Miruvor

Post-exertional malaise

139 accounts mention post-exertional malaise. Here is what those people tried and how it went.

21%
recovered fully or nearly
30 of 139
66%
improved (substantial or partial)
92 of 139
9%
relapsed
12 of 139
4%
no benefit
5 of 139

How it went

Did it last?

  • 36 of 139 said the benefit wore off (including the 12 who relapsed).
  • 11 of 139 needed to keep up a treatment 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 describedAccountsShare
Full recovery1511%
Near-full1511%
Substantial4633%
Partial4633%
Relapsed129%
No benefit54%

By how ill people were

Severity at worstHow it wentnRecovered
Moderate2313%
Severe6131%
Very severe2030%

35 accounts don’t say how ill the person was.

Who published these accounts

Sells a treatment or program11 accounts
27%
Recovery advocacy site1 accounts
100%
Independent (blog, forum, news)127 accounts
20%

Right-hand number: share describing a full or near-full recovery. Pages that sell something, and advocacy sites, tend to publish only the successes.

What people with post-exertional malaise tried

Within the accounts on this page. Grey numbers rest on fewer than 10 accounts.

All 139 accounts

  • Improvement story

    Substantial ME/CFS SevereIll 6 years forums.phoenixrising.me Aug 2026

    Across several posts spanning 2023-2026, Gzephyr describes climbing out of EBV-reactivation-driven CFS using valacyclovir as a base, adding NAC and intermittent fasting, and finally a tonsillectomy in early 2025. He says he went from severe (~8/10 fatigue,…

  • Jonathan Groves' Story

    Full recovery ME/CFS SevereIll 1.58 years the-recovery-hub.org · sells Jun 2026

    Jonathan practiced Ekadashi Upavasa fasting (fasting on the 11th lunar day) combined with autophagy principles, an elimination diet cutting out all processed food, caffeine, sugar and alcohol, the Silva Method, meditation, breathwork, affirmations and…

  • I'm normal now. Here's my promised update for y'all

    Full recovery ME/CFS SevereIll 7 years forums.phoenixrising.me Jun 2026

    Started with IFN lambda combined with GS-441524 for underlying Enterovirus B infections, which brought about 60% improvement, then moved to a multi-drug antiviral regimen described as molnupiravir, GS-441524, Vermurafenib, ribavirin and pleconaril plus…

  • Recovery Protocol Cheat Sheet

    Substantial Long COVID Severe longcovidbegone.substack.com Apr 2026

    Christy's posted recovery protocol lists an extensive regimen: pre-protocol, three months of Eliquis 5 mg daily and clopidogrel 75 mg daily; from February 2024 a "foundation" of nutritional antivirals including matcha green tea, coconut oil, unpasteurized…

  • My Recovery from Long COVID PEM Part 2: Microclots

    Substantial Long COVID SevereIll 3 yearsEffect faded longcovidbegone.substack.com Feb 2026

    Christy was prescribed the anticoagulant apixaban and the antiplatelet clopidogrel in June 2023 (omitting the aspirin normally used in triple therapy due to stomach sensitivity), continuing for 4 to 5 months after microclots and hyperactivated platelets were…

  • Relief! I still have CFS but am a MILLION times better, takes a lot of work but worth it

    Substantial ME/CFS SevereIll 13 yearsEffect faded healthrising.org Jan 2026

    Built an extensive daily regimen around kratom (Green Malay strain), weekly B12 injections, magnesium, psyllium fiber, CPAP therapy, an annual course of Xifaxan and a year-long course of itraconazole, plus NAC, glycine, glutathione and BPC-157, for ME/CFS…

  • My update to nicotine patch usage for Long Covid recovery

    Partial Long COVID ModerateIll 1.5 years thewellnessaesthetic.substack.com Jan 2026

    Lauren used nicotine patches for Long COVID, starting with half of a 7mg patch (3.5mg) worn intermittently for 7-10 days at a time with a few days off, then shifting in October 2025 to near-daily half-patch use for about two months, before cutting back in…

  • Three Long-term Long COVID Patients, Three Rapid Recoveries

    Near-full Long COVID SevereIll 1 yearEffect faded healthrising.org Dec 2025

    Pemivibart (Pemgarda), a monoclonal antibody infusion whose effect the article says typically lasts about a couple of months, was given to three long-term long COVID patients. A 70-year-old woman, sick for nearly a year, had her brain fog, breathlessness and…

  • Vyvgart brought us back to life (Clare)

    Relapsed Long COVID SevereEffect faded thesicktimes.org Oct 2025

    Clare, a nurse previously unable to work because of Long COVID, received Vyvgart (efgartigimod) in the trial, with no specific dose stated, and it significantly improved her tachycardia and lessened her post-exertional malaise. After the trial ended, her…

  • Nicotine patches help relieve symptoms in some people with Long COVID

    Partial Long COVID ModerateIll 5 years thesicktimes.org Oct 2025

    Troy Roach began using nicotine patches consistently in 2023, though the article does not specify the dose or strength he used. He had developed Long COVID and ME in 2020, about three years earlier, with post-exertional malaise as a primary symptom, and on…

  • Mild NAC success story (godlovesatrier)

    Partial ME/CFS Effect faded forums.phoenixrising.me Sep 2025

    During a relapse related to antibiotic treatment, this poster says NAC, built up very slowly from 25mg to 1.2g twice daily, was the main thing allowing him to function and helped him recover from the worst post-exertional crashes. He stresses the importance…

  • My Recovery from Long Covid PEM: Part 1

    Substantial Long COVID SevereIll 2.5 years longcovidbegone.substack.com Sep 2025

    In summer 2023 Christy Collins began four months of dual anticoagulant/antiplatelet therapy with apixaban (Eliquis) for long COVID PEM; a planned spring 2024 "three-pillar" protocol (mitochondrial and metabolic support, antivirals, and immune stimulants) is…

  • Blood and circulation

    Substantial ME/CFS SevereIll 16 years healthrising.org Aug 2025

    Combined having a problem tooth pulled with a long-running Linus Pauling-style protocol for peripheral artery disease, Ayurvedic remedies, infrared light therapy, a course of 32 magnesium-sulfate infusions, and low-dose naltrexone above 2mg per day. Had PAD…

  • Astragalus root to treat CFS/long covid.

