ME/CFS
Severe → much betterIll 2.5 years before improving or writingNeeds ongoing treatment
Housebound and mostly bedbound with ME/CFS for 8–9 months, much better with pacing and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I was officially diagnosed with ME/CFS yesterday by a neurologist.
In context ↗ - At worst: Severe
I was 100% home bound and 90% bed bound, getting up only to use the toilet.
In context ↗ - Now: Much better
I’ve found something that works for me and have gotten some big parts of my life back. Still have issues that are not resolved. But the crushing fatigue is gone and I haven’t had PEM for 6 months.
In context ↗ - Began after: COVID
I was suuuuper sick all of December 2022.
In context ↗
Read from 244 of their posts and comments; links to the 66 this page draws on
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Summary
They developed ME/CFS after a severe COVID infection in late 2022 and were housebound and mostly bedbound for 8–9 months. Pacing, a beta blocker and LDN gave partial gains, and tirzepatide improved energy but was not a cure. After travel in late 2023 and a cold in 2024 they declined to moderate/severe, housebound and unable to work.
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What they tried
What they credit
pacing· Helped a lot · mainradical rest· Helped a lot · mainbeta blocker· Helped a lotHBOT· Helped a lot · wore offthymosin alpha-1· Helped a lot · mainvitamin D· HelpedOmega 3· Helpedvitamin C· HelpedPepcid· HelpedAllegra· Helpedaspirin· Helpedtirzepatide· Helped · wore offLDN· Helped · wore offacupuncture· Helpedtime· Helped
Also tried
prednisone· Helped a lot · wore offalternate nose breathing· Helpedmagnesium citrate· Helpedmelatonin· Helped · wore offpower wheelchair· HelpedSSRI· HelpedWellbutrin· HelpedGabapentin· Helpedketamine· Helpedsteroid cream· Helpedantihistamines· Helpedherbs· Helpedprogesterone· Helpednicotine patches· Helped · wore offazithromycin· No changeTylenol· No changebreath training· No changefamcyclovir· No changeCOVID booster / Novavax· No changebipap· No changemestinon· No changeketo and Mediterranean diets· No changeketo and Mediterranean diets· No changemeditation· No changemouthwashes and rinses· No changefermented foods· Worsenattokinase· Worserapamycin· WorseNAC· Worsecaffeine· Worsemild exercise· WorseB complex· Not saidinhalers· Not saidhigh probiotics· Not saidtherapy· Not said
Their words about each treatment
- pacing · Helped a lot
Most of my progress has come from pacing.
In context ↗ - radical rest · Helped a lot
The only way I get out of this place is complete rest.
In context ↗ - azithromycin · No change
I took this a couple months ago during pneumonia and it didn’t seem to help much even for that.
In context ↗ - alternate nose breathing · Helped
Recently what has helped is alternate nose breathing.
In context ↗ - magnesium citrate · Helped
I also take 400mg of magnesium citrate.
In context ↗ - melatonin · Helped
melatonin worked for a while but then stopped.
In context ↗ - vitamin D · Helped
I take Omega 3’s, vitamin D liquid, vitamin C, Pepcid, Allegra, and aspirin.
In context ↗ - B complex · Not said
I’m taking Vitamin D, Omega 3’s, B complex, melatonin at night, magnesium citrate at night to help stay asleep.
In context ↗ - Tylenol · No change
I try Tylenol bc my stomach hates me, but it doesn’t cut the fever.
In context ↗ - inhalers · Not said
I have 2 inhalers - one emergency and one for daily use to try to open my pathways.
In context ↗ - breath training · No change
I don’t see any physical change/progress but it’s nice for meditation
In context ↗ - power wheelchair · Helped
I invested in a power chair and it’s been a big help for me to be able to be out when I feel ok but am still fatigued.
In context ↗ - SSRI · Helped
I have been on an SSRI and Wellbutrin before getting sick.
In context ↗ - famcyclovir · No change
I’ve been on daily famcyclovir for years before my LC me/cfs diagnosis.
In context ↗ - beta blocker · Helped a lot
I’m on a beta blocker for tachycardia due to LC and it’s wonderful.
In context ↗ - Gabapentin · Helped
Gabapentin did help with that, but I don’t take it anymore.
In context ↗ - ketamine · Helped
It didn’t help my LC symptoms. But didn’t hurt me either.
In context ↗ - tirzepatide · Helped
After my first dose I felt better the next day.
In context ↗ - LDN · Helped
LDN gave me my brain back about 5 weeks ago.
