ME/CFS
Outcome unclearIll for 18 yearsNeeds ongoing treatment
Mostly bedbound with severe ME/CFS, having tried Perrin technique and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 18 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I have fibromyalgia and moderate–severe CFS.
In context ↗ - At worst: Severe
I'm now almost 30 and mostly bedbound and have been for many years.
In context ↗ - Began after: glandular fever or EBV
I got the Epstein-Barr virus as 12 and was diagnosed with post viral fatigue.
In context ↗
Read from 39 of their posts and comments; links to the 18 this page draws on
Summary
They fell ill at 12 with post-viral fatigue after Epstein-Barr, recovered after a year, then trauma and doctors' exercise advice took them from mild to severe ME/CFS. The Perrin technique slowly moved them from bedbound to housebound, but they later deteriorated into a long crash with constant PEM. LDN eased their fibromyalgia pain but not their fatigue; fasting and GET/CBT made them worse. By 2026 they were mostly bedbound.
Ask Miruvor AI
What they tried
Also tried
Perrin Technique· HelpedLDN (low dose naltrexone)· Helpedketogenic diet· Helped · wore offMeditation· HelpedAntidepressants· HelpedResting and pacing· HelpedPPIs (lansoprazole, omeprazole)· Helpedcutting back on sugar· HelpedResting aggressively· No changeFasting· Much worseGraded exercise therapy· Much worseCBT· Much worseOccupational therapy· Not saidalternative medicine· Not saidEMDR· Not saidnutritionists· Not saidsomatic and psychotherapy· Not said
Their words about each treatment
- Perrin Technique · Helped
The Perrin Technique took me from severe and completely bedbound to moderate and housebound.
In context ↗ - LDN (low dose naltrexone) · Helped
It hasn't done anything for my fatigue but it has reduced my fibromyalgia pain significantly.
In context ↗ - Fasting · Much worse
Fasting made me worse. Threw me into a major flare-up that I haven't recovered from and it's been over 5 year.
In context ↗ - ketogenic diet · Helped
I went on a ketogenic diet a few years ago and it was the best I'd felt in a while.
In context ↗ - Graded exercise therapy · Much worse
GET and CBT made me exponentially worse and took me from mild to severe.
In context ↗ - Occupational therapy · Not said
Nothing's worked. At best it has zero effect and at worse it causes deterioration.
In context ↗ - Meditation · Helped
Meditation and antidepressants keep my depression at a manageable level.
In context ↗ - Resting and pacing · Helped
resting and pacing (not exerting myself) has helped prevent my baseline from lowering further
In context ↗ - Resting aggressively · No change
I'm trying to escape it by resting aggressively (in the hope that eventually I claw back some capacity) but so far it's proving to be impossible
In context ↗ - PPIs (lansoprazole, omeprazole) · Helped
PPIs like Lansoprazole have seemed to help me the most, because stomach acid increases with hunger and triggers those awful hunger pangs.
In context ↗ - cutting back on sugar · Helped
when I cut right back on sugar it helped
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| age 12 | Epstein-Barr virus, diagnosed with post-viral fatigueI got the Epstein-Barr virus as 12 and was diagnosed with post viral fatigue.In context ↗ | Not stated |
| about a year after onset | got better from post-viral fatigueI got better after about a yearIn context ↗ | Not stated |
| — | trauma events triggered mild METhe trauma triggered mild MEIn context ↗ | Mild |
| — | doctors' exercise advice and GET/CBT took them from mild to severeGET and CBT made me exponentially worse and took me from mild to severe.In context ↗ | Severe |
| early 2025 | Perrin Technique took them from bedbound to houseboundThe Perrin Technique took me from severe and completely bedbound to moderate and housebound.In context ↗ | Moderate |
| 2026 | still severe, mostly bedbound, needs weeks to recover from anything newI'm severe enough that every time I try something new I need weeks or months just to recoverIn context ↗ | Severe |
Adverse events
- Extended water fasting (3+ days)“Fasting made me worse. Threw me into a major flare-up that I haven't recovered from and it's been over 5 year.” In context ↗ Made symptoms worse
- Perrin Technique“The Perrin Technique made me a lot worse initially. ... the side effects made me think and feel like I was dying.” In context ↗ Made symptoms worse
- Perrin Technique“I did experience pain but because of swelling. The pain was only when I was receiving the massage.” In context ↗ Side effects
- Graded exercise therapy (GET), CBT and psychotherapy“GET and CBT made me exponentially worse and took me from mild to severe.” In context ↗ Made symptoms worse
- CBT and psychotherapy“GET and CBT made me exponentially worse and took me from mild to severe.” In context ↗ Made symptoms worse
- “No, every time I've taken a vaccine I've crashed and become permanently worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“from my own personal experience, LDN can cause nausea so it's best to take it with or after food.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I still have chronic pain and extreme fatigue
In context ↗ - Anxiety & low mood
I'm still depressed and still feel existential despair on bad days
In context ↗ - Temperature regulation
Making the water lukewarm instead of hot has helped me avoid temperature-induced crashes.
In context ↗