    No benefit ME/CFS forums.phoenixrising.me Aug 2025

    Astragalus root taken off and on, as needed, for almost a year. She has long-standing ME/CFS with a limited energy envelope and post-exertional malaise. She reports it helped a separate post-infection fatigue flare linked to elevated IL-6 within a day or two…

  • How I got in remission/cured my ME/CFS

    Full recovery ME/CFS SevereIll 3 years forums.phoenixrising.me Aug 2025

    Ali_Mardiyev, disabled for 1.5 years with POTS/dysautonomia/severe fatigue/PEM, layered a stellate ganglion block with beta-blocker, a testosterone course, several psychiatric medications, intermittent fasting and a slow graded-exercise ramp starting April…

  • Incredible recovery after 30 years of ME/CFS!

    Partial ME/CFS Effect faded healthrising.org Jul 2025

    Followed the Gupta Program, a mind-body retraining program, for about a year. Had been ill with ME/CFS and post-exertional malaise since 2011 and at one point became very physically active again before relapsing roughly three and a half years before this…

  • Berlin Cures' failed trial (Emma)

    Partial Long COVID thesicktimes.org Jul 2025

    Emma took part in the same Berlin Cures trial of BC 007 (rovunaptabin), though the article does not specify her dose or whether she received the active drug or placebo, nor how severe or long-standing her Long COVID was. She reported that her symptoms…

  • Russ Seigenberg's Recovery Story

    Near-full ME/CFS SevereIll 15 years the-recovery-hub.org Jul 2025

    Used self-directed pacing, graduated aerobic exercise (walk/jog intervals), diet changes, meditation, yoga and faith rather than any named program or drug. He crashed with post-viral fatigue/ME/CFS at 25 after a bout of mono/EBV, at his worst spending much…

  • Treatments. Yes, they do exist.

    Partial ME/CFS encephalogirl.substack.com Jul 2025

    In this follow-up post, Encephalogirl (Michelle) lists an expanded regimen: low-dose naltrexone, low-dose Abilify, guanfacine, about nine months of tenofovir as part of a planned minimum one-year antiviral course, six weeks of low-dose rapamycin at 1mg once…

  • Long Covid Healing Resources

    Substantial Long COVID SevereIll 4 years gretamorgan.substack.com · sells Jun 2025

    Followed a 10-point Mayo Clinic-informed protocol: a TruVaga vagus-nerve-stimulation device for 2 minutes three times a day, guanfacine at 0.5mg twice daily (with room to increase to 1mg twice daily), L-arginine 2000mg twice daily, vitamin C 500mg twice…

  • HUGE response to Vitamin K2 MK7

    Substantial ME/CFS forums.phoenixrising.me May 2025

    pamojja reports that after 16 years of daily high-dose K2 (MK-7 plus MK-4), the brain fog that used to strike specifically during PEM crashes has been in remission for the last 6 years. This is a long-duration, well-sustained partial benefit (brain fog only,…

  • JAK1 inhibitor Rinvoq quickly returns severely ill ME/CFS patient to health - Parts I and II

    Partial ME/CFS forums.phoenixrising.me May 2025

    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…

  • Buchinger fasting

    Substantial ME/CFS SevereIll 10 years forums.phoenixrising.me 2025

    Ten years into post-infectious ME/CFS so severe that cleaning their flat or studying was "unthinkable," ilivewithcfs ran themself through repeated unsupervised Buchinger-style fasts of about 200-250 kcal/day from juice and broth (later a 2-day prep, 7-day…

  • People with Long COVID turn to online drug markets (Tiff)

    Partial Long COVID Effect faded thesicktimes.org Dec 2024

    Tiff, in the US, took a 10-day course of Paxlovid plus sofosbuvir, a hepatitis C antiviral, that a friend brought back from India, after having Long COVID since 2020. She said she felt like she did before 2020, with her energy back, no PEM crash and no brain…

  • From Severe ME/CFS to Healed: Jen's Remarkable Rinvoq ME/CFS Recovery Story

    Full recovery ME/CFS Very severeIll 18 years healthrising.org Nov 2024

    Jen, bedbound 90% of the time for 18 years with severe PEM and dysautonomia, took Rinvoq 15mg daily for 2 months until it was stopped due to a dangerously low white-cell count. She initially felt no better, but a few weeks after stopping the drug her…

  • Clinical trials explore how Low-Dose Naltrexone could help people with Long COVID

    Partial Long COVID Severe thesicktimes.org Oct 2024

    Kate Herbert, a nurse with Emerge Australia, first tried low-dose naltrexone at 1.5mg daily but stopped after two weeks due to insomnia, nightmares and anxiety, then restarted at a much lower 0.25mg daily, which she has continued taking. The article does not…

  • Why inactive ingredients can be a gamechanger

    Substantial Long COVID SevereEffect faded longcovidbegone.substack.com Oct 2024

    Christy's treatment here is CoQ10 (Qunol brand): she started with 50 mg gummies (though the bottle recommended 100 mg) last winter, then switched to a liquid "Superior Absorption" formulation that let her tolerate higher doses without side effects, which she…

  • improvement

    Partial ME/CFS SevereIll 13 years healthrising.org Sep 2024

    Combined itraconazole delivered via a Nasoneb diffuser with famotidine (Pepcid), Zantac, kratom, Alka-Seltzer, Alvesco, albuterol and PYM Attention chews for ME/CFS with PEM, IBS and POTS-type episodes. Had been ill about 13 years. Reports seeing improvement…

  • Pepcid and 1 month without an 'episode'

    Partial ME/CFS SevereIll 13 years healthrising.org Aug 2024

    Started taking Pepcid (famotidine) for PEM, IBS and POTS-type episodes and initially went a full month without an episode for the first time in years. Had been ill about 13 years, with roughly 80% of episodes lasting two to three days and some up to two…

  • Martin's Paradoxical Temporary ME/CFS Remission Story

    Relapsed ME/CFS Very severeIll 10 yearsEffect faded healthrising.org Jul 2024

    Martin became ill after EBV reactivation, Lyme disease and food poisoning, and was bedbound for the last three of his ten years of illness with severe post-exertional malaise. Lyrica, benzodiazepines, tianeptine, quetiapine, rapamycin and methylprednisolone…

  • Improved on triple anticoagulant therapy, considering adding tenofovir

    Partial Long COVID ModerateIll 2 years forums.phoenixrising.me Jun 2024

    Five months into apixaban, clopidogrel and aspirin (aspirin eventually raised to 100mg/day) for Long Covid presenting as moderate ME/CFS of over two years' standing, improvements appeared around day 40: ability to tolerate screens "increased manyfold," eye…

  • HHV-6/EBV testing UK? / Remitting symptoms on Molnupiravir?

