Moderate-severe ME/CFS, unable to get out of bed, now mild, credits pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
when i got my diagnosis i was registered to a local ME/CFS clinic and had monthly phone calls to talk about pacing my energy
In context ↗ - At worst: Severe
i was at university when i was diagnosed and i stayed for the rest of the year which led to really awful symptoms for a long time. couldn’t feed myself or get out of bed at all
In context ↗ - Now: Much better
i’ve reached a much more manageable baseline and i can live a somewhat ‘normal’ life ... i’ve been moderate-severe at my lowest and am currently mild
- Began after: stress or burnout
i also think i developed ME due to my high-achieving and high-pressure childhood tendencies
Read from 24 of their posts and comments; links to the 11 this page draws on
Summary
A UK student diagnosed with ME/CFS at university became moderate-severe, unable to feed themselves or get out of bed, and took over a year's leave of absence cared for by their parents. They credit clinic pacing sessions, lots of rest, creatine, NMN, a decent diet and a couple of years of time for reaching a more manageable baseline. Over about a year they went from moderate-severe to mild and now live alone and study at university.
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What they tried
What they credit
Also tried
Their words about each treatment
- coffee · Helped
the caffeine is definitely part of it too and it helps with headaches and brain fog
In context ↗ - ME/CFS clinic phone calls · Helped
i was registered to a local ME/CFS clinic and had monthly phone calls to talk about pacing my energy and understanding symptoms and baselines
In context ↗ - a lot of rest · Helped
i took a leave of absence for over a year ... really limited activity ... over time my body got to a much more manageable baseline
In context ↗ - wheelchair · Helped
i have a wheelchair that i only use rarely but it’s still helpful
In context ↗ - melatonin · Helped
i have some melatonin gummies and ill take around 4mg a little before i need to sleep and that always helps
In context ↗ - creatine · Helped a lot
creatine has really helped with my pain like an unbelievable amount
In context ↗ - NMN · Helped
with my clinic phone sessions, a lot of rest, creatine and NMN, a decent diet, and a couple of years of time, i’ve reached a much more manageable baseline
In context ↗ - time · Helped
a couple of years of time
In context ↗ - stimulant meds · Worse
do you have adhd or have you been prescribed stimulant meds for cfs? ... however i have tried in the past and honestly it just caused me to do too much and burn myself out
In context ↗
Approaches: Pacing · Radical rest · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| at university, when diagnosed | stayed at university after diagnosis; symptoms became awful; could not feed self or get out of bedi was at university when i was diagnosed and i stayed for the rest of the year which led to really awful symptoms for a long time. couldn’t feed myself or get out of bed at allIn context ↗ | Severe | |
| after a leave of absence of over a year | leave of absence, cared for entirely by parents, limited activity, wheelchair; baseline became more manageablei took a leave of absence for over a year and was basically cared for entirely by my mum and dad, really limited activity, had a wheelchair etc. and over time my body got to a much more manageable baselineIn context ↗ | Moderate | Pacing and the energy envelope |
| 2025 | went from moderate-severe to mild; living alone and doing universityi’ve been moderate-severe at my lowest and am currently mild ... i can live a somewhat ‘normal’ life | Mild | Creatine |
Adverse events
- Stimulants (unspecified)“however i have tried in the past and honestly it just caused me to do too much and burn myself out” In context ↗ Made symptoms worse
- Creatine“i just took 3g for the first time today, have drank lots of water but had some stomach problems ... my nausea disappeared straight after the first day” Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
but when i was moderate it really hit me for probably around a week
In context ↗ - Brain fog
it helps with headaches and brain fog
In context ↗ - Sleep problems
i will just continue to sleep for up to around 16 hours. it is dreadful
In context ↗ - Pain & fibromyalgia
creatine has really helped with my pain like an unbelievable amount
In context ↗ - Muscle weakness
when i stay in bed without getting up for too long i just get awful headaches and weakness
In context ↗ - Temperature regulation
i get this too and sometimes it just means i need to sit/lie down for a bit
In context ↗
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