ME/CFS
Severe → relapsedIll 14 years before improving or writing
ME/CFS with a two-year remission, then relapse and completely bedridden
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I’m a pre-Covid ME patient and when I first got sick many years ago I knew that antivirals were really worth a try
In context ↗ - At worst: Severe
I’m severe and usually bedridden.
In context ↗ - Now: Relapsed
Now it's been 3 straight years and I don't think another remission is coming.
In context ↗ - Began after: glandular fever or EBV
I believe the antivirals, if I’d gotten them in a timely manner, could have nipped my EBV infection in the bud
Read from 16 of their posts and comments; links to the 13 this page draws on
Summary
Dune 93161 fell ill at 31, which they link to an EBV infection, and their ME/CFS came and went in unexplained remissions. A spontaneous full remission in April 2020 lasted two years; they relapsed in March 2022 and became completely bedridden in their mid 40s. They described themselves as severe and usually bedridden, with Adderall giving only small gains and alcohol briefly easing symptoms.
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What they tried
Also tried
strong antivirals· Helped a lotadderall· Helpedalcohol (wine)· Helpednicotine patches· HelpedZoloft· Helpedadult diapers· Helpeda repurposed HIV antiviral· No changea new antiviral· No changediet· No changemoved across the country to a desert climate· Worseantidepressants· Worsephysical therapy· Much worse
Their words about each treatment
- physical therapy · Much worse
I had physical therapy late last year and had to stop because I became bedridden.
In context ↗ - adderall · Helped
the only thing that’s ever touched my fatigue is adderall. Of course it’s a band-aid and not an answer, but it has enabled me to get out of the house
In context ↗ - a repurposed HIV antiviral · No change
One was a repurposed HIV antiviral. None helped.
In context ↗ - alcohol (wine) · Helped
Sometimes if I know I’ll need extra energy, I’ll have some wine the night before and sometimes I am blown away by the difference in how I feel the day after
In context ↗ - nicotine patches · Helped
Nicotine helped me too, but the improvement was very minimal. And the patches weren’t cheap.
In context ↗ - a new antiviral · No change
Last year, in what now feels like a cruel joke, a doc gave me a new antiviral to try. Of course it did nothing.
In context ↗ - moved across the country to a desert climate · Worse
I moved across the country to a desert climate one year to try and ward it off, but it followed me and I ended up very sick and unable to work or do anything.
In context ↗ - Zoloft · Helped
After a year of being off Zoloft I refilled my script at the same dose I’d had before ... I guess maybe it helps a little
In context ↗ - diet · No change
My diet never once has changed the way I feel with this illness.
In context ↗ - antidepressants · Worse
I've tried so, so many antidepressants and I've only gotten worse.
In context ↗ - adult diapers · Helped
I've started using adult diapers. It's helped a ton. Especially since I get episodes of overactive bladder.
In context ↗ - strong antivirals · Helped a lot
he immediately went to his hospital and got me strong antivirals that kicked the infection right out of me
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. The chart starts 10.1 years after onset: the story doesn’t say how ill they were before that. 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 | After |
|---|---|---|---|
| age 31 | fell ill with ME/CFS after an EBV infectionI was 31 when it started.In context ↗ | Not stated | |
| mid-April 2020 | woke up completely normal; spontaneous remission lasted two yearsI woke up one day and I was fine. Like, completely normal fine with no ME symptoms whatsoever.In context ↗ | Recovered | |
| March 2022 | became ill again after two years of remissionThen, in March, 2022, I again have no idea what happened but I became ill again.In context ↗ | Not stated | |
| mid 40s | became completely bedriddenI became completely bedridden in my mid 40s.In context ↗ | Severe | |
| March 2024 | Adderall touched their fatigue and allowed occasional outings from bedit has enabled me to get out of the house and get a tiny bit of living in every now and then. I’m severe and usually bedridden.In context ↗ | Severe | Amphetamine salts (Adderall) |
| December 2024 | three straight years ill with no further remission expectedNow it's been 3 straight years and I don't think another remission is coming.In context ↗ | Severe |
Adverse events
- Physical therapy / physiotherapy“I had physical therapy late last year and had to stop because I became bedridden.” In context ↗ Made symptoms worse
- Sertraline (Zoloft), Antidepressants (unspecified)“I've tried so, so many antidepressants and I've only gotten worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
much more energy, clearer head, much less irritable
In context ↗ - Post-exertional malaise
I had physical therapy late last year and had to stop because I became bedridden.
In context ↗