List of ME/CFS Recovery and Improvement Stories

Hip · Jun 25, 2020

This is a thread for ME/CFS recovery or improvement stories, detailing patient accounts of treatments which have led to full recovery or substantial improvements in their overall ME/CFS symptoms, as well as treatments which have substantially improved specific ME/CFS symptoms (like fatigue, PEM, brain fog, sound sensitivity, etc).

The degree of improvement a patient achieved (where known) is given in terms of the number of levels they moved up on the ME/CFS scale of: very severe, severe, moderate, mild, remission. For example, if the patient was initially severe, and then moved up to mild as a result of a treatment, that is a 2-level gain.

If anyone knows of any other recovery or improvement stories that could be included in this thread, please post. That way we can build up a repository of interesting treatments.

ME/CFS Recovery and Improvement Stories

Valcyte (Valganciclovir) — Antiviral Drug for Herpesviruses

Valcyte is a potent antiviral drug effective against a wide spectrum of herpesviruses, including EBV, HHV-6, cytomegalovirus, varicella-zoster and herpes simplex. Typical dose for ME/CFS is 900 mg daily. Studies which have examined the efficacy of Valcyte for ME/CFS are detailed in this post.

• ME/CFS patient (OnlyInDreams) — with active cytomegalovirus infection made a 2-level gain, moving from moderate ME/CFS to remission, as a result of taking Valcyte 900 mg daily; but if he stops the Valcyte, he finds the ME/CFS soon returns.

• ME/CFS patient (Mariesak) — went into a partial remission lasting 8 years, after a 9 month course of Valcyte (her health gains remained even after she stopped the Valcyte).

• ME/CFS patient (Mariesak's daughter) — completed a 12 month course of Valcyte and also went into remission, and has remained in remission for over a decade.

• ME/CFS patient (JenB) — found Valcyte had a "profound effect".

• ME/CFS patient (TracyD) — improved on low-dose Valcyte 450 mg once daily.

• ME/CFS patient (SOC) — made a 1-level gain on Valcyte, moving from severe to moderate.

• ME/CFS patient (SOC's daughter) — made a 1½-level gain, going from nearly housebound (moderate ME/CFS) to full remission after 18 months on Valcyte for active HHV-6.

• ME/CFS patient (Peter42) — with mild ME/CFS made a 1-level gain and became almost free of ME/CFS symptoms after taking Valcyte for a year. Then 2 years after he stopped taking Valcyte, his ME/CFS returned.

• ME/CFS patient (ArgyrosfeniX) — made a 1-level gain moving from moderate to mild ME/CFS after two years of Valcyte at 900 mg once daily.

• ME/CFS patient (Dan_USAAZ) — with severe HHV-6-associated ME/CFS improved on Valcyte 900 mg daily, perhaps achieving a ½-level gain.

• ME/CFS patient (jstefl) — achieved a 1-level gain moving from severe ME/CFS to moderate after 450 mg dose of Valcyte twice a day for 10 months. This improvement occurred in 2008, and has lasted more than a decade.

• ME/CFS patient (RUkiddingME) — with severe ME/CFS and bedbound most of the time was able to resume driving and shopping again after a year on Valcyte (1-level gain).

Valtrex (Valaciclovir) — Antiviral Drug

Valtrex is an antiviral effective against Epstein-Barr virus. Some ME/CFS doctors prescribe this drug to ME/CFS patients who have an active EBV infection. For EBV ME/CFS treatment, Dr Lerner used a dose of 1000 mg four times daily. Studies which have examined the efficacy of Valtrex for EBV-associated ME/CFS are detailed in this post.

• ME/CFS patient (Leah) — with severe ME/CFS achieved near recovery (2½-level gain) from a course of Valtrex prescribed by Dr Martin Lerner. She is now able to work and socialize, but cannot exercise vigorously.

• ME/CFS patient (Heather) — fully recovered after a year or so of taking Valtrex prescribed by Dr Martin Lerner.

• ME/CFS patient (Janet, see comments section) — with severe ME/CFS achieved 2-level gain, moving up to mild ME/CFS after taking Valtrex for many years.

Valtrex (Valaciclovir) Plus Valcyte (Valganciclovir) Together

• ME/CFS patient (Jacyln) — with severe EBV ME/CFS achieved 2-level gain, moving up to mild ME/CFS after taking a course of Valcyte 450 mg twice daily plus Valtrex 1500 mg four times daily prescribed by Dr Martin Lerner.

