#MyalgicEncephalomyelitis is an active hashtag on Bluesky. In the last 30 days, 22 people shared 65 posts with it — around 2 a day. Activity is up 157% versus the previous week, peaking on Jul 15 with 6 posts.

Posts with #MyalgicEncephalomyelitis

Brent Forman 🇨🇦

@joeblow604.bsky.social

about 1 year ago

This #oilpainting I did for my son before #MyalgicEncephalomyelitis. I've always just painted what I want & give them away, but this one he asked for something specific & did my best to give him that #MEcfs #painting #art #artwork #brentmichaelstudios #BMS #langleyartist #BCartist #canadianartist

An oil painting of a near frozen winding stream, a cabin on the right, heading towards a bright yellow horizon in the distance. The colors are a mix of greens and yellows as well as snow.

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Tom Kindlon

@tomkindlon.bsky.social

1 day ago

“I want to warn those who are working but barely getting by: do not ignore your symptoms, because you risk losing several levels of function. I pushed and ignored my symptoms to the point where I had nothing left. Pacing is so important” #MyalgicEncephalomyelitis #MEcfs #CFS #PwME 1/

3 16 50

Action for ME

@actionforme.bsky.social

about 24 hours ago

Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/th…. #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME

A white man lies in bed with ear defenders and an eye mask on. Behind him is a wheelchair and curtains pulled closed. Text overlay reads “Action for ME, 25% ME Group, Severe ME Inquiry Report. ‘The more ill you become, the less care you receive’. Major new #SevereMEDay report exposes systemic failures people with severe and very severe ME face, and calls for urgent action from Government, the NHS and public services.” Photo credit Lea Aring / German Association for ME/CFS.

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Tom Kindlon

@tomkindlon.bsky.social

4 days ago

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC 1/

APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.

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Tom Kindlon

@tomkindlon.bsky.social

10 months ago

New Polish study which also involved some UK researchers: "The gut microbial composition is different in chronic fatigue syndrome than in healthy controls" www.nature.com/articles/s41... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Abstract
The pathogenesis of Chronic Fatigue Syndrome (CFS) is yet unknown. This study aimed to assess the gut microbial composition in CFS patients versus in healthy controls (HCs). The composition of fecal bacteria was examined in twenty-five CFS patients and sixteen HCs using Illumina sequencing of 16 S rRNA gene amplicons targeting the V3-V4 bacterial gene regions. 143 (46%) of the microbial genera were found only in the CFS. In addition, the gut microbial composition in the CFS patients contained a much higher proportion of the 10 most commonly found bacteria compared to the HCs group. A significantly lower observed number of operational taxonomic units (OTUs) was noted in CFS compared to HCs (p = 0.045). Significant between-group differences in the gut microbial composition in CFS compared to HCs were noted. The three most discriminating Amplicon Sequencing Variants (ASVs): ASV 191, ASV 44, and ASV 75, were identified as significantly more abundant in the healthy control group compared to the patient group. In addition, the Neural Network (multilayer perceptron) was able to discriminate gut microbial composition from CFS versus HCs with excellent performance (AUC = 0.935). The gut microbial composition is different in CFS patients compared to HCs. Further studies should assess the pathophysiological consequences of these differences as well as the effectiveness of therapies aimed at modifying the gut microbial composition in CFS patients.

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María Richardson

@diatoma.bsky.social

over 1 year ago

Have you watched this excellent intro to #MyalgicEncephalomyelitis #MECFS #PEM by @scishow.bsky.social ? It's only 8 minutes long & jam-packed with important info (including helping folks with #LongCovid that matches mild #ME identify #PEM & prevent harm 🙏🏻) www.youtube.com/watch?v=w….

www.youtube.com

Exercise Actually Makes Chronic Fatigue Syndrome Worse

YouTube video by SciShow

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Tom Kindlon

@tomkindlon.bsky.social

1 day ago

2/ From Recap: Support Group: Navigating Work Loss and Financial Stress batemanhornecenter.org/wp…. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

batemanhornecenter.org

0 0 15

Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

Life shrinks with ME/CFS. Found on the CFS community on Reddit #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

"Life shrinks with ME/CFS" which highlights different severities of ME/CFS and how they affect patients.

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Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

Now I've had #MyalgicEncephalomyelitis 36 years (since age 16), 30 years with #SevereME🙁 We need more public & private* research money to speed up progress Here's my story in Irish Independent m.independent.ie/life/hea…. *List of research funds phoenixrising.me/myalgic-…. #MEcfs #CFS

Woman lying in a hospital-type bed
#MEACTION
M.E. is a career-ending, life-destroying disability. M.E. impairs patients' ability to function on a regular basis both cognitively and physically. 75% cannot work and some of the rest only work part-time. 25% of patients are housebound or bedbound,
with the sickest unable to brush their teeth or feed themselves.

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Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

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 1/

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

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Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

A big thank you to everyone who did anything, big or small, for the #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (+/or #LongCovid) cause in 2024 (including simply sharing messages on social media). 👍👏 Together we can make a difference. #MEcfs #PwME #PwLC

Image showing "thank you" in lots of different languages

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Honest and Unfiltered

@momazonrises.bsky.social

over 1 year ago

#Voices4Victory #ProudBlue I became chronically ill & disabled in 2020. One of the illnesses I was diagnosed with is #Myalgicencephalomyelitis. It’s also known as Chronic Fatigue Syndrome. This heart represents this community. We fight daily. Now the fight is even worse with Trump & his cabinet.