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ME/CFS Severe → somewhat betterNeeds ongoing treatment

Severe ME/CFS crash, now somewhat better after aggressive rest and bisoprolol for POTS

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
Not stated
Last post
Oct 2026
In their words
  • Condition: ME/CFSAnd yet I am currently in denial that I have ME/CFS. In context ↗
  • At worst: SevereI crashed to severe in January, and with lots of rest it moved to moderate-severe by March, where it’s stayed. I was mild-moderate before the crash. In context ↗
  • Now: Somewhat betterhaving that comorbidity treated has taken the burden off my ME/CFS so much that I think I’ve improved a whole severity level (still being very careful though) In context ↗
Read from 50 of their posts and comments; links to the 15 this page draws on

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Summary

Breeze 31001, in the UK, had years of ME/CFS symptoms and was mild to moderately ill before crashing to severe in January 2025, lying in the dark and unable to tolerate even an audiobook. Aggressive rest brought them back to moderate-severe by March. In December 2025 bisoprolol for POTS lifted them a whole severity level, and they are still pacing carefully.

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What they tried

Their words about each treatment
  • continuous heart rate monitor (Visible 2.0) · HelpedI also recently got a continuous heart rate monitor. it’s helped me stay in my energy envelope In context ↗
  • pacing and rest · Helpedif I hadn’t come across this sub and read how important it is, I don’t think I would have gone this long without crashing In context ↗
  • LDN · HelpedI started LDN (0.5mg sublingual at night) three days ago. I have noticed a significant change in my heart rate over the past two days In context ↗
  • group physiotherapy breathing sessions · No changedoing this has never helped an episode of breathlessness, so I am skeptical In context ↗
  • SSRI · Not saidI think I’ll be tapering very slowly, since I have withdrawal symptoms even if I take it a few hours late. In context ↗
  • electrolyte powder · Helpedelectrolyte powder (helps with hydration; I get mine from Bulk) In context ↗
  • one-on-one calls with an occupational therapist · Helpedbut also one-on-one calls with an occupational therapist — the latter really helps In context ↗
  • cetirizine · HelpedI did take antihistamines (cetirizine and famotidine) an hour before, and that seemed to help. In context ↗
  • bisoprolol · Helped a lothaving that comorbidity treated has taken the burden off my ME/CFS so much that I think I’ve improved a whole severity level In context ↗
  • resting aggressively · HelpedI slowly pulled out of it over a couple of months (by resting aggressively) In context ↗

Approaches: Beta-blockers · Pacing · Radical rest

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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
—years of ME/CFS symptomsI’ve had years of symptoms In context ↗Not stated
January 2025worst crash of my life, bedbound in the silent darkthe worst crash of my life and unable to tolerate even an audiobook on x0.1 speed In context ↗Severe
March 2025came up from severe to moderate-severe with aggressive restwith lots of rest it moved to moderate-severe by March, where it’s stayed. In context ↗ModeratePacing and the energy envelope
June-August 2025unexpected exertion stalled further recoverybut I think that’s also due to some unexpected exertion in June-August In context ↗Moderate
September 2025stable and improving while working part-time on a PhD from bedWhen I made the decision to continue, my symptoms were stable/improving with my current exertion level. In context ↗ModeratePacing and the energy envelope
December 2025bisoprolol for POTS lifted a whole severity levelA month ago I started a medication to treat POTS, and having that comorbidity treated has taken the burden off my ME/CFS so much that I think I’ve improved a whole severity level In context ↗MildBisoprolol (Concor)
October 2026still improved on a low bisoprolol doseit’s the single biggest thing to help improve my QOL (outside pacing). In context ↗Mild

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseI’ve incrementally restructured my entire life to avoid getting PEM In context ↗
  • POTS & dysautonomiaprescribed me beta blockers for my dysautonomia (heart rate spikes when upright) In context ↗
  • BreathlessnessI have shortness of breath every couple of days, seemingly at random In context ↗
  • Mast cell (MCAS) & allergiesAs someone with allergies, it’s like night and day. I don’t get nearly as much congestion as I used to. In context ↗

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