Too ill with ME/CFS to eat or plan a trip, much better on antivirals and Myhill protocol
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Nov 2017
In their words
- Condition: ME/CFS
ME/CFS doctors are very adamant that doing antivirals alone will not be enough.
In context ↗ - At worst: Severe
a few months ago I couldn't eat or plan even a simple trip
In context ↗ - Now: Much better
I am doing much much better than I was before I found it.
In context ↗ - Began after: glandular fever or EBV
My doctor thought I had mono deactivation and with rest would recover in a few weeks to months.
In context ↗
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
A graduate student in Oxford with ME/CFS who in 2017 was too ill to eat or plan a simple trip and kept crashing after walking or biking a mile daily. They credited antivirals, taken with the Myhill protocol, with making them feel far better and getting them back into school, though they stressed they were not cured and still depended on stimulants and had a bad week.
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What they tried
What they credit
Also tried
Their words about each treatment
- The Depression Cure · Helped
The Depression Cure and Learned Optimism helped me get my depression under control.
In context ↗ - Learned Optimism · Helped
Two books: The Depression Cure and Learned Optimism helped me get my depression under control.
In context ↗ - CBT · Helped
Everything else he recommended helped me, even CBT.
In context ↗ - walking/biking a mile every day · Worse
What I didn’t realise is that doing it every day would add up. ... I’m still crashing.
In context ↗ - Myhill's protocol · Helped a lot
I am doing much much better than I was before I found it.
In context ↗ - antivirals · Helped a lot
It made me feel 1000% better, like a miracle cure.
In context ↗ - adderall · Helped
they are part of the reason I am able to function
In context ↗ - modafinil · Helped
Modafinil and adderall combined. I limit adderall to 1-2x/week and take modafinil 4-5 days.
In context ↗
Approaches: CBT & mindset · Stimulants
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 |
|---|---|---|
| onset | ME/CFS began; doctor expected mono reactivation to settle with restMy doctor thought I had mono deactivation and with rest would recover in a few weeks to months.In context ↗ | Mild |
| summer 2017 | crashed after walking or biking a mile every dayI did practice walking/biking a mile over the summer and felt completely fine. ... I bought an electric bike as well but I’m still crashing.In context ↗ | Moderate |
| a few months before November 2017 | too ill to eat or plan a simple tripa few months ago I couldn’t eat or plan even a simple tripIn context ↗ | Severe |
| November 2017 | antivirals plus the Myhill protocol; back in schoolIt made me feel 1000% better, like a miracle cure. ... I am not cured, but I am back in schoolIn context ↗ | Mild |
| 2017-11-22 | much better than before the protocol, still relying on stimulantsI am doing much much better than I was before I found it.In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“Actually this week has been complete shit. I don’t even know if I can say it’s working for me. It’s like you said, you pay a price.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
doing it every day would add up ... I’m still crashing
In context ↗ - Brain fog
on some days, I could only read a paragraph at a time
In context ↗ - Anxiety & low mood
Two books: The Depression Cure and Learned Optimism helped me get my depression under control.
In context ↗
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