List of ME/CFS Recovery and Improvement Stories

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This page lists ME/CFS recovery and 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 improved specific ME/CFS symptoms like PEM, fatigue, brain fog, sound sensitivity, emotional or stress sensitivity, gut health, the 'wired but tired' mental state, anxiety, depression, headaches, sleep, pain, 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.

Note though that the improvements detailed on this page are hard to come by: many ME/CFS patients try exactly the same treatments listed here, but find the treatments unfortunately do not work for them. It is common to find that a treatment which helps one ME/CFS patient does not help the next patient.


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.

Protocols for the treatments below are detailed in the ME/CFS Roadmap for Testing and Treatment.

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ME/CFS Recovery and Improvement Stories

Valcyte (Valganciclovir) Antiviral Drug for Herpes Family Viruses

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.​

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• 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).​

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• 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.​

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

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

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

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• 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.​

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• 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.​

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• 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.​

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

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• 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.​

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• 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 for EBV

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.​

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

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• 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 and Valcyte in Combination

Some ME/CFS patients tried both these antivirals 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.​

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• 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.​

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• 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 — 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.​

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• ME/CFS patient (Sandman00747) 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.​

Antiretroviral Combinations (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

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• 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.​

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

Sofosbuvir — Antiviral Drug

Sofosbuvir is an antiviral used to treat hepatitis C infection, but has been shown to have some effect against SARS-CoV-2 in vivo.

• Long COVID ME/CFS patient (Warm_Camera_7052) goes into remission after 3 weeks on the antiviral sofosbuvir.​

Spironolactone

Spironolactone is a diuretic drug, which is also prescribed for high blood pressure and edema (fluid retention). A study found 31% of EBV ME/CFS patients achieved full remission on spironolactone 25 mg daily. Spironolactone was shown to have antiviral effects in vitro against EBV, but it would not appear to be antiviral in vivo, see this post.

• ME/CFS patient (Caribjdc) with mild ME/CFS improved on spironolactone 25 mg daily.​

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• ME/CFS patient (pcmenten) improved on spironolactone 25 mg twice daily. He said his "brain fog cleared, and my energy levels are much better. The unexplained fevers have stopped". A few months later he discontinued the spironolactone, but found the benefits on cognition and energy remained.​

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• ME/CFS patient (Rrrr) improved on spironolactone 25 mg daily, later reduced to just 12.5 mg daily, finding this reduced her brain fog, and gave her more energy and stamina.​

Ampligen — Interferon Inducer

Ampligen (rintatolimod) is an interferon inducer which stimulates the immune system to fight viral infections. Ampligen has been shown efficacious for ME/CFS in a phase III clinical trial. Ampligen is licensed as an ME/CFS treatment in Argentina, but not in the US or Europe, so is difficult to obtain, and not normally covered by insurance. Ampligen is expensive, costing around $15,000 a year (excluding the medical costs of the infusions). Ampligen is administered by intravenous infusion twice a week.

• ME/CFS patient (Kelvin Lord) after a year on Ampligen infusions went from severe ME/CFS ("I was barely able to get out of bed") to mild (2-level gain) ME/CFS. He said "Ampligen makes you feel like you have the flu twice a week. The reality is when you are on it, it is pretty much hell. Hell with hope". See his Ampligen blogs here.​

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• ME/CFS patient (niall) improved "by 30%" after a course of Ampligen.​

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• ME/CFS patient (LaurelW) was on Ampligen for 7 years, improved from severe to moderate (1-level gain), and maintained their gains in health even after stopping Ampligen.​

Some other Ampligen stories here.



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).​

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

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

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

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• ME/CFS patient (abdul1436) severe ME/CFS who could not speak, walk, and slept 17 -20 hours a day went into remission (3-level gain) after 5 months on oxymatrine plus inosine, dihydroquercetin and quercetin.​

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.​

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• 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?​

How can we explain that this patient was cured using such low doses of oral interferon, when the normal injected dose is typically 3 million IU? Hard to say, but this study says: "multiple reports have claimed that low-dose orally administered interferon (IFN)-α is beneficial in the treatment of many infectious diseases and provides a viable alternative to high-dose intramuscular treatment.".



