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ME/CFS Moderate → much betterIll 33 years before improving or writingNeeds ongoing treatment

Almost housebound with ME/CFS, now much better with moclobemide and Parnate

Condition
ME/CFS
At worst
Moderate (mostly housebound)
Ill before improving or writing
33 years
Last post
Dec 2024
In their words
  • Condition: ME/CFSI've been on MAOIs for ME/CFS since the early 90s, about six months after my initial glandular fever bout. In context ↗
  • At worst: Moderatewhich took me from almost housebound to about 80% of normal activity level In context ↗
  • Now: Much betterI've been at about 80% or so of normal functioning since then with ups and downs. In context ↗
  • Began after: glandular fever or EBVabout six months after my initial glandular fever bout
Read from 1 of their posts and comments; links to the one this page draws on

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Summary

After glandular fever in the early 1990s they were almost housebound with ME/CFS. Moclobemide raised them to about 80% of normal activity; weaning off it after 1.5 years worsened their symptoms, and they switched to Parnate, staying at roughly 80% of normal function. Eliminating food allergies improved their energy, though symptoms worsened slightly after menopause and maybe after a first COVID vaccination; colds and infections still cause crashes.

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What they tried

Also tried

B12· Helpeda drug (whose name I forgot)· Helped
Their words about each treatment
  • moclobemide (reversible) · Helped a lotFor a start I was on moclobemide (reversible) which took me from almost housebound to about 80% of normal activity level. In context ↗
  • parnate · Helped a lotTransfered to parnate & have been on it ever since. ... I've been at about 80% or so of normal functioning since then with ups and downs. In context ↗
  • eliminating food allergies · HelpedMy energy improved after finding and eliminating food allergies. In context ↗
  • B12 · HelpedSometimes I've got out of infection crashes with B12 In context ↗
  • a drug (whose name I forgot) · Helpedsometimes more recently with a drug (whose name I forgot) In context ↗

Approaches: Diet · Other antidepressants

Their path

Very severeSevereModerateMildNear normalRecoveredonset7 y14 y21 y28 y

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. 1 step has no time and sits in story order between the steps around it. 2 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
WhenWhat happenedWhere they wereAfter
early 1990sglandular fever; almost housebound before treatmentmy initial glandular fever bout ... took me from almost housebound to about 80% of normal activity level In context ↗Moderate
about six months after onsetstarted moclobemide; back to about 80% of normal activityFor a start I was on moclobemide (reversible) which took me from almost housebound to about 80% of normal activity level. In context ↗Mild
about 1.5 years laterweaned off moclobemide; symptoms got worseI started weaning myself off it because the doctor who put me on it said I wouldn't need it forever. It didn't go well & various symptoms got worse. In context ↗Not stated
—restarted moclobemide; worked less well than beforeunder medical advice increased the code back up again to where it was, but it didn't work quite as well as before In context ↗Not stated
early-to-mid 1990sswitched to Parnate; about 80% of normal function long termTransfered to parnate & have been on it ever since. ... I've been at about 80% or so of normal functioning since then In context ↗Mild
—energy improved after eliminating food allergiesMy energy improved after finding and eliminating food allergies. In context ↗MildElimination diets (other)
December 2024still about 80% of normal function; gradual worsening after menopause and first COVID vaccinationI've been at about 80% or so of normal functioning since then ... My symptoms have gradually got a bit worse since I went through menopause & maybe after my first covid vaccination. In context ↗Mild

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Brain fogIt improved my exercise intolerance, brain fog, temperature control, tolerance of standing In context ↗
  • Post-exertional malaiseI've had minor crashes due to overactivity & temporary ones due to infections. In context ↗

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