    Relapsed ME/CFS SevereIll 18 yearsEffect faded forums.phoenixrising.me May 2024

    Took a standard course of molnupiravir to treat a COVID infection in 2023, against a backdrop of ME/CFS since 2006 (severity "varying from mild to severe") plus Long Covid from 2022 that had left her "mostly bedbound for a year." Reports "my ME/CFS symptoms…

  • From Skeptic to Advocate: Wes Ely, Long COVID and his Baricitinib Trial

    Partial Long COVID Effect faded healthrising.org Jan 2024

    Nik took baricitinib for a few months as part of long-COVID treatment; the page does not say how long or how severely Nik had been ill beforehand. The drug worked well, reducing both post-exertional malaise and brain fog. Nik had to stop taking it, though,…

  • List of ME/CFS Recovery and Improvement Stories (page 10 discussion)

    Full recovery ME/CFS ModerateIll 7 years forums.phoenixrising.me 2024

    nolongerdiseased, ill with post-viral ME/CFS from age 12 to 19, progressed from moderate (50% function) to full remission over about 5 months using a 3-month Goldner autoimmune protocol followed by roughly 2 months of low-dose Abilify (0.75mg), with PEM…

  • The Nicotine Patch: Long COVID, ME/CFS and Fibromyalgia (Patient 2)

    Full recovery Long COVID Severe healthrising.org Dec 2023

    This second case-series patient used a 7.5 mg/24h nicotine patch daily, a dose that was doubled at one point by mistake, for concentration problems, fatigue and post-exertional malaise. Her concentration was restored by day four, and fatigue and PEM were…

  • Good signs from coq10 - now what? (Mary)

    Partial ME/CFS Ill 12 years forums.phoenixrising.me Oct 2023

    Mary said 4,000 to 5,000mg of branched-chain amino acids daily, followed since 2014, cut her post-exertional malaise recovery time by more than half and improved her energy, with CoQ10 adding a further noticeable effect. She notes cheaper BCAA brands worked…

  • Mild NAC success story. Anyone else?

    Partial ME/CFS ModerateIll 3 years forums.phoenixrising.me Sep 2023

    Three years after an EBV trigger and already on valacyclovir, adding 600mg of NAC daily for about two months reduced lymph node swelling and tonsil and sinus inflammation and raised the post-exertional malaise threshold tremendously, allowing walks and…

  • Daughter's recovery details

    Substantial ME/CFS SevereIll 2 years forums.phoenixrising.me · sells Jul 2023

    The regimen for Celandine's daughter included daily liquorice root powder and salt in plant milk, weekly-then-tapering Perrin Technique osteopathy (including breast lymphatic massage), the POTS medications ivabradine and midodrine with salt tablets and 2…

  • My Recovery Journey from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

    Full recovery ME/CFS SevereIll 4.5 years healthrising.org Jun 2023

    Mediterranean diet was adopted as one strand of a broad, multi-modal recovery program that also included intermittent fasting, low-dose naltrexone, structured pacing and vagus nerve stimulation, with no separate dose or duration given for the diet itself. He…

  • List of ME/CFS recovery and improvement stories

    Relapsed ME/CFS Effect faded forums.phoenixrising.me May 2023

    Took low-dose aripiprazole and had every symptom domain - cognition, PEM, energy and sleep - improve dramatically within a short period, though no dose is given. The benefit lasted about two months and then disappeared completely, returning him to his old…

  • The Remission Biome Project: Two ME/CFS Patients Begin a Gut Reset Effort to Regain Their Health

    Full recovery ME/CFS healthrising.org Feb 2023

    Bifidobacteria: a multi-strain probiotic blend of Bifidobacterium breve, B. bifidum, B. infantis and B. longum together with Lactobacillus rhamnosus and Saccharomyces boulardii, given as one part of a wider protocol that also included mold avoidance, B…

  • Impact of extended-course Paxlovid in established Long COVID (Case 7)

    Relapsed Long COVID SevereIll 11 monthsEffect faded pmc.ncbi.nlm.nih.gov 2023

    Case 7, a 29-year-old man about 10 months into Long COVID/ME since July 2022 with extreme fatigue, PEM, tachycardia, POTS, persistent headache, brain fog, chest pain and shortness of breath, took a 15-day extended Paxlovid course in May 2023 while also on…

  • Impact of extended-course Paxlovid in established Long COVID (Case 5)

    Near-full Long COVID SevereIll 3 yearsEffect faded pmc.ncbi.nlm.nih.gov 2023

    Case 5, a woman with roughly three years of Long COVID since March 2020 causing respiratory issues, fatigue, PEM, brain fog and body aches that had stopped her from exercising daily, took a 10-day extended Paxlovid course in June 2023 while otherwise only…

  • Impact of extended-course Paxlovid in established Long COVID (Case 4)

    Full recovery Long COVID SevereIll 6 monthsEffect faded pmc.ncbi.nlm.nih.gov 2023

    Case 4, a 51-year-old man about 6 months into Long COVID with fatigue, daily headaches, brain fog, mental exhaustion, PEM, racing heart, palpitations, tinnitus and visual/sensory disturbances, took a 15-day extended Paxlovid course in March 2023 alongside…

  • Impact of extended-course Paxlovid in established Long COVID (Case 2)

    Full recovery Long COVID SevereIll 11 monthsEffect faded pmc.ncbi.nlm.nih.gov 2023

    Case 2, a 45-year-old woman about 11 months into Long COVID with orthostatic intolerance, tachycardia, short-term memory loss, word-finding trouble, fatigue, PEM and MCAS symptoms, took a 15-day extended course of Paxlovid (nirmatrelvir/ritonavir) in…

  • Carnivore Diet Reduces Bloating

    Relapsed ME/CFS SevereIll 26 yearsEffect faded forums.phoenixrising.me Oct 2022

    GreenEdge, who had spent the prior 2 years of a 26-year illness increasingly bed-bound, felt "totally normal" after 6 months on a carnivore diet, with better eyesight, brain function, sleep and muscle function, and managed significant physical projects…

  • Full remission after 7 years of ME/CFS - What worked for me

    Full recovery ME/CFS SevereIll 7 years forums.phoenixrising.me Oct 2022

    Followed the Golder Autoimmune Protocol for about three months (roughly 3 liters of water and 650g of raw cruciferous and leafy greens daily, plus chia or flax seed, iodine and B12, on about 1500 calories a day), then added low-dose Abilify at 0.75mg daily…

  • "Chronic Fatigue Gone" - After 16 Years Jason Figures It Out

    Near-full ME/CFS SevereIll 16 years healthrising.org Sep 2022

    Used nebulized hydrogen peroxide, an alternative therapy, for ME/CFS. Had been ill 16 years, with post-exertional malaise where even good days spent exercising led to multi-day crashes and eventual bedbound periods after activity. The site's title describes…

