Mini Roadmap
For ME/CFS Testing and Treatment
Introduction to the Mini Roadmap
The full ME/CFS roadmap is quite lengthy, so you might like to
begin with this mini roadmap instead. This mini roadmap summarizes some of the more important tests and treatments
for chronic fatigue syndrome (ME/CFS). The treatments detailed are those employed by leading ME/CFS specialist
doctors, or are treatments backed up by studies.ME/CFS is linked to chronic active infections with certain enteroviruses (namely coxsackievirus B and echovirus) and certain herpesviruses (mainly Epstein-Barr virus, HHV-6 and cytomegalovirus). Studies have shown that antiviral treatment for ME/CFS can sometimes make major improvements, but treatment depends on which viral infections you have, thus viral testing is normally advised. The appropriate tests for each virus as well as the appropriate treatments are detailed below.
The chronic active viral infections found in ME/CFS are likely not the same as normal active infections: studies have found some ME/CFS patients have non-cytolytic enterovirus infecting their tissues. And according to one (unproven) theory, some ME/CFS patients may have abortive herpesvirus infections in their body tissues. Both are unusual types of infection that do not produce many regular viral particles, and this may explain why not much virus is found in the blood in ME/CFS when PCR tests are used.
ME/CFS treatments that do not directly target infections and which sometimes help include: low-dose naltrexone (LDN), vitamin B12 injections, and low-dose Abilify, which are are detailed below.
Note that many symptoms of ME/CFS are also found in other diseases such as hypothyroidism, celiac disease, lupus, anemia, hepatitis B or C, Lyme disease and others. So before you go ahead with any ME/CFS treatment, you and your doctor may like to run some tests to rule out these other diseases, to ensure you have ME/CFS and not some other illness.
Note that nothing in this roadmap should be construed as medical advice. Only you and your doctor can decide which treatments are appropriate for you.
Testing for Common Possible Causal Factors of ME/CFS
In the table below, the left hand column lists the possible causal factors (such as infections) that may be
involved in your ME/CFS; the middle column details the recommended medical tests for these causal factors, and
explains how to interpret the test results; in the case of a positive test result, the right hand column itemizes
the therapies that can be effective for treating ME/CFS patients who are positive for that causal factor.In this document, the effectiveness of each therapy is indicated by the terms substantial and major. This is in order to indicate what degree of improvement the treatment may provide if it works for you. We define a major improvement as one which moves a patient up by one level on the ME/CFS severity scale of: very severe, severe, moderate, mild and remission. For example, if after treatment a patient moves up from severe to moderate, that one-level improvement is classed as major. If the health improvement is less than major, but nevertheless clearly noticeable, we define that as a substantial improvement.
| Causal Factor |
| Lab Tests and Results Interpretation |
| Treatment |
Coxsackievirus B and echovirus
An active infection with either of these two enteroviruses may be a causal factor in ME/CFS.
Go to full roadmap
An active infection with either of these two enteroviruses may be a causal factor in ME/CFS.
Go to full roadmap
Antibody titers of 1:160 to 1:320 and higher in the ARUP Lab coxsackievirus
B and echovirus antibody blood tests by the
neutralization method indicate active infection, says Dr Chia.
Alternatively, a positive result in a stomach biopsy test, when the biopsy tissues are sent for testing to Dr Chia's lab indicates active infection.
Alternatively, a positive result in a stomach biopsy test, when the biopsy tissues are sent for testing to Dr Chia's lab indicates active infection.
Oxymatrine results in major improvements in some ME/CFS patients with enterovirus
infection after around 2 months.
Lamivudine (Epivir) 150 mg twice daily results in substantial benefits for 1 in 3 patients after a few months.
Tenofovir (Viread) 300 mg daily results in benefits for about 1 in 3 patients after around 3 months. Major improvements possible.
Lamivudine (Epivir) 150 mg twice daily results in substantial benefits for 1 in 3 patients after a few months.
Tenofovir (Viread) 300 mg daily results in benefits for about 1 in 3 patients after around 3 months. Major improvements possible.
High antibody levels in the VCA IgM test and/or the EA IgG diffuse test indicate active EBV
infection, says Dr Lerner.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Valacyclovir (Valtrex) 1,000 mg four times daily benefits 75% of ME/CFS patients
with EBV after 3.5 months; full benefits only appear after 2 years treatment. Major improvements possible.
Famciclovir (Famvir) 1,000 mg four times daily can be used instead of Valtrex with similar results when patients experience side effects from Valtrex.
Valganciclovir (Valcyte) 450 mg twice daily is also effective for EBV.
Famciclovir (Famvir) 1,000 mg four times daily can be used instead of Valtrex with similar results when patients experience side effects from Valtrex.
Valganciclovir (Valcyte) 450 mg twice daily is also effective for EBV.
Having both high IgM antibodies and high IgG antibodies indicates
active HHV-6 infection in ME/CFS, says Dr Lerner.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Valganciclovir (Valcyte) 450 mg twice daily benefits 75% of ME/CFS patients with
HHV-6 infection after 6 months; full benefits only appear after 2 years treatment. Major improvements
possible.
SARS-CoV-2 Coronavirus
An active infection with SARS-CoV-2 may be a causal factor in long COVID ME/CFS.
Go to full roadmap
An active infection with SARS-CoV-2 may be a causal factor in long COVID ME/CFS.
Go to full roadmap
High IgG antibodies for SARS-CoV-2 may indicate an active infection.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Lactoferrin can be effective for long COVID.
Antihistamines can be effective for long COVID.
COVID vaccination can improve long COVID.
