ME/CFS
Severe → no benefitIll for 16 years
ME/CFS for 16 years, worse over past five, using a cane; no benefit from brain retraining
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 16 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had ME 16 years.
In context ↗ - At worst: Severe
at this point most of my diet is low fat milk and microwaved potatoes and still that's too much to prepare.
In context ↗ - Now: No benefit
I've had it over 15 years and have gotten sicker the past 5.
In context ↗
Read from 21 of their posts and comments; links to the 13 this page draws on
Summary
Ridge 41292 has had ME/CFS about 16 years, partly dating onset to a one-year low-carb diet, and says it worsened over the past five. They use a cane and find even preparing microwaved potatoes too much. A Ray Peat-style diet and thyroid medication helped but were not a cure; antihistamines reduced PEM during a hives outbreak, prednisone did not help PEM, and four brain retraining programs brought nothing.
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What they tried
Also tried
Ray Peat diet (carb:protein ratio 3:1 to 5:1)· Helpedantihistamines· HelpedPolyvagal somatic approaches· HelpedEMDR, somatic experiencing, parts therapy, various therapists· No changebrain retraining· No changeCBT· No changePrednisone· Worsethyroid meds· Not said
Their words about each treatment
- Ray Peat diet (carb:protein ratio 3:1 to 5:1) · Helped
Ray Peat PhD whose work helped me recover from the damage of low carb ... It has helped but is not a cure for ME.
- thyroid meds · Not said
have taken thyroid meds for years, getting my TSH to 0.1
In context ↗ - Prednisone · Worse
I just started a short course of 50 mg Prednisone for hives. It makes me feel like I have a lead suit on my limbs. ... it did not help my pem
- antihistamines · Helped
I'm noticing less PEM while on antihistamines from a hives outbreak. ... tho they do reduce PEM which is amazing
- Polyvagal somatic approaches · Helped
I do a lot better with Polyvagal somatic approaches
In context ↗ - EMDR, somatic experiencing, parts therapy, various therapists · No change
I saw various therapists, did EMDR, somatic experiencing, parts therapy etc for years but made seemingly no progress
In context ↗ - brain retraining · No change
I've had ME 16 years. Did 4 retraining programs, none helped.
In context ↗ - CBT · No change
CBT never did a damn thing and I could tell it was worthless when I was a kid
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| ~2010 | ME/CFS onset, partly triggered by a one-year low-carb dietketo actually was one of my me/cfs triggers 15 years ago.In context ↗ | Not stated |
| 2026-10-04 | still ill after four brain retraining programsI've had ME 16 years. Did 4 retraining programs, none helped.In context ↗ | Moderate |
Adverse events
- Corticosteroid pulses“I just started a short course of 50 mg Prednisone for hives. It makes me feel like I have a lead suit on my limbs.” In context ↗ Side effects
- H1 antihistamines (unspecified)“i probably have MCAS but antihistamines cause weight gain (sigh). tho they do reduce PEM” In context ↗ Side effects
- “a one-year low carb diet destroyed my metabolism and ability to store glycogen, even many years later, I need a 5:1 ratio.” In context ↗ Other
- Trauma work (EFT, EMDR, TRE)“My somatic experiencing therapist would have me clench fists or act out a punch in slow motion, push against a wall, etc. But all that causes PEM for me now.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm noticing less PEM while on antihistamines from a hives outbreak.
In context ↗ - Mast cell (MCAS) & allergies
from a hives outbreak
In context ↗