Pridgen Antiviral Protocol (Famvir and 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.​

Lactoferrin

Lactoferrin is a protein found in mother's milk which has immunomodulatory, antibacterial, antiviral and antifungal properties.

• Lots of long COVID patients reporting major improvements with lactoferrin.​

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).​

• ME/CFS patient (jmd82) rapidly obtained a 1-level gain moving from moderate to mild by taking selenomethionine 400 mcg once daily.​

Low-Dose Abilify

The Open Medicine Foundation are currently running a clinical trial to determine whether low doses of the drug Abilify (aripiprazole) can benefit ME/CFS. Trial results are not yet available, but several ME/CFS patients have found Abilify in doses of around 0.1 to 2.5 mg daily rapidly leads to major improvements in their ME/CFS symptoms. However, many patients who obtain benefits from Ability report that it stops working for them after some months. An Abilify for ME/CFS Facebook group here.

• ME/CFS patient (Martin aka paused||M.E.) moved from very severe to moderate (2-level gain) after two months on Abilify 4 mg daily (plus LDN and Celebrex).​

• ME/CFS patient (Jaybee00) moved from moderate to mild (1-level gain) after 6 weeks on Abilify 2 mg daily. He noticed improvements began to manifest after a week or so.​

• ME/CFS patient (Butydoc) moved from severe to moderate (1-level gain) within a matter of weeks on 0.2 mg of Abilify daily.​

• ME/CFS patient (Jessie 107) improved on 2.5 mg Abilify daily. She said she did not notice much improvement until she reached the 2 mg daily dose level.​

• ME/CFS patient (erist) back in 2012 took 0.5 mg to 1 mg Abilify daily, and found more energy, more appetite, much easier time getting up in the morning, but also restless agitation.​

Low-Dose Naltrexone (LDN)

The drug naltrexone at a low dose of 3 to 4.5 mg daily before bed, can have positive effects for ME/CFS as well as autoimmune and neurodegenerative diseases. Dr John Chia finds LDN helps only 10% to 20% of ME/CFS patients, but for those it helps, it does so significantly. Refs: 1 2

• ME/CFS patient (Maija Haavisto) found LDN had immediate benefits, improving fatigue and muscle weakness, making PEM episodes rarer and milder, and almost eliminating her chronic fever and chronic urticaria symptoms (see "My Own Perspective" section in the link).​

High-Dose Thiamine (Vitamin B1)

Many ME/CFS patients have reported that high doses of thiamine, in the range of 200 to 1500 mg daily, substantially improves their fatigue, post-exertional malaise and brain fog. A study also noted similar benefits for ME/CFS from high dose thiamine.



Rapamycin — Immunomodulator

Rapamycin (Sirolimus, Rapamune) 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.​

Nimodipine — Calcium Channel Blocker

Nimodipine is a calcium channel blocker which increases blood flow to the brain. Dr David Mason Brown says nimodipine helps 20% of ME/CFS patients quickly, and another 20% over six months. The Mason Brown protocol begins with a nimodipine dose of 7.5 mg per day. The dose is slowly increased by 7.5 mg each week, up to a maximum dose of 120 mg daily. Nimodipine has many drug interactions.

• ME/CFS patient — with severe ME/CFS became very mild (2-level gain) on 90 mg of nimodipine daily (30 mg taken three times daily). This patient has maintained his improvement in health for 7 years without relapse. However, every time he reduces his nimodipine dose, his ME/CFS gets worse again. He finds the minimum dose that produces some benefits is 45 mg daily; but it is not until he increases the dose to 90 mg daily does he get the full benefits​

Cinnarizine — Antihistamine and Calcium Channel Blocker

Cinnarizine is an over-the-counter antihistamine and calcium channel blocker. Calcium channel blockers like nimodipine have also been found effective for ME/CFS.

