ME/CFS
Severe → somewhat betterNeeds ongoing treatment
Mostly bedbound with ME/CFS, now somewhat better with POTS and MCAS drugs
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I also got ME/CFS from Covid.
In context ↗ - At worst: Severe
I am 95% bedbound and only get up to go to the bathroom
In context ↗ - Now: Somewhat better
I was recently able to sit on the balcony for 10 minutes for the first time in over a year.
In context ↗ - Began after: COVID
I also got ME/CFS from Covid.
In context ↗
Read from 65 of their posts and comments; links to the 31 this page draws on
Summary
Comet 39019 became ill with ME/CFS after Covid, spending the first year at the mild end of moderate. IVF about a year in sent them crashing into severe, where they have mostly remained bedbound and reliant on carers, though they can now briefly sit on the balcony. POTS medication gave a little extra usable energy, some medication helped sleep, and MCAS drugs helped, while a seven-month ketogenic diet and an unnamed therapy made them worse.
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What they tried
What they credit
Also tried
cold water chugging· HelpedMestinon· Helped · wore offdaridorexant (Quviviq)· Helpedmelatonin· HelpedKetotifen· HelpedFamotidin· HelpedCromolyn· HelpedNattokinase· Helpedibuprofen· HelpedTENS unit with ear clips for vagus nerve stimulation· Helpedmicropacing by heart rate· Helpedsports compression leg sleeves· Helpedhyposensitization for dust mite allergy· Helpedlymphatic self massage on my face· Worsetreatments at an ME/CFS practice· Worseketogenic diet· Much worseIVF treatment· Much worseintermittent hypoxic therapy· Much worseextra electrolytes and increased water intake· Not saidLDN· Not saidyoga nidra and breathing exercises· Not said
Their words about each treatment
- Metoprolol, later Nebivolol · Helped
I take Nebivolol and it does actually give me a little extra usable energy.
In context ↗ - ketogenic diet · Much worse
I was on a ketogenic diet following the advice of a doctor for about 7 months ... During that time, my POTS got significantly worse.
In context ↗ - IVF treatment · Much worse
the exhaustion of the whole procedure sent me crashing into severe, where I have been ever since
In context ↗ - extra electrolytes and increased water intake · Not said
I was told by the doctor who advised me to try keto to increase my water intake, and I also took extra electrolytes.
In context ↗ - cold water chugging · Helped
I could indeed somewhat manage the POTS if I chugged a lot of very cold water very fast, and that improved my HR for about 30mins or so.
In context ↗ - Mestinon · Helped
at first it worked great for my POTS ... Now I'm more or less back to where I was before starting Mestinon.
In context ↗ - LDN · Not said
I am still titrating up so can't really tell if the LDN is helping much, yet
In context ↗ - daridorexant (Quviviq) · Helped
Quviviq works pretty well for me, but you need to take it consistently and it only really starts working after a month or so.
In context ↗ - melatonin · Helped
I took slow release melatonin at various phases in my illness and they always worked pretty well.
In context ↗ - Ketotifen · Helped
It did help with adrenaline dumps/ tachycardia especially at night and thus improved my sleep.
In context ↗ - Famotidin · Helped
Mine got a lot better with POTS treatment and antihistamines (Ketotifen + Famotidin + Cromolyn).
In context ↗ - Nattokinase · Helped
Nattokinase helps with my POTS, though not nearly as effective as medication.
In context ↗ - D-Ribose · Helped
D-Ribose improves my overall energy a bit
In context ↗ - ibuprofen · Helped
what works wonders for that is good old ibuprofen. Lifts that flu- feeling right off.
In context ↗ - TENS unit with ear clips for vagus nerve stimulation · Helped
I got a TENS unit for vagus nerve stimulation and it slightly improved my sleep and slight helped me relax/calm down my stress response.
In context ↗ - micropacing by heart rate · Helped
I micropace specifically with my HR for my POTS.
In context ↗ - non-stim rest · Helped
I have been incorporating a lot more non-stim rest which I feel is overall good for me.
In context ↗ - yoga nidra and breathing exercises · Not said
I like yoga nidra, especially those with a focus on the body scans.
In context ↗ - sports compression leg sleeves · Helped
I wear these sports compression leg sleeves ... they are better than nothing and they are so much more wearable in the summer.
