Dronningen af Helvede @queen

3 posts2 participants1 post today

**Tom Kindlon** @tomkindlon@disabled.social · 20h

Tom Kindlon @tomkindlon@disabled.social

The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members.

https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf

Factsheets on other topics related to ME/CFS are in the pipeline.

#MEcfs #PwME @mecfs

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center, told Fierce Biotech in a March 19 interview. “These cuts have brought our work to a dead halt.”

#PwME #MEcfs
@mecfs

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

Tom Kindlon @tomkindlon@disabled.social

(US)
'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo

https://www.fiercebiotech.com/research/stuck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical

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

'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo
By Darren Incorvaia Mar 28, 2025 3:15pm
chronic fatigue syndrome Columbia University Donald Trump National Institutes of Health (NIH)
Library at Columbia University
The cuts to Columbia University's ME/CFS research center are part of the Trump administration's broader $400 million cuts to the university, which are now being challenged in court. (iStock / Getty Images Plus)

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

Tom Kindlon @tomkindlon@disabled.social

"Showering: self-care or self-sabotage?" short blog post by a woman with #POTS and ME.
https://chronicallycraptastic.com/showering-self-care-or-self-sabotage/

"It sounds counterintuitive, but it pans out for people with ME/POTS, sometimes NOT showering is a form of self-care"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Photo of the face of a woman whose hair is in the towel following a shower
Showering: self-care or self-sabotage?

Continued thread

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

Mar 21

Tom Kindlon @tomkindlon@disabled.social

4/
Volunteer in Norwegian ME Association:
“There are days or weeks when I can't do anything. Few employers will hire someone who disappears for an extended period of time due to illness. It makes it difficult to return to work, especially if you don't get better.”

#MEcfs #PwME
@mecfs

Continued thread

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

Mar 21

Tom Kindlon @tomkindlon@disabled.social

“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”

#PwME #MEcfs
@mecfs

Continued thread

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

Mar 21

Tom Kindlon @tomkindlon@disabled.social

“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”

#MEcfs #PwME #CFS
@mecfs

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

Mar 21

Tom Kindlon @tomkindlon@disabled.social

"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762

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

Almost no ME/CFS patients return to work
"The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher.
The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB)
Emilie Wee Journalist
Published 21 March 2025 - 00:01

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

“For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.”

#Dysautonomia #PwME #mecfs #longcovid
@mecfs @longcovid @dysautonomia

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

From Medscape (widely read by health professionals):

"What Not to Say to People With Complex Chronic Illness"

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft
(may require free registration)

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

Medscape Medical News

What Not to Say to People With Complex Chronic Illness
Miriam E. Tucker
March 18, 2025

1
25
Add to Email Alerts
For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.

photo of Dr Svetlana Blitschteyn
Svetlana Blitshteyn, MD
To address this, Svetlana Blitshteyn, MD, a neurologist who is the director of Dysautonomia Clinic at Jacobs School of Medicine and Biomedical Sciences, University of Buffalo, and Nancy J. Smyth, PhD, professor and former dean at the School of Social Work, University at Buffalo, both in Buffalo, New York, co-authored a paper entitled Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders. In it, they provided a table of 16 “never words” that clinicians should avoid saying to patients, explanations of why the phrases are problematic, and proposed alternatives for more effective and empathetic communication.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

For individuals with ME/CFS, sleep disturbances are a core feature of the disease. Whilst optimising sleep within the constraints of ME/CFS does not cure the disease, poor sleep quality significantly impacts quality of life.

https://bit.ly/sleepdayme25

#MECFS #cfs #pwme #sleep #Sleepproblems #WorldSleepDay @mecfs

WORLD SLEEP DAY 14th March 2025 World Sleep Day, an annual event organised by the World Sleep Society, aims to raise awareness about sleep-related issues. According to NICE, people with ME/CFS have unrefreshing sleep and/or sleep disturbance, which may include: ALTERED SLEEP PATTERN HYPERSOMNIA SLEEP & ME/CFS (EXCESSIVE DAYTIME SLEEPINESS) FEELING EXHAUSTED, FLU-LIKE AND STIFF ON WAKING BROKEN OR SHALLOW SLEEP ME RESEARCH UK SC036942 INFORM. INFLUENCE. INVEST.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI

Frontiers in Neuroscience
Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al.
"These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond eﬃciently to physical exertion, potentially driving exacerbation of symptoms seen in PEM."

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

Mar 13

Tom Kindlon @tomkindlon@disabled.social

(Australia-wide survey)
Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or #LongCovid ?

