ME/CFS
No benefitNeeds ongoing treatment
Bedbound with severe ME/CFS, still very severe after pacing and new medications
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
they both insisted my severe ME is caused by deconditioning and ruthlessly pushed GET
In context ↗ - Now: No benefit
i am very severe and bedbound because i listened to their advice (GET, brain retraining, etc)
In context ↗
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
A Reddit user with severe ME/CFS became bedbound after following doctors' exercise and brain-retraining advice, and learned pacing on their own. In May 2026 they had about a month of improvement on new medications, then washing their hair triggered a bad crash with fever, pain and near-fainting. Further crashes followed disturbed sleep and distress, and by late 2026 they remained very severe and bedbound.
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What they tried
Also tried
eating as healthily as you can· Helpednew medications· Helpedweed· Helpedantidepressants· WorseGET· Much worsebrain retraining· Much worsepacing· Not said
Their words about each treatment
- GET · Much worse
my doctors gave me similar advice and i listened. i am now bedbound due to the constant crashes
In context ↗ - brain retraining · Much worse
i am very severe and bedbound because i listened to their advice (GET, brain retraining, etc)
In context ↗ - pacing · Not said
had to learn about pacing all on my own
In context ↗ - eating as healthily as you can · Helped
this. and eating as healthily as you can
In context ↗ - new medications · Helped
i’ve been on some new medications that seem to actually be helping me and been on an upward trajectory for about a month
In context ↗ - antidepressants · Worse
the medications he prescribed me (antidepressants) made my POTS worse
In context ↗ - weed · Helped
weed helps a bit , not with the pain but it helps me dissociate
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2026-05-02 | bedbound after following doctors' exercise advicemy doctors gave me similar advice and i listened. i am now bedbound due to the constant crashes. had to learn about pacing all on my own.In context ↗ | Very severe | Graded exercise therapy (GET) |
| 2026-05-14 | about a month of upward trajectory on new medicationsi’ve been on some new medications that seem to actually be helping me and been on an upward trajectory for about a monthIn context ↗ | Severe | |
| 2026-05-14 | crashed after washing long hairnearly passed out on the way back to my bed ... now it’s the next day and i can barely moveIn context ↗ | Very severe | |
| 2026-07-11 | crashed after cat disturbed sleepmy cat woke me up early this morning and messed up my sleep. now im crashing and everything is ruinedIn context ↗ | Very severe | |
| 2026-09-01 | hard crash from devastation and hopelessnessi am crashing hard because of how devastated and hopeless i feel right nowIn context ↗ | Very severe | |
| 2026-09-01 | very severe and bedboundi am very severe and bedbound because i listened to their advice (GET, brain retraining, etc)In context ↗ | Very severe |
Adverse events
- Graded exercise therapy (GET)“my doctors gave me similar advice and i listened. i am now bedbound due to the constant crashes.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“the medications he prescribed me (antidepressants) made my POTS worse” In context ↗ Made symptoms worse
- Graded exercise therapy (GET), Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“i am very severe and bedbound because i listened to their advice (GET, brain retraining, etc)” In context ↗ Made symptoms worse
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“i am very severe and bedbound because i listened to their advice (GET, brain retraining, etc)” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“its just GET and ive already been put through that and it already ruined my life” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“ive already been put through that and it made my illness worse (in ways i will probably never recover from)” In context ↗ Made symptoms worse
- “he also put me on medications that are contraindicated for POTS and didn’t believe me when i told him i was having horrific side effects.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
i am now bedbound due to the constant crashes
In context ↗ - POTS & dysautonomia
the medications he prescribed me (antidepressants) made my POTS worse
In context ↗ - Pain & fibromyalgia
weed helps a bit , not with the pain
In context ↗ - Sleep problems
my cat woke me up early this morning and messed up my sleep
In context ↗ - Anxiety & low mood
now im crashing and everything is ruined. i want to die
In context ↗ - Muscle weakness
now it’s the next day and i can barely move
In context ↗