ME/CFS
Moderate → no benefitIll for 3 years
ME/CFS mild then moderate; biologics and POTS drugs gave no benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
My ME has been moderate for about a year and a half now.
In context ↗ - At worst: Moderate
My ME has been moderate for about a year and a half now.
In context ↗ - Now: No benefit
I’m inching closer and closer to moderate and really scared.
In context ↗ - Began after: COVID
right after getting the flu and Covid (for the first time) back to back
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
A woman with POTS, ulcerative colitis and hidradenitis suppurativa developed ME/CFS in January 2024, after flu and Covid followed by a staph-infected HS flare. She was mild in late 2024 and moderate by 2026, with brain fog, PEM, migraines, neuropathy and broken sleep. Biologics did not touch the ME/CFS, and midodrine, Florinef and salt did not help her POTS. After Florinef was tapered her standing pulse hit 140; a prior crash had made her fear becoming severe.
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What they tried
Also tried
Their words about each treatment
- Entyvio · Helped
Entyvio is the only biologic that’s ever worked for my UC
In context ↗ - Remicade · No change
I’ve failed remicade as well
In context ↗ - Xeljanz · Helped
Xeljanz worked for me for about a year and a half and then stopped
In context ↗ - Rinvoq · No change
I switched to Rinvoq and that did nothing
In context ↗ - Stelara · No change
I switched to Rinvoq and that did nothing, failed Stelara, and am now back on Entyvio
In context ↗ - Humira · No change
neither has the Humira I was also on for HS this year
In context ↗ - Skyrizi · No change
I’ve also been on Humira and Skyrizi since the onset of ME, and those didn’t touch it either.
In context ↗ - midodrine · No change
I’ve been on both midodrine and florinef, along with chugging salt, and nothing has helped.
In context ↗ - Zoloft · Helped
My depression has also been worse through this after I’d been doing better with Zoloft
In context ↗ - OTC meds · No change
It’s resisted OTC meds as well as prescribed Zolmitriptan, Zofran, and Metoclopramide.
In context ↗
Their path
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| January 2024 | ME/CFS begins after flu, Covid and a staph-infected HS flareright after getting the flu and Covid (for the first time) back to back ... I haven’t been the sameIn context ↗ | Mild |
| 2024-11-23 | worse end of mild while in a master's programI feel like if I have it, it would be considered the worse end of mild or mild to moderate.In context ↗ | Mild |
| 2026-08-31 | 9-day migraine with a crash, mostly bedboundI’ve been mostly bedbound with fatigueIn context ↗ | Severe |
| 2026-10-24 | moderate ME, orthostatic pulse 70 to 140 after Florinef tapermy orthostatic pulse shot up from 70 to 140In context ↗ | Moderate |
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
These symptoms get worse the longer I exert myself to the point where I run out of spoons and collapse into bed.
In context ↗ - Brain fog
have dense brain fog
In context ↗ - POTS & dysautonomia
I (25F) have POTS as well as ulcerative colitis and hidradenitis/HS
In context ↗ - Sleep problems
my body won’t let me sleep until like 10 AM and I get 3 interrupted hours at that
In context ↗ - Headaches & migraine
I’ve had a migraine for going on 9 days now.
In context ↗ - Gut problems
bad nausea and acid reflux
In context ↗ - Heart symptoms & palpitations
constant heart pounding
In context ↗ - Neuropathy & tingling
neuropathy has been going wild with full body hot flashes throughout the day
In context ↗ - Vision problems
my vision is blurry/staticky with unusual brightness
In context ↗ - Anxiety & low mood
My depression has also been worse through this
In context ↗