Nume MacAroon Ⓥ @nm

19 posts12 participants1 post today

**Tom Kindlon** @tomkindlon@disabled.social · 8h

Tom Kindlon @tomkindlon@disabled.social

"Exercise Actually Makes Chronic Fatigue Syndrome Worse"

https://www.youtube.com/watch?v=wxSwYUennBA

Image is from April 2025 AMMES Newsletter

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

Special Feature
Exercise Actually Makes Chronic Fatigue Syndrome Worse
ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome, is way more than being tired at the end of the day. And, contrary to popular advice, exercise is the last thing you'd want to do.

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 21h

21h

Tom Kindlon @tomkindlon@disabled.social

(Worcester, Massachusetts)
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study

Image is from MassME April Newsletter

https://www.massmecfs.org/newsletters/922-2025-04-april-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

RECLAIM Study seeking participants

RECLAIM is still recruiting participants — adults and children aged 12-17 — who self-report with ME/CFS, Long COVID, and other IACCIs.

The Sluss Lab at UMass Chan Medical School is investigating how oxidative stress influences chronic conditions such as Ehlers-Danlos Syndrome (EDS), ME/CFS, and other IACCIs. Adult study participants can expect three 30-minute in-person visits, and child participants will have two in-person visits with the option to join a follow-up study.

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 1d

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.

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 1d

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"

ALT

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 1d

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

ALT

**Gelbschlumpf** @gelbschlumpf@troet.cafe · 2d

Gelbschlumpf @gelbschlumpf@troet.cafe

@OhWeh wenn es denn mal so einfach wäre…

#cfs

**Tom Kindlon** @tomkindlon@disabled.social · 2d

**Tom Kindlon** @tomkindlon@disabled.social · 2d

Tom Kindlon @tomkindlon@disabled.social

"Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards"

Also covers ME/CFS

https://time.com/7206080/long-covid-psychiatric-wards/

Image is from April 2025 AMMES Newsletter

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

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

Photo of Sigmund Freud

With the following text:
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The vast majority of Long COVID patients will not land in psychiatric wards, but Erin is far from the only one who has. “Emergency rooms are dangerous places for people with Long COVID,” says David Putrino, who studies and treats the condition as director of rehabilitation innovation for the Mount Sinai Health System in New York.
Read more here>>

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 2d

Tom Kindlon @tomkindlon@disabled.social

ME/CFS – The Devastating Chronic Disease - With No Cure

Free
https://biomedres.us/fulltexts/BJSTR.MS.ID.009536.php

"Industry respect & legislation support so urgently needed to fund dedicated research for effective treatments & potentially a substantiated cure for the many suffering in silence"

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

ME/CFS – The Devastating Chronic Disease - With No Cure Volume 61- Issue 1
A T Robinson MS MLS ASCP cm*

MS MLS ASCPcm – over 40 yrs laboratory medicine experience as Medical Laboratory Scientist/ Assoc Admin/Educator/Adjunct Professor/ Consultant and now semi retired as Project Mgr at NUMC NuHealth, Long Island, NY & as Clinical Advisor to Medical Laboratory Science universities/colleges & author/speaker as Laboratory Advocate, USA
Received: February 24, 2025; Published: March 18, 2025

*Corresponding author: A T Robinson, MS MLS ASCPcm – over 40 yrs laboratory medicine experience as Medical Laboratory Scientist/ Assoc Admin/Educator/Adjunct Professor/Consultant and now semi retired as Project Mgr at NUMC NuHealth, Long Island, NY & as Clinical Advisor to Medical Laboratory Science universities/colleges & author/speaker as Laboratory Advocate, USA

DOI: 10.26717/BJSTR.2025.61.009536

PDF
ABSTRACT
Go to
The main purpose of this article is primarily to bring much needed media attention and public awareness to the existence of ME/CFS along with Long Covid. Industry respect and legislation support so urgently needed to fund dedicated research for effective treatments and potentially a substantiated cure for the many suffering in silence.

Abbreviations: IM: Infectious Mono; NIH: National Institutes of Health

ALT

**Andy Leader** @andyleader@mastodonapp.uk · 3d

Andy Leader @andyleader@mastodonapp.uk

Me and Luna at Malham Cove. Without the power chair there's no way I could walk to places like this now. So, I'm delighted with it and grateful to be out moving again.Although I have to reign in my enthusiasm. #cfs #me #mecfs

Man in a powered wheelchair wearing a blue coat with a white dog. The background is the white limestone cliff of Malham Cove under a blue sky.

