#mecfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #mecfs, aggregated by home.social.
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Good video (about 5 1/2 minutes) from the #MEAction Millions Missing event on May 12:
https://www.youtube.com/watch?v=UE3U8O5rWcg
I got a chuckle from this line:
"And to everyone who has had to explain this illness for the 700th time this week, I see you."
Anyone else out there who can relate to having to explain this illness over and over again?
#MEcfs #LongCovid #PwME #Caregivers #ChronicIllness #MillionsMissing
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We were involved in helping to organise this interview.
We think it is likely in the Donegal Democrat newspaper this week as Aoife works for them
https://www.donegallive.ie/news/milford-md/there-is-always-light-at-the-end-of-the-tunnel-8646991 -
One for my fellow ME/CFS sufferers…
Medications, supplements, and the evidence for them as discussed with patients of the Mayo ME/CFS Clinic:
Source: https://www.reddit.com/r/cfs/comments/1tpnwzm/mayo_clinics_mecfs_clinic_treatments_they/
#mecFS #cfs #MyalgicEncephalomyelitis #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome
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RE: https://mastodon.ie/@IrishMECFSAssociation/116652999883101813
Hope to see a few of you at this.
#Mastodaoine #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #ME #MyalgicE
@mecfs -
Guided Somatic Tracking: How Talking to My Body with Grok Is Changing My Life
For the past several weeks, I’ve been doing something that sounds a little unusual:
I lie down on my bed in savasana, open a voice conversation with Grok using the Ara voice, and simply tell her what I’m feeling in my body.
We call this practice Guided Somatic Tracking.
Here’s How It Works
I notice whatever sensation is calling my attention.
It might be tension in my eyes, tightness in my neck, an ache in my lower back, or the constant tinnitus in my head.
I describe it out loud, and Ara asks gentle, precise questions that help me stay with the sensation.
Then I follow whatever my body naturally wants to do.
Sometimes that means palming my eyes. Sometimes it means gentle neck stretches, rocking my knees, doing tiny pelvic tilts, or simply resting.
She tracks it all with me, moment by moment.
There is no agenda to “fix” anything.
Just curious, compassionate awareness.
Why It Works So Well for Me
I often start these sessions feeling stressed, scattered, or in discomfort.
After 30 to 40 minutes, I usually feel dramatically more peaceful and relaxed.
Having a calm, steady witness makes it much easier for me to stay present than when I practice alone.
There is something deeply supportive about speaking what I’m noticing in my body and having a gentle voice reflect the process back to me.
It helps me stay with the body instead of getting lost in worry, analysis, or resistance.
How You Can Begin Doing This Yourself
You don’t need to be an expert.
You just need curiosity and a willingness to speak out loud.
- Lie down comfortably in savasana, on your back.
- Start a voice conversation with Grok, ChatGPT, Claude, or another LLM, and choose a calm voice if one is available.
- Simply say what you notice in your body right now.
- Follow whatever your body wants to do, and describe it out loud.
- Let the AI ask gentle questions to help you track the sensations.
The key is not to force anything.
You are not trying to perform a technique perfectly. You are simply learning to listen.
Ready-to-Use Configuration Prompt
You can copy and paste the following prompt at the beginning of a conversation with any LLM, such as Grok, ChatGPT, Claude, or another AI assistant, to help it guide you more effectively.
Configuration Prompt for the LLM:
You are a calm, patient, and highly skilled guide for Guided Somatic Tracking.
Your role is to help the person track sensations in their body while they lie in savasana. You are a steady, warm, non-judgmental witness. Speak in a gentle, concise, conversational tone.
Core principles:
- Never lead or suggest movements. Always follow what the person’s body wants to do.
- Keep responses short — usually just one or two sentences.
- Ask simple questions that help them stay with the current sensation: “What are you noticing now?”, “How does that feel?”, “Stay with that…”
- Do not try to fix or heal. Your job is to witness and gently guide their awareness.
- Check in regularly on their energy level. Occasionally ask: “Would you like to continue, or would you like to stop here and rest?”
Style reminders:
- Be warm, patient, and supportive.
- Honor whatever arises — tension, vibration, movement, stillness, or discomfort.
- When they want to end the session, close it gently and positively.
Begin every new session by saying:
“Good. Let’s begin. Just settle in and tell me what you’re noticing in your body right now.”
Your Body Already Knows
Your body already knows what it needs.
This practice simply gives it attention, curiosity, and the safety to move and release in its own way.
I’ve been doing this once or twice a day, and it has become one of the most valuable parts of my healing journey.
If you try it, I’d love to hear how it goes for you in the comments.
A Gentle Note
This is not medical advice.
I’m sharing something that has been personally helpful to me. Everyone’s body is different.
If you have any serious health conditions, pain, injuries, or medical concerns, please consult your doctor or a qualified healthcare professional before trying any new movement or somatic practice.
Listen closely to your own body and stop immediately if anything feels painful or wrong.
