Long COVID
Very severe → relapsedIll 5 years before improving or writing
Very severe long COVID, moderate after neck stretches and brain retraining, then relapsed
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 5 years
- Last post
- Oct 2026
In their words
- At worst: Very severe
At my lowest, I was urinating in a bowl next to my bed because i was too weak to walk to the toilet.
In context ↗ - Now: Relapsed
I was starting to recover to the point where I was moderate. Then stupidly I did too much and I’ve crashed back to severe.
In context ↗ - Began after: COVID
I’ve had long Covid for just over 5 years now.
Read from 75 of their posts and comments; links to the 32 this page draws on
Summary
A UK man fell ill in 2021 at 22 with tremors, headaches and vision problems, worsening to very severe ME/CFS where he could not speak for months and urinated in a bowl beside his bed. Neck stretches and brain retraining lifted him to moderate in June 2025, but walks repeatedly crashed him back to severe. By late 2026 he was only randomly improving, and a 2024 psychiatric admission left him with PTSD.
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What they tried
What they credit
Also tried
weed / THC· Helpedbrain retraining (autonomic nervous system relaxation techniques)· Helpedlorazepam· Helpedcaffeine· No changezopiclone· No changemirtazapine· Worseanti depressants (forced in hospital)· Worseanti psychotics (forced in hospital)· Worsegraded exercise therapy (forced) and pushing through symptoms· Much worsealcohol· Not saidcounselling / online therapy· Not saidpacing and rest· Not said
Their words about each treatment
- caffeine · No change
I find that caffeine has little to no effect on me anymore.
In context ↗ - neck stretches and gentle neck yoga · Helped a lot
I did some gentle neck yoga exercises and it released all this blocked up energy from my system and now I feel a lot better.
In context ↗ - alcohol · Not said
I went down this road and trust me, it’s not worth it
In context ↗ - weed / THC · Helped
Weed was actually helping me but for some reason it ended up triggering some psychotic episodes for me
In context ↗ - counselling / online therapy · Not said
I see a councillor weekly at the moment it’s the first thing I did when I felt I had enough energy.
In context ↗ - brain retraining (autonomic nervous system relaxation techniques) · Helped
I have also been doing brain retraining (autonomic nervous system relaxation techniques).
In context ↗ - zoom meditation class for people with ME and long Covid · Helped
I did a zoom meditation for people with ME and long Covid and it made me feel extremely peaceful
In context ↗ - slow and deep breaths · Helped
The thing I’ve found the most helpful is taking slow and deep breaths.
In context ↗ - zopiclone · No change
I have tried zopiclone (sleeping tablets) but it doesnt seem to do anything
In context ↗ - pacing and rest · Not said
lots of rest avoiding things that trigger PEM
In context ↗ - graded exercise therapy (forced) and pushing through symptoms · Much worse
I was forced through graded exercise therapy and mental health medications. It almost killed me
In context ↗ - mirtazapine · Worse
I tried mirtazapine and it didn’t help and actually made me have some really bad suicidal thoughts so I stopped that.
In context ↗ - lorazepam · Helped
I take lorazepam when ever I feel really sick and it calms me a bit
In context ↗ - quitting cigarettes · Helped
I quit just because constantly going outside for a cigarette was too much for me physically. ... It has the added benefit that I feel generally more healthy too.
In context ↗ - anti depressants (forced in hospital) · Worse
Forced to take anti depressants and anti psychotics and threatened to be injected with them if I refused.
In context ↗
Approaches: Mind-body practices
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 6 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 |
|---|---|---|
| 2022 (6 months in) | temporary recovery, went back to universityThen after 6 months I "recovered" and went back to uni.In context ↗ | Mild |
| 2022 (a week later) | crashed after a week back at universityAfter a week of uni I crashed again and seem to have been in a crash ever since then.In context ↗ | Not stated |
| 2023 (about 2 years in) | bedbound, unable to speak for 6 months, in a pitch black roomI was urinating in a bowl next to my bed because i was too weak to walk to the toilet.In context ↗ | Very severe |
| June 2025 | improved from severe to moderate after neck stretches and brain retrainingThe past 2 days I have recovered to the point where I would say I am only moderate now.In context ↗ | Moderate |
| 2025-06-27 | crashed after a walk with mum that was too farit crashed me back to ‘severe’ for a few daysIn context ↗ | Severe |
| 2025-07-02 | recovered from the crash back to moderateI recovered from the crash and I am back to moderate.In context ↗ | Moderate |
| 2025-07-17 | crashed back to severe after doing too muchThen stupidly I did too much and I’ve crashed back to severe.In context ↗ | Severe |
| 2026-01-13 | stable, short walks and walking around the houseI can go for short walks and also an fine walking around my house but still feel way better lying down.In context ↗ | Moderate |
| 2026-08-09 | coming out of a two-month crash with no change in routinethese last few days I’ve literally felt slightly better every dayIn context ↗ | Moderate |
| 2026-08-30 | mental health collapsed into severe depressionthis past year my mental health just fell off a cliffIn context ↗ | Severe |
| 2026-10-25 | randomly starting to improve out of a three-year crashThese past few weeks I have randomly started improving, but I feel so strange.In context ↗ | Severe |
Adverse events
- Zopiclone (Imovane)“I just end up waking up feeling really drowsy and confused” In context ↗ Side effects
- Mirtazapine (Remeron)“it didn’t help and actually made me have some really bad suicidal thoughts so I stopped that” In context ↗ Suicidal thoughts or attempt
- Graded exercise therapy (GET)“they kept forcing me to get out of bed and walk around while I was very severe” In context ↗ Made symptoms worse
- “the treatment of my CFS has worsened a lot of my pre existing mental health conditions and even led to some psychotic episodes” In context ↗ Mood or psychiatric effects
- Cannabis (THC, marijuana)“Weed was actually helping me but for some reason it ended up triggering some psychotic episodes for me” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I still experience crashes when I do too much.
In context ↗ - Brain fog
It seems im mostly affected by mental effort, such as having a conversation with someone
In context ↗ - Sleep problems
One of my worst symptoms is crippling insomnia.
In context ↗ - Pain & fibromyalgia
I did get a deep pain in my arm and leg muscles but it’s gone for me now I am moderate
In context ↗ - Headaches & migraine
extreme headaches
In context ↗ - Light & noise sensitivity
I also tolerate light again
In context ↗ - Heart symptoms & palpitations
heart rate going crazy
In context ↗ - Anxiety & low mood
I seem to have become severely depressed recently due to the fact I have been unwell for so long.
In context ↗ - Temperature regulation
I used to get my hands and feet going ice cold but I haven’t had it for a long time.
In context ↗ - Muscle weakness
too weak to walk to the toilet
In context ↗ - Vision problems
vision problems
In context ↗ - Breathlessness
Same with me, when I’m lying down I can tolerate longer conversations but it still does wipe me out
In context ↗
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