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 3d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

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

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

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 4d

Tom Kindlon @tomkindlon@disabled.social

A Systems-Based Hypothesis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Phosphatidylcholine Deficiency, Insulin Signaling and Noradrenergic Neuron Dysregulation

Image is from latest Science for ME weekly update

https://www.preprints.org/manuscript/202409.1467/v2

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

Preprints.org
A Systems-Based Hypothesis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Phosphatidylcholine Deficiency, Insulin Signaling and Noradrenergic Neuron Dysregulation — Tamara Carnac
"We explore genetic, metabolic, and inflammatory factors that contribute to phosphatidylcholine deficiency and propose a multi-component model of ME/CFS, highlighting the interplay between phosphatidylcholine metabolism, liver dysfunction, neuronal function and inflammatory signaling."

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 4d

Tom Kindlon @tomkindlon@disabled.social

3/
The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS

Image is from latest Science for ME weekly update

https://www.mdpi.com/2075-1729/15/4/584

#MEcfs #CFS
@mecfs

Life
The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS — Vink and Partyka-Vink
"An article by White et al., which is written by 51 researchers, claims that there are eight anomalies in the review process and the interpretation of the evidence by NICE. In this article, we reviewed the evidence they used to support their claims." "Our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and they highlight the absence of evidence for the claims that are made."

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 4d

Tom Kindlon @tomkindlon@disabled.social

"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] in @thesicktimes

https://thesicktimes.org/2025/04/08/its-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/

Contains quotes from patients and also some experts in the field

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

Key points you should know:

The tilt table test (TTT), commonly given to diagnose postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia, can be dangerous for some people with Long COVID, especially those who experience post-exertional malaise (PEM).

It is well-known that the TTT can provoke fainting and even a temporarily stopped heart, but the medical literature doesn’t reflect how many patients can experience debilitating PEM after the exam.

Alternative tests, including the NASA lean test and active stand test, are becoming more commonly used because of their safety and accessibility, though there are debates about whether they are as reliable as the TTT.

Clinicians also debate whether the POTS diagnostic criteria are too strict in terms of determining who should be treated.

For patients who have no choice but to have a TTT, there are methods for mitigating the possible harm, including saline infusions and ample rest and recovery before and after.

ALT

**Rowdy** @rowdy@mastodon.social · 4d

Rowdy @rowdy@mastodon.social

New #cfp added for WordPress Accessibility Day (https://wptoots.social/@wpa11yday) in October 2025.
More details at https://cfp.watch/cfps/2025-wordpress-accessibility-day/.

WordPress Mastodon TootsWordPress Accessibility Day (@wpa11yday@wptoots.social)321 Posts, 7 Following, 88 Followers · Official Mastodon account for the WordPress Accessibiltiy Day Conference. A virtual 24-hour conference on #WordPress and #a11y.

#cfs #callforpapers #callforproposals

**Rowdy** @rowdy@mastodon.social · 4d

Rowdy @rowdy@mastodon.social

New #cfp added for SymfonyCon Amsterdam in November 2025.
More details at https://cfp.watch/cfps/2025-symfonycon-amsterdam/.

cfp.watchSymfonyCon Amsterdam 2025 - CfP WatchA collection of open Call for Papers for (aspiring) speakers.

#cfs #callforpapers #callforproposals

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 5d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

Congratulations and thanks to Lee for completing his 24-hour marathon in aid of ME in memory of his late brother, Joss.

Separate donation links below in case anyone wants to donate to one of Lee's pages
Irish ME/CFS Association
https://www.idonate.ie/fundraiser/LeeColligan

Action for ME
https://joshcolligan.muchloved.com/

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

ALT

**Pete Ashton** @pete@social.coop · 6d

Pete Ashton @pete@social.coop

Was looking for ways to visually record my chronic fatigue and frying an egg for lunch is the one hot meal I can consistently manage at the moment, so I’m photographing them. Nine so far, which is a grid. Next grid at 16. #cfs

A grid of nine photos of fried eggs on toast, cooked to varying degrees of compentency.

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 6d

Tom Kindlon @tomkindlon@disabled.social

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

https://crowdfund.berkeley.edu/project/46120