"The Australian e-Health Research Centre at CSIRO ... is conducting a survey to understand the research priorities of the community"

Link:
https://csiro.qualtrics.com/jfe/form/SV_50apVQ5MHXTReBw

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@auscovid19 #auscovid19

Are you living with, caring for, or treating someone with Long COVID or Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS)?
We want to hear from you!
The Australian E-Health Research Centre (AEHRC) and Monash University have partnered with Emerge Australia to conduct a study seeking to understand the research priorities of people living with, caring for, or treating someone with Long COVID or ME/CFS. We also want to understand the major challenges they currently face in accessing quality care.
M=
The AEHRC, Monash University and Emerge Australia are currently recruiting participants aged 18 years or older to participate in an online survey which is expected to take around 15 minutes to complete. Participants will also have the option of participating in a further interview, should they choose, expected to take around 30 minutes. The interview can be undertaken over multiple sessions is needed or via email response.
Participation is voluntary and you do not have to take part if you don't want to. You can choose to participate in only the survey if you wish.
For additional information about the project please click the link below to view the Participant Information Sheet and access the survey.
Access the information sheet and survey here
Australian e-Health
CSIRO Research Centre
MONASH University
emerge
australia
Contact Person:
Dr Alana Delaforce, Australian E-Health Research Centre, alana.delaforce@csiro.au 296 Herston Road, Herston, Qld, 4029 P: 07 3253 3647

**illmarks** @illmarks@www.illmarks.com · Mar 12 *

Mar 12 *

illmarks @illmarks@www.illmarks.com

Treatment: The ER’s Embrace

https://www.illmarks.com/treatment-the-ers-embrace/

the creme bookmark with an outline of a person has the figure drawn in dark teal ink, with varying line widths. Attached to the figure are light blue iridescent medical equipment: a blood pressure cuff, finger pulse oximeter, and five electrodes placed on the figure's chest. From each of these pieces of equipment flow dark purple cables, which wrap around the figure's limbs in flowing loops and curls. Each piece has two cables, a thick cable and a thin cable, which sometimes loop over each other. There's a sort of hyper-stylized aesthetic to the cables, where they feel more like comforting embracing ribbons rather than restrictive or claustrophobic.

#bodyHorror #bodyMapping #chronicIllness

**Deer Witch Nyx** @moss@kind.social · Mar 10 *

Mar 10 *

Deer Witch Nyx @moss@kind.social

Working on a few concepts for the upcoming long COVID gallery exhibit , and it’s really really nice to give my brain some design challenges.

That said, it’s really hard to make my brain stop ideating and problem solving when it’s time to rest. :/

Anyone with ME/CFS have tips on the latter? #longcovid #pwME #MECFS

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

Mar 10

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

A study has investigated the impact of psychosomatic and psychiatric misdiagnoses on the well-being of people with systemic autoimmune rheumatic diseases.

Read more about what the research found, and how it relates to ME/CFS research here: https://bit.ly/4ioaGnG

@chronicillness @spoonies @Acicommunity @mecfs @longcovid #chronicillness #autoimmune #mecfs #cfs #pwme

**David Bridger** @DavidBridger@mastodon.social · Mar 10

Mar 10

David Bridger @DavidBridger@mastodon.social

There is a certain person who I wish would understand that I'm not hurting horribly because I don't move enough. It's the other way around - I can't move as much as I'd like because I'm hurting horribly. This is especially irritating because the person knows that before I got ill I was an endurance athlete. #pwME #ME #arthritis

**Tom Kindlon** @tomkindlon@disabled.social · Mar 9

Mar 9

Tom Kindlon @tomkindlon@disabled.social

27-minute video from @brokenbattery :
“the greatest medical scandal of the 21st-century”: ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

https://www.youtube.com/watch?v=RiwX9Y0NbiQ

Image is from AMMES March 2025 e-newsletter

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

“the greatest medical scandal of the 21st-century”: ME/CFS Scandal Explainer.
A number of academics, experts, and journalists have characterised the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a scandal, with George Monbiot going as far as calling it “the greatest medical scandal of the 21st-century”. This video provides an introduction and overview, highlighting key events in the story.

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

Mar 5

Tom Kindlon @tomkindlon@disabled.social

"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

https://www.eurekalert.org/news-releases/1074887

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

News Release 2-Mar-2025
Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
Peer-Reviewed Publication
University of Cambridge

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

Mar 4

Tom Kindlon @tomkindlon@disabled.social

"we recommend that rather than including patients merely for their ‘lived experience’, people living with complex chronic conditions should be systematically integrated into clinical & research teams as knowledge partners"

https://mh.bmj.com/content/51/1/34.full

From latest Science for ME weekly update

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

Recent searches

Search options

Administered by:

Server stats:

#pwme