ME/CFS for 40 years, at times extremely severe, somewhat better with slowing down
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 40 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I’ve had ME/CFS for 40 years.
In context ↗ - At worst: Very severe
At times, my ME has been extremely severe
In context ↗ - Now: Somewhat better
I still have established a life, albeit limited
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Sandpiper 49550 was diagnosed with ME/CFS in 1985 and has lived with it for about 40 years, at times extremely severely. Non-restorative sleep and PEM continued, and they could not walk far, spent many daytime hours lying down and lost career prospects. No medication or treatment strategy truly worked; they credit slowing down to stay within their PEM limits with the limited life they built.
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What they tried
What they credit
Also tried
Their words about each treatment
- not exceed the PEM limits / slowing way down · Helped
I’ve learned to not exceed the PEM limits and in slowing way down, I still have established a life, albeit limited
In context ↗ - window installed air conditioning unit and quiet fan · Helped
A truly silent fan (no blades) plus a very quiet window unit can work very well together.
In context ↗
Approaches: Pacing
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. 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 |
|---|---|---|---|
| 1985 | diagnosed with ME/CFSI was diagnosed in 1985In context ↗ | Not stated | |
| — | ME extremely severe at timesAt times, my ME has been extremely severeIn context ↗ | Very severe | |
| 2026-06-04 | stays within PEM limits, limited lifeI’ve learned to not exceed the PEM limits and in slowing way down, I still have established a life, albeit limitedIn context ↗ | Moderate | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The sleep issue, non-restorative sleep continues for me, as has PEM.
In context ↗ - Sleep problems
The sleep issue, non-restorative sleep continues for me
In context ↗ - Light & noise sensitivity
I’m significantly affected by both noise and heat
In context ↗ - Anxiety & low mood
Same, I recognize it now and try and remind myself that it doesn’t last, although it comes on intensely, usually at the end of day/evening
In context ↗
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