Nick Mark, MD @nick

33 posts14 participants1 post today

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

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 · 7h

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 · 8h

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"

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 9h

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

**Tom Kindlon** @tomkindlon@disabled.social · 13h

13h

Tom Kindlon @tomkindlon@disabled.social

"Sister of bedbound ME sufferer urges more funding"

https://www.bbc.com/news/articles/cd9lll0xk1xo

Sympathetic coverage of a tragic case of very severe ME.

This was new to me:
"a new tool called digiTherapix which can track and record a patient's movement in real time at home"

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

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Sister of bedbound ME sufferer urges more funding
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Anna Varle
BBC South West health correspondent
The Barrett family A young woman wearing a blue and red sports tank top on an athletic field running with a baton in her handThe Barrett family
Alice Barrett, 27, was fit and healthy until her third year of university when her condition deteriorated
The sister of a woman with severe myalgic encephalomyelitis (ME) is calling on the government to adequately fund its plan to overhaul care for patients with the debilitating disease.

**Tom Kindlon** @tomkindlon@disabled.social · 15h

15h

Tom Kindlon @tomkindlon@disabled.social

From M.E Support Northern Ireland

Free Zoom event on ME with Dr. Night Speight, consultant paediatrician, on Thursday, April 17.

Click here to register: https://forms.office.com/e/KCM9MCNdWg

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

COMMUNITY FUND
DR NIGEL SPEIGHT M.E.
Patron of M.E Support Northern Ireland
SPECIAL ZOOM EVENT
THURSDAY
17TH APRIL - 7PM
Dr Speight specialises in Pediatric ME/CFS and will be talking about the latest in M.E
REGISTER NOW
SUPPORT
NORTHERN IRELAND
028 9521 5650
www.mesupportni.com

**Tom Kindlon** @tomkindlon@disabled.social · 15h

15h

Tom Kindlon @tomkindlon@disabled.social

New US research:

Identifying commonalities & differences between EHR representations of #PASC & ME/CFS in the RECOVER EHR cohort

https://www.nature.com/articles/s43856-025-00827-5

"These findings suggest symptom management approaches to these illnesses could overlap"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Screenshot of title, author list, abstract & plain language summary

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

16h

Tom Kindlon @tomkindlon@disabled.social

NOTICE: 2025 IACFS/ME Conference Changed to Virtual Format!

October 22 - 25, 2025 Online

https://www.iacfsme.org/2023-conference-main-page-copy-2-copy/

[Image is from an email that has just gone out to people on their mailing list]

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

NOTICE: 2025 IACFS/ME Conference Changed to Virtual Format!
October 22 - 25, 2025 Online
Abstract and Workshop Submission Deadline
Extended to May 19, 2025

Designed by Freepik

Dear IACFS/ME Members and Supporters,
Thank you to all everyone who participated in our recent survey! We also want to thank Dr. Nancy Klimas, Dr. Irina Rozenfeld and the staff at Nova Southeastern University along with our sponsors for their dedication, effort, and time helping us plan this conference.
Based on your responses and comments, we have decided to switch this year's conference from an in-person to an all-virtual format. We believe this change will help those facing funding, travel, and other challenges. Because of the switch to a virtual format, the deadline for abstract and workshop submissions will be extended to May 19, 2025. Submit your work here!
In the future, we will be sharing more information about how to attend and participate in the conference. The format will be similar to our 2022 conference, when we successfully used a combination of the Zoom and Virtual Poster Session platforms. For general information about the conference, please see this webpage. If you have any questions, e-mail us at iacfsmeorg@gmail.com.

**Tom Kindlon** @tomkindlon@disabled.social · 17h

17h

Tom Kindlon @tomkindlon@disabled.social

(UK)
John Milne MP joins Action for ME's Parliamentary Champions network.

Go to,
https://www.actionforme.org.uk/john-milne-mp-pc-network/

Parliamentary Champions
https://www.actionforme.org.uk/campaign/parliamentary-champions-network/

#MEcfs #PwME @mecfs

Action for ME · 1dJohn Milne MP joins Action for ME's Parliamentary Champions network - Action for MEWe pleased to announce John Milne MP as the latest member of our Parliamentary Champions Network! John met with our CEO, Sonya,...

**Fatigatio e.V.** @FatigatioeV@mastodon.social · 18h

18h

Fatigatio e.V. @FatigatioeV@mastodon.social

Wir wünschen euch richtig gute Ostern voller freudiger Momente.

Passt gut auf euch auf!

#Ostern #MECFS #pwME #Pause #TeamSocialMedia #Fatigatio #

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

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

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>>

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

Tom Kindlon @tomkindlon@disabled.social

More bad news for those interested in ME/CFS research it seems: Cornell funds suspended

"Trump administration’s attack on university research accelerates"

https://arstechnica.com/science/2025/04/trump-administrations-attack-on-university-research-accelerates/

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

A lion statue in front of a brick plaza, surrounded by red brick buildings.

Ars Technica · 2dTrump administration’s attack on university research acceleratesBy John Timmer

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

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

**Will** @AncTreat5358@mindly.social · 1d

Will @AncTreat5358@mindly.social

I think I just experienced a physician that doesn’t understand ME/CFS with permanent baseline reductions. He just expressed for over 15 minutes that I need to start exercising and gradually increase. But when I did that in the past, along with my spine issues, it didn’t go well. I don’t choose to not exercise; I just have significant limitations.

#MECFS #pwME

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

Tom Kindlon @tomkindlon@disabled.social

From the ME Association

Update: UK ME/CFS Biobank Steering Group

The ME Association has invested £850,000 in the UK ME/CFS Biobank since it was established in 2011 & continues to fund its operational costs.

Read updates from the latest Cure ME Steering Group meeting on the blog: https://meassociation.org.uk/gtt9

#MECFS #pwME @mecfs

The ME Association · 4dUpdate: UK ME/CFS Biobank Steering Group - The ME AssociationThe ME Association (MEA) has invested £850,000 in the UK […]

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

Tom Kindlon @tomkindlon@disabled.social

Light biographical piece about Clayton Powers.

I had seen him in Bateman Horne Center videos but never knew anything about him personally so nice to be able to read this.

Note: No real new health information in this.

https://uofuhealth.utah.edu/made-better-by-you/stories/clayton-powers

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

University of Utah Health

Photo of Clayton Powers in his physical therapy work space at South Jordan Health Center.

Clayton Powers physical therapist

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 2d

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

**ahimsa** @ahimsa_pdx@disabled.social · 2d *

2d *

ahimsa @ahimsa_pdx@disabled.social

#MillionsMissing 2025: Sending Out An SOS

Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!

https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/

Here's how to sign up

Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern

https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration

Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern

https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration

@mecfs

#MEAction Network · 3dWhy We’re Sending out an SOS this #MillionsMissingOn May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society. HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to … Why We’re Sending out an SOS this #MillionsMissing Read More »

#MEcfs #PwME #MEAwareness

**Tom Kindlon** @tomkindlon@disabled.social · 3d

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

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