ME/CFS
Moderate → no benefitIll for 8 yearsNeeds ongoing treatment
Eight years of ME/CFS worsened by COVID, still unable to work after Mestinon and cromolyn
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 8 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
Been dealing with long viral implications for 8 years now. Covid/long covid only made it worse.
In context ↗ - At worst: Moderate
living alone for 8 years now, not able to work anymore
In context ↗ - Now: No benefit
Been dealing with long viral implications for 8 years now. Covid/long covid only made it worse.
In context ↗ - Began after: another virus
Been dealing with long viral implications for 8 years now.
In context ↗
Read from 15 of their posts and comments; links to the 12 this page draws on
Summary
Cove 94879 had a long viral illness for about eight years, which COVID and later any vaccine made worse. Mestinon helped them stay upright, cromolyn calmed MCAS, and tirzepatide caused weight loss back to their pre-illness weight and made POTS manageable, though it caused fatigue after each shot. A migraine protocol of LDN, Emgality and Botox worked for three years before stopping, and they still could not work and had chronic migraines.
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What they tried
Also tried
Cromolyn· Helped a lotMestinon· HelpedIV Ketamine therapy· HelpedBotox· Helped · wore offEmgality· Helped · wore offOccipital nerve blocks· HelpedDoterra Deep Blue· HelpedLDN· Helped · wore offTirzepatide· HelpedVaccines (any, including covid vaccines and boosters)· WorseAcupuncture· WorseH1 blockers· Not saidH2 blockers· Not saidIvabradine· Not said
Their words about each treatment
- Mestinon · Helped
Yes, it definitely helps me with my ability to be upright for longer periods of time. Been on it for 3 years. Gone off of it at times, and I feel like my legs are mush so quickly.
In context ↗ - IV Ketamine therapy · Helped
I have done it many times over the years, and have nothing but positive things to say about it for depression/anxiety.
In context ↗ - Vaccines (any, including covid vaccines and boosters) · Worse
It erases any progress made and makes me actually worse.
In context ↗ - Botox · Helped
This protocol (LDN + Emgality) worked for me +botox for 3 years, and 1 year ago completely stopped working.
In context ↗ - Occipital nerve blocks · Helped
I just got occipital nerve blocks, and it has dampened some of the pain, through the back of my head and neck.
In context ↗ - Doterra Deep Blue · Helped
Doterra Deep Blue is life changing for pain for me as a temporary fix for muscle pain and migraine pain as an incredible distraction.
In context ↗ - H1 blockers · Not said
I just did H1 H2 blockers for MCAS for years
In context ↗ - Ivabradine · Not said
I also take Ivabradine for POTS
In context ↗ - Cromolyn · Helped a lot
everything calmed down dramatically for me with Cromolyn. Highly recommend trying.
In context ↗ - Tirzepatide · Helped
The biggest benefit for me, is that I am back to the weight I was my whole life prior to the covid vaccine and long COVID
In context ↗ - Acupuncture · Worse
I've tried it many times and it never turns out well.
In context ↗
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. The chart starts 5.2 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018 (about 8 years before April 2026) | long viral illness beganBeen dealing with long viral implications for 8 years now.In context ↗ | Not stated | |
| after onset, date not stated | COVID/long COVID worsened the illnessCovid/long covid only made it worse.In context ↗ | Not stated | |
| after COVID, date not stated | vaccines erased progress and worsened symptomsIt erases any progress made and makes me actually worse.In context ↗ | Not stated | |
| 2023 (about 3 years before July 2026) | Mestinon improved ability to stay uprightit definitely helps me with my ability to be upright for longer periods of time.In context ↗ | Moderate | Mestinon / pyridostigmine |
| 2025 (1 year before August 2026) | migraine protocol stopped workingThis protocol (LDN + Emgality) worked for me +botox for 3 years, and 1 year ago completely stopped working.In context ↗ | Moderate | |
| August 2026 | Cromolyn calmed MCASeverything calmed down dramatically for me with Cromolyn.In context ↗ | Moderate | Cromolyn (Gastrocrom, Nalcrom) |
| August 2026 | tirzepatide restored weight and POTS became manageable, with post-injection fatiguemy POTS symptoms seem to be leveling back out, to manageable.In context ↗ | Moderate | Tirzepatide (Mounjaro, Zepbound) |
Adverse events
- COVID vaccination as treatment“It erases any progress made and makes me actually worse. At first I thought I was just covid vaccines (and boosters), and now I know it’s literally any vaccine in my system.” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“The symptom I continue to have after each injection, or the next day, is profound fatigue and some general aches with some muscle weakness.” In context ↗ Side effects
- Acupuncture“Yes, I avoid it at all costs at this point. I’ve tried it many times and it never turns out well.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
during a crash it’s a life saver.
In context ↗ - POTS & dysautonomia
I also take Ivabradine for POTS
In context ↗ - Mast cell (MCAS) & allergies
I just did H1 H2 blockers for MCAS for years
In context ↗ - Pain & fibromyalgia
temporary fix for muscle pain and migraine pain
In context ↗ - Headaches & migraine
My chronic migraines haven’t changed at all.
In context ↗ - Muscle weakness
my legs are mush so quickly.
In context ↗ - Anxiety & low mood
nothing but positive things to say about it for depression/anxiety
In context ↗