ME/CFS
Severe → somewhat betterIll 2 years before improving or writingNeeds ongoing treatment
ME/CFS worsening until forced to stop work, some improvement with pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have moderate to severe ME/CFS type long covid
In context ↗ - At worst: Severe
my baseline is in the severe range
In context ↗ - Now: Somewhat better
things have become much more stable and a bit better again
In context ↗ - Began after: COVID
I didn't put it all together with my prior covid infections for ages
Read from 271 of their posts and comments; links to the 52 this page draws on
- Jul 2025
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Summary
They developed ME/CFS-type long COVID and pushed on at work for too long until worsening forced them to stop. Strict pacing, and later a low-histamine diet for bowel inflammation, left them relatively stable but with energy for only about 1–2 hours of activity a day; they also reported a setback and still getting worse. Pacing brought the gains; they believe H. pylori antibiotics triggered histamine intolerance and about 10 kg weight loss.
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What they tried
What they credit
Also tried
cold showers and baths· Helped · wore offcetirizine· Helpedpilates and gentle mobility exercises· Helpedpropranolol· Helpedaspirin/paracetamol/caffeine tablets (Thomapyrin, Anadin)· Helpedover the counter painkillers (paracetamol)· Helpeddextromethorphan (Robitussin)· Helpedprescription sleep medication· Helpeddaylight lamp / wake up light· HelpedFL-41 and FL-60 migraine glasses· Helpedginger and peppermint· Helpedginger and peppermint· Helpedice packs and cooling migraine head wraps· Helpednutritionally complete meal replacement drinks· Helpedbreathing exercises· Helpedcalorie deficit· HelpedCBT· No changeiron supplements· Worseintense exercise / cardio· Worseolanzapine· Worsemesalamine· Worseantibiotics for H. pylori· Much worseprobiotic supplements· Not said
Their words about each treatment
- iron supplements · Worse
So, I took iron supplements for about a year. I got plenty of side effects but no improvement, despite my levels going up.
In context ↗ - intense exercise / cardio · Worse
I have to avoid cardio and any form of intense exercise, because it triggers my post exertion malaise.
In context ↗ - antibiotics for H. pylori · Much worse
I believe my antibiotics treatment for H. Pylori triggered my histamine intolerance.
In context ↗ - olanzapine · Worse
I had no improvements but plenty of side effects with the drugs that were prescribed for my GI issues (olanzapine and mesalamine).
In context ↗ - CBT · No change
Didn't help much though, cause my long covid still kept getting worse.
In context ↗ - pacing · Helped a lot
Slowing down and really focusing on pacing and making my daily living activities more accessible for my current needs, really helped me finding the calmness and activity level that allowed me to stabilise and improve.
In context ↗ - strict bed rest · Helped
I usually put myself on pretty strict bed rest (except for going to the toilet).
In context ↗ - cold showers and baths · Helped
Haven't found any foods or supplements helping me, but cold showers and bathes do help.
In context ↗ - cetirizine · Helped
it does make me sleepy (although it's meant to be a non-drowsy antihistamine) and it let's me sleep through the night, which is quite an improvement.
In context ↗ - pilates and gentle mobility exercises · Helped
slow paced, low to medium intensity strengthening workouts, like pilates, actually seems to work quite well, as long as I don't overdo do it.
In context ↗ - kefir, ayran and sauerkraut · Helped
Dietary probiotics (kefir, ayran and sauerkraut) helped me much more than any supplement.
In context ↗ - probiotic supplements · Not said
seems to work better than any probiotic supplements I have tried.
In context ↗ - low histamine diet · Helped
After stopping those and starting a low histamine diet, things have definitely improved somewhat.
In context ↗ - gluten free diet · Helped
For me the worst culprits turned out to be gluten (had never been an issue before) and rolling PEM.
In context ↗ - propranolol · Helped
I feel propranolol helps with my brainfog quite a bit.
In context ↗ - aspirin/paracetamol/caffeine tablets (Thomapyrin, Anadin) · Helped
Aspirin/paracetamol/caffeine combo medications (e.g. thomapyrin intensiv, anadin) work fairly well for me.
In context ↗ - over the counter painkillers (paracetamol) · Helped
Over the counter painkillers tend to help a bit.
In context ↗ - dextromethorphan (Robitussin) · Helped
dextromethorphan seems to help lowering the severity and duration of my PEM. It's not a miracle drug, but does help a bit.
In context ↗ - prescription sleep medication · Helped
I find it quite helpful to use antihistamines and prescription sleep medication to get proper rest.
In context ↗ - Visible app and armband · Helped
I am finding visible quite helpful, because 1. it has surprised me with how some activities I considered low energy, actually make my heartrate spike more than I thought
In context ↗ - daylight lamp / wake up light · Helped
I've picked this suggestion up from a long covid research presentation and it has helped me quite a bit.
In context ↗ - FL-41 and FL-60 migraine glasses · Helped
I have FL-41 and FL-60 glasses. Both are helpful, but I prefer the FL-60.
In context ↗ - ginger and peppermint · Helped
I find ginger and peppermint helpful as well.
In context ↗ - ice packs and cooling migraine head wraps · Helped
I find an ice pack under my neck and/or a cooling eye mask or migraine head wrap somewhat helpful.
In context ↗ - nutritionally complete meal replacement drinks · Helped
I find nutritionally complete meal replacement drinks helpful, as the body doesn't need to work so hard to get the nutrients.
In context ↗ - fluids and electrolytes · Helped
Lots of fluids, some electrolytes, healthy diet and lots of rest.