• ME/CFS patient (GloriaDG) with moderate ME/CFS which appeared after catching dengue virus (a virus known to cause an ME/CFS-like illness) moved to near remission (2-level gain) after starting cinnarizine, 12.5 mg twice daily. She found the effects of cinnarizine kicked in very fast, within a few hours. See also Gloria's comment at the bottom of this article.​

• ME/CFS patient (D.Rabbie) with moderate long COVID ME/CFS which appeared after catching the SARS-CoV-2 coronavirus found that cinnarizine 25 mg + heptaminol 150 mg daily made substantial improvements to mental fatigue.​

Tagamet (Cimetidine) — H2 Antihistamine

Tagamet is an H2 antihistamine that has immunomodulatory properties: it boosts NK cell activity, and reduces T-regs (doing the latter may not be a good idea in autoimmunity or in those with organ transplants).

Tagamet is a known testicular toxicant, but vitamin B12 helps mitigate this damage. Ref: 1. Tagamet has a lot of interactions with other drugs, so you may like to consult a drug interactions checker to check if it interacts with any drugs you are taking.

• ME/CFS patient (faith.hope.love) took Tagamet 200 mg every other day, and was able to go back to work.​

Diamine Oxidase Supplement

Diamine oxidase is 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 Daosin brand of diamine oxidase.​

Low-Histamine Diet

This diet involves avoiding or limiting foods containing high levels of histamine. The most reliable list of high and low histamine foods comes from SIGHI.

• Long COVID patient (Due-Nectarine6141) with moderate ME/CFS obtained a state of near remission (1½-level gain) after following a low-histamine diet for a month.​

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• Long COVID patient (jennjenn1234567) started feeling better within 3 days of started a low-histamine diet, and eventually reached near remission after a few months.​

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). But later he said he found it hard to sustain the diet long-term, and found the diet did not prevent crashes when he tried to live a regular life, so currently he is back to bedbound.​

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.​

• ME/CFS patient (Henrik) went from moderate to mild (1-level gain) using helminthic therapy with Necator americanus.​

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Several more ME/CFS recovery and improvement stories from Necator americanus detailed here.



Kambo — Amazonian Medicine

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). Kambo is used as a medicine by Amazonian Indians.

• 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.​

Bowel Flush With Colonoscopy Prep Laxative

Colonoscopy prep is a drink with strong laxative properties that flushes out a patient's intestines in preparation for a colonoscopy examination of the colon. The MoviPrep colonoscopy prep product contains laxatives such as sodium sulfate, polyethylene glycol and high-dose vitamin C. Other Other effective and well-tolerated colonoscopy prep drinks are: Miralax and Suprep, it says here.

• ME/CFS patient (EddieB) with severe ME/CFS attained a state of near remission (which lasted for many months) after a colonoscopy prep (a 3-level gain). Within a few days after the prep, his ME/CFS symptoms started to improve, and after a few weeks, he was in near remission. This remission occurred twice, with two different colonoscopy preps he had in his life.​

High-Dose Progesterone

Progesterone is a hormone involved in the the menstrual cycle and pregnancy.

• ME/CFS patient (superboreduniverse) experienced a full remission during pregnancy, which lasted for 4 years, until a vaccination re-triggered severe ME/CFS. She then experimented with taking 200 mg progesterone (a pregnancy hormone) three times daily, and after a few months her ME/CFS improved to the mild level (2-level gain). She found she can go as low as 100 mg three time daily and still maintain the benefits, but any lower and she starts getting worse.​

Photobiomodulation / Low-Level Laser Therapy / LED Light Therapy

Photobiomodulation therapy uses red or near 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. When applying photobiomodulation therapy, note that too high a light dose can reverse the benefits, so there is an optimal dose around 5 J/cm², which depends on the power of the light and the distance from it: see this post.

