stux @stux@mstdn.social

29 posts11 participants3 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 59s

Tom Kindlon @tomkindlon@disabled.social

New:

Health-related quality of life in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and #PostCOVID19 Condition: a systematic review

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06131-z

"ME/CFS and PCC have similar, profound impacts on HRQoL [health-related quality of life]"

#LongCovid @mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver @auscovid19

Continued thread

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

11h

Tom Kindlon @tomkindlon@disabled.social

2/
"Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or long-COVID?

The Australian e-Health Research Centre at CSIRO, in partnership with Emerge Australia..., is conducting a survey to understand the research priorities of the community"

#CFS #mecfs @mecfs @longcovid @auscovid19

Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or long-COVID?

The Australian e-Health Research Centre at CSIRO, in partnership with Emerge Australia and in collaboration with Monash University, is conducting a survey to understand the research priorities of the community.

Your feedback will help shape the research, and the methods used. The survey will take about 15 minutes to complete.

For further information contact Dr Alana Delaforce.

ACCESS THE SURVEY

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

11h

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

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

14h

Tom Kindlon @tomkindlon@disabled.social

Research Digest 114

https://www.emerge.org.au/researchdigest/research-digest-issue-114/

Includes new "Easy Read Overview" plus the option to hear the text

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

11:04 am
February 28, 2025
Research Digest | Issue 114
The 114th edition of the Research Digest covers studies on potential treatments, biomarkers, and risk factors for long COVID and ME/CFS. Highlights include intravenous immunoglobulin as a possible therapy, biomarkers distinguishing long COVID patients with ME/CFS symptoms, a large paediatric study on risk factors and recovery, and a review of microRNAs in disease mechanisms. We also feature Australian research linking brain changes to cognitive symptoms, reinforcing the biological basis of these conditions.

Contributing Digesters: Jyothsna, Solène, Sarah, Shan and Simone.

Don’t forget about the new addition to the Research Digest!! In response to recent feedback from our community, we’ve introduced the Easy Read Overview. Placed before each article’s summary, the Easy Read Overview gives readers a short, two- to three-sentence overview, providing a quick snapshot of the research, making it even easier to stay informed.

We hope you find the Easy Read Overview and the recently added audio summaries (below), valuable features of Emerge Australia’s Research Digest.

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

14h

Tom Kindlon @tomkindlon@disabled.social

(US) Advocacy Week to be Held in June

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:

https://massmecfs.org/newsletters/919-2025-03-march-newsletter

Advocacy Week to be Held in June

Advocacy Week, run by SolveME/CFS, is an excellent way to make your voice heard on Capitol Hill. This year, the meetings with Congressional offices will be held June 23 - 27. Registration will open soon. All meetings this year will be held virtually, so no travel is required, and there are ways to engage at all energy levels.

We have had excellent representation from Massachusetts in past years, and we would like to continue to show up in force. Let's see if we can meet with every Massachusetts Congressional office this year. We would particularly welcome constituents of the 6th district (Seth Moulton).

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs

**Tom Kindlon** @tomkindlon@disabled.social · 22h

22h

Tom Kindlon @tomkindlon@disabled.social

Sympathetic US article.

https://www.vindy.com/life/lifestyles/2025/03/does-long-covid-19-shed-light-on-long-vax-or-me-cfs/

A bit too much focus on long vax for my liking as I suspect that is only a small proportion of ME/CFS & Long Covid. Plenty of people had long Covid in 2020 & 2021 before the Covid vaccines became available

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

Does long COVID-19 shed light on long vax or ME/CFS?
Life

Mar 11, 2025
Joe Graedon, M.S. and Teresa Graedon, Ph.D.
The People's Pharmacy

Modern medicine has failed millions of patients suffering from a mysterious and debilitating condition.

We first learned about this problem many decades ago when we interviewed Dr. Paul Cheney on our radio show. He had identified a cluster of patients near Lake Tahoe, Nevada, who were suffering debilitating symptoms.

**Mr Creosote** @mr_creosote@dosgame.club · 22h

22h

Mr Creosote @mr_creosote@dosgame.club

Falls jemand in der Gegend ist...

#CFS
#LongCovid

Aufruf zur Demo für mehr Engagement zum Thema ME/CFS.

Ort: Bremen, auf dem Marktplatz vor der Bürgerschaft
Zeit: 14.03.2025, 15-17 Uhr

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

Tom Kindlon @tomkindlon@disabled.social

(Queensland, Australia)

"Very soon, eligible donors in Brisbane will be able to donate blood to the AusME Biobank, supporting vital ME/CFS and long COVID research"
https://www.emerge.org.au/ausme/

From Emerge Australia e-newsletter

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

Exciting news for our Queensland community!

Very soon, eligible donors in Brisbane will be able to donate blood to the AusME Biobank, supporting vital ME/CFS and long COVID research. Stay tuned for location details very soon!

If you’re an eligible AusME Registry participant in Queensland, check your inbox soon for more information. Not an AusME Registry member yet but interested in donating? If you’re in Brisbane, now’s the time! Click the link to join and support this important research.

