ME/CFS
Severe → no benefit
Bedbound with ME/CFS for a decade, no benefit from treatments
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2026
In their words
- At worst: Severe
Bedbound for about a decade.
In context ↗ - Now: No benefit
my biggest issues are chronic cystitis pain and relentless fatigue ... Most experimental interventions backfire for me unfortunately
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
Crane 44308 has ME/CFS and has been bedbound for roughly a decade, with dysautonomia, MCAS and cystitis pain. Mitochondrial peptides helped initially but triggered severe PEM after a reinfection; high-dose NAD+ injections also helped fatigue. Enterogermina gave temporary relief and LDN caused nerve pain. A baricitinib trial left them hospitalised with low potassium, magnesium, calcium and albumin and later kidney reabsorption issues, and red light therapy worsened ischemia-reperfusion injury.
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What they tried
Also tried
Their words about each treatment
- Enterogermina · Helped
Enterogermina temporarily helped me
In context ↗ - mitochondrial peptides · Helped
I responded well to mitochondrial peptides initially ... after a reinfection, the peptides started to trigger severe PEM
In context ↗ - CoQ10 · Helped
CoQ10 and GSH helped with weakness in the beginning, but then I hit a point of diminishing returns.
In context ↗ - High dose NAD+ injections · Helped
High dose NAD+ injections also helped with my fatigue once I got accustomed to the temporary chest palpitations.
In context ↗ - LDN · Much worse
LDN was disastrous for me even on ultra low doses ... LDN even at very low doses triggered nerve pain for me unfortunately.
- Baricitinib · Much worse
I enrolled in the REVERSE-LC trial for Baricitinib in Atlanta but ended up worse. ... After Baricitinib, I ended up hospitalized with severely low potassium, magnesium, calcium, and albumin.
- red light therapy · Worse
I tried red light therapy but ended up with worsening ischemia-reperfusion injury.
In context ↗
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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | bedbound for about a decadeBedbound for about a decade.In context ↗ | Severe | |
| — | CoQ10 and glutathione helped early weaknessCoQ10 and GSH helped with weakness in the beginningIn context ↗ | Not stated | CoQ10 / ubiquinol |
| — | mitochondrial peptides helped at firstI responded well to mitochondrial peptides initiallyIn context ↗ | Not stated | Peptides (unspecified) |
| — | high-dose NAD+ injections eased fatigueHigh dose NAD+ injections also helped with my fatigueIn context ↗ | Not stated | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
| — | reinfection; peptides then triggered severe PEMafter a reinfection, the peptides started to trigger severe PEMIn context ↗ | Severe | |
| before 2026-04-13 | baricitinib trial then hospitalisation with electrolyte imbalancesI enrolled in the REVERSE-LC trial for Baricitinib in Atlanta but ended up worse.In context ↗ | Severe | Baricitinib (Olumiant) |
| before 2026-04-13 | red light therapy worsened ischemia-reperfusion injuryI tried red light therapy but ended up with worsening ischemia-reperfusion injury.In context ↗ | Severe | Red and near-infrared light therapy |
| 2026-04-14 | still severely ill with cystitis pain, fatigue and kidney reabsorption problemsmy biggest issues are chronic cystitis pain and relentless fatigueIn context ↗ | Severe |
Adverse events
- Peptides (unspecified)“I responded well to mitochondrial peptides initially ... but after a reinfection, the peptides started to trigger severe PEM” In context ↗ Made symptoms worse
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“High dose NAD+ injections also helped with my fatigue once I got accustomed to the temporary chest palpitations.” In context ↗ Heart rhythm problems
- Low-dose naltrexone“LDN even at very low doses triggered nerve pain for me unfortunately.” In context ↗ Nerve pain
- Baricitinib (Olumiant)“I enrolled in the REVERSE-LC trial for Baricitinib in Atlanta but ended up worse.” In context ↗ Made symptoms worse
- Baricitinib (Olumiant)“After Baricitinib, I ended up hospitalized with severely low potassium, magnesium, calcium, and albumin.” In context ↗ Hospitalisation
- Baricitinib (Olumiant)“severely low potassium, magnesium, calcium, and albumin” In context ↗ Refeeding or deficiency problems
- Baricitinib (Olumiant)“My MCAS was badly triggered for many months” In context ↗ Autoimmune or inflammatory flare
- Baricitinib (Olumiant)“my kidneys have had issues with reabsorption ever since” In context ↗ Liver or kidney problems
- Red and near-infrared light therapy“I tried red light therapy but ended up with worsening ischemia-reperfusion injury.” In context ↗ Made symptoms worse
Symptoms mentioned
Heart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
the peptides started to trigger severe PEM
In context ↗ - POTS & dysautonomia
my blood pressure tends to trend too low because of dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
My MCAS was badly triggered for many months
In context ↗ - Heart symptoms & palpitations
Resting heart rate regularly shot to 160 while lying down.
In context ↗ - Pain & fibromyalgia
my biggest issues are chronic cystitis pain and relentless fatigue
In context ↗ - Muscle weakness
CoQ10 and GSH helped with weakness in the beginning
In context ↗ - Neuropathy & tingling
LDN even at very low doses triggered nerve pain for me
In context ↗