15-Year Battle with Severe ME/CFS: Here's What Finally Worked! (Martina's Story)
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving
- 12 years
- Published
- No date given
In their words
- Condition: ME/CFS
it took me 11 years to get the right diagnosis that was an ecfs
Watch the video ↗From the video’s captions - At worst: Severe
spent a long time severely ill following the usual medical path
Watch the video ↗From the video’s captions - Now: Much better
I still have to do pacing to this day
Watch the video ↗From the video’s captions - Began after: another virus
then there came this virus and then my body said no
Summary
Martina was severely ill for years after a fever in 2009, before her ME/CFS diagnosis at 11 years. Pacing helped her stabilise and avoiding dairy eased her gut pain, but a sudden bereavement undid those gains. Two years of psychotherapy and expressive writing, then trauma release exercises (TRE), brought the biggest change. She later became self-employed, still paces, and says she must lie down for two hours after 30 minutes of activity.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pacing · Helped
the first thing I started with was pacing it was helpful
Watch the video ↗From the video’s captions - Avoiding dairy · Helped
the most helpful thing was avoiding Dairy and I still do that
Watch the video ↗From the video’s captions - Paleo diet · No change
all these paleo things um uh weren't helpful for me
Watch the video ↗From the video’s captions - Other restrictive diets · Worse
some diets I think were even more harmful
Watch the video ↗From the video’s captions - Functional medicine · No change
I went into this functional medicine stuff and I thought that would be the solution for everything but it wasn't
Watch the video ↗From the video’s captions - Supplements · No change
I spent two much money on supplements and I think there was not really a big difference
Watch the video ↗From the video’s captions - Railen's channel and book (mindset change) · Helped
the mindset change that was you ra and you and your channel
Watch the video ↗From the video’s captions - ANS rewi program (Dan NOA) · Helped
I did his program ANS rewi and really like that program
Watch the video ↗From the video’s captions - Classical CBT with a psychotherapist · Helped
I had a psychotherapist fortunately it was the classical CBT
Watch the video ↗From the video’s captions - Expressive writing (JournalSpeak) · Helped
Journal speak and this is a form of expressive writing
Watch the video ↗From the video’s captions - EAE (emotional awareness and expression therapy) · Helped
working through my past was really something very important
Watch the video ↗From the video’s captions - Somatic experiencing · Not said
I went a year in somatic experiencing
Watch the video ↗From the video’s captions - Scar treatment (old belly scar) · Worse
I saw that person and he did that scar treatment
Watch the video ↗From the video’s captions - TRE (tension and trauma release exercises) · Helped a lot
this method is called TR tension and Trauma release exercises
Watch the video ↗From the video’s captions - Setting boundaries (permission slip) · Helped
I put it onto the wall at that time and found it really really helpful
Watch the video ↗From the video’s captions - breath coach · Not said
I worked with a press coach a while it was last year
Watch the video ↗From the video’s captions
Approaches: CBT & mindset · Brain retraining · Diet · Pacing · 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. 2 steps have no time and sit in story order between the steps around them. 3 steps say too little to place on the scale and are only in the table. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2009 | glandular fever, never fully recovered; went back to full-time workit all started in 2009 there I had Clen feverWatch the video ↗From the video’s captions | Mild | |
| 2009 to about 2020 | health declined for years with more and more symptoms until she was severely ill; diagnosed after 11 yearsover the years my my condition became worse and worse and I got more symptoms and more symptomsWatch the video ↗From the video’s captions | Severe | |
| after diagnosis | condition stabilised with pacing, then improved with dropping dairy and a mindset shiftthrough pacing I was really able to stabilize the conditionWatch the video ↗From the video’s captions | Moderate | Pacing and the energy envelope |
| — | a loved one died in an accident; lost the gains she had madeeverything I yeah I I reached before was was gone because that was really too much for meWatch the video ↗From the video’s captions | Not stated | |
| the following two years | trauma processing with CBT and expressive writing improved her cognitively and emotionally but not physicallyI improved a lot on a cognitive level and on emotional level but not really physicallyWatch the video ↗From the video’s captions | Not stated | CBT and psychotherapy |
| last year | nervous system flared badly after an old-scar treatmenton the way back my nervous was even more through the roof so it was I felt horribleWatch the video ↗From the video’s captions | Not stated | |
| time of the interview, about 15 years after onset | much improved after starting tension and trauma release exercises, still on her journeyyeah from there my whole Theory Journey started and it changed everythingWatch the video ↗From the video’s captions | Mild | Trauma work (EFT, EMDR, TRE) |
Adverse events
- “on the way back my nervous was even more through the roof” Watch the video ↗From the video’s captions Made symptoms worse
- “some diets I think were even more harmful” Watch the video ↗From the video’s captions Made symptoms worse
- Sarno / TMS / somatic tracking / JournalSpeak“at that time I became many new symptoms and I felt terrible” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I will get post exertional Malay
Watch the video ↗From the video’s captions - POTS & dysautonomia
I also got the diagnosis pots
Watch the video ↗From the video’s captions - Gut problems
I also got the diagnosis IBS irritable bow syndrome
Watch the video ↗From the video’s captions - Pain & fibromyalgia
I also had the fprom myalgia like pain
Watch the video ↗From the video’s captions - Muscle weakness
an extreme muscle weakness and pain
Watch the video ↗From the video’s captions - Flu-like symptoms
I had a constant flu like symptoms
Watch the video ↗From the video’s captions - Anxiety & low mood
after that I fell into a deep black hole and um I really felt terrible
Watch the video ↗From the video’s captions
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