Ambassador @ambassador

17 posts6 participants0 posts today

**Tom Kindlon** @tomkindlon@disabled.social · 7h

Tom Kindlon @tomkindlon@disabled.social

"Emergency departments aren’t trained for Long COVID [& ME/CFS] — and patients are paying the price" by @thesicktimes

https://thesicktimes.org/2025/06/02/emergency-departments-arent-trained-for-long-covid-and-patients-are-paying-the-price/

Among other things, recommends more medical education for healthcare staff in emergency rooms & elsewhere, plus better access to telehealth

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

Emergency departments aren’t trained for Long COVID — and patients are paying the price
Written by

Lauren May

–

June 2, 2025
Graphic showing a red cross with a large crack running through its center, against a backdrop with small white coronavirus particles on an orange background
Miles Griffis / The Sick Times

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

11h

Tom Kindlon @tomkindlon@disabled.social

I thought this was good (as I'd expect from Oonagh & #ThereForME team):

"The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient"

https://www.thereforme.uk/p/the-importance-of-understanding-rest

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

13h

Tom Kindlon @tomkindlon@disabled.social

From Mass ME e-newsletter

Spotlight on Kim Moy who has cared for her husband with ME/CFS for many years.

She runs Caregiver Wisdom & the monthly MEAction partner caregiver support group, among other things

Links:
https://massmecfs.org/members/members-spotlight/member-spotlight-moy
https://massmecfs.org/members/members-spotlight/spotlight-update-kim-moy

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

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

17h

Tom Kindlon @tomkindlon@disabled.social

New:
Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome

https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2025.1593269/full

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

Screenshot of list of authors, their affiliations and the introduction section

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

3/
For those with light sensitivity

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

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate
Sav

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

Tom Kindlon @tomkindlon@disabled.social

Mind in the mist: the interplay between fatigue, information processing and brain fog

https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2513194

Image is from the latest Science for ME weekly update

Fatigue: Biomedicine, Health & Behavior
Mind in the mist: the interplay between fatigue, information processing and brain fog — Tarek A.-Z. K. Gaber
Editorial from a neuro-rehabilitationist perspective. "In this short paper we tried to highlight the strong and well established link between energy and information as understood by the laws of physics and subsequently, the potential for this link to shed light on the high prevalence of cognitive difficulties in patients suffering from chronic fatigue such as patients with ME/CFS, long Covid, multiple sclerosis, etc."

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

Tom Kindlon @tomkindlon@disabled.social

From meresearchuk

Findings from a study published in the ‘Virology journal’ provide evidence of a causal connection between immune cells and post viral fatigue syndrome.
Read more: https://bit.ly/3ZbLbil
#MECFS #MyalgicEncephalomyelitis @mecfs

Findings indicate "compelling evidence of a probable causal link" between immune cells and post viral fatigue syndrome (PVFS) - an umbrella term which includes ME/CFS, fibromyalgia, and long COVID. Immune cells ®.• Post viral fatigue syndrome „_ Wang et al., Virology Journal (2025) 41114 INFORM. INFLUENCE. INVEST. SCO36942 RESEARCH UK

Replied to Irish ME/CFS Association

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

Tom Kindlon @tomkindlon@disabled.social

Hope to see some of you at this event in Dublin 15.

If the weather is suitable, I plan to be outside. There are benches there for this purpose.
#NeuroME #MyalgicEncephalomyelitis

@IrishMECFSAssociation @mecfs

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

Tom Kindlon @tomkindlon@disabled.social

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME / #CFS
symptoms

#MECFS @mecfs @longcovid
1/

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

Tom Kindlon @tomkindlon@disabled.social

Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with ME/CFS

https://onlinelibrary.wiley.com/doi/10.1002/ctm2.70346

Image is from Science for ME weekly update

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

Clinical and Translational Medicine
Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with myalgic encephalomyelitis/chronic fatigue syndrome — Katherine A. Glass et al.
"Particularly prominent findings include the downregulation of protein sets including the TCA cycle and other metabolic pathways in ME/CFS patients 15 min postexercise, alongside the upregulation of complement system proteins." " Additionally, we found the dynamics during exercise recovery of 10 EV proteins involved in protein folding and the ER stress response were highly correlated with the severity of PEM in ME/CFS patients."