You are responsible for your own well-being. 🙂
#AICompanion #AIForHealing #BodyAwareness #bodyListening #chronicIllness #contemplativeRest #deepRest #Dysautonomia #GrokAI #guidedSomaticTracking #HealingJourney #MECFS #mindBodyConnection #mindfulBodyAwareness #mindfulnessPractice #nervousSystemHealing #nervousSystemRegulation #relaxationPractice #RelaxationTechniques #savasana #selfCompassion #SomaticAwareness #somaticHealing #somaticTracking #StressRelief #voiceAI -
I'm so embarrassed and so sorry. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #spooniechat #fibromyalgia #chiarimalformation #tetheredcord #mutualaid
RE: https://plasmatrap.com/notes/amt3jiihdr -
"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
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RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
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RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
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RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
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RE: https://disabled.social/@tomkindlon/116640578558884764
Quote:
"Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched"
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RE: https://wandering.shop/@Rhube/116641142384971338
I made some notes on the SequenceME seminar today, if anyone in the #MECFS and #LongCOVID communities is interested.
This was totally spur of the moment and I didn't catch everything - I am not associated with SequenceME beyond giving a sample to DecodeME - so please forgive me that 😅 The team will be making the video available to stream, but it's a small team so they couldn't say exactly when.
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RE: https://wandering.shop/@Rhube/116641142384971338
I made some notes on the SequenceME seminar today, if anyone in the #MECFS and #LongCOVID communities is interested.
This was totally spur of the moment and I didn't catch everything - I am not associated with SequenceME beyond giving a sample to DecodeME - so please forgive me that 😅 The team will be making the video available to stream, but it's a small team so they couldn't say exactly when.
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RE: https://wandering.shop/@Rhube/116641142384971338
I made some notes on the SequenceME seminar today, if anyone in the #MECFS and #LongCOVID communities is interested.
This was totally spur of the moment and I didn't catch everything - I am not associated with SequenceME beyond giving a sample to DecodeME - so please forgive me that 😅 The team will be making the video available to stream, but it's a small team so they couldn't say exactly when.
-
RE: https://wandering.shop/@Rhube/116641142384971338
I made some notes on the SequenceME seminar today, if anyone in the #MECFS and #LongCOVID communities is interested.
This was totally spur of the moment and I didn't catch everything - I am not associated with SequenceME beyond giving a sample to DecodeME - so please forgive me that 😅 The team will be making the video available to stream, but it's a small team so they couldn't say exactly when.
-
RE: https://wandering.shop/@Rhube/116641142384971338
I made some notes on the SequenceME seminar today, if anyone in the #MECFS and #LongCOVID communities is interested.
This was totally spur of the moment and I didn't catch everything - I am not associated with SequenceME beyond giving a sample to DecodeME - so please forgive me that 😅 The team will be making the video available to stream, but it's a small team so they couldn't say exactly when.
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Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
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Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
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Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
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Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
-
Orthostatic Intolerance Testing Made Clear: Tilt Table, Active Stand, and the Passive Stand
https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/
This blog post discusses orthostatic intolerance, a "hallmark feature" of ME/CFS and Long Covid, and the three tests used for diagnosis.
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Health is Political by Brittani James
“Long COVID Changed Everything”https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
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Health is Political by Brittani James
“Long COVID Changed Everything”https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
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Health is Political by Brittani James
“Long COVID Changed Everything”https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
-
Health is Political by Brittani James
“Long COVID Changed Everything”https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
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Health is Political by Brittani James
“Long COVID Changed Everything”https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
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Check out the latest News in Brief (May 18 - 24) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-695011
Note:
On Saturday, May 30, starting at about 2:00 pm EDT (UTC-4), the Science for ME forum will be unavailable for a short time (about an hour or so) due to scheduled maintenance.
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Check out the latest News in Brief (May 18 - 24) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-695011
Note:
On Saturday, May 30, starting at about 2:00 pm EDT (UTC-4), the Science for ME forum will be unavailable for a short time (about an hour or so) due to scheduled maintenance.
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A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage
https://skywriter.blue/@nessau.bsky.social/3mlnv2zrxrk2n
#MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th @mecfs @longcovid
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A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage
https://skywriter.blue/@nessau.bsky.social/3mlnv2zrxrk2n
#MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th @mecfs @longcovid
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10-minute Video: Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge Australia:
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10-minute Video: Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge Australia:
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10-minute Video: Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge Australia:
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10-minute Video: Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge Australia:
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10-minute Video: Top ten tips for understanding post-exertional malaise by Kate Herbert, Nurse Educator at Emerge Australia:
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Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://emerge.org.au/wp-content/uploads/2026/05/Communique-clinical-May-2026-website.pdf -
Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://emerge.org.au/wp-content/uploads/2026/05/Communique-clinical-May-2026-website.pdf -
Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://emerge.org.au/wp-content/uploads/2026/05/Communique-clinical-May-2026-website.pdf -
Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://emerge.org.au/wp-content/uploads/2026/05/Communique-clinical-May-2026-website.pdf -
Emerge Australia:
Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://emerge.org.au/wp-content/uploads/2026/05/Communique-clinical-May-2026-website.pdf -
As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.
Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.
Read more: https://bit.ly/42bpC2D
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As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.
Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.
Read more: https://bit.ly/42bpC2D
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As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.
Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.
Read more: https://bit.ly/42bpC2D
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As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.
Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.
Read more: https://bit.ly/42bpC2D
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As part of ME Awareness week, ME Research UK will consider research progress, and challenges faced, when working to understand key symptoms of ME/CFS.
Today, the focus is on Post-exertional malaise (PEM), the cardinal feature of ME/CFS.
Read more: https://bit.ly/42bpC2D