In context ↗ - hyposensitization for dust mite allergy · Helped
I did one about a decade ago and it really improved my symptoms.
In context ↗ - intermittent hypoxic therapy · Much worse
I did a couple of sessions and it absolutely made me worse.
In context ↗ - lymphatic self massage on my face · Worse
I've tried lymphatic self massage on my face and it gave me the most horrible MCAS flushes.
In context ↗ - treatments at an ME/CFS practice · Worse
Waren teure Behandlungen, die meinen Zustand am Ende nur verschlechtert haben.
In context ↗
Approaches: Beta-blockers · 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 dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | ME/CFS after Covid; still trying to conceive, mild end of moderateI also got ME/CFS from Covid. ... For the first year of being sick, I was still on the mild end of moderate so we kept trying | Moderate |
| about a year into my illness | crashed into severe after IVF treatmentthe exhaustion of the whole procedure sent me crashing into severe, where I have been ever sinceIn context ↗ | Severe |
| — | POTS much worse during seven months of ketogenic dietI was on a ketogenic diet following the advice of a doctor for about 7 months. ... During that time, my POTS got significantly worse.In context ↗ | Severe |
| 2026-04 | POTS improved after stopping keto and eating carbs againwithin less than 2 weeks, my HR went back down to around 110 when standing, and the symptoms got much more bearableIn context ↗ | Severe |
| 2026-07 | able to sit on the balcony for 10 minutesI was recently able to sit on the balcony for 10 minutes for the first time in over a year.In context ↗ | Severe |
| 2026-07 | still bedbound apart from toilet trips; POTS better medicatedI am bedbound and only take toilet tripsIn context ↗ | Severe |
Adverse events
- Keto and low-carb diets“I was on a ketogenic diet following the advice of a doctor for about 7 months. ... During that time, my POTS got significantly worse.” In context ↗ Made symptoms worse
- Keto and low-carb diets“After starting keto, my HR went from about 70 (resting) to easily 140-150 (standing).” In context ↗ Heart rhythm problems
- Keto and low-carb diets“In the beginning, I was sent to the ER once (which was a whole terrible experience on its own) because the symptoms were so severe.” In context ↗ ER visit
- Mestinon / pyridostigmine“I get these all the time as a side effect from Mestinon. ... Didn't have them before.” Side effects
- “Waren teure Behandlungen, die meinen Zustand am Ende nur verschlechtert haben.” In context ↗ Made symptoms worse
- “I did a couple of sessions and it absolutely made me worse. ... the session absolutely sent me over the edge.” In context ↗ Made symptoms worse
- Keto and low-carb diets“Keto made my POTS significantly worse, and had no discernible benefit for me. Also caused horrible constipation.” In context ↗ Gut side effects
- “I didn't get pregnant, but instead the exhaustion of the whole procedure sent me crashing into severe, where I have been ever since.” In context ↗ Made symptoms worse
- Manual lymphatic drainage“I've tried lymphatic self massage on my face and it gave me the most horrible MCAS flushes.” In context ↗ Autoimmune or inflammatory flare
Symptoms mentioned
Anxiety & low moodBreathlessnessFlu-like symptomsGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Then I have another 2-3 days (sometimes more) with just full blown PEM without breaks, followed by another 2-3 days
In context ↗ - POTS & dysautonomia
I still have POTS and am mostly bedbound
In context ↗ - Mast cell (MCAS) & allergies
My skin issues are more related to dry skin, rosacea and similar rashes related to MCAS.
In context ↗ - Sleep problems
And my sleep still sucks. I can only sleep when medicated.
In context ↗ - Heart symptoms & palpitations
heart feeling like it's going to jump out of my chest
In context ↗ - Breathlessness
pain and tightness in the chest, difficulty breathing
In context ↗ - Muscle weakness
my hands and arms are just too weak to manage
In context ↗ - Flu-like symptoms
My biggest problem when in PEM is the flu-like feeling
In context ↗ - Temperature regulation
I often get temperature dysregulation where I feel very cold despite actually being very hot.
In context ↗ - Gut problems
Also caused horrible constipation.
In context ↗ - Anxiety & low mood
My therapist, who has seen me through years of depression before I got sick with ME
In context ↗
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