ME/CFS
Severe → relapsedIll 18 months before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, improved with pacing and B-complex, then crashed to mostly bedbound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I'm also autistic, ADHD, hypermobile and have POTS and ME (and I suspect MCAS maybe too).
In context ↗ - At worst: Severe
I was pretty severe a year ago, completely bedbound and unable to function on my own.
In context ↗ - Now: Relapsed
Then I went to a birthday party during winter (I think the prolonged cold exposure was a factor) and crashed so hard two days after, that I am back to moderate-severe again since then (6 months now).
In context ↗ - Began after: COVID
Developed ME some time after that, unclear but speculated that it's because of COVID
In context ↗
Read from 46 of their posts and comments; links to the 27 this page draws on
Summary
Ill since some time after a COVID infection in 2022, possibly triggered by it, they were completely bedbound and unable to function on their own around spring 2025. Aggressive pacing and radical rest brought them to a mostly housebound mild-moderate level, but a birthday party during winter 2026 crashed them back to severe; after months of pacing they reached moderate-severe but remained mostly bedbound. A methylated B-complex helped them out of a prolonged crash by October 2026, though they still could not shower.
Ask Miruvor AI
What they tried
What they credit
wearables / pulse alarm app· Helped a lotradical rest· Helped a lot · mainaggressive pacing· Helped a lot · mainvitamin b complex with methylated forms of folate and B12 with betaine and choline· Helped a lotvitamin b complex with methylated forms of folate and B12 with betaine and choline· Helped a lotvitamin b complex with methylated forms of folate and B12 with betaine and choline· Helped a lot
Also tried
aciclovir pills· Helped a lotmyofascial release· Helped a lotstimulants (methylphenidate)· Helpeda lot of supplements· Helpedbreathwork (deep belly breaths)· HelpedQuiviviq (daridorexant)· Helpedmore protein heavy diet· Helpedivabradine· Helpedcreatine· No changetherapy· Worsesalt water / electrolytes· Not saidmagnesium glycinate· Not said
Their words about each treatment
- aciclovir pills · Helped a lot
I had to take aciclovir pills because I had the cold sores every two weeks ... I took them for 6 months straight and the cold sores disappeared pretty much completely.
In context ↗ - stimulants (methylphenidate) · Helped
I was on stimulants because of ADHD, it helped my ME too, less brain fog, more energy, less fatigue. But it comes with the risk of overexertion.
In context ↗ - therapy · Worse
I unfortunately had bad experiences with multiple therapists not taking ME/CFS serious or not understanding it and thus pushing my limits, eventually making me quit therapy all together.
In context ↗ - myofascial release · Helped a lot
I started myofascial release for my muscle pain in the whole legs in a clinic. It has genuinely helped very much.
In context ↗ - wearables / pulse alarm app · Helped a lot
I completely rely on my wearable warning me about high heartrates etc., because I tend to not notice that I'm overexerting myself - and that leads to crashes ... constantly getting reminded by wearables have helped me immensely.
In context ↗ - radical rest · Helped a lot
What actually helps my symptoms improve is radically resting, not doing anything I'm not 100% sure I can do without exacerbating symptoms.
In context ↗ - aggressive pacing · Helped a lot
I started aggressively pacing and stopped listening to the doctors who tried to tell me to move more and that I'm just anxious ... everything was just so much better.
In context ↗ - a lot of supplements · Helped
I also take a lot of supplements and I do feel like they help me recover faster. But I can't specifically tell which ones do what.
In context ↗ - breathwork (deep belly breaths) · Helped
I started doing some breathwork (deep belly breaths) to activate my parasympathetic NS ... I do think it helps a bit.
In context ↗ - Quiviviq (daridorexant) · Helped
Quiviviq did help me fall asleep quite well and I didn't have any side effects, which is rare for me.
In context ↗ - salt water / electrolytes · Not said
started by putting 3g of normal cooking salt (NaCl) and 10g sugar in 1l water ... I started lower because I'm pretty sensitive to everything
In context ↗ - creatine · No change
I take 5-6g daily for a few weeks now. I can't say I notice much.
In context ↗ - more protein heavy diet · Helped
It changed for me when I changed to a more protein heavy diet and cut out a lot of sweets and stuff.
In context ↗ - ivabradine · Helped
I take only 3,25mg once a day, which is below the normal dose ... have a pretty decent effect at 3,25mg now.