JOIN THE AusME TODAY!

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

Tom Kindlon @tomkindlon@disabled.social

Video Series: Severe ME/CFS: Care, Rights, and Research

Links:
https://solvecfs.org
https://batemanhornecenter.org/
https://www.youtube.com/playlist?list=PLbO5abv0daLWxpsDsRrOYq7PGxiHD0P6t

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter

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

Video Series: Severe ME/CFS: Care, Rights, and Research

This four-part webinar series presented by Solve M.E. and the Bateman Horne Center featured medical professionals, legal experts, scientists and care partners, discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME. Watch here.

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

Tom Kindlon @tomkindlon@disabled.social

Research Digest | Issue 113

https://www.emerge.org.au/researchdigest/research-digest-issue-113/

Includes new "Easy Read Overview" plus the option to hear the text

Research Digest | Issue 113
Welcome to the 113th and final edition of the Research Digest for 2024. This edition highlights significant findings on the growing challenges of long COVID and its connection to ME/CFS. The featured articles delve into the global, social, and economic impacts of long COVID, explore opportunities for research and treatment, and underscore the urgent need for action to support those affected.

Contributing Digesters: Ryan and Simone.

New addition to the Research Digest!! In response to recent feedback from our community, we’ve introduced the Easy Read Overview. Placed before each article’s summary, the Easy Read Overview gives readers a short, two- to three-sentence overview, providing a quick snapshot of the research, making it even easier, to stay informed.

We hope you find the Easy Read Overview and the recently added audio summaries (below), valuable features of Emerge Australia’s Research Digest.

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

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

Tom Kindlon @tomkindlon@disabled.social

Update on Science for ME complaint to Cochrane regarding CFS graded exercise review

Links:
https://www.s4me.info/threads/s4me-2023-open-letter-complaints-petition-updates-regarding-cochrane-and-the-cfs-exercise-therapy-review.34973/page-3#post-585637

https://www.s4me.info/threads/s4me-2023-open-letter-complaints-petition-updates-regarding-cochrane-and-the-cfs-exercise-therapy-review.34973/page-3#post-591759

From the latest Science for ME weekly update

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

Cochrane complaints
On 5th February 2025, the Science for ME committee submitted a detailed complaint headed: "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." Cochrane failed to provide the promised formal acknowledgment, so we resubmitted the complaint on 20th February, again unacknowledged.
On 3rd March, shortly after contacting Cochrane complaints again, we received a brief and unsigned response which gave an unsatisfactory explanation of part of the complaint: "Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review", claimed this did not breach their editorial policy, said the review "does not make any recommendations for or against exercise therapy", and declared the complaint closed.
Complaint | Cochrane's response | Thread

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

Tom Kindlon @tomkindlon@disabled.social

From ME Research UK:

NK cells are immune cells that destroy infected/diseased cells i.e. possess cytotoxicity (ability to kill other cells). A study found - the most consistent immune finding in ME/CFS research is reduced NK cell cytotoxicity, suggesting immune dysfunction. https://bit.ly/3F4cLqy

#mecfs #cfs @mecfs

Natural killer (NK) cell dysfunction in ME/CFS Cytotoxicity is the ability of a cell to kill another cell. Natural killer (NK) cells are immune cells that destroy infected and diseased cells. Hence cytotoxicity is important for NK cell's protective role in the immune system. ME/CFS research says: Reduced NK cell cytotoxicity is the most consistent immune finding in ME/CFS (according to a meta-analysis). This suggests a change in NK cells in ME/CFS, which contributes to the hypothesis of immune dysfunction related to the disease. Researchers found that - "Cytotoxicity in ME/CFS was significantly reduced to about half of healthy control levels". Baraniuk, James N, et al. "Meta-Analysis of Natural Killer Cell Cytotoxicity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." Frontiers in Immunology. INFORM. INFLUENCE. INVEST. ME RESEARCH UK SC036942

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

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

Continued thread

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

An ad we & the Irish ME Trust are running in this month's Forum magazine for Irish GPs in advance of our free webinar in April

#MEcfs #CFS @mecfs

GP Educational Webinar
on PVFS and ME/CFS
Dr Ros Vallings, a New Zealand GP who is an expert
on myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS), will present a free talk entitled
'Key Messages for Primary Care on the Diagnosis
and Management of Post Viral Fatigue Syndrome
and ME/Chronic Fatigue Syndrome', followed by
a Q&A session on Tuesday, April 8 at 7:30pm.
Accreditation applied for from the Irish College of GPs
For more information, contact events@irishmecfs.org

FORUM March 2025 17

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

Tom Kindlon @tomkindlon@disabled.social

Int J Mol Sci: “Advances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2nd Edition”

The journal is inviting submissions for a special issue, with deadline of 20 May 2025. The guest editor is Dr. Vincent Lombardi.

https://www.mdpi.com/journal/ijms/special_issues/4GJ1W8ESG9

#MEcfs #CFS @mecfs

www.mdpi.comInternational Journal of Molecular SciencesInternational Journal of Molecular Sciences, an international, peer-reviewed Open Access journal.

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

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