Very severe ME/CFS with rolling PEM, now recovered after functional medicine protocol
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 10 years
- Last post
- May 2026
In their words
- At worst: Very severe
I was very severe for two years after a few years moderate/mild undiagnosed. ... I ended up in a very dark acary place unable to care for myself.
In context ↗ - Now: Recovered
I haven’t had PEM or fatigue in a year now ... I no longer have to pace and wake up energised and back to full time work like it never happened.
In context ↗
Read from 31 of their posts and comments; links to the 14 this page draws on
Summary
Glade 29022 became ill in 2014 and has had ME/CFS since around 2016, relapsing after each virus. After mild and moderate years they were very severe for two years around 2024, unable to care for themselves with rolling PEM. A functional medicine diet, detox and nervous-system protocol, with lymphatic drainage and HBOT, was followed by recovery and full-time work without PEM; POTS, visual snow, tinnitus and neck pain remain.
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What they tried
What they credit
Also tried
Their words about each treatment
- Tumeric · Helped
Tumeric actually really helps me!
In context ↗ - SSRI · Worse
It happened after I started a new medication which i discontinued and it never went away
In context ↗ - pacing · Helped
If I pace properly I have ZERO symptoms and feel 100% well
In context ↗ - Visible app · Not said
I track my HRV using the visible app
In context ↗ - functional medicine protocol · Helped a lot
I decided to commit for 12 months to their diet/detox/nervous system support and I’m now back to full time work
In context ↗ - mould avoidance · Helped
mould was a big driver that I was unaware of
In context ↗ - oxygen therapy · Much worse
did oxygen therapy (for my severe cfs) and it made me SO much worse
In context ↗ - lymphatic drainage · Helped
I started focusing on lymphatic drainage instead
In context ↗ - Hbot · Helped a lot
combined it with Hbot and it was amazing for me
In context ↗ - ketotifen · Not said
I started on 1mg no issues
In context ↗ - treating MCAS · Helped a lot
Treating MCAS was part of what put my cfs into remissiob
In context ↗
Approaches: Hyperbaric & oxygen · Alternative therapies · Mould avoidance
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 |
|---|---|---|
| 2014 | ME/CFS begins, relapsing after virusesI’ve been sick since 2014In context ↗ | Mild |
| 2022 | down to moderate, part-time work onlyI was moderate in 2022 and could work part time at my own flexibility but couldn’t do anything elseIn context ↗ | Moderate |
| 2024 | very severe for two years, unable to care for selfI ended up in a very dark acary place unable to care for myselfIn context ↗ | Very severe |
| 2025 | gradual improvement on functional medicine protocolIt took me about 6 months to start really feeling improvements but 3 to realise I was on the right trackIn context ↗ | Severe |
| 2026-01 | no PEM or fatigue for a year, back to full-time workI no longer have to pace and wake up energised and back to full time work like it never happened.In context ↗ | Recovered |
| 2026-05 | CFS recovered but POTS, visual snow, tinnitus and neck pain remainI’m now recovered from cfs but still have this symptomIn context ↗ | Recovered |
Adverse events
- Antidepressants (unspecified)“It happened after I started a new medication which i discontinued and it never went away- it’s been over a year ... mine started when I started taking an SSRI.” Side effects
- Oxygen therapy (home oxygen, concentrator)“I was out of mold for two years then did oxygen therapy (for my severe cfs) and it made me SO much worse because my toxic load was so high.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I haven’t had PEM or fatigue in a year now
In context ↗ - POTS & dysautonomia
I still have pots!
In context ↗ - Tinnitus
I also get tinnitus still
In context ↗ - Vision problems
I was diagnosed with visual snow syndrome
In context ↗ - Pain & fibromyalgia
I still have some mild pain in my neck
In context ↗ - Mast cell (MCAS) & allergies
Treating MCAS was part of what put my cfs into remissiob
In context ↗
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