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

Tom Kindlon @tomkindlon@disabled.social

Videos of the conference "ME/CFS Symposium 2025 – Research and Health Care Studies in Germany“ are now available online

https://events.mecfs-research.org/en/events/symposium_2025/videos

Image is from Science for ME weekly update

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

ME/CFS Research Foundation
The Charité and the ME/CFS Research Foundation held the “ME/CFS Symposium 2025 – Research and Health Care Studies in Germany“ on 13 May 2025 in Berlin. Videos of the conference talks are now available online. All presentation were held in German. For the videos, automatically generated subtitles are available via Youtube.

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

Tom Kindlon @tomkindlon@disabled.social

UK ME/CFS Biobank has samples available for research (for researchers worldwide)

Links:
https://cureme.lshtm.ac.uk/index.php/our-samples/
https://cureme.lshtm.ac.uk/index.php/free-blood-samples-for-me-cfs-researchers/

Image is from Science for ME weekly update

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

UK ME/CFS Biobank has samples available for research.
"Using biobank samples saves time and costs on lengthy ethical processes, recruiting and meeting with participants, the collection, processing and storage of samples, and data collection. More details on sample types and the accompanying data available can be found on the website.
If you would like to apply for samples free of all costs of collection, processing and storage, please send a brief outline for a research proposal to the Biobank. Full details for applications are on the website. These free samples are available for a limited time only."

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

A critical look at a recent problematic BPS study on the impact of the pandemic and the public perspective on ME/CFS based on Tweets. Tuller comments: "This is propaganda cosplaying as research."

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
@mecfs

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

Tom Kindlon @tomkindlon@disabled.social

A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS

https://www.aquietstorm.me/about

Image is from the AMMES June 2025 e-newsletter

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

One of the pieces of art with a woman lying in her bed
plus the following text
A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS
A Quiet Storm is founded and run by volunteers with ME/CFS, many with severe forms. This site is a testament that although we may be too ill to accomplish things individually, together as a community, we can achieve great things.

Continued thread

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

Tom Kindlon @tomkindlon@disabled.social

2/
"University makes 'ground-breaking' discovery offering hope for chronic pain sufferers"

https://news.stv.tv/north/aberdeen-university-ground-breaking-discovery-brings-hope-for-chronic-pain-sufferers

2-minute video clip plus article from Scottish TV news features woman with #CFS & #fibromyalgia

#chronicpain #rheumatoidarthritis @chronicpain @chronicillness @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

News / North East & Tayside

University makes 'ground-breaking' discovery offering hope for chronic pain sufferers
Researchers hope the breakthrough will lead to new treatments for conditions such as fibromyalgia and rheumatoid arthritis.

Play VideoAdobe Stock
Research: University makes 'ground-breaking discovery' for chronic pain treatment.

Continued thread

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

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

‪2/‬

‪Subsequent to making this image, one of the doctors we sent the recording to sent us this: "Thanks you very much for forwarding on that lecture on ME. Found it very interesting."‬

‪#MyalgicEncephalomyelitis #MedEd‬ #MyalgicE
#mecfs @mecfs

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

Tom Kindlon @tomkindlon@disabled.social

"The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): from biochemistry to electrophysiology"

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06146-6#Abs1

Image is from the AMMES June 2025 e-newsletter

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

Photo of a test tube holding some sort of red liquid with the following text:

The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): from biochemistry to electrophysiology
"Multiple studies have integrated techniques to aim to improve biomarker sensitivity and specificity. By combining individual parameters/protocols (using methods such as multiple logistic regression) and adopting a multi-modal diagnostic approach, diagnostic sensitivity and specificity has been shown to increase in some studies.This is most beneficial in cases such as quantitative metabolomics, where metabolite biomarkers can be combined during data analysis following a single run protocol.

"The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): from biochemistry to electrophysiology"

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

Tom Kindlon @tomkindlon@disabled.social

"An exhausted antiviral immune response is observed in myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS) & long COVID. In this study, potential mechanisms behind this exhaustion were investigated"

https://www.mdpi.com/1999-4915/17/3/422

Image is from AMMES June 2025 e-newsletter

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