• ME/CFS patient (Marilynne, see comments section) — with severe ME/CFS achieved 2-level gain, moving up to mild ME/CFS after taking a course of Valcyte 450 mg twice daily plus Valtrex 1500 mg four times daily prescribed by Dr Martin Lerner.

• ME/CFS patient (Renee) — with moderate to mild ME/CFS associated with active EBV and cytomegalovirus recovered to a near-normal life (1-level gain) after a course of Valtrex and Valcyte prescribed by Dr Martin Lerner. Leads near normal life but cannot exercise vigorously.

Tenofovir (Viread) — Antiviral Drug

Tenofovir is an antiviral drug normally used for hepatitis B virus or HIV. When used to treat ME/CFS, Dr John Chia reports it works for almost 1 in 3 ME/CFS patients. Refs: 1 2 Some ME/CFS patients find tenofovir hard to tolerate initially, but this issue can be avoided by starting at low doses of 30 mg daily, and working up to the full dose of 300 mg daily.

• This ME/CFS patient (Keela Too) — experienced a 1-level gain moving from approximately severe ME/CFS to moderate after taking a course of tenofovir for 12 months. The gains in her health have remained permanently so far.

• ME/CFS patient — with active coxsackievirus B4 infection noticed substantial improvements from tenofovir after just 4 months at 150 mg daily (he took combination pill containing tenofovir + lamivudine). He said: "I almost have my life back. My endurance has increased beyond belief, and PEM is a thing of the past". Even after he stopped tenofovir at the 4 month point, his gains remained. He also found that tenofovir resulted in a suspected nail psoriasis (autoimmune condition) he had for 5 years to suddenly heal.

Antiretrovirals (Tenofovir, Raltegravir, AZT)

These HIV antivirals are immunomodulatory, and can inhibit human endogenous retroviruses (HERVs). Ref: 1 HERV-K activity has been linked to moderate (but not severe) ME/CFS. Ref: 1

• ME/CFS patients (Dr Jamie Deckoff-Jones and her daughter Ali) — both had improvements in their ME/CFS after taking tenofovir 300 mg once daily plus raltegravir 400 mg twice daily.

• ME/CFS patient (Dr Michael Snyderman) — had success in treating his ME/CFS with AZT, raltegravir and tenofovir.

Oxymatrine (Equilibrant) — Immunomodulator

Oxymatrine is an immunomodulatory herbal extract which ramps up the antiviral Th1 immune response. Dr John Chia uses oxymatrine to treat enterovirus ME/CFS.

• ME/CFS patient (Diwi9) — with enterovirus ME/CFS achieved a substantial improvement from oxymatrine (in the form of Dr Chia's Equilibrant).

• ME/CFS patient (tdog333) — did well taking 6 pills of oxymatrine daily.

• ME/CFS patient (.jm.) — with mild enterovirus ME/CFS went into remission (1-level gain) as a result of taking oxymatrine.

GcMAF — Immunomodulator

GcMAF is an immunomodulatory protein which stimulates macrophages to fight pathogens in the body. GcMAF can be taken orally, by transdermal cream, or via injection. Some sources for GcMAF in this post.

• ME/CFS patient (carlystar13) — obtained a 3-level gain, going from severe ME/CFS to full remission, after a year of taking Goleic GcMAF.

• ME/CFS patient (CindyWillis) — almost completely recovered taking from 40 to 80 ng of GcMAF over a month and a half.

Low-Dose Oral Interferon Alpha

Interferon alpha is a potent immunomodulator that activates the intracellular immune response. You can buy interferon alpha suppositories or nasal sprays cheaply from Russian online pharmacies (see this post), and these may be adapted for oral use.

• ME/CFS patient (Linda) — fully recovered using low doses of interferon alpha taken orally (rather than the usual subcutaneous injection route). She took 250 IU of interferon alpha orally four times a day. Brain fog began to improve after a few weeks, and her ME/CFS pain symptom cleared up after two months. Possibly this oral route interferon targets enterovirus infections in the stomach tissues?

High-Dose Selenium

The high-dose selenium protocol used here is detailed in this post.

• ME/CFS patient (Hip) — achieved a ½-level gain moving from the bottom end of moderate to the top within only 10 days as a result of high-dose selenium (taking selenomethionine 400 mcg once daily on an empty stomach).

Inosine + DMAE = Home-Made Imunovir

According to a ME/CFS patient blog article (now deleted), mixing inosine and DMAE together creates what is equivalent to the antiviral drug Imunovir (isoprinosine).

