#chronicillness #disability #selfcare

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

One month to go to International ME/CFS Awareness Day (May 12)

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Are You Ready?
MAY 12th
Raise Awareness Only 1 Month To Go

**Tom Kindlon** @tomkindlon@disabled.social · 10h

10h

Tom Kindlon @tomkindlon@disabled.social

"Suzanne O’Sullivan’s “Psychosomatic” Mis-Diagnoses" by Dr David Tuller @david

https://virology.ws/2025/04/10/trial-by-error-suzanne-osullivans-psychosomatic-mis-diagnoses/

People can support David's work here:
https://crowdfund.berkeley.edu/project/46120

#LongCovid #chronicillness @chronicillness
@spoonies
@longcovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial By Error: Suzanne O’Sullivan’s “Psychosomatic” Mis-Diagnoses
8 Comments / By David Tuller / 10 April 2025
By David Tuller, DrPH

*This is a crowdfunding month at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120

Neurologist Suzanne O’Sullivan has been conducting a media blitz for her new book, “The Age of Diagnosis: How Our Obsession with Medical Labels Is Making Us Sicker.” The Guardian ran a lengthy excerpt in early March. O’Sullivan appeared on the popular podcast Freakonomics. Multiple publications have published profiles of her, with credulous assessments of her work.

O’Sullivan has long been a major promotor of psycho-behavioral explanations for complex illnesses. Her previous books in this vein–including It’s All in Your Head: True Stories of Imaginary Illness, and The Sleeping Beauties: And Other Stories of Mystery Illness—were bestsellers. In the SARS-CoV-2 era, it should not be surprising that she has now scooped up Long Covid and incorporated it into her expansive worldview. “As no one saw doctors during the pandemic, it’s inescapable that the period was a melting pot for psychosomatic conditions,” she explained in one recent interview.

**Tom Kindlon** @tomkindlon@disabled.social · 11h

11h

Tom Kindlon @tomkindlon@disabled.social

"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/

Image is from April 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC @chronicillness
@spoonies
@disability
@disabilityjustice
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
"Those of us who are so severely disabled by ME and Long COVID that we are rarely able to leave our houses — or even our beds — suffer from an invisibility so total, most people are completely unaware of our
existence. We may not have strength in our bodies, but we certainly have
strength in numbers… We don’t have to be passive, when we are this
massive"

Continued thread

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 12h

12h

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

5/
"Orthostatic Intolerance Overview" (page 1 of 2)

https://onedrive.live.com/?authkey=%21AGyjrENR0e9TEoc&cid=94454629DB95DF81&id=94454629DB95DF81%211421619&parId=94454629DB95DF81%21105&o=OneUp

One of the fact sheets we sent to 3612 Irish GPs recently

#OrthostaticIntolerance #MEcfs
@mecfs

Bateman Horne Center

Orthostatic Intolerance Overview
Orthostatic Intolerance (OI) is characterized by symptoms of autonomic dysfunction triggered by or worsened by upright positioning and improved in supine positioning. Several conditions fall under this broad term, including but not limited to postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, orthostatic hypotension, and inappropriate sinus tachycardia.
Evaluation often includes the following:
- Passive standing (NASA Lean) test
- Electrocardiogram (EKG)
- Echocardiogram
- Event monitor
- Complete blood count (CBC)
- Electrolyte levels
- Thyroid function tests
- Morning cortisol levels (AM cortisol)
- Adrenocorticotropic hormone (ACTH) levels
- Comprehensive history and a thorough physical examination
You may consider a referral to cardiology or autonomic neurology (if available) based on the severity of a patient’s symptoms or consult occupational therapy (OT) to recommend restorative or adaptive therapy to help improve quality of life.
Non-Pharmacological Treatment
o
Salt supplementation: 7 to 10 grams (2.8 to 4 milligrams of sodium) per day. Caution is advised in patients with heart failure, renal dysfunction, and older patients.
o
Increased water consumption: At least 3 liters per day, ideally combined with salt intake.
o
Waist-high lower body compression garments and/or abdominal binders (20-40 mm Hg), worn during the day and removed at night.
o

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 12h

12h

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

Informal notes of Tom Kindlon @tomkindlon (an Irish ME/CFS Association trustee) on a Community Law & Mediation webinar, “Housing supports for people with disabilities”, organised by the Irish ME Trust in April 2025

https://1drv.ms/b/s!AoHfldspRkWU14Fk8PxsH7FEHN1k3w?e=MvdxKH

#chronicillness #Disabled #Disability @chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Community Law & Mediation
Access to Social Housing Supports - Law and Rights
3 April 2025
Mary Heavey - Solicitor

Image of some law books

**Mx. Luna Corbden** @corbden@defcon.social · 13h

13h

Mx. Luna Corbden @corbden@defcon.social

The side effect of feeling much better and my brain capable of engaging again is hyper-ADHD activity. Hence all the jokes, sidetracked posts and TMI replies on here, long comments on YouTube, and I can't even remember what else I've spun my wheels on today instead of what I need to do. Distracted energies all over the place.

This is good, and it's ok to indulge, but also I have specific work to do and finally the energy to do it! If only I can focus.

#Recovery2025 #MECFS #ADHD

**Dr Ro Smith** @Rhube@wandering.shop · 14h *

14h *

Dr Ro Smith @Rhube@wandering.shop

I still can't believe how sick I have become over the last 13 years. There's just so much loss. #NEISvoid #MECFS

**Tom Kindlon** @tomkindlon@disabled.social · 16h

16h

Tom Kindlon @tomkindlon@disabled.social

From ME Support NI

Dr. Charles Shepherd, Honorary Medical Adviser to the ME Association. Dr. Shepherd will be discussing the latest developments in the world of M.E., ME/CFS, Post-Viral Fatigue Syndromes, and Long Covid.

He will also be answering questions from attendees.

To register:
https://forms.office.com/e/DwdgCeAu4N

#mecfs @mecfs #longcovid @longcovid