RAW and REAL: Anj Granieri's Recovery from Severe ME/CFS
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving
- 4 years
- Published
- No date given
In their words
- Condition: ME/CFS
I had mild mecfs for uh from 2018 to 2021
Watch the video ↗From the video’s captions - At worst: Very severe
I specifically remember trying to make my hand pick up a fork to feed myself at the table
Watch the video ↗From the video’s captions - Now: Recovered
fully recovered and live and live my life
Watch the video ↗From the video’s captions - Began after: glandular fever or EBV
within one year of trying to rebuild the camper I got reactivated glandular fever and that was what tipped me into full-blown mecfs
Summary
Granieri had mild ME/CFS from 2018, which became severe after a multi-day exercise crash in 2021, and spent about eight months in a dark room. Hyperbaric oxygen, which cost her 15 grand, made her better, but she crashed deeper when she resumed activity without pacing. She credits meditation, pacing and trauma work, and says she is fully recovered as of 2024.
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What they tried
What they credit
Also tried
Their words about each treatment
- exercise (advised by doctors) · Much worse
where I went and exercised multiple days in a row I I crashed ... in like 10 days I went from mile to this new level of illness
Watch the video ↗From the video’s captions - key supplements (unnamed) · Helped
there were some key supplements that I took that did move the needle
Watch the video ↗From the video’s captions - hyperbaric oxygen therapy · Helped
and it made me better but the problem was that it was it was helping all the secondary problems
Watch the video ↗From the video’s captions - mindfulness meditation · Helped a lot
meditation which was like the foundation of my whole Pro my whole process
Watch the video ↗From the video’s captions - trauma work (attachment style, boundaries) · Helped a lot
it's what got me from 80 to 100%
Watch the video ↗From the video’s captions - ANS Rewire · Helped
towards like the last 20% of my recovery I found his program and that's when I did top down
Watch the video ↗From the video’s captions - LDN · Not said
I'd still be on all of those things LDN and all that stuff I took
Watch the video ↗From the video’s captions - expansion contraction cycle / soft fence · Helped a lot
this is this is the crucial piece is pillar number two
Watch the video ↗From the video’s captions
Approaches: Hyperbaric & oxygen · Brain retraining · Mind-body practices · Pacing · Supplements · 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. 4 steps have no time and sit in story order between the steps around them. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018 | Reactivated glandular fever tipped her into mild ME/CFSI got reactivated glandular fever and that was what tipped me into full-blown mecfsWatch the video ↗From the video’s captions | Mild | |
| 2021 | Repeated crashes after exercising several days in a rowin like 10 days I went from mile to this new level of illnessWatch the video ↗From the video’s captions | Severe | |
| — | Hyperbaric oxygen helped brain fog and secondary problemsit made me better but the problem was that it was it was helping all the secondary problemsWatch the video ↗From the video’s captions | Severe | Hyperbaric oxygen (HBOT) |
| — | Deepest crash after doing too much; could not lift a forkI went into the deepest crash of the whole journeyWatch the video ↗From the video’s captions | Very severe | |
| — | About 80% with meditation and gentle expansion of her baselineso when I got to 80% and that was around when I discovered I discovered brain retrainingWatch the video ↗From the video’s captions | Mild | Meditation, yoga, breathwork |
| — | Last 20% through trauma work, boundaries and ANS Rewireit's what got me from 80 to 100%Watch the video ↗From the video’s captions | Recovered | Trauma work (EFT, EMDR, TRE) |
| 2024 | Fully recovered, travelling as a digital nomadfully recovered and live and live my lifeWatch the video ↗From the video’s captions | Recovered |
Adverse events
- Everyday exercise and activity“where I went and exercised multiple days in a row I I crashed” Watch the video ↗From the video’s captions Made symptoms worse
- “the trip down there made me so much worse” Watch the video ↗From the video’s captions Made symptoms worse
- “I went into the deepest crash of the whole journey” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I exercised I crashed
Watch the video ↗From the video’s captions - Brain fog
and I the brain fog I mean
Watch the video ↗From the video’s captions - POTS & dysautonomia
I had hallucinations and and and pots
Watch the video ↗From the video’s captions - Pain & fibromyalgia
if my cat walked across the bed sheets I was I was in agonizing pain
Watch the video ↗From the video’s captions - Light & noise sensitivity
for about eight months I just lived in a dark room
Watch the video ↗From the video’s captions - Muscle weakness
I couldn't make my hand move like it was paralyzed
Watch the video ↗From the video’s captions - Neuropathy & tingling
I used to get like lightning bolt Sensations to my tongue
Watch the video ↗From the video’s captions - Anxiety & low mood
just despair because I had no idea what was happening to me
Watch the video ↗From the video’s captions
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