• 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.​

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• 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 reusable antioxidant. Ref: 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 Blood Electrifier

• ME/CFS patient (intheknow) with moderate ME/CFS recovered after 90 hours of treatment with a Bob Beck blood 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.​

Atorvastatin — Statin Drug

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

Mitochondrial Supplement 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 and 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.​

ATP Injections

Adenosine triphosphate (ATP) is the body's primary energy molecule created by mitochondria.

• ME/CFS patient (Keshav) rapidly improved in a matter of days from ATP injections.​

High-Dose Sublingual Biotin

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

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

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

Inosine and DMAE (Homemade Imunovir)

According to a ME/CFS patient blog article (now deleted), mixing inosine and DMAE together creates a compound equivalent to the antiviral drug Imunovir (isoprinosine). To create home-made Imunovir, as this post details, you simply take equal weights of these two supplements (eg, DMAE 500 mg plus inosine 500 mg). The two supplements will combine in the stomach to make the molecular complex that is Imunovir.

Note however that many ME/CFS patients cannot tolerate Imunovir, and some report getting permanently worse from it: see this thread and this thread.

• 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.​

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.​

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

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• 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).​

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

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• 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.​

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• 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.​

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

Tricyclic Antidepressants

Tricyclic (TCA) antidepressants like amitriptyline and imipramine 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.​

SSRI Antidepressants

Selective serotonin reuptake inhibitor (SSRI) antidepressants include: Prozac (fluoxetine), Celexa (citalopram), Zoloft (sertraline), Paxil (paroxetine) and Lexapro (escitalopram). Interestingly, in the 1990s and early 2000s, two British doctors were using Prozac or Zoloft to bring ME/CFS patients into remission: see this post.

Note that fluoxetine has antiviral effects against enterovirus infections in the brain, refs: 1 2 3. Free fluoxetine concentrates in brain at levels 500 times higher than blood levels, so fluoxetine may not have any antiviral effects in the rest of the body. But Dr Chia has not reported much success in his experiments treating enterovirus ME/CFS patients with fluoxetine, see this post.

• ME/CFS patient (Blazer95) found that the SSRI drug citalopram moved him from moderate-severe to moderate (½-level gain).​

Mild Hyperbaric Oxygen Therapy

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.​

IgY Immunoglobulins From Chicken Eggs

IgY is a type of immunoglobulin found in bird species.

• ME/CFS patient (Maj-Britt) a Swedish women cured her Chlamydia pneumoniae-associated ME/CFS with a simple home treatment consisting of orally consuming IgY antibodies from a chicken egg yolk. She injected the chicken with her blood, so the chicken started making antibodies against the infections in her blood. Those chicken antibodies are naturally produced in large quantities in the eggs the chicken lays.​

Yoga Exercises

Yoga is believed 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.​

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• 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.​

Perrin Technique — Lymph Fluid Massage

Dr Raymond Perrin is an osteopath who believes ME/CFS is due to stagnant or blocked lymph flow, resulting in poor detoxification of toxic products (such as bacterial toxins) from the body. His therapy for ME/CFS involves special massage techniques and spinal manipulations which stimulate lymph flow.

• ME/CFS patient (daughter of Celandine) with moderate to severe ME/CFS recovered through the Perrin technique (2½-level gain). She was taught to perform a gentle breast massage at home (the breast area is where Perrin finds lots of lymph blockages in ME/CFS patients), and each time she massaged her breasts, just 8 strokes on each side was enough to cause a crash. But eventually she was able to do the massage without crashing, as the toxins slowly cleared. See this post for a fuller description.​

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Moving to Hot 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.​

Active Prism Lenses To Treat Proprioception Dysfunction

Proprioception is a bodily sense deriving from receptors in our muscles which (without any visual clues) informs the brain of the current position of your limbs. People with poor proprioception find it hard to know where their limbs are, unless they look visually. One study observed a rapid recovery from severe ME/CFS after treating proprioception dysfunction with active prism lenses.

