ME/CFS
Moderate → no benefitIll for 5 yearsNeeds ongoing treatment
ME/CFS and POTS with constant ear pain, still weak and using a wheelchair
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
now long vax and diagnosed with MECFS
In context ↗ - At worst: Moderate
At moderate, a manual wheelchair helps me a ton
In context ↗ - Now: No benefit
5 years later I still live with all things I experienced at that moment.
In context ↗ - Began after: a vaccination
within 15 seconds of receiving my shot I had a very sudden reaction and simply never got better
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
Crest 50659 became ill in 2021 within seconds of a Moderna COVID vaccination, with ear pain and pressure that never went away, and was later diagnosed with ME/CFS and POTS. Five years on they still live with the same symptoms, have weakness in their arms and legs, and use a manual wheelchair for outings. DXM and steroids were the only things that eased their ear fullness; they are now on SSDI.
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What they tried
Also tried
Their words about each treatment
- small rests · Helped
small rests I also second. It may not feel like much but it really can help your brain keep up for long periods of time
In context ↗ - manual wheelchair · Helped
At moderate, a manual wheelchair helps me a ton
In context ↗ - therapy · Not said
Back when I was in therapy my therapist had MS
In context ↗ - steroids · Helped
taking DXM for the first time and being on steroids are the only two things that have ever helped it
In context ↗ - DXM · Helped
I take 15mg of DXM daily and it doesn’t exactly help but it makes it not get worse as quickly from exertion
In context ↗ - antibiotic · Worse
When I took a new antibiotic and it made me puke
In context ↗ - COVID vaccination as treatment · Worse
I got the second moderna shot too and it (unsurprisingly) made things much worse.
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. 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
| When | What happened | Where they were |
|---|---|---|
| 2021 | sudden reaction seconds after first Moderna shotI was fine and perfectly healthy, zero symptoms, and then within 15 seconds of receiving my shot I had a very sudden reactionIn context ↗ | Not stated |
| 2021 | second Moderna shot made things much worseI got the second moderna shot too and it (unsurprisingly) made things much worse.In context ↗ | Not stated |
| 2024-06-28 | moderate ME/CFS, manual wheelchair for outingsAt moderate, a manual wheelchair helps me a tonIn context ↗ | Moderate |
| 2026-09-16 | still ill five years on, on SSDI5 years later I still live with all things I experienced at that moment.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“I was symptomatic within like 15 seconds of getting the vaccine. My first symptom was ear pain and pressure which I have to this day” In context ↗ Side effects
- COVID vaccination as treatment“I had a bad reaction to moderna within like 15 seconds (and was told by the pharmacist to just leave and go sit in my car) and that’s why I have ME/CFS in the first place.” In context ↗ Side effects
- COVID vaccination as treatment“I got the second moderna shot too and it (unsurprisingly) made things much worse.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“When I took a new antibiotic and it made me puke nobody tried to tell me it was something else.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my ears hurting is the first thing to pop up when I overdo it
In context ↗ - POTS & dysautonomia
Now I have pretty typical ME and POTS symptoms.
In context ↗ - Muscle weakness
My legs and arms are both very weak
In context ↗