ME/CFS
Outcome unclearIll for 25 years
Severe ME/CFS for 25 years, still severely ill; 15 drugs and antivirals gave no benefit
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 25 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
one of the few career paths that someone with my level of CFS can actually be accomplished at
In context ↗ - At worst: Severe
I have severe me cfs so all the treatments make me worse and provoke my rib pain
In context ↗
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
Meadow 72738 has had severe ME/CFS for about 25 years, along with cystic fibrosis, severe GERD, a feeding tube and unexplained rib-cage pain. About 15 drugs taken from a neuropsychopharmacology book, including ketamine, and antivirals gave no benefit, and cutting out sugar helped only a little. Seeing 20 doctors a year brings weeks of severe PEM, and they were at their breaking point, still severely ill.
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What they tried
Also tried
Pepcid· Helped a lotcut most people out of my life· Helpedcut out sugar including carbs· Helpedcut out sugar including carbs· Helped15 of the drugs· No changeketamine· No changeantivirals· No changeall the medicine herbal or otherwise· Not saidapple cider vinegar· Not said
Their words about each treatment
- 15 of the drugs · No change
I ended up trying maybe 15 of the drugs but had no success.
In context ↗ - ketamine · No change
ketamine for example, which I got but didn't offer me relief
In context ↗ - cut most people out of my life · Helped
I’ve cut most people out of my life aside from immediate family. I just needed to to survive, to save the energy and stress.
In context ↗ - cut out sugar including carbs · Helped
A little if I cut out sugar including like carbs.
In context ↗ - all the medicine herbal or otherwise · Not said
I’ve taken all the medicine herbal or otherwise, all the lifestyle changes, all the anecdotal stuff like apple cider vinegar.
In context ↗ - apple cider vinegar · Not said
all the anecdotal stuff like apple cider vinegar
In context ↗ - antivirals · No change
I’ve never benefitted from an experimental treatment, of which some were popular eg antivirals and now are rarely used.
In context ↗ - Pepcid · Helped a lot
That’s crazy Pepcid is my lifeblood
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 |
|---|---|---|
| onset | ME/CFS onsetHe’s been saying this every year for 25 years.In context ↗ | Not stated |
| 2026-02-22 | at breaking point, severe ME/CFS with GERD, feeding tube and rib-cage painI have severe me cfs so all the treatments make me worse and provoke my rib pain.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I see 20 doctors a year all causing weeks of severe pem
In context ↗ - Sleep problems
I also have cystic fibrosis and severe gerd to the point I can’t sleep and use a feeding tube.
In context ↗ - Gut problems
I have very severe gerd inexplicably.
In context ↗ - Pain & fibromyalgia
I have severe severe rib cage pain if unknown etiology.
In context ↗ - Anxiety & low mood
Tonight I told my dad I was at my breaking point
In context ↗