Bedbound with ME/CFS, now much better after the Perrin technique and mind-body work
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I (30, F) got diagnosed with ME/CFS in September after getting long covid in March 2020
In context ↗ - At worst: Severe
I spent 5 years in a relatively mild category ... before everything came to a grinding halt last summer and I became much more severe
In context ↗ - Now: Much better
I’ve gone from basically bedbound to now being able to get out and about, do light walks, go to the cinema and out for dinner etc etc
In context ↗ - Began after: COVID
after getting long covid in March 2020
Summary
A woman in the UK got long COVID in March 2020 and spent five years mildly affected until a worsening in summer 2025; by September she had stopped working, moved in with her parents and was basically bedbound. From September 2025 she did the Perrin technique with Dr Perrin in Manchester plus mind-body work, JournalSpeak, breathwork and yoga nidra. After a miserable first few months she improved to 6/10 on Perrin's scale, walking daily, brain fog lifting, expanding slowly.
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What they tried
What they credit
Also tried
Their words about each treatment
- cranial osteopathy (Perrin technique) · Helped a lot
The Perrin technique - this has changed my life
In context ↗ - Mind body work and somatic tracking · Helped
Mind body work and responding well to symptoms
In context ↗ - journalspeak · Helped
doing journalspeak every day to help with deep buried emotional stuff
In context ↗ - Suzy Bolts RRR · Helped
Joining Suzy Bolts RRR for nervous system regulation through breathwork, tapping, yoga nidra
In context ↗ - tracking devices · Worse
removed all tracking devices as they can cause hyper-vigilance and make things worse
In context ↗
Approaches: Alternative therapies · Brain retraining · Mind-body practices
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. 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 |
|---|---|---|---|
| March 2020 | long COVID onset; five years of relatively mild ME/CFSI spent 5 years in a relatively mild category and sort of ignoring it as best I couldIn context ↗ | Mild | |
| summer 2025 | big crash; stopped work, moved back in with parentseverything came to a grinding halt last summer and I became much more severeIn context ↗ | Severe | |
| autumn 2025 | felt very unwell in the first months of the Perrin technique, mostly in bedthe first few months of treatment (for me) were miserable and I felt so unwell and basically stayed in bed for most of itIn context ↗ | Severe | |
| April 2026 | big uplift; gentle daily walks, cinema, dinners out, brain fog liftedI’m now doing gentle walks daily and my brain fog has lifted, my fatigue is so much better than it wasIn context ↗ | Mild | Manual lymphatic drainage |
Adverse events
- Manual lymphatic drainage“the first few months of treatment (for me) were miserable and I felt so unwell and basically stayed in bed for most of it.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
terrible brain fog, PEM, headaches, inflammation, POTS type symptoms
In context ↗ - Brain fog
my brain fog has lifted
In context ↗ - Headaches & migraine
I have some days where I’m symptom free, no headaches
In context ↗ - POTS & dysautonomia
POTS type symptoms
In context ↗
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