• ME/CFS patient (Donsboig) moved from severe to moderate (1-level gain) using active prism lenses to treat his proprioception dysfunction.​

Dr Greg Russell-Jones's Transdermal B12 Oils

Vitamin B12 in high doses is a traditional treatment of ME/CFS.

• ME/CFS patient (Johnmac) with mild ME/CFS went into near remission (½-level gain) using the B12 transdermal oils formulated by Dr Greg Russell-Jones in Australia.​

High-Dose Whey Protein and High-Dose Zinc Combo

Whey protein can help make albumen in the blood that transports zinc.

• ME/CFS patient (Content_Insurance220) found that an easily-digestible protein such as whey protein in a dose of up to 200 grams daily, in combination with zinc 25 to 100 mg daily, completely eliminated his "horrible paralysing dehumanising fatigue". He noticed improvements within one or two days of starting this protocol.​

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Improving Post-Exertional Malaise (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, cumin (Cuminum cyminum), D-ribose, BCAA, Q10 and sodium bicarbonate.

Prednisolone

Prednisolone is a corticosteroid drug which suppresses the immune response.

• 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

Cannabis is a recreational drug which also has medicinal uses.

• 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.​

Pyridostigmine

Pyridostigmine (Mestinon) is a acetylcholinesterase inhibitor drug that stimulates the parasympathetic nervous system (the "rest and digest" nervous system) by inhibiting an enzyme called acetylcholinesterase. This poll asks ME/CFS patients whether Mestinon improved or worsened their symptoms (most patients said improved).

• 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).​

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• 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.​

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• ME/CFS patient (batty_ash03) with moderate to severe ME/CFS became mild (1½ level gain) after starting Mestinon 45mg three times daily.​

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Cumin

Cumin is a kitchen spice made from the dried seeds of the plant Cuminum cyminum. Cumin contains a compound called cuminaldehyde, which has known mitochondrial effects. Cumin is not to be confused with black cumin (Nigella sativa), which is a different species entirely.

• ME/CFS patient (wishful) finds a level teaspoon of ground cumin prevents him from getting PEM after physical exertion. He finds the anti-PEM effects of this dose of cumin last for 3 days before wearing off. Wishful started a thread on cumin as a PEM buster. Wishful said cumin would start reducing existing PEM within hours, and would work just as well when held in his mouth (sublingual absorption) for a few minutes and then spat out.​

• ME/CFS patient (Elike) finds cumin tea prevents him from getting PEM.​

• ME/CFS patient (seamyb) finds ground cumin not only prevents PEM, but also increases energy. Though he finds the benefits wear off after just one day, so he has to take it daily.​

• ME/CFS patient (Greenplum) finds one teaspoon of cumin every three days helps reduce PEM.​

• ME/CFS patient (Aspen) finds one teaspoon of cumin taken every 1 or 2 days reduces PEM by about 50%.​

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Improving Energy Levels

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.​

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Improving Brain Fog

Vitamin B12 Injections, or Equivalently Dr Greg Russell-Jones Transdermal B12 Oils

Vitamin B12 in high doses is a traditional treatment of ME/CFS.

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

Piracetam

Piracetam is from a class of drugs and supplements known as nootropics (aka smart drugs), which improve cognition and intelligence.

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

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Improving Sound or Light Sensitivity

Very Low-Dose Amisulpride

Amisulpride is a dopamine system stabiliser drug and third generation antipsychotic.

• 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.​

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Improving Emotional or Stress Sensitivity

Vitamin B5

Vitamin B5 is known as an anti-stress vitamin.

