ME/CFS
Severe → no benefitIll for 45 years
Mostly in bed with ME/CFS, PEM and brain fog, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 45 years
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I have ME/CFS, and I have Covid now, my first time having it.
In context ↗ - At worst: Severe
I am in the milder end of severe (spend most of my time in bed but not bed bound)
In context ↗ - Now: No benefit
more recently I have been getting a lot worse. I'm not quite bedridden, but I spend most of my time in bed.
In context ↗
Read from 61 of their posts and comments; links to the 30 this page draws on
Summary
Beacon 37886 fell ill at 16 in 1981 and recovered within a year after being kept out of school and resting; she credits youth and extreme rest. CFS returned in 1991 during graduate school and has worsened slowly since, leaving her mostly in bed with PEM, headaches and brain fog. Paxlovid helped her through a December 2022 COVID infection, though recovery took months; nitrous oxide eased dental PEM for about $100 a visit.
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What they tried
Also tried
extreme rest· Helped a lot · wore offstimulant· Helped · wore offtopiramate (Topamax)· HelpedPaxlovid· HelpedValium· Helpednitrous oxide· HelpedDXM· Helpedmeditation and breathing exercises· HelpedCelexa· No changeOmega 3· No changePfizer COVID vaccine· No changeThe Pill· WorseNardil· Worsevitamins· Not saidDramamine· Not saidHRV tracker· Not saidUbiquinol· Not saidIV of saline· Not saiddiet changes· Not said
Their words about each treatment
- extreme rest · Helped a lot
I attribute that recovery to 2 things: My youth ... Extreme rest. I did not attend high school that year, and just had a tutor for 2 classes.
In context ↗ - vitamins · Not said
My grandma did give me a bunch of vitamins every day, but I don't remember what.
In context ↗ - The Pill · Worse
I started getting really bad headaches while taking the monthly week of "fake" pills.
In context ↗ - Nardil · Worse
I was on Nardil many years ago. I did not find it sedating, but it did make me dizzy
In context ↗ - Dramamine · Not said
I used to take Dramamine on airplanes so that I would sleep through most of it.
In context ↗ - stimulant · Helped
So now I have been on this stimulant for about 19 years. If I run out, I crash bad, but that is probably withdrawal. And it certainly isn't working the way it did all those years ago.
In context ↗ - Celexa · No change
I take an antidepressent, Celexa, for anxiety. It helps for that but makes no difference in my CFS symptoms.
In context ↗ - topiramate (Topamax) · Helped
I take Topamax (topiramate) morning and evening to prevent my severe, multi-day headaches from happening as often. It helps a lot.
In context ↗ - HRV tracker · Not said
I'm finding, to my disappointment, that the HRV levels only sometimes line up with how I am actually feeling.
In context ↗ - Paxlovid · Helped
I am certain the medicine helped me. ... I didn't have the improvement some have, but I'm glad I took it.
- Valium · Helped
I took that for another extraction several years ago. It didn't help as much as the nitrous oxide, but it did help some.
In context ↗ - nitrous oxide · Helped
So I tried it, and it it really helped. ... the PEM was much less severe than it normally would be.
In context ↗ - Omega 3 · No change
My numbers have been climbing, despite Omega 3 supplementation
In context ↗ - Ubiquinol · Not said
I take 300 mg Ubiquinol currently.
In context ↗ - IV of saline · Not said
Also I asked for an IV of saline prior to the surgery. ... I guess it helped, because my recovery went really well.
In context ↗ - diet changes · Not said
I lost 30 pounds in 6 months in 2024 through diet changes. ... no exercise was involved in my weight loss
In context ↗ - DXM · Helped
DXM helps me. ... within minutes after the second dose, it was like I could feel the fog clearing.
In context ↗ - meditation and breathing exercises · Helped
I do various types of meditation and breathing exercises. Also vagus nerve exercises.
In context ↗ - Pfizer COVID vaccine · No change
And these effects were gone the next day, leaving me with just a few more days of PEM
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 | After |
|---|---|---|---|
| 1981 | fell ill at 16; kept out of school and told to restWhen I was a junior in high school, in 1981, I came down with CFS.In context ↗ | Moderate | |
| 1982 | remission after a year of rest, before starting collegeI recovered in under a year.In context ↗ | Recovered | Radical rest |
| 1991 | CFS returned during doctoral studies at age 25Then in 1991, it did come back. I was 25.In context ↗ | Mild | |
| 1994 | quit graduate school and dropped to rest instead of pushingIt was when I faced reality and quit school that I got a little better physically and a LOT better mentally/emotionally.In context ↗ | Mild | |
| 2022-12-03 | slow progressive decline to mostly being in bedmore recently I have been getting a lot worse. I'm not quite bedridden, but I spend most of my time in bedIn context ↗ | Severe | |
| 2025-07-01 | still mostly in bed after losing weight through diet aloneI'm on the border between moderate and severe.In context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“So far, nothing but a slightly sore arm, barely noticeable, but it's only been 6 hours.” In context ↗ Side effects
- “even though it is ergonomic, it hurts my wrist.” In context ↗ Side effects
- COVID vaccination as treatment“I felt more fatigued, body aches, more brain fog. I had mild chills.” In context ↗ Side effects
- COVID vaccination as treatment“I also had mild pain and itching at the injection site for several days.” In context ↗ Side effects
- Hormonal birth control (unspecified)“I started getting really bad headaches while taking the monthly week of "fake" pills.” In context ↗ Side effects
- Phenelzine (Nardil)“it did make me dizzy, so much so that one night I got up to use the bathroom, fainted, and hit my mouth on the sink, chipping a tooth” In context ↗ Low blood pressure or fainting
- Phenelzine (Nardil), Citalopram (Celexa)“after years of being on it, I had to go off it because it was causing some (daytime) lightheadedness.” In context ↗ Low blood pressure or fainting
- Paxlovid / nirmatrelvir“I did have the side effect of a bad taste in the mouth ... ALL the time, the whole five days I was on it.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migrainePOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
afterwards the worst of the PEM will last 3-4 days at least
In context ↗ - Brain fog
I once forgot what a toaster was called
In context ↗ - Headaches & migraine
I take Topamax (topiramate) morning and evening to prevent my severe, multi-day headaches from happening as often.
In context ↗ - Gut problems
It upsets my stomach, kills my appetite for the rest of the day, and gives me diarrhea.
In context ↗ - Pain & fibromyalgia
I have problems with pain in both wrists
In context ↗ - Sleep problems
It helps with sustaining sleep during the night.
In context ↗ - Anxiety & low mood
I have had an anxiety disorder since 2011.
In context ↗ - Breathlessness
I was weaker than usual and very easily out of breath for about a month afterwards
In context ↗ - POTS & dysautonomia
including some POTS-like symptoms that I normally don't have
In context ↗