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ME/CFS Severe → relapsedIll 4 years before improving or writing

Severe ME/CFS after COVID, improved on aspirin and antihistamines, then relapsed to severe

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
4 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSI have moderate to severe MECFS from long COVID In context ↗
  • At worst: SevereI started severe in 2022, improved to moderate march 2025, and crashed back to severe in June In context ↗
  • Now: RelapsedI'm currently severe, but I was moderate for a year up until a flare 2 months ago and currently looking for answers to get back to where I was In context ↗
  • Began after: COVIDThe COVID infection that gave me MECFS also caused subclinical hyperthyroidism
Read from 25 of their posts and comments; links to the 18 this page draws on

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Summary

Ridge 66475 became severe with ME/CFS after a COVID infection in 2022. Daily low-dose aspirin, antihistamines, an air purifier and over 80g of protein a day helped most, and by March 2025 they had improved to moderate. In June 2026 wildfire smoke, heat waves and viral infections crashed them back to severe. By October 2026 they were still mostly bedbound, pacing and volunteering a few hours a week in ME advocacy.

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What they tried

Their words about each treatment
  • graded exercise (GET) · WorseI had POTS before long COVID/ME and thought I could improve with GET ... I kept pushing because I didn't realize I had PEM In context ↗
  • higher protein diet · HelpedI do better on higher protein ... make sure I get over 80g protein and that's done the most
  • CBD · Helped10 parts CBD to 1 part THC or lower is most successful for me In context ↗
  • THC · WorseI've pretty much stopped using THC because of anxiety In context ↗
  • CBN · HelpedCBN mixed with other non-THC cannabinoids is helpful for improving deep sleep for me In context ↗
  • CBG · No changeI don't notice much difference between adding extra CBG and just taking a full spectrum CBD oil In context ↗
  • NAC (N-acetyl L-cysteine) · HelpedI don't think I notice much difference for my MECFS caused by long COVID, but 2400 mg per day split into 2 doses with my meals keeps the skin picking urge more controllable In context ↗
  • coal tar shampoo · HelpedCoal tar seems to slow the excess skin growth In context ↗
  • salicylic or glycolic acid · Not saidthen use salicylic or glycolic acid treatments to exfoliate In context ↗
  • therapy · Helpedfinding a therapist that understands chronic illness was helpful for me In context ↗
  • thigh high compression socks · Not saidthigh high compression socks were what was recommended to me by my initial neurologist who dxed me with POTS In context ↗
  • Venture Pal electrolytes · HelpedIf I slack on electrolytes they get worse too, but I know how to fix that In context ↗
  • DXM (dextromethorphan) · WorseI had a bad reaction to it too, even though it seemed to be helping beforehand ... my heart felt pretty unstable for a little bit In context ↗
  • caffeine · HelpedI feel better with caffeine as long as I don't overdo it In context ↗
  • low dose aspirin · Helpedthe aspirin noticably helped me with energy and shortness of breath In context ↗
  • antihistamines · HelpedI take antihistamines and aspirin to help with my symptoms in PEM In context ↗
  • HEPA air purifier · Helpedrun a hepa air purifier in my room, and make sure I get over 80g protein and that's done the most In context ↗
  • low dose Abilify (LDA) · Helpedit seems to have increased my PEM threshold a bit ... Still mostly bedbound and dose increases cause some insomnia In context ↗
  • guanfacine ER · HelpedI also started guanfacine ER at night at the same time and that seems to help increase my deep sleep to mitigate some PEM risk from insomnia In context ↗
  • cymbalta · Not saidtaking it with 60 mg cymbalta and LDA In context ↗
  • magnesium citrate and glycinate · HelpedI take magnesium citrate and glycinate at night and it helps with the all-the-time jerks In context ↗
  • pacing · Helpedthe only way to make it stop is to rest and pace In context ↗

Approaches: H1 antihistamines · Anticoagulants · Diet · Mould avoidance

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 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. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
2022ME/CFS began after a COVID infection; started severeI started severe in 2022 In context ↗Severe
March 2025improved to moderate on aspirin, antihistamines, air purifier and high proteinI take low dose aspirin daily, antihistamines, run a hepa air purifier in my room, and make sure I get over 80g protein and that's done the most. In context ↗Moderate
June 2026crashed back to severe after wildfire smoke, heat waves and viral infectionscrashed back to severe in June due to wildfire smoke, heat waves, and a couple viral infections In context ↗Severe
2026-10-12still severe and mostly bedbound; volunteers a few hours a week in ME advocacyI'm currently severe, but I was moderate for a year up until a flare 2 months ago In context ↗Severe

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseseems to have increased my PEM threshold a bit In context ↗
  • POTS & dysautonomiaI have MECFS, POTS, SIBO and possibly MCAS In context ↗
  • Sleep problemsdose increases cause some insomnia In context ↗
  • Headaches & migrainehave had a headache all day with random sharp head and neck pains In context ↗
  • BreathlessnessI get SOB when I'm in PEM or generally crashing In context ↗
  • Heart symptoms & palpitationsmy heart felt pretty unstable for a little bit In context ↗
  • Muscle weaknessfeeling less weak and limp In context ↗
  • Neuropathy & tinglingI think it's autonomic neuropathy caused by my ME In context ↗
  • Vision problemsget blurry vision/slow focusing from small eye muscle fatigue In context ↗
  • Temperature regulationconstantly being hot and sweating In context ↗

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