Moderate ME/CFS with flare-ups, somewhat better after ADHD medication and POTS/MCAS care
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I’m been living with ME/CFS since being diagnosed in 2017.
In context ↗ - At worst: Moderate
My cfs is moderate most of the time (although I’m currently recovering from quite a severe crash.)
In context ↗ - Now: Somewhat better
My ME has certainly not disappeared and I still experience my usual symptoms however, I don’t seem to have as many ME flare ups anymore.
In context ↗ - Began after: glandular fever or EBV
I had a really bad case of glandular fever in 2016 which was brought on by stress
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A UK user developed ME/CFS after glandular fever in 2016, diagnosed in 2018. They worked full time but were often off sick with flare-ups, called their ME moderate, and thought they were in remission in 2022 before stress brought it back. ADHD medication (50 mg Elvanse) reduced their flare-ups, and treating newly found ADHD, POTS and suspected MCAS brought what they called massive improvement, though ME symptoms remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- group CBT sessions focusing on pacing · No change
I have been to group CBT sessions focusing on pacing and “living” with ME/CFS which were of little help.
In context ↗ - eating well · Helped
I always feel better when I eat well but it’s hard!
In context ↗ - Elvanse (Vyvanse) · Helped
I have settled on 50mg Elvanse (Vyvanse). ... I don’t seem to have as many ME flare ups anymore.
In context ↗
Approaches: Stimulants
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 6 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 | After |
|---|---|---|---|
| 2016 | glandular fever at university, never fully recoveredI had a really bad case of glandular fever in 2016 which was brought on by stress and have never fully recovered.In context ↗ | Not stated | |
| 2022 | low-stress period; thought ME was in remissionI had very little in the way of responsibilities or stressors, and genuinely thought I was in remission from my ME.In context ↗ | Mild | |
| 2024-10 | severe crashMy cfs is moderate most of the time (although I’m currently recovering from quite a severe crash.)In context ↗ | Severe | |
| 2025-05 | big life stressors; remission endedFast forward to now, a lot of big stressors in my life. The “remission” didn’t last.In context ↗ | Moderate | |
| 2026-04 | settled on 50 mg Elvanse; fewer ME flare-upsI don’t seem to have as many ME flare ups anymoreIn context ↗ | Mild | Lisdexamfetamine (Vyvanse, Elvanse) |
| 2026-09-17 | massive improvement after treating ADHD, POTS and suspected MCAS; ME symptoms remainI’ve seen massive improvement treating my ADHD, POTs and MCAS.In context ↗ | Mild |
Adverse events
- Lisdexamfetamine (Vyvanse, Elvanse)“All I start to notice is that I’m slightly more tired and less motivated when it wears off.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’m in a constant boom bust cycle with little to no energy to live my life
In context ↗ - POTS & dysautonomia
it turns out I have ADHD, POTs, HSD (possibly HEDs)
In context ↗
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