ME/CFS nearly 10 years, worsening, wheelchair to go out, therapy for acceptance
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
I don't have long covid but ME, for almost 10 years now.
In context ↗ - At worst: Severe
I have an electric wheelchair with which I can leave the house about once every couple of weeks. I do a lot of bed-yoga.
In context ↗ - Now: No benefit
Physically I unfortunately only got worse over time.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Falcon 24853 got ME at age 15 and had been ill for almost 10 years by 2024, not diagnosed until six years in. Physically they only worsened over time, and by 2024 used an electric wheelchair to leave the house every couple of weeks and did bed-yoga; therapy helped them accept the illness, though they still had grief. In 2025 they had a worsening, worse than previous times, but returned to baseline after about a week.
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What they tried
Also tried
Their words about each treatment
- Pilates with Actively Autoimmune · Not said
Pilates with Actively Autoimmune, and yoga with 360MindBodySoul.
In context ↗ - Yoga (360MindBodySoul classes and bed-yoga) · Not said
yoga with 360MindBodySoul. ... I do a lot of bed-yoga.
- Therapy · Helped
accepting that I was ill took another 2 with therapy
In context ↗ - Sticking arms up in the air · Helped
I have it too, sticking my arms up in the air helps
In context ↗ - COVID vaccination as treatment · Not said
I had the same experience, definitely worse than last times. But luckily I got back to baseline after a week or so.
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 chart starts 10 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| age 15 | got MEI got ME when I was 15, so I literally never had an adult life lol. I'm now 25.In context ↗ | Not stated |
| 2024-08-18 | mostly housebound, wheelchair for outingsI have an electric wheelchair with which I can leave the house about once every couple of weeks. I do a lot of bed-yoga.In context ↗ | Severe |
| 2024-07-10 | only worse physically over the yearsPhysically I unfortunately only got worse over time.In context ↗ | Severe |
| 2025-11-10 | worse after Pfizer vaccine, back to baseline in about a weekI had the same experience, definitely worse than last times. But luckily I got back to baseline after a week or so.In context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“I had the same experience, definitely worse than last times. But luckily I got back to baseline after a week or so.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
Might be blood pooling related to POTS / dysautonomia. I have it too, sticking my arms up in the air helps
In context ↗