  • Post-Exertional Malaise Busters for ME/CFS, FM and now Long COVID - Take II

    Partial ME/CFS healthrising.org Sep 2022

    BCAA (branched-chain amino acids) taken at the maximum recommended dose immediately after any exertion large enough to trigger post-exertional malaise, used as an ongoing as-needed strategy rather than a fixed course. Illness duration and severity are not…

  • Actual Improvement in PEM with Probiotics - My N=1 Experience

    Partial ME/CFS Very severe forums.phoenixrising.me · sells Jun 2022

    katabasis, previously scoring her disability at 10/100, says roughly six weeks on a specific dual-strain probiotic moved her to about 20/100, enough to do minor chores and read for 30 minutes without triggering PEM, and that she recovered from a dental…

  • Bedridden for 1.5 years and still getting worse - IVIG only hope

    Partial ME/CFS Very severeIll 13 years forums.phoenixrising.me Apr 2022

    Howard, exclusively bed-bound since 2015 with post-exertional malaise since 2009, said eight hours a day of outdoor light since the previous November, aimed at raising vitamin D, brought a recent sudden though gradual improvement, alongside tart cherry…

  • A treatment that helps me tremendously

    Partial ME/CFS SevereIll 10 years forums.phoenixrising.me Mar 2022

    Ill since 2012, this poster built daily direct sun exposure from five minutes to several hours a day over a few years, alongside high-dose vitamin D3. In summer he can do housework, see friends, sail and garden, going from roughly thirty per cent to over…

  • Ivermectin for Fibro.

    Partial ME/CFS healthrising.org Feb 2022

    Ivermectin, taken orally starting in July as a COVID preventive with no dose specified, was continued by an ME/CFS patient for a couple of months. After about two months they began feeling better in general, reporting more energy and less post-exertional…

  • List of ME/CFS Recovery and Improvement Stories (page 4 discussion)

    Partial ME/CFS Severe forums.phoenixrising.me 2022

    crowtor, who progressed from bed-bound to housebound, used three separate targeted interventions: a low-flow oxygen concentrator for brain fog, a bilevel ResMed AirCurve machine for sleep, and very-high-dose ubiquinol plus CoQ10 to blunt PEM. Each addressed…

  • Bye-Bye Fight or Flight? Stellate Ganglion Blocks (Patient Two)

    Full recovery Long COVID SevereIll 7 months healthrising.org · sells Dec 2021

    This second patient received the same stellate ganglion block procedure, injections on both sides of the neck, after seven months of severe post-COVID cognitive difficulties requiring occupational, physical and speech therapy, along with profound memory…

  • Abilify plus LDN returns retired clinical psychologist to 80% health for two months

    Relapsed ME/CFS SevereIll 11 yearsEffect faded healthrising.org Nov 2021

    Marvin, a retired clinical psychologist, took low-dose Abilify (0.5 mg) combined with low-dose naltrexone (2.5 mg) from a compounding pharmacy after 11 years of fatigue, post-exertional malaise, cognitive problems, and unrefreshing sleep. The combination…

  • Berberine helped me

    Substantial ME/CFS SevereIll 15 years forums.phoenixrising.me · sells Sep 2021

    After 8 months in a severe state, Elike reports that four weeks of berberine and curcumin brought her back to her "pre-severe" baseline and that she no longer feels constantly in PEM mode. She notes that when she tried to replicate the protocol a few months…

  • No PEM after weeks on Valacyclovir

    Partial ME/CFS SevereIll 12 yearsEffect faded forums.phoenixrising.me Jul 2021

    Restarted valacyclovir at 1g three times daily after roughly a year spent bedridden 20-22 hours a day, following a 2009 viral onset, a 2011-2016 quasi-remission, and a hard relapse after a second viral infection in 2016. Just over a month in, reports…

  • Amygdala Retraining Program Improves Symptoms and Biology in Fibromyalgia

    Full recovery ME/CFS Very severeIll 10 years healthrising.org Jun 2021

    The Gupta Program, also referred to as Amygdala and Insula Retraining, using NLP-based techniques to rewire the brain's threat response, done 100 percent for 6 months. She had ME/CFS since 2008 and fibromyalgia since 2010, and by 2018 was completely bedbound…

  • My fatigue is gone. My poisoned feeling, gone. PEM, what PEM?

    Substantial ME/CFS ModerateIll 1.5 yearsEffect faded forums.phoenixrising.me Jun 2021

    seamyb reports that a teaspoon of ordinary cumin eliminated his fatigue and "poisoned feeling" and blocked PEM, describing himself as "either in remission or super mild," and explicitly states he has no commercial stake in cumin. He notes the effect wears…

  • Some Patients Are Reporting Recovery from Long COVID (Netta)

    Near-full Long COVID SevereIll 7 monthsEffect faded time.com Jun 2021

    Netta Wang's recovery followed her second Moderna vaccine dose in March, combined with doctor-recommended exercise such as bike riding to gradually rebuild her strength. She had been sick with Long COVID since August 2020 and was initially nervous to…

  • ME/CFS in Remission from Mold Avoidance

    Full recovery ME/CFS Severe forums.phoenixrising.me May 2021

    After becoming severely ill with ME/CFS by late 2020 — to the point that even a shower risked triggering post-exertional malaise — he discarded all possessions, bought new clothes and a car, and relocated from a New York City apartment to a travel trailer in…

  • How I Found My Long Lost Energy

    Substantial ME/CFS prohealth.com · sells Mar 2021

    Relayed by forum member godlovesatrier, this ProHealth-published patient credited 1200mg high-dose thiamine with major energy improvements, reduced PEM, better mental clarity and reduced inflammation. The original article could not be fetched directly (it…

  • Abilify Shows Promise in Retrospective Chronic Fatigue Syndrome Study

    Partial ME/CFS Very severeEffect faded healthrising.org Mar 2021

    The piece states that Abilify (aripiprazole) enabled Whitney Dafoe, one of the most severely affected ME/CFS patients on record, to communicate again for the first time in years, but it does not give his personal dose, treatment duration, or other individual…

  • Cured of PEM

    No benefit ME/CFS healthrising.org Jan 2021

    Tried black cumin seed, in both oil and seed form, after reading about cumin helping PEM in this thread. Has ME/CFS with MCAS and possible mold involvement. Reports each time she took it she felt horrible, describing a clearly negative reaction rather than…

  • Cured of PEM

    Partial ME/CFS healthrising.org Jan 2021

    Tried multiple unspecified interventions for PEM and separately for POTS. Illness duration and severity are not detailed. Says she found some things that do away with PEM symptoms but that they caused adverse effects on other symptoms, and separately found…

