ME/CFS
Severe → no benefit
ME/CFS at times unable to leave bed, still limited after psychologist and Buddhist acceptance
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Mar 2018
In their words
- Condition: ME/CFS
The condition is myalgic encephalomyelitis (ME), also often known as chronic fatigue syndrome (CFS) and frequently referred to by ME/CFS.
In context ↗ - At worst: Severe
I didn't have enough energy to leave the bed, probably not even to sit on it.
In context ↗ - Now: No benefit
my condition kept slowly but steadily deteriorating
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
An education postgrad in northern Europe, he was diagnosed with ME/CFS after recurrent infections that followed exercise. Over years he gave up cycling, gym, dancing, his PhD and teaching, at times unable to leave his bed and unable to read or concentrate. He credited a psychologist specialising in ME with changing his life, and said Buddhist acceptance helped him let go; by 2018 he could stand and talk only briefly, and he described a 100 m walk leaving him in pain.
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What they tried
Also tried
a psychologist who specialized in treating ME patients· Helped a lotquitting all activities that could jeopardize my health· HelpedBuddhism· Helpedphysical exercises· Much worsesome medication, often recommended to people in this condition· Much worsepainkillers· Not said
Their words about each treatment
- physical exercises · Much worse
every time I tried anything I'd fall ill for at least a week
In context ↗ - quitting all activities that could jeopardize my health · Helped
Having started to avoid any physical exercises the worsening of my condition slowed down considerably
In context ↗ - painkillers · Not said
it was probably I had at least had some painkillers. I had them pretty much daily
In context ↗ - some medication, often recommended to people in this condition · Much worse
try some medication, often recommended to people in this condition, but which in my case (just like many others') only made things considerably worse
In context ↗ - Buddhism · Helped
the solution for me was to just let go ... Buddhism has helped me a lot with this.
In context ↗ - a psychologist who specialized in treating ME patients · Helped a lot
It's not an understatement to say that my life changed after talking to him a few times.
In context ↗
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 |
|---|---|---|---|
| onset | recurrent infections after physical exercise led to an ME/CFS diagnosisI had been diagnosed a few years prior, after a period of recurrent infections that followed physical exercises.In context ↗ | Mild | |
| — | gave up cycling, running, gym, dancing, PhD work and finally teaching as the illness steadily worsenedThe very last thing I had to let go was teaching.In context ↗ | Moderate | |
| — | bedridden for weeks, crying under the blankets alone in his flat, unable to read or watch anythingI didn't have enough energy to leave the bed, probably not even to sit on it.In context ↗ | Severe | |
| 2018-03-22 | acceptance and talking to a psychologist who specialises in ME changed his life; can stand and talk briefly but must sit and restmy life changed after talking to him a few times ... just from standing here and the effort of talking to you I'm already starting to get a headache so excuse me while I sit down and rest for a bit | Moderate | CBT and psychotherapy |
Adverse events
- “but which in my case (just like many others') only made things considerably worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migrainePain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
every time I tried anything I'd fall ill for at least a week
In context ↗ - Flu-like symptoms
If I do larger efforts, I'll be bed ridden for a week with a fever and lots of pain
In context ↗ - Pain & fibromyalgia
might get a bit of headache and muscle pain
In context ↗ - Headaches & migraine
I'm already starting to get a headache
In context ↗ - Brain fog
I didn't even have enough concentration to try and read or watch anything for distraction
In context ↗ - Sleep problems
a long sequence of under-slept nights permeated with sudden awakenings due to never-ending nightmares
In context ↗ - Anxiety & low mood
the anxiety and frustration of losing a life I had made up are so much worse than my actual life
In context ↗