In context ↗ - breathing exercises · Helped
focusing on belly breathing does seem to help resolving it faster.
In context ↗ - calorie deficit · Helped
In my personal experience, it works fine, when I'm pacing well and staying within my energy envelope.
In context ↗
Approaches: POTS medication · Diet · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS-type long covid after covid infection; kept working with a high PEM thresholdAt the beginning, it took a lot more for me to trigger PEM (e.g. an intense workout or extremely long and busy work days)In context ↗ | Mild | |
| — | symptoms worsened while still working: near-constant headaches, weekly PEM crashes, sleeping whenever not workingnear constant headaches, palpitations, lightheadedness, brain fog, insomnia, lack of appetiteIn context ↗ | Mild | |
| 2024-06-18 | stopped working and started pacing; the migraine-like PEM attacks stoppedonce I stopped working and started pacing, I stopped having thoseIn context ↗ | Moderate | Pacing and the energy envelope |
| 2024-07-18 | setback of unclear trigger, still worseningBy setback started two months ago and I think I'm still getting worse despite having brought my baseline activity levels quite a bit since.In context ↗ | Moderate | |
| 2024-08-20 | first normal digestion day in eight months after starting a low histamine dietYesterday I had the first full day of entirely normal digestion in eight monthsIn context ↗ | Moderate | Low-histamine diet |
| 2025-07-13 | declined to moderate-severe ME/CFS; thinking about mobility aids to get out againI have moderate to severe ME/CFS type long covidIn context ↗ | Severe | |
| 2026-01-20 | capacity so low that even the most basic necessities exceeded their limits after external circumstancesnow my capacity is so low that it's really difficult to not exceed my limits with even just the most basic necessitiesIn context ↗ | Severe | |
| 2026-01-30 | pacing at a very low baseline brought symptom-free days and better quality of lifestaying within my energy envelope means not exceeding approximately 30 minutes of mild and paced activity per dayIn context ↗ | Severe | Pacing and the energy envelope |
| 2026-09-03 | stable or slowly improving on strict pacing, still on the moderate end of severeit does feel much better and quite reassuring to be mostly on a stable or upwards trajectory these daysIn context ↗ | Severe | Pacing and the energy envelope |
Adverse events
- Antibiotics (unspecified)“I got worse from antibiotics, though they were different ones.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“I believe my antibiotics treatment for H. Pylori triggered my histamine intolerance. ... I developed major digestive issues with confirmed bowel inflammation and about 10kg of weight loss.” In context ↗ Gut side effects
- Iron infusion / ferritin repletion“So, I took iron supplements for about a year. I got plenty of side effects but no improvement, despite my levels going up.” In context ↗ Side effects
- Olanzapine (Zyprexa), Mesalazine / mesalamine“I had no improvements but plenty of side effects with the drugs that were prescribed for my GI issues (olanzapine and mesalamine).” In context ↗ Side effects
- Cetirizine (Zyrtec)“it keeps me feeling sleepy during the following day, which doesn't exactly make the fatigue better either.” In context ↗ Side effects
- Cetirizine (Zyrtec)“When I take one single tablet, it makes me feel drowsy for two days straight.” In context ↗ Side effects
- Cetirizine (Zyrtec)“I get the itching as well, whenever I stop taking antihistamines even though I've never taken them more than a week or two at a time.” In context ↗ Withdrawal problems
- Propranolol (Inderal)“Just be aware that it can make you quite sleepy. That mostly sorted itself out in my case within 1-2 weeks though.” In context ↗ Side effects
- Cryotherapy and cold exposure“over time it turned out it actually drained a lot of energy and made me more fatigued later in the day.” In context ↗ Made symptoms worse
- “taking pain killers constantly just caused more PEM.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I have to avoid cardio and any form of intense exercise, because it triggers my post exertion malaise.
In context ↗ - Brain fog
About 90% of the work I used to do, is about using the brain, which is now all fogged up.
In context ↗ - POTS & dysautonomia
I do rinse off with cold water before getting out, because it reduces my orthostatic intolerance.
In context ↗ - Mast cell (MCAS) & allergies
since my first infection, I have developed fairly severe allergic reactions to mosquito bites
In context ↗ - Sleep problems
I also get vivid dreams and disrupted sleep.
In context ↗ - Pain & fibromyalgia
I only developed the widespread muscle pains, as I experience them now, a couple of years into it.
In context ↗ - Headaches & migraine
I get the same, both over night and after naps as well. Haven't found a way to get rid of the headaches
In context ↗ - Gut problems
I developed major digestive issues with confirmed bowel inflammation and about 10kg of weight loss.
In context ↗ - Light & noise sensitivity
At may worst I've barely been able to tolerate any screen time, no tv, no laptop, no lights
In context ↗ - Breathlessness
I mainly have shortness of breath with exercise (e.g. walking uphill/stairs)
In context ↗ - Heart symptoms & palpitations
the palpitations and chest pains tend to come and go, depending on how well I am able to pace
In context ↗ - Muscle weakness
starting or worsening headaches, heavy limbs, brainfog, feeling cold, lightheadedness, tiredness
In context ↗ - Anxiety & low mood
For me it did resolve within a few weeks, when I stopped working.
In context ↗ - Flu-like symptoms
for me the low grade fever is usually one of the later ones
In context ↗ - Temperature regulation
For me those tend to be any increases in headaches, muscle weakness/heaviness/burning, feeling cold/chills, tiredness, racing heart and shortness of breath.
In context ↗ - Vision problems
The blurriness is still pretty common.
In context ↗
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