ME/CFS at 30-40% effective, remission in Europe, then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 16 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
mine started 16 years ago (after epstein barr) and gets gradually better each year
In context ↗ - At worst: Moderate
normally I feel I have 25% of my normal energy and everything I do is 3-3.5 times as much difficulty
In context ↗ - Now: Relapsed
the cfs came back. but I didnt crash hard hard. I just became in the middle again.
In context ↗ - Began after: glandular fever or EBV
mine started 16 years ago (after epstein barr)
Read from 14 of their posts and comments; links to the 7 this page draws on
Summary
Had CFS from 2010 after Epstein-Barr; by 2026 they were at 30-40% effective, tired all day and scheduling showers to conserve energy. A month in Europe brought a remission: they felt normal, showered daily and stayed awake 35 hours easily, though a medication change made them slightly manic. The CFS later returned, leaving them slightly tired but not severe. They thought Adderall, caffeine and stress caused chest pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- Adderall and vyvanse · Not said
I have been taking Adderall and vyvanse to try and prop me up. In the past Ritalin a d methylphenidate.
In context ↗ - conserving energy resources · Not said
I would conserve my energy resources the whole day to prepare for it.
In context ↗ - energy drink with 120mg caffeine and Guarana · Worse
I think the Adderall, caffeine, and stress combined to give me the chest pain.
In context ↗ - music playlist · Helped
I created a playlist to help push me to cope with CFS and get up and get things done. It works for me.
In context ↗ - travel to europe · Helped a lot
I traveled to europe for a month and it gradually got better.
In context ↗ - gradual improvement year on year · Helped
every year for 16 years it has gotten about 3% better.
In context ↗ - lithium · Not said
I increased the lithium like my doctor said.
In context ↗
Approaches: Mould avoidance
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 16.6 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 |
|---|---|---|
| 2010 | CFS began after Epstein-Barrmine started 16 years ago (after epstein barr) and gets gradually better each year.In context ↗ | Not stated |
| 2026-08-09 | still only 30-40% effective, tired all the time, showering had to be scheduledI am so tired all the time and only 30-40% effective.In context ↗ | Moderate |
| 2026-09-18 | CFS gone after a month in Europe; felt normal and showered dailymy chronic fatigue syndrome is gone ... now it isnt perceptibly difficult in any way.In context ↗ | Recovered |
| 2026-09-27 | CFS came back, mid-level, slightly tiredthe cfs came back. but I didnt crash hard hard. I just became in the middle again. slightly tired but not severe.In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“a feeling of really intense pressure started crushing my chest. It spread through to my back.” In context ↗ Other
- Amphetamine salts (Adderall)“But my blood pressure is out of control (from the Adderall?)” In context ↗ Other
- “My medication change made me slightly manic.” In context ↗ Mood or psychiatric effects
- Lithium carbonate (prescription)“I increased the lithium like my doctor said. ... I drank ten liters in one day after increasing it.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM is not a prominent feature in my presentation. ... the next day I only left bed to use the restroom and receive food I ordered.
In context ↗ - Sleep problems
I can't sleep since my dog passed I only got four hours of sleep before the doctor's appointments.
In context ↗ - Pain & fibromyalgia
every muscle from my hip to my neck aches.
In context ↗ - Heart symptoms & palpitations
a feeling of really intense pressure started crushing my chest.
In context ↗
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