ME/CFS
Severe → no benefit
Mostly bedbound with ME/CFS, no improvement from what they tried
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
ive only recently understood that i have cfs
In context ↗ - At worst: Severe
I am mostly bed bound only being able to walk to the bathroom and then sit down
In context ↗ - Now: No benefit
My doctor said I should do graded exercise. So i did. Now im bedbound.
In context ↗
Read from 20 of their posts and comments; links to the 15 this page draws on
Summary
A UK 19-year-old had had ME/CFS for a while without acknowledging it, managing about five good hours of energy a day. A five-day swimming trip caused a crash; after a doctor advised graded exercise they became mostly bedbound, able to walk only to the bathroom. A hired wheelchair let them get out, and dark glasses, an eye mask and resting flat in a dark room eased symptoms somewhat.
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What they tried
Also tried
wheelchair· Helped a lotsitting in a dark room with an audio book or podcast· Helpedsuper dark sunglasses· Helpedheated blanket· Helpedeye mask and ANC headphones while laying flat· Helpedfermented food like sauerkraut and lots of protein· Helpedeating less (under 1200kcal a day)· No changeshort walks· Worseliquid medicine· Worsegraded exercise / moderate exercise· Much worse
Their words about each treatment
- eating less (under 1200kcal a day) · No change
even after 5 months of less than 1200kcal a day, I'm gaining weight
In context ↗ - short walks · Worse
I walked for 12 mins today and fell right asleep as soon as I got home so I think that's a bit too much
In context ↗ - graded exercise / moderate exercise · Much worse
My doctor said I should do graded exercise. ... Now im bedbound.
In context ↗ - liquid medicine · Worse
after I had some disgusting liquid medicine, I got really tired and grumpy
In context ↗ - wheelchair · Helped a lot
it was awsome it was like if you had a headache that lasted months and then taking a miracle medicine that made it go away!
In context ↗ - sitting in a dark room with an audio book or podcast · Helped
I have improved by just sitting in a dark room with an audio book or a podcast on and it's helped me feel better
In context ↗ - super dark sunglasses · Helped
I have started just wearing super dark sunglasses all the time! I look mad but I don't get as bad headaches anymore
In context ↗ - heated blanket · Helped
Heated blankets really help with joint pain!
In context ↗ - eye mask and ANC headphones while laying flat · Helped
Forcing myself to wear an eye mask and anc headphones, while laying flat on my bed for a few days really helped.
In context ↗ - fermented food like sauerkraut and lots of protein · Helped
I also ate fermented food like sauerkraut, and had lots of protein.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | long-standing ME/CFS, not acknowledgedI've had cfs for a while, but I have denied it, and its not been as obviousIn context ↗ | Not stated | |
| 2026-05-19 | crashed after a 5-day swimming trip with friendsafter a swimming trip with my friends for 5days, ive had a backlash and ive suddenly got no energyIn context ↗ | Severe | |
| 2026-05-31 | recovering from the post-swimming crashive been recovering from a pem session, and ive been getting betterIn context ↗ | Moderate | |
| 2026-08-18 | hired a wheelchair from the library for a dayit was like if you had a headache that lasted months and then taking a miracle medicine that made it go awayIn context ↗ | Moderate | |
| 2026-08-29 | became bedbound after doing graded exercise on a doctor's adviceMy doctor said I should do graded exercise. So i did. Now im bedbound.In context ↗ | Severe | Graded exercise therapy (GET) |
| 2026-09-26 | baseline improved after days lying flat in the dark with eye mask and headphonesForcing myself to wear an eye mask and anc headphones, while laying flat on my bed for a few days really helped ... it made my baseline betterIn context ↗ | Severe | Radical rest |
Adverse events
- “I went under 800kcal for a month and lost weight but I was really depressed” In context ↗ Mood or psychiatric effects
- “after I had some disgusting liquid medicine, I got really tired and grumpy” In context ↗ Side effects
- Graded exercise therapy (GET)“Doctor told my parents(who already made me exercise because they refused to understand my illness) that I need to do moderate exercise and now I'm in a wheelchair.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“My doctor said I should do graded exercise. So i did. Now im bedbound.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- Sleep problems
Insomnia is an awful part of pem
In context ↗ - Pain & fibromyalgia
Heated blankets really help with joint pain!
In context ↗ - POTS & dysautonomia
I still feel really dizzy though, I only dont feel dizzy if my legs are up
In context ↗ - Headaches & migraine
I don't get as bad headaches anymore
In context ↗ - Light & noise sensitivity
I have started just wearing super dark sunglasses all the time!
In context ↗ - Flu-like symptoms
it helps me feel less sick/feverish
In context ↗ - Anxiety & low mood
I have agoraphobia which is annoying
In context ↗