• ME/CFS patient (Doug) — with major mold exposure-induced illness was more-or-less cured by inosine 2000 mg daily plus DMAE 700 mg, as well as other supplements. See also here. Doug tried inosine on its own for some months, but it was not until he added DMAE to the inosine that he obtained a large increase in health.

Rapamycin (Sirolimus, Rapamune)

Rapamycin is a drug which calms the immune response, and is usually used to prevent organ transplant rejection, and to treat some autoimmune diseases. It is also used by the anti-aging community, as it extends lifespan in animal tests.

• Several ME/CFS patients — observed improvements on rapamycin.

Ketogenic Diet

A ketogenic diet is a very low-carb and high-fat diet. On a ketogenic diet, the brain is fueled by ketones rather than the usual glucose. Ketogenic diets are known to increase the number of mitochondria in brain cells. These diets are traditionally prescribed for patients with seizures.

• ME/CFS patient (leokitten) — with severe bedbound ME/CFS improved substantially with a ketogenic diet, so that he is no longer bedbound or housebound (2-level gain).

Helminth Therapy

Helminths are microscopic parasitic worms which live in the intestines. They modulate the immune function in the gut, which can have benefit in some diseases, especially autoimmune illnesses.

• ME/CFS patient (Gyre) — achieved a 2-level gain, moving from severe ME/CFS to mild as a result of helminth therapy, using the worm Necator americanus.

Kambo (Medicine From an Amazonian Frog)

Kambo is a substance secreted by the Amazonian giant leaf frog, containing a range of bioactive principles, including sauvagine, a hormone related to the experimental ME/CFS drug CT38 (the Cortene Peptide).

• ME/CFS patient (Jox) — went from severe to near remission (2½-level gain) by taking the Amazonian medicine kambo once a week.

Fecal Microbiota Transplantation (FMT)

FMT involves transplanting fecal material from a healthy donor into a patient's intestines.

• Chronic Lyme patient (Kasia Vermaire) — with severe illness experienced a 3-level gain and made a full recovery after FMT treatment at the Taymount Clinic. Blog article here.

Low-Level Laser Therapy / LED Light Therapy

Also known as photobiomodulation, this therapy uses red or infrared light emitted by a laser or LED lamp, applied to the area of interest, such as the head and brain. Light of these wavelengths is known to stimulate mitochondrial complex IV.

• ME/CFS patient (ScottTriGuy) — housebound with moderate ME/CFS quickly recovered enough health to return to work (1-level gain) as a result low-level laser therapy (LLLT) applied to his head.

• ME/CFS patient (Johannes) — move from severe ME/CFS to moderate ME/CFS (1-level gain) using red and infrared light therapy on on his entire head and body daily (10 minutes on the front of the body and 10 minutes on the back). Light power used is 90 mW/cm2. Ref: 1

C60 Supplement

C60 (buckminsterfullerene) is a molecule comprising 60 carbon atoms that are arranged into a spherical shape. C60 targets the mitochondria where it acts as a non-perishable resuable antioxidant. 1

• ME/CFS patient — with moderate ME/CFS makes at least a 1-level gain and goes back to work as a result of taking a C60 supplement.

Bob Beck Microbe Electrifier

• ME/CFS patient (intheknow) — with moderate ME/CFS recovered after 90 hours of treatment with a Bob Beck Microbe Electrifier connected across his wrists (2-level gain).

Nitrate Drugs

Nitrate drugs increase levels of nitric oxide in the body. These drugs are vasodilators typically given to relieve angina pains.

• ME/CFS patient (zzz) — experienced a 3-level gain going from severe ME/CFS to full remission in a matter of weeks after taking a single 10 mg dose of isosorbide dinitrate (a nitrate drug). That remission lasted for 8 years, but then relapse occurred after a minor surgery.

Statin Drug Atorvastatin

• ME/CFS patient (Hopefulone) — with moderate ME/CFS greatly improved after starting atorvastatin 80 mg daily.

Mitochondrial Cocktail

• ME/CFS patient (MrTwoToedSloth) — with moderate-to-severe ME/CFS went up to mild after taking a mitochondrial cocktail comprising Q10 300 mg, acetyl-L-carnitine, Na-D-alpha lipoic acid, nicotinamide riboside and a vitamin B complex for 3 months (1½-level gain).