In context ↗ - magnesium glycinate · Not said
I use magnesium glycinate for sleep
In context ↗ - vitamin b complex with methylated forms of folate and B12 with betaine and choline · Helped a lot
it actually helped me out of the worst crash that just didn't get better for weeks
In context ↗
Approaches: Pacing · 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 3 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 |
|---|---|---|---|
| onset | ME developed some time after a COVID infection in 2022Developed ME some time after that, unclear but speculated that it's because of COVIDIn context ↗ | Not stated | |
| about a year before April 2026 | completely bedbound and unable to function on their ownI was pretty severe a year ago, completely bedbound and unable to function on my own.In context ↗ | Severe | |
| over a few months after that | recovered to mild-moderate, mostly housebound but leaving the house 1-2 times a weekI recovered to mild-moderate (mostly housebound, but I could leave the house 1-2x per week for up to 2-3 hours).In context ↗ | Moderate | Pacing and the energy envelope |
| February 2026 | crashed two days after visiting a friend / a birthday partyI was out visiting a friend, and boom - two days later i crashed heavy. Bedbound againIn context ↗ | Severe | |
| April 2026 | mostly bedbound but able to sit up all day and walk about a minute at a timeI'm able to sit upright in bed all day again ... get up a few times to go to the toilet ... (So just walking for about a minute each time)In context ↗ | Severe | Radical rest |
| August 2026 | severe crash followed by rolling PEM for monthsI've been in rolling PEM after a severe crash 2-3 months ago.In context ↗ | Severe | |
| October 2026 | got out of the rolling PEM crash but stayed below their previous baselineit's really not comparable to before, it definitely got me out of the crash.In context ↗ | Severe |
Adverse events
- CBT and psychotherapy“bad experiences with multiple therapists not taking ME/CFS serious or not understanding it and thus pushing my limits” In context ↗ Made symptoms worse
- “Everything that included actively trying to expand my capacity was backfiring and making me worse” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“I was overdosed at 10mg and found my dose at 7,5mg” In context ↗ Side effects
- Salt, electrolytes and fluids“I feel like I get more nervous, more heart palpitations and sometimes even slightly nauseos” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I definitely have PEM that presents pretty classical (two days delay, heavy symptom onset that lasts for days to weeks and worsens my overall state massively
In context ↗ - Brain fog
it helped my ME too, less brain fog, more energy, less fatigue
In context ↗ - POTS & dysautonomia
I'm also autistic, ADHD, hypermobile and have POTS and ME
In context ↗ - Sleep problems
I'm absolutely not prone to placebo effect and had severe insomnia.
In context ↗ - Pain & fibromyalgia
When I crash (PEM) it always comes with muscle pain, muscle cramps and tension.
In context ↗ - Heart symptoms & palpitations
I feel like I get more nervous, more heart palpitations and sometimes even slightly nauseos
In context ↗ - Muscle weakness
My muscles switch between tense, cramping and weak.
In context ↗ - Anxiety & low mood
have struggled with anxiety, depression, CPTSD since puberty set in
In context ↗ - Temperature regulation
I'm very sensitive to heat so I still struggle
In context ↗ - Light & noise sensitivity
dann kommen bei mir auch sensory sensitivity dazu
In context ↗ - Gut problems
sometimes even slightly nauseos
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound eight months with long COVID, now nearly back to normal after pacing
Badger 92041, a UK nurse, fell ill hours after a Pfizer vaccine in 2024, after mild long COVID beforehand, and was bedbound for about eight months with severe PEM, headaches, gastroparesis, POTS and chest pain. She credits time, strict pacing, rest, a…
-
Housebound with long COVID, somewhat better after diet and paced exercise
Fell ill with long COVID in September 2022 and was largely housebound with breathlessness, presyncope, head pressure and anxiety. A strict anti-inflammatory diet, iron, B12 and vitamin D, and paced walking and indoor biking brought big gains, but a September…
-
Not enough detail to draw a path
Largely inactive for years with ME/CFS, now much better with methylated B12 and folate
Kestrel 73803 fell ill after a flu in 2011 and spent years largely inactive with crushing lung pain, IBS, insomnia and brain fog, homeless at her sickest. A move to 9,000 feet worsened her for seven years until a methylation disorder was treated with…
-
Long COVID with fatigue and PEM, improved then relapsed after rest and nattokinase
Trail 98004, a fit vaccinated 40-year-old man, got long COVID in 2023 with headaches, chest pain, fatigue, PEM and later sore legs and breathlessness. He credits rest, an anti-inflammatory low-carb diet, fasting, cold showers and supplements including…