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ME/CFS Very severe → relapsedIll 2.5 years before improving or writingNeeds ongoing treatment

Quadriplegic after an ME/CFS crash, improved then relapsed to severe

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
2.5 years
Last post
Jan 2026
In their words
  • Condition: ME/CFSAnd I got mine from the bivalent mRNA vaccine and am pretty sure I contracted mild-moderate CFS within a week. In context ↗
  • At worst: Very severeIt took me six months to pull out of my last crash when I was very severe, and that was with people changing my diapers, spoonfeeding me In context ↗
  • Now: RelapsedI was better for several months but now have relapsed to the worse side of severe. ... I'm still severe as heck, and worse in some ways
  • Began after: a vaccinationI got mine from the bivalent mRNA vaccine and am pretty sure I contracted mild-moderate CFS within a week. In context ↗
Read from 13 of their posts and comments; links to the 10 this page draws on

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Summary

Lynx 66597 developed mild-moderate ME/CFS within a week of a bivalent mRNA vaccine around 2023, aged about 39. A crash after cycling, walking and dancing more than six months later left them quadriplegic and needing diapers and spoon-feeding. Metoprolol ER, low-dose naltrexone, low-dose Abilify, nattokinase with bromelain, Ativan and pacing were followed by improvement to severe, though they were unsure how much was drugs versus time and pacing; overexertion caused a relapse, and they were still severe in January 2026.

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What they tried

Their words about each treatment
  • Metoprolol ER · Helped a lotLow dose extended released Metoprolol is the #1 medicine that has helped with my CFS ... It completely changed my experience of CFS In context ↗
  • Propranolol · HelpedLow dose Metoprolol ER helped me more than Propranolol. In context ↗
  • Ativan · HelpedAfter that Ativan provided a cushion for anxiety attacks/severe depression and times when I needed an escape. In context ↗
  • LDN · Not saidI don't know what helped with the sound sensitivity or screen sensitivity, although I started LDN, LDA, Natto & Bromelain, Metoprolol and occasional Ativan during the time. In context ↗
  • LDA (Abilify) · Not saidAbilify caused weight gain and compulsive eating at times In context ↗
  • Natto & Bromelain · Not saidI started LDN, LDA, Natto & Bromelain, Metoprolol and occasional Ativan during the time. In context ↗
  • Mestinon · Not saidMestinon has some of its beneficial effects. In context ↗
  • Guanfacine · Not saidI believe both Metoprolol and the Guanfacine I take may lower pulse and BP. In context ↗
  • Midodrine · Not saidI cross over into hypotensive now and then but am working on that with my present Midodrine dosage. In context ↗
  • Zoloft · Not saidAlso stopped the Zoloft I was on. In context ↗
  • pacing · HelpedI did see further improvement from time and pacing In context ↗
  • electric wheelchair · Helped a lotI wouldn't be able to do anything without an electric wheelchair. I'd say after a beta blocker it's been the most useful thing I've ever gotten for CFS. In context ↗
  • liquid diet · Not saidI usually go on a liquid diet so I don't have to make, chew or digest food and sometimes eat under 700 calories a day. In context ↗

Approaches: Beta-blockers · Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y

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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
about 2.5 years before October 2025ME/CFS began within a week of bivalent mRNA vaccineI got mine from the bivalent mRNA vaccine and am pretty sure I contracted mild-moderate CFS within a week. In context ↗Mild
6+ months into illnessmajor crash after cycling, walking and dancing; quadriplegic and needing diapers and spoon-feedingriding my bicycle, walking and dancing more than 6 months later eventually brought it all crashing down. ... when I hit rock bottom with CFS and was a quadraplegicVery severe
2025pulled out of the extreme crash, better for several monthsI did pull out of it once, and I am not sure it was wholly because of drugs, because I did see further improvement from time and pacing In context ↗Severe
2025-09-29relapsed to the worse side of severeI was better for several months but now have relapsed to the worse side of severe. In context ↗Severe
2025-10-23slipping back to very severe cognitively after overexertionI am now slipping back to very severe cognitively even though I am on more drugs, because of overexertion. In context ↗Severe
2026-01-27still severe and worse in some ways, on all the medicines they hoped forI'm still severe as heck, and worse in some ways, but I'm on all the meds I could hope to be on for CFS and it definitely helps. In context ↗Severe

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaisePEM from 30 seconds of radio In context ↗
  • Brain fogI am now slipping back to very severe cognitively even though I am on more drugs In context ↗
  • POTS & dysautonomiamy legs are definitely not fit for walking or bearing weight any more because of severe POTS In context ↗
  • Headaches & migraineBurning in head, headaches are the main symptoms. In context ↗
  • Light & noise sensitivityI don't know what helped with the sound sensitivity or screen sensitivity In context ↗
  • Muscle weaknessI have been unable to safely stand for a very long time In context ↗
  • Pain & fibromyalgiaPart of what keeps me going is that if I have pain and shut my eyes and stop thinking In context ↗
  • Anxiety & low moodAtivan provided a cushion for anxiety attacks/severe depression In context ↗

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