Bedridden with ME/CFS, 20% better after DNRS, then worsened again
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 21 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I still have MECFS
In context ↗ - At worst: Severe
I am mostly bed bound now, which I like to call recovery.
In context ↗ - Now: Relapsed
This gave me my first and only improvement to date. ... there’s been no change and only deterioration.
Read from 46 of their posts and comments; links to the 27 this page draws on
Summary
Valley 99111 fell ill around 2003 and, after pushing through years of work, was bedridden by 2014 and largely remained so. Antiviral infusions lowered their HHV-6 titres but gave no relief. A five-day DNRS brain-retraining seminar gave them their first improvement, about 20% better function, and they later reported fast results from Sarno's book. By 2024 they reported no change and only deterioration.
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What they tried
What they credit
Also tried
Their words about each treatment
- omega 3 fish oil · Helped a lot
my biggest recommendation is 3000 mg of omega 3 fish oil ... It took about 2 weeks for it to clear.
- Valcyte (with Dr Lerner antiviral infusions) · No change
I was on Valcyte for a year but it did not benefit me
In context ↗ - DNRS (dynamic neural retraining system) · Helped
I most recently did a brain retraining course ... This gave me my first and only improvement to date.
In context ↗ - CBT therapy · Worse
That therapist started digging into my past and trauma and I ended up worse for it by far.
In context ↗ - Lunesta · Helped
I take lunesta and do recommend it.
In context ↗ - Xanax · Helped
I take it with Xanax before bed because Xanax calms the racing thoughts.
In context ↗ - zzzquil · Not said
I take a lot of sleep meds. Lunesta, xanax and zzzquil.
In context ↗ - magnesium glycinate · Helped
for me magnesium glycinate was the answer for my pain and it works very well
In context ↗ - Acetyl L Carnitine · Not said
Acetyl L Carnitine; 500 mg twice a day, helps in the cycle of weight gain/loss as well as helping in the brain.
In context ↗ - CBD · Helped
I take 30 mgs (2 capsules) when I feel my stomach start to react ... It does work on my stomach pain (inflammation).
In context ↗ - prayer · Helped
Praying helps me sometimes too.
In context ↗ - a year of no-guilt rest · Helped
One thing that worked for me was giving myself an end date ... It worked really well and I did improve some.
In context ↗ - lavender scented pillow spray (Sleep) · Helped
I’ve used it off and on and it does help me to relax.
In context ↗ - valacyclovir · No change
I had no physical benefit from this drug although my titers decreased (blood draw).
In context ↗ - The Mind Body Prescription by John Sarno (audiobook) · Helped
I have had success with this having listened to the book myself just 6 days ago.
In context ↗ - marijuana (weed) · Helped
I tried it for nausea. Of course it worked but I didn’t like the sensation of being high.
In context ↗ - ketamine therapy (IV) · Helped
I’ve gone through ketamine therapy, the IV, and it helped my depression (severe to moderate)
In context ↗ - high protein diet · Helped
I have felt better overall with a high protein diet- specifically gut issues I’ve been plagued with for years.
In context ↗ - fiber supplements (Fiber Well gummies) · Not said
I take fiber supplements too - Fiber Well gummies.
In context ↗ - COVID vaccination as treatment · Not said
The first one I got sick like everyone did, flu like and fever.
In context ↗
Approaches: Brain retraining · Diet · Radical rest · Supplements
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2003 | fell ill and kept working for yearsI got this 11 years agoIn context ↗ | Mild | |
| 2014-10-09 | bedridden after years of pushing through workI'm bedridden with very low chance of recovery because I was not helpedIn context ↗ | Severe | |
| 2016-12-22 | first improvement from neural retraining; better function and outlookI have increased my ability to better function by 20% (subjectively) and my overall outlook on life has greatly improvedIn context ↗ | Severe | |
| 2017-08-12 | brain retraining gave them first and only improvementThis gave me my first and only improvement to date.In context ↗ | Severe | |
| 2019-07-31 | inexplicable profound worsening, rested aggressivelyI have inexplicably worsened in a profound wayIn context ↗ | Severe | |
| 2020-09-03 | fast results from reading Sarno's mind-body bookI’m getting fast results.In context ↗ | Severe | Sarno / TMS / somatic tracking / JournalSpeak |
| 2024-04-01 | no change despite many treatments, only deteriorationthere’s been no change and only deteriorationIn context ↗ | Severe | |
| 2026-05-26 | chronic depression together with ME/CFS, no desire to do thingsI do believe it’s a mixture of chronic depressionIn context ↗ | Severe |
Adverse events
- CBT and psychotherapy“That therapist started digging into my past and trauma and I ended up worse for it by far.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“I tried it for nausea. Of course it worked but I didn’t like the sensation of being high.” In context ↗ Side effects
- COVID vaccination as treatment“The first one I got sick like everyone did, flu like and fever.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I cannot fall asleep before 2 am.
In context ↗ - Anxiety & low mood
My CFS also came with crippling depression
In context ↗ - Brain fog
when I started taking omega 3 fish oil for brain fog
In context ↗ - Pain & fibromyalgia
I do have a medical card for it because of fibromyalgia.
In context ↗ - Gut problems
specifically gut issues I’ve been plagued with for years
In context ↗ - Post-exertional malaise
post exertion malaise, all of it
In context ↗ - Muscle weakness
It really helps me with that feeling of being weighted down.
In context ↗ - Temperature regulation
Warm weather is the worst for me
In context ↗
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