In context ↗ - high probiotics · Not said
I take high probiotics twice a day for a while now.
In context ↗ - fermented foods · Worse
when I try them, my body reacts negatively- bad headaches, body aches.
In context ↗ - COVID booster / Novavax · No change
No difference in my LC symptoms.
In context ↗ - steroid cream · Helped
Steroid cream is the only thing that helps.
In context ↗ - antihistamines · Helped
I’m taking 4 different antihistamines rn so it’s been a little bit since that happened.
In context ↗ - nattokinase · Worse
I reacted badly to the oral supplement - immediate migraine.
In context ↗ - HBOT · Helped a lot
At about 2 weeks the fatigue reversed.
In context ↗ - acupuncture · Helped
The acupuncture (and herbs) have allowed me to get deep sleep again.
In context ↗ - herbs · Helped
the herbs that were put together for me have helped my gut health a lot.
In context ↗ - rapamycin · Worse
Insane headache & nausea. I felt worse for weeks after stopping.
In context ↗ - NAC · Worse
I’ve been in bed for the last 2 days since I started it because I’m so dizzy and heart rate is so much higher too.
In context ↗ - prednisone · Helped a lot
I felt normal for 3 whole days while on it.
In context ↗ - progesterone · Helped
just got a rx for progesterone. 2 at bedtime has helped so much.
In context ↗ - bipap · No change
I have a sleep machine (bipap) but it hasn’t helped my fatigue at all.
In context ↗ - mestinon · No change
Everyone should be taking mestinon (I had already taken that with nothing to show for it)
In context ↗ - keto and Mediterranean diets · No change
I tried keto and Mediterranean diets- really almost anything that has been recommended over the years.
In context ↗ - nicotine patches · Helped
It was awesome at first. I felt amazing.
In context ↗ - caffeine · Worse
having a strong cup of caffeinated coffee will give me about 5 hours worth of almost normal energy. But when I use this “trick” I spend the next few days stuck in bed.
In context ↗ - thymosin alpha-1 · Helped a lot
I started feeling better after about 2 weeks.
In context ↗ - meditation · No change
Meditation didn’t heal me (surprise!) but some other stuff helped.
In context ↗ - mouthwashes and rinses · No change
The mouthwashes and rinses haven’t been helping.
In context ↗ - mild exercise · Worse
I attempt mild exercise here and there but my results are limited and usually I get to feeling sick pretty quickly afterwards.
In context ↗ - therapy · Not said
I have a therapist I talk with about the worry I have about getting sick again or just getting worse again.
In context ↗ - time · Helped
these treatments, along with rest and time, made a big difference.
In context ↗
Approaches: GLP-1 drugs · H1 antihistamines · H2 blockers · Hyperbaric & oxygen · Alternative therapies · Anticoagulants · Beta-blockers · Pacing · Peptides · Radical rest · Supplements
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 2 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| December 2022 | acute Covid infectionI was suuuuper sick all of December 2022.In context ↗ | Not stated | |
| late January 2023 | long COVID symptoms began after a brief improvementabout 2 weeks later started downhill. Excruciating fatigue, body aches, fever after any type of exertion, racing heart all the time.In context ↗ | Moderate | |
| August 2023 | beta blocker slowed her heart rateracing heart and overly high heart rate on normal activity (like 125 brushing teeth- thankfully beta blocker is helping this now)In context ↗ | Moderate | Beta-blockers (unspecified) |
| September 2023 | nicotine patch gave energy for a few daysI’m able to work my job without laying down in the middle of the dayIn context ↗ | Moderate | Nicotine patches |
| December 2023 | working part time from home, out with a wheelchairI’m much better than I was a year ago. Back then I was in bed all day every day. Now I am working part time from homeIn context ↗ | Moderate | Beta-blockers (unspecified) |
| December 2023 | went downhill after travelling aloneI decided to travel (alone) last December to see a friend and it was a poor decision. It’s been downhill since then.In context ↗ | Moderate | |
| May 2024 | bad cold left her fully bedboundThen about 2 months ago I caught a cold. Was fully bedbound again- couldn’t handle light, sound, stimulation.In context ↗ | Severe | |
| June 2024 | quit work; home bound and 90% bed boundBy the time I stopped working in June I was 100% home bound and 90% bed bound, getting up only to use the toilet.In context ↗ | Severe | |
| December 2024 | baseline dropped back to bedboundIm back to bedbound after being ok to leave the house once per week.In context ↗ | Severe | |
| April 2025 | careful pacing brought small gainsBut after doing this for a while I’m improving a little.In context ↗ | Severe | Pacing and the energy envelope |
