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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/CFSI'm diagnosed with ME/CFS, on some helpful medications In context ↗
  • At worst: ModerateI'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 benefitI'm currently the worst I've ever been, which is moderate/heading towards severe. In context ↗
Read from 3 of their posts and comments; links to the 3 this page draws on

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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

Their words about each treatment
  • hydroxyzine · HelpedThey both helped with my IBS symptoms, brain fog, low energy, and irritability as well. In context ↗
  • evolocumab (Repatha) · Helpedimproves my activity tolerance for maybe 8/14 days (I take it once every 2 weeks) In context ↗
  • testosterone · HelpedBeing on T made it easier to build and maintain muscle mass. In context ↗
  • Dr Arseneau's program · Not saidI'm in Dr Arseneau's program. In context ↗
  • gender-affirming surgeries · HelpedGender-affirming surgeries helped a lot with managing other stressors In context ↗

Their path

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they were
2018previous 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 2025symptoms 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 2026worst 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 fogThey both helped with my IBS symptoms, brain fog, low energy, and irritability as well. In context ↗
  • Gut problemsI 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 ↗

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