ME/CFS for 30 years, worse after COVID, no benefit from exercise physiologist
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 30 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
Had CFS for about 30 years.
In context ↗ - At worst: Moderate
so I can return to things like walking and coping with daily life
In context ↗ - Now: No benefit
Had CFS for about 30 years. But COVID has made it even worse.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Birch 19746 had had CFS for about 30 years by January 2026, and said COVID had made it even worse. From around May 2025 they worked with an exercise physiologist twice weekly, going slowly and checking recovery in a spreadsheet, and their energy improved a little. By January 2026 they still described the illness as worse than before COVID.
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What they tried
Also tried
Their words about each treatment
- Exercise Physiologist · Helped
seriously working with an Exercise Physiologist is one of the best things I’ve ever found. Actually improving my energy, even if it is just a little and a slow process.
In context ↗
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. The first step with a time is 29.3 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| onset | CFS began about 30 years before 2026Had CFS for about 30 years.In context ↗ | Not stated | |
| — | COVID on top of longstanding CFS made things worseUnfortunately my experience seems to point to yes, things may get worse.In context ↗ | Moderate | |
| 2025-06-16 | Started twice-weekly exercise physiology, built up slowlyso far I think the guidance of the EP is really helping me to build my resilience and fitnessIn context ↗ | Mild | Graded rehab and self-made programmes |
| 2026-01-05 | Still had CFS, worse since COVIDHad CFS for about 30 years. But COVID has made it even worse.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
have suspected long COVID/CFS and also MCAS
In context ↗