Dr Kenny De Meirleir Protocol

• ME/CFS patient (sam.d) — with severe ME/CFS and who was not even able to speak, experienced a 1-level gain on a protocol prescribed by KDM. He became moderate, and able to do volunteer work from home. The KDM protocol included: Gammanorm (immunoglobulin IgG), breathing oxygen for 5 hours daily, vitamin B12 injections, and several other treatments.

Peptides LL-37 + BPC-157

LL-37 is a broad-spectrum antimicrobial peptide naturally made in the body. Anecdotally, supplemental LL-37 helps fix gut issues. BPC-157 is a peptide naturally found in the stomach which may promote healing and tissue regeneration.

• ME/CFS patient (beatsmyth) — with severe ME/CFS experienced a 2-level gain, moving up to mild ME/CFS, after taking a combination of two peptides LL-37 and BPC-157 for three months. He took 125 mcg of LL-37 daily for 6 weeks, then took a 2 week break, and then took LL-37 for another 6 weeks. This treatment also fixed his IBS.

Daosin (Diamine Oxidase) Supplement

Daosin is a supplement providing diamine oxidase, an enzyme produced in the body to break down excess histamine.

• ME/CFS patient (xlynx) — with severe bedbound ME/CFS and a diamine oxidase deficiency greatly improved by taking the supplement Daosin.

High-Dose Sublingual Biotin

High-dose biotin (100 mg three times daily) has been used experimentally to treat multiple sclerosis. Ref: here.

• ME/CFS patient (BiotinJunkie) — found taking 10 mg of biotin sublingually several times daily worked well for his symptoms.

• One individual with autism (LouiseLouise) — found high-dose biotin 100 mg twice daily dramatically improved her autism.

Surgical Treatment of a Jawbone Cavitation Infection

Jawbone infections (osteomyelitis) can develop inside hollow pockets within the jawbone called cavitations. Cavitations may be left in the jawbone after a tooth extraction. Jawbone cavitation infections induce the inflammatory chemokine RANTES, as well as FGF-2, which are both linked to systemic disease.

A simple test for a jawbone infection is applying pressure with a finger on the gums to the jawbone beneath; if any area feels painful, this indicates a possible jawbone infection (though this method will not always detect jawbone infection). More reliable tests are MRI STIR scans and Cavitat scans. More info here.

• ME/CFS patient (Ian) — recovered from ME/CFS after surgically treating an infection within a jawbone cavitation.

• ME/CFS patient (ERROL_FARNHAMSURREY) — with mild ME/CFS made substantial improvements after treating a jawbone cavitation infection.

• ME/CFS patient (Dukey) — with moderate (housebound) ME/CFS got better after surgery to remove a jawbone cavitation infection (cavitational osteonecrosis).

Treating Nasopharynx Inflammation (in Vaccine-Triggered ME/CFS)

This thread details a published study in which patients with vaccine-triggered ME/CFS (or an ME/CFS-like illness) are cured or improved by treating their nasopharynx inflammation at the back of their nasal cavity with the topical anti-inflammatory zinc chloride.

• ME/CFS patient (DrFaust) — cured his ME/CFS using topical zinc chloride to treat his nasopharyngitis (nasopharynx inflammation).

Surgery for Craniocervical Instability

Craniocervical instability (CCI) is a looseness or laxity of the joint connecting the top of the spine with the skull. The Phoenix Rising CCI forum is here.

• ME/CFS patient (jeff_w) — was cured of his severe ME/CFS by surgery to fix his craniocervical instability (3-level gain).

• ME/CFS patient (JenB) — was cured of her ME/CFS by surgery to fix craniocervical instability, atlantoaxial instability and tethered cord.

• ME/CFS patient (Danielle) — with severe ME/CFS went into full remission (3-level gain) after C1-C2 fusion surgery for atlantoaxial instability, and surgery for occult tethered cord syndrome.

• ME/CFS patient (Karen) — had a major improvement after CCI fusion surgery.

Jawbone Realignment

The following two jawbone realignments were performed by Dr Amir, a dentist based in London:

• Patient with ME/CFS-like illness (Uzma Qureshi) — recovered after jaw realignment using dental appliances.

• Patient with ME/CFS-like illness (Hannah) — recovered after jaw realignment using dental appliances.

Tricyclic Antidepressants

Tricyclic antidepressants (TCAs) like amitriptyline increase the amount of serotonin and norepinephrine in the brain, and block the action of acetylcholine.

• Patient with ME/CFS or ME/CFS-like illness (RuralRick) — finds high doses of tricyclic antidepressants (TCAs) put his ME/CFS into remission.

