Nume MacAroon Ⓥ @nm

23 posts13 participants0 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 14h

Tom Kindlon @tomkindlon@disabled.social

An example of the thoughtless or insensitive comments people with chronic illnesses can sometimes hear

From a blog post by an Irish woman with ME who has become a published writer
https://solongasicanbreathe.wordpress.com/2025/04/14/walking-ambling-stumbling/

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

During this period of change an ex-colleague visited with their young child and as they were leaving, my visitor, having noticed piles of crumbs on my kitchen floor from her child, exclaimed, “Cleaning up after us will give you something to do.”

As all moderate ME patients know, there’s plenty we would love to do in a given day. Our Wishlist’s are endless, however, our energy never matches our plans. And cleaning up after a stranger certainly isn’t something any of us want or expect to have to use our limited energy on.

ALT

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

15h

Tom Kindlon @tomkindlon@disabled.social

Trial By Error: My Visits with Alem Matthees, 2025
https://virology.ws/2025/04/14/trial-by-error-my-visits-with-alem-matthees-2025/

Explains the heroic work Alem did, the effect on the #MECFS medical scene of his work but also the health effects Alem suffered as a result, as he now tragically lives with #verysevereME.

This could have been prevented if the PACE trial authors had released the data!

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

Among many methodological and ethical lapses, the authors weakened their key outcome measures from what they had promised in the protocol and omitted key data from their papers. In the process, they misrepresented their findings and violated core principles of scientific research. Alem sought the missing data under a freedom of information request—a prolonged battle that ended up in a tribunal hearing in April, 2016.

In advance of the hearing, Alem prepared a massive and masterful brief and submitted it to the tribunal. That summer, the tribunal ruled in his favor and against QMUL, the institutional home of the lead author of the main PACE trial report. The subsequent data release led to the publication two years later of a definitive rebuttal of the PACE trial claims. (Alem and I were among the co-authors of this paper.) After Alem’s legal victory, it was no longer necessary to speculate about how bad the PACE results were likely to have been. The reanalysis documented that, per the measures as outlined in the protocol, the interventions did not lead to recovery, and any reported improvements were so marginal that they could easily be accounted for by bias.

ALT

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

Tom Kindlon @tomkindlon@disabled.social

#MEAction is planning a protest in Washington, DC, on Monday, May 12 for Millions Missing 2025

https://www.meactions.org/millionsmissing2025

Image is from latest Science for ME weekly update

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

USA - #MEAction is planning a protest in Washington, DC, on Monday, May 12 for Millions Missing 2025. Anyone who wants to attend that protest, or who needs help to plan a local event, should contact #MEAction using the forms on their website. The site also has links to a US toolkit and Global toolkit.

ALT

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

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:
A study in Germany has identified that 51.6% of participants who experience ME/CFS symptoms but who did not (yet) have an ME/CFS diagnosis met the Canadian Consensus Criteria for the disease. Read more: https://tinyurl.com/344t4kty

#MEcfs #CFS #PwME @mecfs

Can a simple, short screening test distinguish people with a diagnosis of ME/CFS from people who have symptoms of the disease but no diagnosis? A study in Germany aimed to: • Identify how many people how many people 'who were convinced they had ME/CFS' but did not (yet) have a diagnosis, met the Canadian Consensus Criteria (CCC) for the disease. Compare those with an ME/CFS diagnosis and those without, in terms of symptoms • experienced and length of disease. 51.6% of people who experienced ME/CFS symptoms but did not (yet) have a diagnosis of the disease met the CCC. Notably, compared with those who had an ME/CFS diagnosis, participants without an ME/CFS diagnosis who met the CCC had: · Very similar symptoms. • Shorter duration of disease. INFORM. INFLUENCE. INVEST. ME SC036942 RESEARCH UK Habermann-Horstmeier, L., and Horstmeier, LM. Prev Gesundheitsf (2025)

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**Will** @AncTreat5358@mindly.social · 2d

Will @AncTreat5358@mindly.social

My body pain is rather curious. I'm not sure how long it's been going on at this constant level, but I think far shorter than the time I've been diagnosed with fibromyalgia or ME/CFS.

No matter how much I stretch, take hot showers, or use heating pads to leech the pain away, it doesn't reduce even slightly. It's like I'm trying to escape my body, but the skin refuses.

And the much-vaunted "just exercise to get healthier" is as unattainable as anything I can imagine.

Relatable?

#ChronicPain #Fibromyalgia #MECFS

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

Tom Kindlon @tomkindlon@disabled.social

Crowdfunding for David Tuller's work reported on ME, ME/CFS, Long Covid, & so on...

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

Image is from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @david

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on...
New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.

ALT

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

Tom Kindlon @tomkindlon@disabled.social

Recording of a general introduction about ME and medical research into ME in English by Professor Ola D. Saugstad

He is a Norwegian pediatrician, neonatologist and neuroscientist

https://youtu.be/Cy_NwD32aTA

Image is from latest Science for ME weekly update

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

Iceland Professor Ola D. Saugstad has given a talk in Iceland. First he gives a general introduction about ME and medical research into the illness. In the second half he talks about oxygenation of newborn babies. The talk is in English (apart from a few minutes of introduction in Icelandic) and has been uploaded on YouTube by the Icelandic ME Association ME félag Íslands.

ALT

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

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

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 · 3d

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

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

**David Bridger** @DavidBridger@mastodon.social · 3d

David Bridger @DavidBridger@mastodon.social

My updated #introduction on Mastodon.

I'm an author, mainly of science fiction and fantasy. Pagan. Dedicant of the Morrigan. Old salt. Cold War rebel -> present day anarchist. We are the resistance. Friend of crows, rescuer of dogs, adopter of donkeys. Trans ally. The pronouns I prefer are he/him. I live with ME (#pwME) and arthritis.

If I get an unlikeable vibe off you, I'll block you. No argument. No trading of insults. No warning.

My books are my activism: https://www.beatentrackpublishing.com/?ref=DavidBridger

www.beatentrackpublishing.comby David Bridger...

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

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 · 4d

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 · 4d

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

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

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

ALT

**Fatigatio e.V.** @FatigatioeV@mastodon.social · 4d

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 #

ALT

**Tom Kindlon** @tomkindlon@disabled.social · 5d

**Tom Kindlon** @tomkindlon@disabled.social · 5d

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 · 5d

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

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**Will** @AncTreat5358@mindly.social · 5d

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

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