ME/CFS
Somewhat betterIll 6 years before improving or writing
ME/CFS for six years, first three and a half brutal, now somewhat better
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 6 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I have not had a virus in the 6 years since this horrid disease took hold of my life
In context ↗ - Now: Somewhat better
I am miles from the first 3.5 years of ME which was brutal
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A Reddit user with ME/CFS for six years called the first three and a half years brutal and said they were now far better. Retatrutide, a weight-loss peptide taken for about nine months, brought 32 kg of weight loss but more fatigue; splitting the 3 mg weekly dose was gentler. They caught COVID for the first time, and two months later PEM was far worse, though daily electrolytes kept orthostatic intolerance manageable.
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What they tried
Also tried
KPV· Helped a lotdaily electrolyte intake· HelpedRetatrutide· Worseone cup of coffee a day· WorseNSAIDs· Not said
Their words about each treatment
- Retatrutide · Worse
for the first month caused extra fatigue at 4mg per week
In context ↗ - one cup of coffee a day · Worse
introducing one cup of coffee a day which dehydrated me further and sent my orthostatic intolerance off the scale
In context ↗ - daily electrolyte intake · Helped
I have since introduced daily electrolyte intake which has brought the orthostatic intolerance back to a manageable level
In context ↗ - KPV · Helped a lot
It has improved my quality of life immensely
In context ↗ - NSAIDs · Not said
I no longer take any NSAIDs, although I have taken the odd one since I contracted COVID to deal with headaches
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 | After |
|---|---|---|
| onset | ME/CFS onset; the first 3.5 years were brutal6 years since this horrid disease took hold of my life ... the first 3.5 years of ME which was brutalIn context ↗ | |
| after the first 3.5 years | much better than the brutal early yearsI am miles from the first 3.5 years of ME which was brutalIn context ↗ | |
| first month of retatrutide | extra fatigue on retatrutide, worsening over monthsfor the first month caused extra fatigue at 4mg per week ... the fatigue increasedIn context ↗ | Retatrutide |
| since January 2026 | KPV eased body pains and improved quality of life; stopped NSAIDsIt has improved my quality of life immensely.In context ↗ | KPV |
| 5.8 y | first COVID infection; PEM much worseIt has now been 2 months since COVID ... It has definitely made PEM far worse than it has been in a long time.In context ↗ | |
| 2026-07-21 | still dealing with post-COVID PEM; orthostatic intolerance manageable with daily electrolytesI am still dealing with what I hope does not become Long COVID on top of MEIn context ↗ |
Adverse events
- Retatrutide“for the first month caused extra fatigue at 4mg per week” In context ↗ Made symptoms worse
- Retatrutide“no side effects other than very slight constipation which was mainly caused by the decrease in thirst” In context ↗ Gut side effects
- Retatrutide“As the months passed by I lost more and more weight but the fatigue increased.” In context ↗ Made symptoms worse
Symptoms mentioned
Gut problemsHeadaches & migrainePOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
It has definitely made PEM far worse than it has been in a long time.
In context ↗ - POTS & dysautonomia
brought the orthostatic intolerance back to a manageable level
In context ↗ - Headaches & migraine
I have taken the odd one since I contracted COVID to deal with headaches
In context ↗ - Pain & fibromyalgia
If likeme you suffer from body pains
In context ↗ - Gut problems
very slight constipation
In context ↗ - Temperature regulation
winters are always cruel to me
In context ↗