ME/CFS with orthostatic intolerance and PEM, now much better with MCAS supplements and diet
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
I have ME/CFS, not long covid, but also post viral, since 2015.
In context ↗ - At worst: Mild
I function at a relatively high level (70-90%)
In context ↗ - Now: Much better
I'm doing well now. At 80% functional capacity at the moment.
In context ↗ - Began after: another virus
I have ME/CFS, not long covid, but also post viral, since 2015.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Summit 68190 has had ME/CFS with orthostatic intolerance and PEM since 2015, and gut problems with MCAS since about 2009. They function at 70-90% of normal using MCAS supplements, diet and probiotics, and rated themselves 80% in September 2025. Epiphora exercises for 2.5 weeks did nothing, S. boulardii and Nalcrom were not tolerated, and keto made little difference. A December 2024 virus worsened their gut, which was improving.
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What they tried
What they credit
Also tried
Their words about each treatment
- Epiphora method · No change
With Epiphora, I felt nothing at all. No noticeable effect on my symptoms either.
In context ↗ - breathing exercises while resting · Helped
I do things daily that calm my nervous system, such as breathing exercises while resting.
In context ↗ - S Boullardi · Worse
S Boullardi is unfortunately something I cannot tolerate. Tried it several times..
In context ↗ - mcas supplements · Helped
Suggested mcas supplements and diet work quite well for me by the way.
In context ↗ - Nalcrom (cromolyn) · Worse
Nalcrom (cromolyn is the American version) made me really sick, so I didn't proceed with it.
In context ↗ - keto · No change
I've done keto in the past, it didn't make much difference for me.
In context ↗ - probiotics · Not said
Probiotics and supplements - yes, all the time. I've been focusing on my intestinal health. No luck with a full fix as off yet, unfortunately.
In context ↗
Approaches: Diet · Mind-body practices
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 |
|---|---|---|
| 2015 | ME/CFS beganSince 2015 (now 10 years) ME/CFS and orthostatic intolerance with PEM.In context ↗ | Not stated |
| December 2024 | gut issues worsened after a viral infectionAfter the viral infection in december my gut issues significantly worsened but it's getting better.In context ↗ | Not stated |
| 2025-09-04 | doing well, about 80% functional capacityI'm doing well now. At 80% functional capacity at the moment.In context ↗ | Mild |
Adverse events
- Probiotics and fermented foods“S Boullardi is unfortunately something I cannot tolerate. Tried it several times. ... Probably exhaution and rumbling intestines.” Gut side effects
- Cromolyn (Gastrocrom, Nalcrom)“Nalcrom (cromolyn is the American version) made me really sick, so I didn't proceed with it.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
ME/CFS and orthostatic intolerance with PEM
In context ↗ - POTS & dysautonomia
orthostatic intolerance with PEM
In context ↗ - Mast cell (MCAS) & allergies
digestive problems and fatigue (MCAS)
In context ↗ - Gut problems
After the viral infection in december my gut issues significantly worsened
In context ↗
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