ME/CFS
Moderate → no benefit
ME/CFS mild and working, now worst ever and moderate after hydroxyzine and evolocumab
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I'm diagnosed with ME/CFS, on some helpful medications
In context ↗ - At worst: Moderate
I'm currently the worst I've ever been, which is moderate/heading towards severe. Still hoping to stop the skid, though my previous baseline was mild-to-moderate
In context ↗ - Now: No benefit
I'm currently the worst I've ever been, which is moderate/heading towards severe.
In context ↗
Summary
Dew 66355, a trans non-binary person in Canada, had mild ME/CFS in May 2025 and was still able to work; hydroxyzine and the cholesterol drug evolocumab cut their symptoms by 20-40%, easing a burning rash, gut problems, nausea and mouth sores. By January 2026 they were the worst they had ever been, moderate and heading towards severe, more disabling than a 2018 low.
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What they tried
Also tried
hydroxyzine· Helpedevolocumab (Repatha)· Helpedtestosterone· Helpedgender-affirming surgeries· HelpedDr Arseneau's program· Not said
Their words about each treatment
- hydroxyzine · Helped
They both helped with my IBS symptoms, brain fog, low energy, and irritability as well.
In context ↗ - evolocumab (Repatha) · Helped
improves my activity tolerance for maybe 8/14 days (I take it once every 2 weeks)
In context ↗ - testosterone · Helped
Being on T made it easier to build and maintain muscle mass.
In context ↗ - Dr Arseneau's program · Not said
I'm in Dr Arseneau's program.
In context ↗ - gender-affirming surgeries · Helped
Gender-affirming surgeries helped a lot with managing other stressors
In context ↗
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 |
|---|---|---|
| 2018 | previous worst block of illness, before testosterone, undiagnosed and unmedicatedMy previous worst block of time with this condition was in 2018. ... It wasn't as disabling as the one I'm in now.In context ↗ | Moderate |
| May 2025 | symptoms lowered 20-40% on hydroxyzine and evolocumab, still able to workMeds maybe lower my symptoms by 20-40%. Not perfect but it helps. I'm still able to work for now.In context ↗ | Mild |
| January 2026 | worst ever, moderate heading towards severeI'm currently the worst I've ever been, which is moderate/heading towards severe.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Brain fog
They both helped with my IBS symptoms, brain fog, low energy, and irritability as well.
In context ↗ - Gut problems
I found that evolocumab decreased diarrhea and general loose and caustic-feeling stool. Also almost completely eliminated morning-to-mid-afternoon nausea and poor appetite.
In context ↗