Long COVID
Very severe → relapsedIll 6 years before improving or writingNeeds ongoing treatment
Bedridden for months with long COVID, improved then relapsed despite pacing and LDN
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
It’s been 5 years since a patient attacked me in the Covid wards and started me on my journey.
In context ↗ - At worst: Very severe
I was bed ridden for months. I couldn’t lift my arm off the bed.
In context ↗ - Now: Relapsed
Year 7 - 1 trying to not be bedridden every day, barely functional
In context ↗ - Began after: COVID
It’s been 5 years since a patient attacked me in the Covid wards and started me on my journey.
In context ↗
Read from 38 of their posts and comments; links to the 23 this page draws on
Summary
A UK nurse with long COVID since 2020 was bedridden for months and could not lift an arm. Pacing, physiotherapy and low-dose naltrexone brought real gains: he could walk 200 m and think and speak again. He never worked again and by year seven rated himself 1/10, barely functional, still taking LDN despite nightmares and PTSD.
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What they tried
What they credit
Also tried
Compassionate therapy· Helpedsupplements, vitamins and minerals· No changeEMDR· Worseaciclovir· Not said
Their words about each treatment
- pacing · Helped
The key to my success was family checking in on me and pacing.
In context ↗ - physio exercises · Helped
Trying physio exercises until close to my limit but never passing it.
In context ↗ - meditation · Helped
I took up a lot of meditation, live alone and praise days I can wash and dress myself.
In context ↗ - LDN · Helped a lot
Now I’m doing a lot better with brain fog almost completely gone, less headaches and slightly less fatigue.
In context ↗ - low histamine diet · Helped
only the low histamine diet seemed to help
In context ↗ - supplements, vitamins and minerals · No change
I tried all sorts of supplements, diets, vitamins and minerals
In context ↗ - sleep hygiene and routine · Helped
Pacing, cutting waste energy drains, sleep hygiene and routine have helped me get better than when I started.
In context ↗ - semaglutide (Wegovy) · Helped
I’ve tolerated it pretty well, the positive side effects I’ve had are slightly less brain fog, weight loss, less appetite and it has helped curb my chronic diarrhoea since getting LC.
In context ↗ - EMDR · Worse
it sure has made me a lot worse in the mean time
In context ↗ - Compassionate therapy · Helped
I had a small amount of that and it helped a lot.
In context ↗ - aciclovir · Not said
I was issued it in the army for months at a time.
In context ↗
Approaches: GLP-1 drugs · Diet · Mind-body practices · Pacing · Physiotherapy and rehab · Radical rest
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 |
|---|---|---|---|
| 2020 | COVID infection after being attacked while nursing in the Covid wardsIt’s been 5 years since a patient attacked me in the Covid wards and started me on my journey.In context ↗ | Mild | |
| Year 1 | entirely bedridden for months, could not lift an armI was bed ridden for months. I couldn’t lift my arm off the bed.In context ↗ | Very severe | |
| Year 2 | learned pacing, barely functioningYear 2 - 2 learned pacing and was barely functionIn context ↗ | Severe | Pacing and the energy envelope |
| Year 3 | improved a lot, managed physio and walks to the local parkYear 3 - 4 improved a lot, managed to work on physio and go to the local parkIn context ↗ | Moderate | Pacing and the energy envelope |
| Year 4 | attempted return to work made him much worseYear 4 -5 attempted to return back to work made me much worseIn context ↗ | Severe | |
| 2025-09 | on LDN: walking up to 200 m, awake half the day, unable to work againI can now walk up to 200 metres and now awake nearly 50% of the day.In context ↗ | Severe | Low-dose naltrexone |
| 2026-03 | stopped LDN, back to previous state within four weeksBack to square oneIn context ↗ | Severe | |
| 2026-06 | restarted LDN, able to talk and process againBack on it again and will be for the foreseeable future. I can’t go back to the way I was without it.In context ↗ | Severe | Low-dose naltrexone |
| 2026-10 | self-rated 1/10 for year seven, barely functional, still on LDNYear 7 - 1 trying to not be bedridden every day, barely functionalIn context ↗ | Severe |
Adverse events
- Low-dose naltrexone“I went straight in at 4.5mg and the first 2 weeks were a hardcore white knuckle adventure. No sleep, no sitting still, just go go go, then exhaustion, pass out, then go go go.” In context ↗ Side effects
- Low-dose naltrexone“if I don’t sleep straight after I take it, then I won’t sleep for hours” In context ↗ Insomnia from treatment
- Low-dose naltrexone“PTSD nightmares without endorphins to relieve me is a real sleep killer. Also experiencing dry mouth and increased nightmares.” In context ↗ Mood or psychiatric effects
- Acyclovir“it just gave weird nightmares for me that faded over time” In context ↗ Mood or psychiatric effects
- Semaglutide (Ozempic, Wegovy)“Negative side effects have been excessive and bad gas from both ends, very sulphur, joy.” In context ↗ Gut side effects
- Trauma work (EFT, EMDR, TRE)“Just had an EMDR session this morning to try and reprocess some major military trauma and PEM’d so hard I just woke up.” In context ↗ Made symptoms worse
- Trauma work (EFT, EMDR, TRE)“it sure has made me a lot worse in the mean time.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I’ve got neuro, digestive and fatigue with PEM.
In context ↗ - Brain fog
Symptoms it helped me with but not cured: Memory, pressure headaches, coordination, word finding, being able to manually talk, brain fog.
In context ↗ - POTS & dysautonomia
Now days it’s just incoordination, occasionally the room spinning or constantly banging into things.
In context ↗ - Mast cell (MCAS) & allergies
a lot of the MCAS and flight/fight responses have lessened
In context ↗ - Sleep problems
brutal nightmares, very little sleep and weirdly dry mouth
In context ↗ - Pain & fibromyalgia
a little with general aches and fatigue
In context ↗ - Headaches & migraine
less headaches and slightly less fatigue
In context ↗ - Gut problems
helped curb my chronic diarrhoea since getting LC
In context ↗ - Light & noise sensitivity
a lot less input so sensory overload has more tolerance
In context ↗ - Muscle weakness
I couldn’t lift my arm off the bed.
In context ↗ - Anxiety & low mood
I had no emotions at first but after years of slight improvement, I have laughter and anger, nothing else.
In context ↗ - Tinnitus
Unfortunately tinnitus for me is from the military and so is the PTSD
In context ↗ - Loss of smell or taste
I lost my taste and smell before COVID.
In context ↗
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