  • List of ME/CFS Recovery and Improvement Stories (page 6 discussion)

    Substantial ME/CFS Severe forums.phoenixrising.me 2021

    msf went from mostly housebound to functionally healthy - full-time work, a social life and strenuous exercise with minimal PEM - crediting a combination of KDM-directed treatments, trazodone, a low-FODMAP diet, ALA and Chinese skullcap. No single component…

  • Abilify - Stanford Clinic Patients

    Substantial ME/CFS Very severe forums.phoenixrising.me Nov 2020

    Butydoc, confined to bed 90% of the time with PEM every few days, micro-dosed Abilify from 0.1mg (9 days) to 0.2mg (8 days) using a tuberculin syringe under Dr. Bateman's guidance. Within 2 days of starting he had more energy and was up more often, and on…

  • How I solved my neuroinflammation

    Substantial ME/CFS ModerateEffect faded forums.phoenixrising.me Oct 2020

    Built up to pramipexole 2mg nightly over four weeks alongside LDN, as-needed ibudilast, ALCAR and curcumin, reporting about an "80% improvement" in neuroinflammation symptoms -- migraines down from 3-4/week to at most one, and PEM severity/duration cut by…

  • Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance (comment)

    Partial ME/CFS Severe healthrising.org Sep 2020

    Homemade oral rehydration solution, mixed as half a teaspoon of pink salt and a teaspoon of turbinado sugar per liter of water, drunk at about four liters a day alongside a potassium-chloride supplement taken under a doctor's supervision. Sandra Smith…

  • Cured of PEM

    Substantial ME/CFS healthrising.org Sep 2020

    Has used a long-term combination of turmeric with black pepper, ashwagandha, Ceylon cinnamon and paprika. Illness duration and severity are not detailed in this post. Says these have been a staple and have helped him tremendously, and reports ordering cumin…

  • Cured of PEM

    Substantial ME/CFS Moderate healthrising.org Sep 2020

    Took ground cumin, relying on its cuminaldehyde component, in doses of under a teaspoon, initially every three days and eventually as a permanent regimen, administered sublingually. Had post-exertional malaise from ME for multiple years despite only moderate…

  • Chinese skullcap seems to correct PEM/the energy problem in ME

    Substantial ME/CFS Severe forums.phoenixrising.me Jun 2020

    msf reports that after more than a month on Chinese skullcap root tea he no longer has to be careful about exertion and that working out "actually feels healthy now," describing himself as functionally normal. Exact dosing isn't given and the post is only…

  • What changes did you notice during recovery from a diagnosed carnitine deficiency?

    Partial ME/CFS Severe forums.phoenixrising.me Apr 2020

    Daily carnitine injections titrated to 600mg/day, for a lab-confirmed severe carnitine deficiency, let her do moderate strength training and calisthenics without the post-exertional malaise that even 10 push-ups used to trigger (previously a 2-3 week…

  • How I recovered from M E Hell

    No benefit ME/CFS healthrising.org Dec 2019

    Used Ashok Gupta's amygdala retraining program every day for months, giving it what she calls her very best shot. Illness duration and severity are not detailed in this post. Says in her own words that it made no difference to her PEM, weakness,…

  • Speaking of the desert...who here has went there and how long did you stay for before improving?

    Substantial ME/CFS Very severe forums.phoenixrising.me · sells Oct 2019

    After becoming bedridden with ME/CFS in 1997, years in remote alternative housing and then two years under a carport next to a moldy house helped him go from bedridden to "somewhat functional," able to socialize and do light work. Moving into a newly built,…

  • My post-exertional malaise has completely disappeared with liver flushes!

    Substantial ME/CFS SevereIll 7 years healthrising.org Aug 2019

    Diagnosed with ME/CFS since 2012 and unable to bike or take an extra walk around the house without days of post-exertional malaise, Paul James Parent did a series of liver flushes based on a Gerson-style protocol, substituting a coffee enema on his doctor's…

  • Mitochondrial and Energy Metabolism Dysfunction in ME/CFS - Myhill, Booth and McLaren-Howard Papers

    Substantial ME/CFS Severe forums.phoenixrising.me Aug 2019

    MrTwoToedSloth, mostly housebound and limited to about one activity a week before a week-long flare-up, assembled a broad mitochondrial-support stack (CoQ10, acetyl-L-carnitine, nicotinamide riboside, creatine, D-ribose and more) and noticed improvement at…

  • Trauma, EMDR helped remove a lot of pain from my body

    Substantial ME/CFS Severe forums.phoenixrising.me May 2019

    After more than a decade of ME/CFS with chronic kidney/adrenal pain and stimulant intolerance, did EMDR therapy followed by about two years of Internal Family Systems (IFS) work with a former Buddhist monk. Reports kidney pain subsiding for the first time in…

  • Jennifer Brea's Amazing ME/CFS Recovering Story: the Spinal Series Pt II

    Near-full ME/CFS Very severeIll 8 years healthrising.org May 2019

    Jennifer Brea, the Unrest filmmaker, had been wheelchair-dependent for nearly all of her eight-year illness, at her lowest with breathing difficulties, flaccid limbs, numbness and speech problems. About six months before this post she underwent spinal…

  • Rituxan Number Three, Some Improvement, Still Early to Tell

    Partial ME/CFS Severe forums.phoenixrising.me Mar 2019

    Previously bed- and wheelchair-bound with complex neuroimmune disease, EDS, PID, NK-cell deficiency and MCAS, she had two Rituximab infusions in November 2018 and a third by March 2019. By the 3-month mark she reported clearly improved muscle strength and…

  • Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia and POTS? (Jeff)

    Full recovery ME/CFS Very severeIll 10 years healthrising.org Feb 2019

    Jeff was young, healthy and active before a viral infection with high fever triggered symptoms that progressed until he was bedbound, unable to chew food, and diagnosed with ME/CFS, POTS and mast cell activation syndrome. Years into his decline he learned he…

  • More Fatigue with Famciclovir, I Must Continue

    Partial ME/CFS Severe forums.phoenixrising.me Jan 2019

    Mel9, mostly bedbound with heavy legs and a POTS-type heart-rate response to standing, took 30mg (half a tablet) of Mestinon every four hours and became able to manage a 4km walk plus a further short activity after resting, with reduced POTS symptoms and…

  • B12 injections are the bee's knees

    Partial ME/CFS ModerateIll 15 years forums.phoenixrising.me Oct 2018

    shoponl, 15 years into exhaustion, PEM, brain fog and mild chemical sensitivity with normal B12 blood levels, had years of minimal benefit from sublingual B12 before switching to injections. After about six injections over two months she felt "a thousand…

