ME/CFS for 4 Decades: Catherine Johns Fully Recovered at 75!
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving
- 42 years
- Published
- No date given
In their words
- Condition: ME/CFS
Catherine's Journey with mecfs lasted 43 years
Watch the video ↗From the video’s captions - At worst: Very severe
I could hardly walk to the bathroom ... couldn't bear light sound noise
Watch the video ↗From the video’s captions - Now: Near normal
I don't think I'm 100%
Watch the video ↗From the video’s captions - Began after: stress or burnout
there was chronic stress for years involving custody of of of my children
The same story is also published at healwithliz.com; it is counted once.
Summary
Catherine Johns became ill with ME/CFS at 31 in 1981 after chronic stress, and was bedbound for several years with light and noise intolerance. A remission about four years in, which she credits to visualising recovery, ended when symptoms returned in a stressful teaching job. At 75 she credits brain retraining, CBT and trauma therapy for near-normal function, though she says she is not 100% and still takes sleep medication.
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What they tried
What they credit
Also tried
Their words about each treatment
- half strength pethadine injection · Worse
he gave me a half strength pethadine injection it was so severe and then my muscles all went spasm
Watch the video ↗From the video’s captions - visualising my health improving · Helped a lot
I was visualizing my health you know improving as the buds you know flowered and I became completely well
Watch the video ↗From the video’s captions - the 80s Jane Fonda workout · Helped
I was doing the 80s Jane fond workout
Watch the video ↗From the video’s captions - protein powder · No change
I don't know if it did or not and I've tried it since and it didn't
Watch the video ↗From the video’s captions - cognitive behaviour therapy · Helped
I have a wonderful cognitive behavior therapist I've been seeing on and off for more than 25 years
Watch the video ↗From the video’s captions - DNRS · No change
I did try D dnrs before that ... neither of those worked for me
Watch the video ↗From the video’s captions - Dan noer's program · Helped a lot
I think those those have been the main factors the therapy the brain training all the holistic thing
Watch the video ↗From the video’s captions - trauma therapy · Helped
I went and did some more trauma therapy and that was really helpful as well
Watch the video ↗From the video’s captions - sleeping medication · Helped
I wasn't sleeping so I got some medication for sleeping
Watch the video ↗From the video’s captions - walking and an exercise class · Helped
walking up to 30 minutes a day plus working out three times a week
Watch the video ↗From the video’s captions - good diet · Helped
I think those those have been the main factors the therapy the brain training all the holistic thing of course you know the the Clean Diet movement now
Watch the video ↗From the video’s captions - serapa (Serepax), prescribed by a psychiatrist · Worse
eventually he sent me to a psychiatrist who prescribed serapa I got addicted to that and it made me worse
Watch the video ↗From the video’s captions - a form of pacing: a deep rest for an hour each afternoon · Helped
I worked out that if I had a rest in the afternoon for 1 hour at 2:00 and when to into a deep state of rest I'd be fine for the rest of that day
Watch the video ↗From the video’s captions
Approaches: CBT & mindset · Brain retraining · Exercise and activity · Other drugs and medicines · Trauma & somatic work
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. 1 step has no time and sits in story order between the steps around it. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 1981, age 31 | Collapsed in front of her English class after years of chronic stressI became very ill suddenly in front of an English class I was teachingWatch the video ↗From the video’s captions | Severe | |
| first few years | In bed in a darkened room, barely able to walk to the bathroom, unable to bear light or soundI could hardly walk to the bathroom everyone knows this story couldn't bear light sound noiseWatch the video ↗From the video’s captions | Very severe | |
| after about four years | Remission on her own with visualisation and the Jane Fonda workout; back at full-time workI was visualizing my health you know improving as the buds you know flowered and I became completely wellWatch the video ↗From the video’s captions | Recovered | Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust) |
| two and a half years later | Gradual relapse in a stressful teaching job, then collapsed again and was told she would never work againI was extremely ill when I collapsed again as I had been in the beginning in bed and unable to to really walk aroundWatch the video ↗From the video’s captions | Very severe | |
| about 1987 onwards | In and out of relapses for decades; later managed with a daily afternoon rest and even travelled aloneI'd be fine for the rest of that day but I still couldn't work as on my book as much as I would have likedWatch the video ↗From the video’s captions | Mild | Pacing and the energy envelope |
| two years ago | Started Dan Neufeld's brain training program, then trauma therapy and sleep medicationdid his program I found it was the most comprehensively well-presentedWatch the video ↗From the video’s captions | Mild | Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust) |
| age 75 | Normal days with walks, exercise classes, research and shopping; not quite 100% and still building work capacityI don't think I'm 100%Watch the video ↗From the video’s captions | Near normal | Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust) |
Adverse events
- “a psychiatrist who prescribed serapa I got addicted to that and it made me worse” Watch the video ↗From the video’s captions Made symptoms worse
- “come off that cold turkey withdrawal” Watch the video ↗From the video’s captions Withdrawal problems
- “then my muscles all went spasm” Watch the video ↗From the video’s captions Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
then I crashed for another couple of years
Watch the video ↗From the video’s captions - Brain fog
reading and writing has always been difficult because of brain fog
Watch the video ↗From the video’s captions - Headaches & migraine
I had such bad headaches
Watch the video ↗From the video’s captions - Light & noise sensitivity
couldn't bear light sound noise
Watch the video ↗From the video’s captions - Sleep problems
I wasn't sleeping so I got some medication for sleeping
Watch the video ↗From the video’s captions
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