Mild Hyperbaric Oxygen Therapy (mHBOT)

Mild hyperbaric oxygen therapy (mHBOT) is performed in a soft hyperbaric oxygen chamber that patients usually buy and keep in their home. Whereas regular hyperbaric oxygen therapy (HBOT) uses pressures up to 2 or 3 atmospheres, mHBOT pressures only go up to around 1.3 or 1.5 atmospheres.

• ME/CFS patient or possibly a post-viral fatigue patient (Jesse2233) — had a moderate ME/CFS illness that started with a viral infection, and lasted about 18 months before it went into remission. He had high antibody levels of 1:640 to coxsackie virus B4 on the ARUP lab tests.1 He went into remission (2-level gain) while doing mild hyperbaric oxygen therapy sessions daily in a home soft hyperbaric chamber, and credits his remission to mHBOT. (Although if it he had post-viral fatigue rather than ME/CFS, it may have resolved on its own anyway). He estimates he did over 200 hours of mHBOT.

• ME/CFS patient (used_to_race) — with mild-to-moderate ME/CFS associated with active EBV went into remission (1½-level gain) after two years of mild hyperbaric oxygen (mHBOT) sessions daily at 45 to 90 minutes each session. He also took hydroxychloroquine 400 mg daily during this time, so is not sure which led to his remission.

Pridgen Protocol (Famvir + Celecoxib)

The Pridgen protocol was devised by Dr William Pridgen as a means to treat the herpes simplex virus infections he believes may underpin fibromyalgia. This protocol is being experimentally used to treat ME/CFS as well. The protocol is based on the antiviral drug Famvir (famciclovir), to which the COX inhibitor celecoxib is added, as COX inhibitors are shown to have antiviral effects against herpes simplex.

• ME/CFS patient — improved substantially on the Pridgen protocol (normally Famvir 250 mg twice daily and celecoxib 200 mg twice daily) along with an antidepressant.

Yoga

Yoga is thought to up-regulate the parasympathetic nervous system. The newly-discovered link between ME/CFS and spinal/cranial conditions like craniocervical instability perhaps throws a light on why yoga might help some ME/CFS patients, given that many yoga asanas stretch and tone the spine and neck.

• ME/CFS patient (Sally) — with moderate ME/CFS recovered through yoga (2-level gain), according to a newspaper article.

• Patient with ME/CFS-like illness (Dan) — with symptoms like slurred speech and wild myoclonic jerks sending his limbs flying, went into near remission after doing lots of yoga.

Moving to Hot, Humid and Sunny Costa Rica

• ME/CFS patient (Paul) — with moderate-to-severe ME/CFS went into near remission (2-level gain) after 4 days of arriving in Costa Rica. On going back to his home in Canada, his ME/CFS quickly reappeared. But returning Costa Rica for a second time placed him back into remission, again after around 4 days of arriving. And previously, when Paul had a lingering post-viral fatigue after an infection, it was observed this was fully cured during a visit to Thailand (which is on the same latitude as Costa Rica, and with a similar hot and humid climate). Paul moved to Costa Rica permanently, in order to keep his ME/CFS in remission.

Improving PEM

Post-exertional malaise (PEM) is the temporary worsening of ME/CFS symptoms which occurs after physical or mental exertion.

A useful thread detailing many treatments for PEM is found here. The PEM busters in that thread include: corticosteroids, Mestinon, cannabis, D-ribose, BCAA, Q10 and sodium bicarbonate.

Prednisolone

• ME/CFS patient (Hamsterman) — normally bedbound with severe ME/CFS found a one-off dose of 20 mg of prednisolone taken 30 minutes before a major exertion completely prevents PEM. He found taking prednisolone just before exercise allowed him to do a full workout at the gym without getting any PEM repercussion whatsoever. But he cautions that these doses of prednisolone should not be used daily, only occasionally, as the immunosuppressive effects of daily prednisolone will likely allow underlying viral infections to proliferate.

Cannabis

• Several ME/CFS patients — report cannabis is a good PEM shielder and PEM reliever: they find if cannabis is taken just when the first signs of PEM appear, at the first PEM "danger signals", then it will prevent the PEM from fully manifesting.

Mestinon (Pyridostigmine)

• ME/CFS patient (Mel9) — found Mestinon greatly reduced her PEM. Taking 30 mg of Mestinon once every four hours allows her to have a relatively active day (4 km walks).

