How it went
Did it last?
- 1 of 13 said the benefit wore off: the one who relapsed.
- No one said they needed to keep it up to stay well.
Read from what people wrote. A story that ends without a follow-up counts as lasting, so treat these as minimums.
| Outcome described | Accounts | Share |
|---|---|---|
| Full recovery | 3 | 23% |
| Near-full | 0 | 0% |
| Substantial | 3 | 23% |
| Partial | 3 | 23% |
| Relapsed | 1 | 8% |
| No benefit | 3 | 23% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Moderate | 4 | 0% | |
| Severe | 2 | 100% | |
| Very severe | 3 | 33% |
4 accounts don’t say how ill the person was.
Who published these accounts
Right-hand number: share describing a full or near-full recovery. Pages that sell something, and advocacy sites, tend to publish only the successes.
All 13 accounts
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JAK1 inhibitor Rinvoq quickly returns severely ill ME/CFS patient to health - Parts I and II
Took Rinvoq (upadacitinib) for two months without stating a dose, and describes it as not an easy drug to take. The gains were concentrated in the autonomic nervous system: orthostatic intolerance normalised with no further blood pressure drop or pre-syncope…
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My gigantic story going back to 1996, treatment plan included
Five days into a thiamine/magnesium/potassium-focused protocol after nearly three decades of worsening illness, TexRob reports restored temperature regulation, normalized sweating, resumed GI and urinary function, and reduced brain fog/neuropathic pain,…
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My message to all ME/CFS, Fibromyalgia and POTS sufferers is 'don't lose hope!'
Recovered using ANS REWIRE, a method he developed himself combining brain-retraining techniques, DEEP mindfulness meditation, nutrition and physiological and lifestyle changes to calm and retrain the autonomic nervous system, working with an integrative…
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ME/CFS, Valcyte, and me: Third time lucky
Tracy has tried valganciclovir (Valcyte) three times for ME/CFS: a six-month course in 2014 (three weeks of induction at two 450mg pills twice daily, then two pills once daily) cut short by an allergic reaction after switching to a generic mid-course; a…
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I get chills for 2 weeks after a single attempt of killing gut microbes; permanent cure found: cod liver/oil or sashimi. See last post.
During a uric-acid flare she started supplementing with glutamine, after which chills she had been experiencing went away. No dose, duration or longer-term follow-up is given, so durability beyond that single report is unknown.
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I get chills for 2 weeks after a single attempt of killing gut microbes; permanent cure found: cod liver/oil or sashimi. See last post.
After years of extreme gut-microbe intolerance triggering two-week chill/flu episodes from nattokinase, probiotics, eucalyptus oil and charcoal-based antimicrobials, she reported that ultra-dilute sauerkraut sap gave her "more good than bad effects" for the…
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Verapamil, a calcium-channel blocker, eases my symptoms
Verapamil ER, a non-dihydropyridine calcium channel blocker, was started at 120mg and later raised to 180mg extended-release, taken each evening for several years by the time of posting. Illness duration before starting is not stated. He reports night sweats…
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A Decades Long Struggle with Chronic Fatigue Syndrome Ends
Kate, a high school teacher, developed a persistent flu-like illness in 1987 that left her severely disabled for 25 years with fevers, chills, muscle and joint pain and memory problems. Dr Lerner diagnosed an active HHV-6 infection and prescribed high-dose…
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Success treating multiple infections with Chlorine Dioxide
Followed Kerri Rivera's MMS (chlorine dioxide) protocol for 4.5 months, combined with a raw vegan diet and daily castor oil packs, for CFS/ME diagnosed 15 years earlier and later found to involve Lyme, bartonella, babesia, EBV, mycoplasma and mold. Had been…
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Spiritual Experience Changes Matt's Life
Matt developed chronic fatigue syndrome after a viral illness in the mid-1990s and by 1998 was severely disabled with fatigue, dizziness, breathing difficulty, muscle pain, night sweats and brain fog that forced him to stop working. He states supplements and…
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Estimate of % of patients who achieve long remission?
Reached about 85% function after roughly 10 years, well enough to exercise and run around after her children, though still unable to build fitness and with poor temperature regulation and bouts of exhaustion even during that remission; no specific treatment…
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Dr. success using higher doses of GCMAF
Tried K-Maf, a homeopathic-dilution version of GcMAF, alongside another forum member who had the same reaction. Reports feeling worse while taking it (similarly to a co-poster's night sweats and severe fatigue on the same product), with improvement only…
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making a PRObiotic chart -- Bifido spp only!!
Bifidobacterium infantis 35624: taken as the Align probiotic brand, starting at one capsule daily for two weeks and then increasing to two capsules daily. She has ME/CFS with symptoms including joint pain, tinnitus and brain fog. The first two weeks produced…