ME/CFS
Severe → no benefit
95% bedridden with ME/CFS, no improvement; more comfort from online groups than therapy
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jan 2024
In their words
- At worst: Severe
I’ve been 95% bedridden for the past 6 weeks. I can only get up to go to the bathroom.
In context ↗ - Now: No benefit
I did clean my bathroom one day when I had a surge of energy and have once again been bedridden since.
In context ↗
Read from 2 of their posts and comments; links to the one this page draws on
Summary
The user reported being 95% bedridden for six weeks by January 2024, able to get up only to reach the bathroom and having showered about three times in that time. Cleaning the bathroom on a day with a surge of energy put them back in bed, and they felt their therapist, who pushed them to force themselves out of bed, was making things worse. They said they got more comfort from Facebook groups and Reddit than from therapy or doctors.
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What they tried
Also tried
Their words about each treatment
- therapy · Worse
Therapist is making it worse and making me feel bad with advice like forcing self to get out of bed
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| six weeks before 2024-01-11 | 95% bedridden, only up to the bathroomI’ve been 95% bedridden for the past 6 weeks. I can only get up to go to the bathroom.In context ↗ |
| one day during those six weeks (as of 2024-01-11) | cleaned the bathroom on a surge of energy, bedridden again sinceI did clean my bathroom one day when I had a surge of energy and have once again been bedridden since.In context ↗ |
| 2024-01-11 | still bedridden, therapy and doctors not helpingAny tips to make life better while bedridden. I’ve been 95% bedridden for the past 6 weeks.In context ↗ |
Adverse events
- CBT and psychotherapy“Therapist is making it worse and making me feel bad with advice like forcing self to get out of bed, I just can’t do that.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I did clean my bathroom one day when I had a surge of energy and have once again been bedridden since.
In context ↗ - Anxiety & low mood
just feeling so discouraged
In context ↗