• ME/CFS patient — with this illness for 28 years found Mestinon 180 mg per day eliminated her PEM, allowing her to do 3 mile runs and go to the gym without any PEM repercussion.

Improving Energy

MitoQ Supplement

MitoQ is a mitochondrially-targeted form of Q10. There is a lot of published research on MitoQ.

• ME/CFS patient (cigana) — finds that MitoQ significantly decreases his fatigue levels. He speculates his genetic A16V (rs4880) +/+ mutation, which results in lower levels of the mitochondrial antioxidant Mn-SOD, may explain why he gets substantial benefit from MitoQ. So those with an A16V +/+ mutation might consider trying MitoQ. However, later he concluded that this energy boost only appeared when he took GcMAF at the same time as MitoQ.

Dichloroacetate (DCA)

Dichloroacetate in ME/CFS studies was found to stimulate mitochondrial energy metabolism, and improve fatigue, brain fog and pain in about one-third of patients (but the study found those with comorbid autoimmune conditions are less likely to respond to DCA). Refs: 1 2 See these tips for avoiding the possible neuropathy side effects of DCA.

• ME/CFS patient (XenForo) experienced "a lot more energy" from DCA.

Cellfood (Deuterium Sulfate)

The active ingredient in Cellfood is deuterium sulfate, a form of sulfuric acid based on the hydrogen isotope deuterium (formula D2SO4). Deuterium sulfate is claimed to have an enzymatic action which improves tissue oxygenation and reduces oxidative stress.

• ME/CFS patient (Mary) — found the supplement Cellfood 10 drops three times daily increased her energy.

Improving Brain Fog

Vitamin B12 Injections / Transdermal B12 Oils

• ME/CFS patient (Hip) — found the B12 transdermal oils formulated by Dr Greg Russell-Jones in Australia help improve brain fog.

Piracetam

• ME/CFS patient (Hip) — found piracetam 800 mg daily helps improve brain fog.

Improving Sound or Light Sensitivity

Very Low-Dose Amisulpride

• ME/CFS patient (Hip) — finds the dopamine system stabilizer drug amisulpride in very low-doses reduces sound sensitivity (hyperacusis), and has several other beneficial effects on ME/CFS symptoms.

Improving Emotional/Stress Sensitivity

Hydrogen-Rich Water

Hydrogen-rich water is made by dissolving hydrogen gas into water under pressure. HRW known to stimulate the release of the hormone ghrelin, which in turn stimulates the hypothalamus. The H2 molecule within HRW is also an antioxidant.

• ME/CFS patient (Hip) — found hydrogen-rich water noticeably reduces the emotional sensitivity / stress sensitivity symptom of ME/CFS.

Improving Gut Health, IBS and SIBO

Chloramine Avoidance

Chloramine is a disinfectant added to the drinking water in some regions. Chloramine can be irritant to the mucous membranes. Note that chloramine is not the same as chlorine, and carbon water filters do not remove chloramine.

• ME/CFS patient (Hip)— substantially improved his IBS-D by removing chloramines from his tap drinking water, which is done by adding a pinch of ascorbic acid (vitamin C) powder to the water, as this reacts with and neutralizes the chloramine.

Improving the "Wired but Tired" Hyperarousal

Useful thread: Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

Treating Anxiety

N-Acetyl-Glucosamine

• ME/CFS patient (Hip) — was able to eliminate his moderate-to-severe generalized anxiety disorder with a set of supplements including N-acetyl-glucosamine (NAG). Many other ME/CFS patients with anxiety who tried these supplements also observed a major reduction in anxiety levels, so this is a tried and tested treatment.

Prebiotics

Prebiotics are food which feed friendly bacteria in the gut, but which bad bacteria cannot eat.

• ME/CFS patient (Hip) — found prebiotics such as inulin and FOS greatly reduced anxiety levels and improved mood.

Treating Depression

Saffron

• ME/CFS patient (Hip) — finds Spanish saffron 100 mg quite helpful for depression. Antidepressant effects kick in within an hour or so of taking it. One systematic review found saffron to be as effective as standard pharmaceutical drugs. But watch out for fake saffron.

Treating Headaches or Migraines

Trimetazidine

Trimetazidine is a drug which improves myocardial glucose utilization.

• ME/CFS patient (Hip) — finds a single dose of trimetazidine 40 mg eliminates his normally 3-day long headaches within 12 hours, and if taken at the initial signs of headache, prevent the headache from manifesting in the first place.