• ME/CFS patient (Hip) found that vitamin B5 at 500 mg twice daily substantially reduces the emotional sensitivity / stress sensitivity symptom of ME/CFS.​

Hydrogen-Rich Water

Hydrogen-rich water is water in which hydrogen gas has been dissolved. HRW known to stimulate the release of the hormone ghrelin, which in turn stimulates the hypothalamus, an area of the brain that controls emotions and the stress response. Fizzy tablets which you drop into a glass of water to make HRW can be bought from supplement stores.

• ME/CFS patient (Hip) found hydrogen-rich water also noticeably reduces his emotional and stress sensitivity symptom.​

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Improving Gut Health, IBS and SIBO

Chloramine Avoidance

Chloramine is a disinfectant added to the drinking water in some regions in addition to chlorine. 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. But 10 mg of vitamin C will neutralise the chloramine in a litre of drinking water.

• 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 neutralises the chloramine.​

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Improving the 'Wired But Tired' Hyperarousal of ME/CFS

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

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Treating Anxiety

N-Acetyl Glucosamine (NAG)

N-acetyl glucosamine is a supplement related to glucosamine, but the addition of the acetyl molecule allows its to penetrate the blood-brain barrier.

• 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.​

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Treating Depression

Saffron

Saffron is a spice derived from the flower of Crocus sativus.

• 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.​

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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.​

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Improving Sleep

Cannabidiol (CBD) Oil

Cannabidiol (CBD) is found in Cannabis, but does not produce a high.

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

Melatonin

Melatonin is a hormone made by the body to induce sleep, and is also locally produced in cells for antioxidant purposes.

• 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), and stops his non-24 (where you keep going to bed later and later as the days progress).​

Squats Exercise

Squats are an exercise that target the gluteal muscles and thigh muscles.

• ME/CFS patient (Hip) finds when you are go to bed but find you are still awake an hour or so later, and cannot get to sleep, getting out of bed and performing 80 squats in rapid succession (which takes about 80 seconds) in order to exhaust the leg muscles and generate some lactate, is a remarkably effective way (almost infallible) of getting to sleep. After performing the squats and going back to be, he finds he then goes to sleep within 5 minutes.​

Luminette blue light glasses

Blue light glasses shine blue light into the eyes.

• ME/CFS patient (SpiralOut) finds when using Luminette blue light glasses for several hours daily, which provide the equivalent of 10,000 lux of light to the eyes, it completely fixes his non-24 sleep issues (non-24 is where each day you go to bed later than the day before, because your circadian rhythm does not match the normal daily 24 hour cycle).​

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Relieving the Bodily Pain of ME/CFS

Low-Dose Naltrexone (LDN)

Naltrexone is a drug which blocks the mu-opioid receptor which is involved in pain signalling.

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

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Improving the 'Molasses' Heavy Limbs Feeling

Far Infrared Heat

Far infrared radiation is produced by heat lamps and ceramic infrared bulbs.

• 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).​

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[sb4]

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

 

[Wolfcub]

Yes, thank you @Hip This is an excellent list

 

[Wishful]

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]

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]

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

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

T2 (or iodine) prevented me from getting a level or two worse.

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?

how many of the other stories on your list are multiple successes?

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]

How can you work out that a treatment prevented you from getting worse?

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]

@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]

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

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]

Nice list. Thank you for compiling it.

Low-Level Laser Therapy / LED Light Therapy

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

 

[Hip]

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

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

 

[Hd-x]

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.

 

[splusholia]

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]

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]

There seem to be some group of people that benefit from TVNS (Transcutaneous Vagus Nerve Stimulation),

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]

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]

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.

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.

My update is similar to Cort's with the Cerbomed, ie I had a big improvement straight away, for me around 20-30% but after a few months it's tapered off to 10-20% improvement over prolonged use.

 

[JenB]

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

 

[pattismith]

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.

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

 

[Pauline91]

Thank you Hip ! Great job
Regarding cavitations:

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

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.