  • ME/CFS, Valcyte, and me: Third time lucky

    Partial ME/CFS Moderate tracyduvall.com Oct 2018

    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…

  • ANS Rewire Program Works For Bed Bound 11 Year ME/CFS/FM Patient

    Substantial ME/CFS Very severe healthrising.org Sep 2018

    Used the Dynamic Neural Retraining System (DNRS) program for ME/CFS, fibromyalgia and mold sensitivity that had at one point forced her to sleep outside on a back porch for over a year. Initially had mini-crashes but could sleep indoors again, and by a…

  • My Brain Retraining Story

    No benefit ME/CFS SevereIll 6 yearsEffect faded anaharriswrites.com Sep 2018

    She practiced the Gupta Programme's limbic retraining for several months, including daily 20-minute breathing meditation, NLP-style hand motions, and "soften and flow" visualization. She had been severely ill with ME/CFS for about six years, housebound and…

  • First time in remission with ketogenic diet

    Substantial ME/CFS Effect faded forums.phoenixrising.me Jul 2018

    After 10 months on a ketogenic diet, reports a "much better state of health" than on a prior Paleo diet, with less PEM, no air hunger, and better coordination and balance. Describes about 10% more energy overall, with the gain holding rather than fading over…

  • First time in remission with ketogenic diet

    Substantial ME/CFS Effect faded forums.phoenixrising.me Jul 2018

    After more than a year on a ketogenic diet, reports a "very significant improvement" in ME/CFS symptoms: reduced PEM, eliminated air hunger, better coordination and balance, and about 10% more energy and mental clarity. Notes the benefit "tailed off a…

  • First time in remission with ketogenic diet

    Near-full ME/CFS ModerateIll 5.5 years forums.phoenixrising.me Jul 2018

    Adopted a strict ketogenic diet after 5.5 years of moderate ME/CFS with escalating weekly crashes: a 48-hour initial fast, under 25g net carbs a day, roughly 75/20/5 fat/protein/carb macros, electrolyte and baking-soda supplementation, and blood monitoring…

  • Treatments that have worked??

    Partial ME/CFS Severe forums.phoenixrising.me Jun 2018

    One to two weeks into a strict Fuhrman-style whole-food plant-based diet plus L-tyrosine, B12 and chlorella, reports sleeping well and exercising daily with "NO PEM, none whatsoever," resuming running and gaining muscle after years of losing it despite…

  • Moderate success with hookworms/helminthic therapy after 2.5 yrs

    Partial ME/CFS SevereIll 15 yearsEffect faded forums.phoenixrising.me Dec 2017

    After 15 years of severe ME/CFS/FM (about 85% housebound, severe PEM, chronic muscle pain, borderline POTS, brain fog), tried hookworm therapy, titrating from 5 up to 25 worms before settling on a maintenance dose of 10. Over 2.5 years reports reduced…

  • After 26 Years of Hell, the Pridgen Protocol Does it for X

    Near-full ME/CFS Very severeIll 26 years healthrising.org · sells Dec 2017

    The patient, identified only as "X", used the Pridgen Protocol under Dr. Pridgen — Famvir (an antiviral) combined with Celebrex (an anti-inflammatory) — though the page gives no specific doses or treatment duration. He had been ill for 26 years, dropping…

  • Anyone else here have MCS too?

    Near-full ME/CFS Severe healthrising.org Nov 2017

    Takes Miyarisan, a Clostridium butyricum probiotic, on an ongoing basis for severe MCS (perfumes, cigarette smoke, kerosene, air fresheners) alongside ME/CFS, POTS, IBS, brain fog and PEM. Says it almost completely stopped her MCS reactions; she still avoids…

  • Cumin (Cuminum cyminum): Possible PEM Blocker

    Partial ME/CFS ModerateEffect faded forums.phoenixrising.me Nov 2017

    Wishful found that eating about 2-2.5 teaspoons of ground cumin before strenuous exertion (2+ hours of chainsaw work) blocked PEM entirely for roughly 8 days of continued heavy activity, before the effect abruptly stopped working, as it had once before after…

  • Tenofovir (Viread), Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs? Tenofovir Poll

    Substantial ME/CFS Very severeIll 3.5 years forums.phoenixrising.me Oct 2017

    Keela Too, housebound/using a wheelchair or mobility scooter for three years, took tenofovir for a year with regular kidney monitoring, adding sodium bicarbonate from the six-month mark. Gains built slowly from about month 4 to a peak at month 10, greatly…

  • Easy Does It For Nathalie: A Chronic Fatigue Syndrome Improvement Story

    Partial ME/CFS Very severeIll 7 years healthrising.org · sells Oct 2017

    Tried Low Dose Naltrexone (immediate but partial relief from stiffness), a six-week high-dose course of Famvir that gave no benefit, and three years on Valcyte (valganciclovir), which brought her "back to life" out of a bedridden state within weeks but left…

  • Symbioflor-2: Another E.Coli Probiotic

    No benefit ME/CFS cfsremission.com Sep 2017

    Symbioflor-2, an E. coli probiotic, was taken over three weeks with the dose gradually increased to 21 drops a day. Illness duration and severity before starting are not stated, though prior stool testing had shown an absence of bifidobacteria, lactobacillus…

  • Julie Rehmeyer's Mold Avoidance Recovery Story

    Relapsed ME/CFS ModerateEffect faded healthrising.org Mar 2017

    Took a two-week mold sabbatical in Tecopa, California, combined with a modified Pridgen Protocol of valtrex 500mg plus celebrex 200mg, for ME/CFS confirmed by two-day exercise testing (originally diagnosed as fibromyalgia). Had been unable to exercise…

  • Objective CPET improvement & remission on ketogenic diet

    Substantial ME/CFS forums.phoenixrising.me Mar 2017

    Unable to tolerate a full ketogenic diet, this poster followed a looser low-carb, high-fat approach alongside antibiotic herbs and a course of Rifaximin, reporting energy "way up" and PEM "very much improved." Presented as a straightforward success with no…

  • Objective CPET improvement & remission on ketogenic diet

    Substantial ME/CFS ModerateIll 21 years forums.phoenixrising.me Mar 2017

    Twenty-one years into ME/CFS and on a slow decline, this poster switched to a strict ketogenic diet in October 2016 and six months later reports reactive hypoglycemia, disabling migraines and insomnia resolved, and he can sit upright all day without…

  • What's worked for me

    Partial ME/CFS forums.phoenixrising.me Mar 2017

    About a month into an mTORC1-activation supplement regimen, later adding YK-11, tramadol, leucine/glutamine and MYO-X, reports "less PEM, less fatigue, less pain and improved mood." Frames the gains as incremental and additive ("on top of my regimen") rather…

  • WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    Substantial ME/CFS Severe forums.phoenixrising.me Feb 2017

    Two months into a prednisone taper, this poster describes "breathtaking improvements" in PEM, neck/back pain, fatigue, muscle weakness, brain fog, joint pain and dizziness, while noting not everything resolved completely. She continues despite osteoporosis…

  • My experience with Mickel Therapy

    Substantial ME/CFS ModerateIll 14 years forums.phoenixrising.me Nov 2016

    After 14 years of fluctuating moderate-to-severe ME/CFS (good years able to just manage groceries, bad stretches struggling to move around the apartment), did Mickel Therapy and went, in her words, from "15% to 75% plus functioning": no more flu-like…

  • Verapamil, a calcium-channel blocker, eases my symptoms

    Substantial ME/CFS Moderate forums.phoenixrising.me Sep 2016

    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…

  • Mostly Recovered From ME/CFS After 22 Years!!

    Near-full ME/CFS SevereIll 22 yearsEffect faded healthrising.org Aug 2016

    After antivirals didn't work and sleep medication only helped temporarily then stopped helping for 3 years, took up amygdala retraining as her primary intervention for ME/CFS. Had been ill 22 years, with PEM previously triggered by minimal activities like…

  • Mostly Recovered From ME/CFS After 22 Years

    Near-full ME/CFS SevereIll 22 years healthrising.org Aug 2016

    Marilyn, once an avid cyclist and graduate student, developed ME/CFS suddenly in the early 1990s and worsened to nearly housebound. After more than 22 years she credits sleep medications and a stressful New Zealand trip that forced her to push through…

  • Mestinon, Chronic Fatigue, Vagus Nerve Stimulation and Exercise

    Substantial ME/CFS Very severeIll 28 years healthrising.org Jun 2016

    After 28 years of never being able to exercise despite seeing top ME/CFS specialists worldwide, and a recent low point involving surgeries, ER visits and a drug reaction, this patient started 180mg/day Mestinon and within weeks felt an urge to run for the…

  • Siberian ginseng

    Partial ME/CFS healthrising.org Feb 2016

    Siberian ginseng (Eleutherococcus senticosus) was taken as part of a Chinese herbal formula alongside astragalus, with no specific dose stated. No detail is given on how long she had been ill or how severe her ME/CFS was. She reported "I love Siberian…

  • BEEN OFF THE COUCH FOR 4 SOLID MONTHS! YEE HAW!!!

    Near-full ME/CFS Very severeEffect faded forums.phoenixrising.me Oct 2015

    Previously sleeping 16-20 hours a day, largely confined to the couch and finding it "a challenge to walk down to my mailbox," began using an infrared sauna every other day (about 30 minutes, inducing a ~103F fake fever) alongside "Aging Backwards" exercise…

  • Tried Stimulants, Seen notable improvement

    Relapsed ME/CFS Effect faded forums.phoenixrising.me Oct 2015

    Two months of daily Ritalin substantially lowered this poster's sensitivities and raised his PEM threshold at first, but he describes a severe subsequent relapse, attributing the initial gains to "squeezing every last bit out of this already overtaxed…

  • Feeling better.

    Substantial ME/CFS Very severe healthrising.org Apr 2015

    Tried a homeopathic medication, type and dose not specified, while 95% bedbound with ME/CFS, describing every day beforehand as a new exercise in pain, PEM and lost sleep. Says in her own words that she now feels so much better. Notes that her daughter, who…

  • LED, Red, Intranasal Light Therapy

    Substantial ME/CFS Very severeIll 2.75 years forums.phoenixrising.me Apr 2015

    ScottTriGuy, housebound with deep fatigue, nausea, brain fog and strong heartbeat about 2.75 years after onset, started an intensive 5-day course of red/infrared laser therapy on the back of his neck, then continued daily. Symptoms eased markedly by day…

  • Has anyone achieved remission or recovery from treatment by any doctor?

    Near-full ME/CFS forums.phoenixrising.me Mar 2015

    SOC's daughter took two years of combined antivirals, Valcyte (valganciclovir) and Valtrex (valacyclovir), prescribed by an ME/CFS specialist. Beforehand she had been declining, sitting around activity level 4-5; on the antivirals she rose to about level 8-9…

  • Significant improvement on MitoQ

    Partial ME/CFS Moderate forums.phoenixrising.me Jan 2015

    MitoQ, taken as 5mg twice daily for 6 days, sharply cut this person's fatigue within hours of the first dose. Illness duration before starting is not stated. Fatigue levels dropped and post-exertional malaise decreased over the 6-day trial, with skin quality…

  • Rambler's Mold Avoidance Experiments

    Substantial ME/CFS SevereIll 4 years forums.phoenixrising.me Nov 2014

    After needing stimulants just to leave his moldy San Francisco house for four years, strict mold avoidance for about two weeks brought sleeping through the night, less brain fog, clearer vision, more morning energy and almost no tingling in his hands and…

  • what has worked for you

    Partial ME/CFS forums.phoenixrising.me Oct 2014

    Using hot baths for muscle soreness, pacing, and very light aerobic exercise, she reports post-exertional malaise is "not a problem" for her now and puts current functioning at 50%, without giving a prior baseline or duration for comparison.

  • has anyone really benefited ie cured by exercise?

    Relapsed ME/CFS ModerateEffect faded forums.phoenixrising.me May 2014

    Describes a long remission working part-time as a gardener with substantial exercise tolerance, ended when measles plus a minor operation triggered relapse. In the six years since, even very short walks or stretching bring on PEM. She states plainly "I do…

  • Feeling much better avoiding certain foods

    Partial ME/CFS forums.phoenixrising.me Apr 2014

    After recently cutting out meat and eating mostly vegetables, he reports being able to exercise "with no PEM the next day" - notable since post-exertional malaise is usually the limiting ME/CFS symptom. He is cautious about the finding, saying "I haven't yet…

  • The Resistant Starch Challenge: Is It the Key We've Been Looking For?

    Partial ME/CFS forums.phoenixrising.me Jan 2014

    Crux, with a long history of IBS, followed the thread's resistant-starch protocol (raw potato starch, building toward 3-4 tablespoons/day, though he could only tolerate about 2) and reported less fatigue and PEM after 3 weeks, describing it as "a slow…

  • Has anyone on this site cured him or herself of CFS/ME? Did I?