Improving Sleep

CBD Oil

• ME/CFS patient (Iquitos) — finds taking 15 drops of cannabidiol (CBD) oil allow him to sleep much better.

Melatonin

• ME/CFS patient (Hip) — finds taking melatonin 2 hours before planning to go to bed helps get him to sleep, and helps prevent the sleep cycle inversion of ME/CFS (where you are awake very late at night, and sleeping during day).

Relieving Pain

Low-Dose Naltrexone (LDN)

• ME/CFS patient (Wishful) — finds LDN works very well to relieve his ME/CFS body aches, which he thinks may be neuropathic pain.

Improving the "Molasses" Heavy Limbs Feeling

Far Infrared Heat

• ME/CFS patient (Hip) — finds far infrared heat on his back for several hours a day reduces the heavy limb feeling of ME/CFS, perhaps by its anti-inflammatory effects on the spine (as he speculates spinal ganglion inflammation might cause the heavy limb feeling).

sb4 · Jun 25, 2020

Very good that you have put in the effort to make this, thanks.

Wolfcub · Jun 25, 2020

Yes, thank you @Hip This is an excellent list

Wishful · Jun 25, 2020

Add in cumin (Cuminum Cyminum) for blocking and then curing me of physically-induced PEM.

Spoiled coconut milk cured me of the type IV food sensitivity that started with my ME. I don't see that as a repeatable treatment though, and I haven't heard of anyone else developing type IV sensitivity from ME.

T2 (or iodine) prevented me from getting a level or two worse. Yes, another unique-to-me symptom and treatment, but how many of the other stories on your list are multiple successes?

Hipsman · Jun 25, 2020

Thank you Hip, I really like this list, it has so many important things that were scattered on this forum in one simple-to-follow list witch makes it much easier to follow and get an idea of what has helped others!

Hip · Jun 25, 2020

Wishful said:

Cumin has already been added to the ever-increasing list of PEM treatments in the PEM busters thread.

Wishful said:

How can you work out that a treatment prevented you from getting worse? It's reasonably straightforward to observe when a treatment substantially improves you, as you take the treatment, and you notice that you become much better. But how do you observe a treatment which prevents you from getting worse?

Wishful said:

Not many, unfortunately. The Valcyte and oxymatrine stories are multiple successes, as you can see in the above list that these worked well for several ME/CFS patients, who are individually detailed.

But I know that for example the C60 success story was not repeated on other patients, as in the C60 thread, lots of people tried this supplement, but very few responded.

However, some treatments may not have been tried by other ME/CFS patients, so we don't know whether they might benefit others. Treatments that may not have been tried by others include: low-dose oral interferon alpha, LL-37 plus BPC-157, and inosine plus DMAE. I am currently looking into testing all of those on myself.

Wishful · Jun 25, 2020

Hip said:

What happened was that I tried T2, found that it gave a reduction of symptom severity within hours, but taking it daily made it stop working. Weeks later, I abruptly felt worse, and T2 again brought me back to my earlier baseline. Over time, I found that I would keep dropping back to that worse baseline 21 days after the last dose, and a fresh dose would reset something for another 21 days.

Okay, it is hard to know for sure what was my proper baseline. I think I had been feeling worse that usual before the T2 discovery, so it brought me back to what had been my 'normal' ME, rather than the T2 making me feel better than I had been several months before.

Judee · Jun 25, 2020

@Hip, on the topic of Valcyte, are there any of those online pharmacies that carry it and if so, is it terribly expensive?

Edit: Also thanks for this post. Very helpful. Thank you for all you do at PR!!!

Hip · Jun 25, 2020

Judee said:

The cheapest are AllDayChemist and SafeGenericPharmacy, which sell generic Valcyte for around $7 per each 450 mg pill. Valcyte is normally around $70 per pill.

PatJ · Jun 26, 2020

Nice list. Thank you for compiling it.

Hip said:

@Johannes has seen good progress with red light therapy. Two posts detail the recent results of his progress: first and second.

Hip · Jun 26, 2020

PatJ said:

Thanks very much Pat, I shall investigate the Johannes story.

Hd-x · Jun 26, 2020

I was beddridden 2014-16 at activity level 2 because off postviral CFS and meanwhile activity level 5.
However so, the Bell scale didnt exactly reflect it.
For example in terms of strenght, I would be at activity level 10 but never got my old strenght + stamina back that I had bevor getting ill - so it isnt such a big jump. I also have till today endurance problems and even if I dont crash anymore that hard with PEM I get sore muscle pain from aerobic exercises (not from anaerobic exercises), a little bit a pain syndrom like SFN/Fibro sufferers are struggling around.
Otherwise the CFS flue like symptoms were from year to year less and my lymph nodes were up to 3.2cm in past, nowadays the biggest cervical lymph node 1.3cm.
Overall a good improvement compared to 2014/16 - but not a full recovery.

