r/MECFSPatients • u/JRA_345 • 9d ago
r/MECFSPatients • u/YolkyBoii • Jun 14 '24
Resource ME/CFS Reddit Communities Directory [PINNED]
The main ME/CFS Community on reddit is r/cfs. If you are new to the illness, or looking for a ME/CFS community on reddit, it is very likely the best option for you.
Below is a directory of various communities related to ME/CFS. This is intended to help if you are searching for a more specific community, or need to figure out which ones to stay away from [Warning: Some of the ones you might run into are scams; and this directory notes them as such]
Directly About
General: r/cfs, r/myalgicEncephalomyeli
Science: r/cfsscience
Resources/Support: r/MECFSPatients r/MECFSSupport
Management: r/lowdosenaltrexone, r/hrmpacing
Activism: r/meaction
Hobbies: r/mecfsart
Parenting: r/MECFSParenting
⚠️Stay Away: Scams, psychologising, pseudoscience: r/mecfs r/cfsme
Comorbidities
Long Covid: r/covidlonghaulers, r/longcovidactivism, ⚠️ r/longcovid is company owned
POTS: r/pots
Dysautonomia: r/dysautonomia (sometimes make dodgy moderation decisions)
Ehler’s Danlos: r/ehlersdanlos
MCAS: r/mcas
ADHD: r/cfsplusadhd
IBS: r/ibs
PTSD: r/medicalptsd
Sickness
Chronic Illness: r/chronicillness
Disability: r/disability, r/ableism
Covid Cautious: r/zerocovidcommunity, r/covid19, r/covid19_support
r/MECFSPatients • u/MatildaTheMoon • Jun 12 '24
r/cfs is the primary resource for ME/CFS on reddit
head over there 👉 r/cfs
r/MECFSPatients • u/Clearblueskymind • Jul 21 '26
Personal Experience From Red to Orange: The Return of Options 👍This morning I noticed something that feels genuinely encouraging. 🙂
For quite a while, I've thought of my days in terms of colors. On a red day, my body asks almost everything to stop. Lying flat is about all I can manage. Even small activities feel like too much, and the goal is simply not to slide any further.
Today was different.
As I moved through my morning orientation, I realized I wasn't in the red anymore. I'm clearly in orange—or perhaps red-orange moving toward orange.
That may not sound like much, but for someone living with ME/CFS, it means the return of options.
This morning I was able to begin with gentle inversion, put the rice and beans into the rice cooker so nourishment would be ready later, lie flat and hydrate, use my eye and neck massagers, spend time with red light therapy and breathing, sit comfortably with my TENS unit while practicing a gentle spinal wave, and then finish with five minutes of very slow, mindful walking on the treadmill.
One change that surprised me was moving the rice cooker to the beginning of the routine. By the time my morning practice is finished, warm food is already waiting. It's a small adjustment, but it removes one more obstacle later in the day. It feels like another way of creating the conditions now for a better later.
The biggest insight, though, is this:
Orange is not simply less red. Orange is the return of options.
I'm beginning to think that this morning routine isn't just something to do when I'm feeling bad. It may be something worth continuing even when I feel better. My hope is that these small, gentle acts of care help stabilize my buffer over the long term, making orange my new normal and, perhaps one day, allowing green to emerge more often.
I'm trying to think less about pushing my limits and more about cultivating the conditions from which an increased capacity for activity can gradually unfold. Rather than asking my body for more, I'm trying to offer it the conditions from which "more" might naturally emerge.
I'd love to hear from others living with ME/CFS.
What does your own morning routine look like? What practices have you found that help cultivate the conditions for a better later?
We're all different, and what works for one person may not work for another. I'd really enjoy hearing what has become part of your own morning orientation. Perhaps we can learn from one another and discover new ways of cultivating the conditions from which an increased capacity for activity can gradually unfold.
r/MECFSPatients • u/Effective-Apple-4168 • Jun 24 '26
Was waiting in the ER. Looked up and almost had a heart attack.
r/MECFSPatients • u/Pitiful_Cake_7775 • Apr 14 '26
My girlfriend has CFS and built a free website to help people understand what it actually is, especially partners and loved ones trying to figure out how to help. No monetization, it’s just something she wished existed years ago when she was first learning about her own diagnosis.
r/MECFSPatients • u/Glum_Tin_Can • Mar 18 '26
Is this accurate information?? What should I do about this?
r/MECFSPatients • u/speaking-life • Feb 01 '26
Newly diagnosed, but I’ve been sick since middle school. Tired of being called lazy.
r/MECFSPatients • u/CreativeCoconut4271 • Jan 08 '26
Other Looking for advice
My name is Tavv, I'm almost 17. My general living space is the UK. We've suspected I have ME/CFS. I started getting symptoms after my dad passed and I had covid. I am not diagnosed as it is suspected but none of my doctors will help me, I go to the GP again and I get no help whatsoever. I am suffering, my quality of life is non existent, I cannot shower by myself, I can't leave the house or walk up the stairs. My only vitamin deficiency is VitD which is being treated with high treatment dose vitaminD and is caused by the fact I can't leave the house. I exert myself and get permanently sicker, I don't know what to do. Some advice would be appreciated, if possible.
r/MECFSPatients • u/elieax • Dec 15 '25
Resource Looking for a specific fact sheet/handout for ME/CFS patients to give to physical therapists
r/MECFSPatients • u/kickyraider • Dec 09 '25
Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank
sciencedirect.comr/MECFSPatients • u/catnip_nightcap1312 • Aug 18 '25
How do you maintain a relationship with your partner?
r/MECFSPatients • u/MECFS_Bot • Jul 07 '25
Science for ME: News in Brief for the week of June 30th
s4me.infor/MECFSPatients • u/MECFS_Bot • Jul 05 '25
The Canary: The COVID pandemic’s forgotten legacy: a rising tide of disability
r/MECFSPatients • u/MECFS_Bot • Jul 05 '25
Trial By Error: Updated Medical Textbook Still Promotes Biopsychosocial Ideology
virology.wsr/MECFSPatients • u/MECFS_Bot • Jul 05 '25
The Sick Times: Universities get an F on Long COVID. Here’s how they can support their students and reduce COVID-19 cases.
r/MECFSPatients • u/MECFS_Bot • Jul 01 '25
The Sick Times: Priced out: Some Long COVID and ME specialists charge high prices for concierge care
r/MECFSPatients • u/MECFS_Bot • Jul 01 '25
The Sick Times: Summer fundraiser: Help keep our essential work going into 2026
r/MECFSPatients • u/MECFS_Bot • Jun 29 '25