    Substantial ME/CFS SevereIll 2 yearsEffect faded forums.phoenixrising.me Oct 2013

    Used a mix of doxycycline (which finally knocked out a persistent fever), roughly 20 doses of dexamethasone borrowed from a friend (temporary but "phenomenal" relief), Isocort, daily hydrocortisone gel, raw herbal teas, green powders, methylation support,…

  • Heart Rate Monitor Based Exercise Program Improves Heart Functioning in Chronic Fatigue Syndrome (ME/CFS)

    Substantial ME/CFS Moderate healthrising.org Aug 2013

    A 28-year-old woman with ME/CFS, caught in a push-crash cycle and no longer able to work, used a heart-rate monitor set to beep whenever she exceeded her anaerobic threshold as a cue to sit or lie down, combined with gentle flexibility work, lying-down…

  • CBS success!

    Substantial ME/CFS ModerateIll 7 years forums.phoenixrising.me May 2013

    Seven years into ME/CFS with post-exertional fatigue and cognitive dysfunction, she used a CBS-mutation-targeted protocol of activated charcoal, magnesium, molybdenum, manganese and sulfur-food restriction. Cognition "started to clear" within hours of her…

  • How I yoga for ME/CFS

    Substantial ME/CFS Severe myjourneythrume.wordpress.com Mar 2013

    Gentle, restorative yoga done at home from books, DVDs, and podcasts, starting with about 10 minutes daily of simple poses and building over two years to 25-30 minutes most mornings, sometimes repeated later in the day. She had completely crashed with ME/CFS…

  • Our Experience with Antiretrovirals

    Relapsed ME/CFS SevereEffect faded x-rx.net Jan 2013

    Dr. Deckoff-Jones, suspecting XMRV involvement, started AZT plus raltegravir in March 2010, added tenofovir two months later, then dropped AZT (2011) and raltegravir (2011) to end on tenofovir alone before stopping all antiretrovirals by late 2012. She…

  • Feel much better on methylation and pyroluria treatment, but still weird symptoms

    Near-full ME/CFS ModerateIll 2 years forums.phoenixrising.me Aug 2011

    After years of chest pain and anxiety severe enough to require benzodiazepines, combining B12 injections, folate, P5P and a kryptopyrroluria (KPU) protocol of high-dose zinc and B6 resolved chest pain he'd had for over 2 years, sharply reduced anxiety, and…

  • Stages of Recovery - personal experience

    Near-full ME/CFS SevereIll 5 years forums.phoenixrising.me May 2010

    Followed Dr Myhill's standard protocol (B3, B12, magnesium, CoQ10, 15g/day L-glutamine, 10g/day BCAAs, 1g/day malic acid) starting Nov/Dec 2007, combined with an elimination diet of mainly white rice and chicken, FIR sauna detox, and Buteyko breathing. Went…

  • Arginine + Vitamin C for Long Covid

    Substantial Long COVID SevereIll 4 months longcovid411.substack.com

    L-arginine at 1.5g twice daily, modeled on a published arginine-plus-vitamin-C protocol, was started by a long COVID patient who had been unable to work as a programmer since about four months after a March 2022 infection, with severe headaches, chest pain,…

  • Why NMN and NR is not curing our CFS?

    Partial ME/CFS Moderate forums.phoenixrising.me

    NMN, at an unspecified dose, was reported as helping broadly across symptoms after about a week of use. Illness duration before starting is not stated. The person specifically noted losing the morning "hyper-nervous, hyper-sensitivity" feeling and described…

  • It Made My Dreams Feel Possible Again: How Oxaloacetate CFS Helped Nate Reclaim His Future

    Substantial ME/CFS SevereIll 10 years oxaloacetatecfs.com · sells

    Oxaloacetate supplement, dose unspecified, taken for about a year and a half at the time of writing. Nate, an audio engineer, had been ill for over a decade, with minor activity like walking his dog or washing dishes able to trigger multi-week crashes of…

  • List of ME/CFS Recovery and Improvement Stories

    Substantial ME/CFS forums.phoenixrising.me

    Sandman00747 is listed reporting substantial improvement on a 150mg/day tenofovir combination pill, describing PEM as resolved and saying he "almost" has his life back, with an incidental note of nail psoriasis clearing.

  • Cumin (Cuminum cyminum): Possible PEM Blocker

    Partial ME/CFS forums.phoenixrising.me

    Index entry credits Aspen with cumin reducing post-exertional malaise. No further detail on duration of illness, severity, or durability was available beyond the index listing.

  • Cumin (Cuminum cyminum): Possible PEM Blocker

    Partial ME/CFS forums.phoenixrising.me

    Index entry credits Greenplum with cumin reducing post-exertional malaise. No further detail on duration of illness, severity, or durability was available beyond the index listing.

  • Cumin (Cuminum cyminum): Possible PEM Blocker

    Partial ME/CFS forums.phoenixrising.me

    Index entry credits Elike with cumin tea for preventing post-exertional malaise. No further detail on duration of illness, severity, or durability was available beyond the index listing.

  • List of ME/CFS Recovery and Improvement Stories (thread, page 10)

    Substantial ME/CFS Very severe forums.phoenixrising.me

    batty_ash03 went from housebound and mostly bedbound to mild, with PEM only from cardio exercise, within two months of starting Mestinon 45mg three times a day. By 4-5 months the gains were sustained, and she had added strength training and part-time work…

  • More Fatigue with Famciclovir, I Must Continue

    Partial ME/CFS forums.phoenixrising.me

    Index entry credits Hamsterman with prednisolone for preventing post-exertional malaise. Attempting to verify the linked post did not locate a prednisolone discussion on the fetched page, so no further detail on duration of illness, severity, or durability…

  • 3 day fasting to reset immune system

    Partial ME/CFS Moderate s4me.info

    Before getting ME, andypants had done several 3-to-10-day fasts and felt refreshed by them; the first attempts after falling ill, at up to 44 hours, instead left their muscles "really achey" with mild PEM and seemed to make things worse. Scaling back to a…

  • Fasting - full water only variety - has anyone here tried it?

    Relapsed ME/CFS SevereEffect faded forums.phoenixrising.me

    Eddy M, who has an atypical ME/CFS with debilitating muscular fatigue, neuropathic symptoms and PEM, tried a planned 7-day water fast but abandoned a second attempt after only 8-10 hours. Rather than helping, the fast made things worse: fatigue gradually…

  • My Story of Craniocervical Instability, ME/CFS, and Tethered Cord

    Substantial ME/CFS Very severe mechanicalbasis.org

    Jeff Wood's treatment progressed from a Philadelphia cervical collar (worn over a month) to a halo brace with four skull screws (worn several months) to skull-to-C2 fusion surgery in early 2018, guided by a dynamic CT scan with flexion and extension views;…