Some improvements with an ATP supp regime and Valtrex,
some other improvements by lowering increased Cytokine levels + shifting the Immune systeme away from the TH2 mode: https://forums.phoenixrising.me/thr...sine-inositol-cured.79178/page-2#post-2269201
Till today I try new drugs (that I hadnt tried bevore) and some off them gave me small further improvements (currenty Meldonium + Phencarol)

At last I cant track down all improvements to any single drug,
it was a combination off many things that includes besides conventional drugs treatments also things like learning auto-suggestion. A heavily modified S.H.I.N.E protocoll fits obvisiously as best to describe this kind off treatment course.

Littleantlers · Jun 26, 2020

This is great - thanks for putting it together. I seem to have cured my extreme severe light and noise sensitivity but I wish I could pin down what did it as I’d love to help others with the same issue. I can tolerate bright sunlight without glasses now, whereas for years I lived in complete darkness and couldn’t tolerate candlelight.

Hipsman · Jun 26, 2020

There seem to be some group of people that benefit from TVNS (Transcutaneous Vagus Nerve Stimulation), one s4me member told her story.
They use 700$ Parasym device, but simple 40$ TENS unit devices can be used too as these were used in many TVNS clinical trials over the years.
Me and several other members experienced some benefit while using TENS unit for TVNS, this thread has the most recent experiences with TVNS (this post about my improvements, @anne_likes_red's improvements), one important post here. There is well made instructions on how to do TVNS with TENS here.

Hip · Jun 26, 2020

Hipsman said:

Thanks very much, Hipsman, I'll investigate.

In ME/CFS patient treatment reports, it's useful to have some sort of objective quantification of improvement, so that the efficacy of the treatment can be gauged. Objective quantifications like: "before treatment X, I was rarely able to leave the house, but now I am able to do 1 mile walks daily".

There are hundreds of reports on this forum of very minor improvements obtained from various supplements, drugs or therapies; but I have usually omitted those. On this thread, I am more focused on treatments which have yielded a substantial benefit. Say as a minimum, a ¼-level gain on the ME/CFS scale of: very severe, severe, moderate, mild, remission.

Therapies that work for specific ME/CFS symptoms, though, you cannot really use that ME/CFS scale to gauge efficacy; but if someone reports that a treatment substantially reduces a particular symptom, that is of interest.

Yuno · Jun 27, 2020

https://www.actionforme.org.uk/asse...nts/2/6193/nimodipine use in me, jan 2014.pdf

great list @Hip! I just remembered susan Parker’s document on nimodipine. she and others recovered on it and peter rowes paper on stenosis with 3 women recovering after surgery.

Hipsman · Jun 27, 2020

Hip said:

This strategy makes a lot of sense, I like it.

I haven't found any stories of people achieving ¼-level gain with TaVNS (on ear) on PR or healthrising.

Lorita achieved some improvement with Gammacore, but I don't know if it would translate to at least ¼-level gain, so it may be better to leave TVNS out for now.

JenB · Jun 30, 2020

There are a lot more CCI/tethered cord people. Do they need to be members of PR?

pattismith · Jun 30, 2020

Hip said:

I plan to add Inosine/DMAE to my methylprednisolone treatment, did you already open a thread where we can document Inosine/DMAE trials?

Pauline91 · Jun 30, 2020

Thank you Hip ! Great job

Regarding cavitations:

This might be misleading, I have cavitations (diagnosed with a Cone Beam) but I have zero pain locally, I could apply pressure everywhere on my jawbone and don't find anything suspicious.

List of ME/CFS Recovery and Improvement Stories

Hip

Senior Member

sb4

Senior Member

Wolfcub

Moderator

Wishful

Senior Member

Hipsman

Senior Member

Hip

Senior Member

Wishful

Senior Member

Judee

Senior Member

Hip

Senior Member

PatJ

Forum Support Assistant

Hip

Senior Member

Hd-x

Senior Member

Littleantlers

Hipsman

Senior Member

Hip

Senior Member

Yuno

Hipsman

Senior Member

JenB

Senior Member

pattismith

Senior Member

Pauline91