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@myalgicencephalomyelitiscfstom
Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070
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"Symptoms made worse due to physical or cognitive exertion in Myalgic Encephalomyelitis & Chronic Fatigue Syndrome"
The unusual method I use to help encourage me to rest 5-7 hours per day
I find it challenging to rest 5-7 hours a day, so I reward myself with food (I don’t get to eat it till I’m lying down where I plan to rest).
This seems to work well for me.
It does take discipline not to put up weight so I count calories/kJs*. But I have managed to keep my BMI within 1 unit of 20 for the last 7 years so think I have it under control.
I like lying outside so don’t need to bring food with me to rest outside. But a lot of the time, it’s not suitable to be outside in Irish weather.
Definitely wouldn’t suit a lot of people, and I’m sure some people will point out their problems with it, but seems to work for me to get the all-important rest to help me have fairly steady energy levels and not deteriorate. What do you do to help encourage yourself to rest?
*Generally for my dinner, these are just guesstimates
From @onelife_livedwell on IG:
Let’s talk about the unofficial evaluation that can determine belief, treatment, or accommodations. What’s being measured is legibility in the eyes of the system you’re dealing with.
From @onelife_livedwell on IG:
There is a particular kind of exhaustion that comes from living in the space between knowing something has changed in your body and waiting for the world around you to find language for it. For many people with energy-limiting and fluctuating conditions, the diagnostic journey is not a straight line but a long and often disorienting passage through normal labs, partial explanations, referrals, waiting rooms, symptom trackers, and includes self-doubt that begins to gather when your daily life no longer matches what the medical record can easily show. This is part of what people mean by the diagnostic odyssey, which is not just the search for a diagnosis, but also the invisible labor of translating patterns, crashes, thresholds, recovery time, brain fog, dizziness, pain, and lost capacity into a system that often recognizes things more easily when they are stable and measurable by existing processes. If this is where you are, or where someone you love is, I hope this phrase gives you a small place to stand and is a reminder that the journey has a name
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From @onelife_livedwell on IG:
The invisible illness tax is what happens when system limitations impact the people it serves. It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research. The invisible illness tax is real, but so is the growing body of research, education, and education working to reform it.
Articles specifically discussing ME/CFS and long Covid in children and young people can be useful.
This 5-page article is from the Bateman Horne Center Clinical Care Guide
Press release on this interesting Dutch research study:
"New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity"
Google translation:
De verminderde inspanningscapaciteit en spierklachten bij mensen met post-covid en ME/CVS (Myalgische Encefalomyelitis/Chronisch Vermoeidhei
Alternative link that is only in English for the press release:
News Release 28-Jul-2026 Genetic risk factors of fibromyalgia identified in largest study of its kind
New genetic risk factors have been identified for fibromyalgia syndrome. The landmark study, which involved scientists at King’s Coll
Full paper: The genetic architecture of fibromyalgia across 2.5 million individuals
A multi-ancestry genome-wide association study meta-analysis across 2,563,755 individuals identifies 26 risk loci for fibromyalgia, includin
Rob Wüst, corresponding author of the new paper: "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest"
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and
Link to his full post
I am incredibly proud to share our latest study, published today in Nature Communications, as a follow-up from our 2024 Nature Communication
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Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents significant challenges in patient care due to its intricate multisystem
Energy Points Chart
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#PwME #CFS #Spoonies #Spoonie
World ME Alliance: one-page explainer on their Medical Education Hub
A global collaboration of 27 organisations across 21 countries. ME/CFS Medical Education Hub https://worldmealliance.org/medical-education-
Link to Medical Education Hub:
Full Guidelines Continuing Professional Development Severe ME Quick reference summaries Medicines Español Français Deutsch Italian Nederland
Description from Action for ME posted in May:
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This #WorldMEDay, help improve awareness by sharing your story of why medical education matters using the hashtag #EducateME and ask healthcare professionals to read the explainer on how the Medical Education Hub can help.
The Hub contains trusted, evidence-based resources to help healthcare professionals supporting people with ME.
ME is a chronic, debilitating condition that affects at last 67 million people worldwide, but the lack of training and education among clinicians can cause delayed diagnoses, harmful or inappropriate treatments, and repeated experiences of stigma and disbelief.
Read and share their one-page explainer:
A global collaboration of 27 organisations across 21 countries. ME/CFS Medical Education Hub https://worldmealliance.org/medical-education-
While views aren’t the only metric to assess the value of social media output, sometimes it’s useful to reach a significant number of people.
So I’m pleased that the extra time/energy I have been putting into my FB page is yielding results.
News Release 8-Jul-2026 Eye problems after COVID-19 can now be explained https://www.eurekalert.org/news-releases/1134768
"Impaired pupil function was furthermore linked to headaches, difficulty reading text & in focusing the eyes"
It'd be interesting to know how many had general fatigue, PEM, etc.
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Fair: Media Won't Stop Psychologizing Long Covid
Media outlets that trumpet their journalistic integrity have used their prestige to launder an unproven, anti-science conspiracy theory abou
Screenshot from latest Science for ME weekly update
NPC = Non-Player Character