| July 2025 | back at part-time work and walking after HBOT and acupunctureBut I feel I’m at about 80% back to my normal self and I’m slowly building back the musclesIn context ↗ | Mild | Hyperbaric oxygen (HBOT) |
| November 2025 | decline from September, stuck in bed againBut I’ve been declining again since September.In context ↗ | Severe | |
| February 2026 | slow improvement with restI’m lucky to be slowly improving again.In context ↗ | Severe | Pacing and the energy envelope |
| March 2026 | able to garden after thymosin alpha-1Recently had a new improvement from thymosin alpha-1. This week I was able to work in my garden for an hour.In context ↗ | Moderate | |
| May 2026 | full days of work and 10k steps with no PEMI have returned to at least 80% of my normal. I can work full days again, do physical work in my garden and walk 10k steps with no PEM.In context ↗ | Mild | |
| July 2026 | working three-quarter time and taking 30-minute walksI’d say 75-80% so far. I am very deconditioned after so much time housebound and then bed bound.In context ↗ | Mild | |
| August 2026 | crushing fatigue and PEM gone, tinnitus and word-finding remainthe crushing fatigue is gone and I haven’t had PEM for 6 months.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“I had my usual reaction to the vaccine- fatigue (only slightly worse than a normal day) and fever with chills about 12-15 hours after the shot.” In context ↗ Side effects
- Nicotine patches“But I crashed really hard after because I couldn’t really keep up with the “extra” energy.” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“And after the first dose (at night) the next day was so dizzy I could only stand with help to use the bathroom.” In context ↗ Side effects
- Caffeine and coffee, Nicotine patches“But when I use this “trick” I spend the next few days stuck in bed.” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“I had some difficulty with sleep for the first few days. That seems to be ok now.” In context ↗ Insomnia from treatment
- Nicotine patches“I like nicotine for emergencies, but find they act like a stimulant for me, so I need to carefully pace or I get PEM.” In context ↗ Made symptoms worse
- Nicotine patches“when I tried again, I felt kind of like a skittish cat- jumpy and nervous.” In context ↗ Mood or psychiatric effects
- NAC (N-acetylcysteine)“I had terrible migraines from both NAC and something else that is frequently mentioned that I can’t remember the name of right now.” In context ↗ Side effects
- Nattokinase“I reacted badly to the oral supplement - immediate migraine.” In context ↗ Side effects
- Rapamycin / sirolimus“Insane headache & nausea. I felt worse for weeks after stopping.” In context ↗ Side effects
- Hyperbaric oxygen (HBOT)“Heart rate is always higher, at the beginning uncomfortably high.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
My LC symptoms were: fatigue, PEM (frequent fevers, headaches, flu symptoms)
In context ↗ - Brain fog
But I still have serious word recollection issues.
In context ↗ - POTS & dysautonomia
I got frequently lightheaded upon standing. That is improved but not gone.
In context ↗ - Mast cell (MCAS) & allergies
Yes to POTS and some MCAS symptoms. Always splotchy red face and neck.
In context ↗ - Sleep problems
I get an average of 5 hours of actual sleep
In context ↗ - Pain & fibromyalgia
I haven’t found anything yet for body aches or the constant fever.
In context ↗ - Headaches & migraine
I still have terrible tinnitus, get headaches from the heat, word recollection issues.
In context ↗ - Gut problems
near constant nausea became a new symptom that was unbearable
In context ↗ - Light & noise sensitivity
Was fully bedbound again- couldn’t handle light, sound, stimulation.
In context ↗ - Breathlessness
I still cough Every Day. It’s annoying in addition to being tough to catch my breath.
In context ↗ - Heart symptoms & palpitations
I have IST too from LC.
In context ↗ - Muscle weakness
now I have muscle trembling and weakness on my right side
In context ↗ - Neuropathy & tingling
It has not helped with my word recollection issues or my skin feeling like fire.
In context ↗ - Anxiety & low mood
Now I’m only “situationally” depressed, like when I think about taking a walk and I can’t.
In context ↗ - Flu-like symptoms
fevers are mostly gone unless I do way too much
In context ↗ - Loss of smell or taste
I feel like losing my sense of taste for so long was a big part of weight gain.
In context ↗ - Tinnitus
I still have terrible tinnitus
In context ↗ - Temperature regulation
Cold hands tho- I just wear gloves but they don’t help too much.
In context ↗ - Vision problems
for about an hour afterward I had brain zaps and difficulty focusing my eyes.
In context ↗
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