Antihistamines can be effective for long COVID.
COVID vaccination can improve long COVID.
High IgG antibodies for CMV indicate an active infection, says Dr Lerner.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Valganciclovir (Valcyte) 450 mg twice daily benefits 75% of ME/CFS patients with
cytomegalovirus after 6 months; full benefits only appear after 2 years treatment. Major improvements
possible.
Positive PCR or high IgM antibody levels for parvovirus B19 indicate
an active PB19 infection, says Dr Chia.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Intravenous immunoglobulin (IVIG) may fully cure parvovirus B19 ME/CFS.
Varicella zoster virus
A reactivated infection with VZV may be a causal factor in ME/CFS.
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A reactivated infection with VZV may be a causal factor in ME/CFS.
Go to full roadmap
The presence of a shingles
rash provides an accurate diagnosis of reactivated VZV. Even just one or two shingles blisters can
indicate VZV reactivation.
A shingles rash only appears on one side of the body, and is confined to a strip or a small area. The most common locations for a shingles rash are shown here.
A shingles rash only appears on one side of the body, and is confined to a strip or a small area. The most common locations for a shingles rash are shown here.
Valacyclovir (Valtrex) 1,000 mg three times daily for 3 weeks. Major improvements or
full remissions possible.
VZV ME/CFS improves remarkably quickly on antivirals, within weeks. By contrast, it takes a year or two on antivirals to achieve major improvements in ME/CFS linked to other herpesviruses.
VZV ME/CFS improves remarkably quickly on antivirals, within weeks. By contrast, it takes a year or two on antivirals to achieve major improvements in ME/CFS linked to other herpesviruses.
Chlamydia pneumoniae
A reactivated infection with Cpn may be a causal factor in ME/CFS.
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A reactivated infection with Cpn may be a causal factor in ME/CFS.
Go to full roadmap
High IgG antibody levels indicate an active chronic Cpn infection; but not all patients
with active Cpn have high IgG levels, says Dr Chia.
It is suggested high = levels at least 16 times the lab reference for negative.
It is suggested high = levels at least 16 times the lab reference for negative.
Azithromycin 250 mg daily for one or two months. Major improvements possible.
Mold toxins
Mycotoxins from mold growths are linked to ME/CFS and also cause the disease CIRS.
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Mycotoxins from mold growths are linked to ME/CFS and also cause the disease CIRS.
Go to full roadmap
A simple free online visual contrast sensitivity test can be used
as a starting point to help diagnose mold illness (takes about 5 minutes to complete).
Inspect you environment for mold growths (in the home or workplace mold can be visible, or may be hidden behind walls and domestic appliances).
If your home was water-damaged in recent years, you may have mold growth.
Inspect you environment for mold growths (in the home or workplace mold can be visible, or may be hidden behind walls and domestic appliances).
If your home was water-damaged in recent years, you may have mold growth.
Shoemaker protocol. Dr Ritchie Shoemaker developed an 11
step protocol for treating mold or biotoxin-induced illness. The first step removes the source of toxic
mold, the next step involves using cholestyramine to detoxify mycotoxins from the body.
Dr Shoemaker calls the illness precipitated by mold or biotoxins the chronic inflammatory response syndrome (CIRS). CIRS can be considered a distinct disease from ME/CFS, and although the symptoms of these two diseases are similar, CIRS has its own treatment, the 11 step protocol. Some patients may have a combination of CIRS and ME/CFS.
Dr Shoemaker calls the illness precipitated by mold or biotoxins the chronic inflammatory response syndrome (CIRS). CIRS can be considered a distinct disease from ME/CFS, and although the symptoms of these two diseases are similar, CIRS has its own treatment, the 11 step protocol. Some patients may have a combination of CIRS and ME/CFS.
General Therapies for ME/CFS
This section details some ME/CFS treatments for which there are no specific tests, but these treatments may be
tried out to see if they result in improvements in ME/CFS symptoms.| Low-dose naltrexone (LDN). A low 3 to 4.5 mg dose of naltrexone daily before bed can in result in significant and sometimes major improvements in ME/CFS symptoms. LDN helps only around 10% to 20% of ME/CFS patients, but when it does help, it provides a valuable improvement in health. Go to full roadmap. |
| Vitamin B12 injections. Some ME/CFS patients find that high-dose vitamin B12 injections substantially reduce their brain fog and fatigue. Recommended forms of B12 are methylcobalamin, adenosylcobalamin or hydroxocobalamin (first two are the active forms). Transdermal B12 oils are a viable and easier alternative to injections. Go to full roadmap. |
| Methylation protocol. This involves taking vitamin B12 2000 mcg sublingually, methylfolate 200 mcg, folinic acid 200 mcg, lecithin 1200 mg daily. The first benefits appear around the 6 week stage. Go to full roadmap. |
| Pyridostigmine at around 45 mg x 3 times daily can prevent or greatly reduce PEM in some patients, and generally improve ME/CFS. Other potential PEM preventers are listed in this thread. Go to full roadmap. |
| High-dose thiamine (vitamin B1) at 200 to 1500 mg daily can improve fatigue, PEM and brain fog. Go to full roadmap. |
| Low-dose Abilify (aripiprazole) from 0.2 to 2.0 mg daily can improve ME/CFS. Go to full roadmap. |
For other generally useful therapies for ME/CFS, see the General Therapies section in the full roadmap.
Other Factors Which May Contribute to ME/CFS
In the full roadmap, many more factors and medical conditions which may cause or contribute to your ME/CFS
symptoms are detailed. These include:In the Comorbid Diseases section: intestinal dysbiosis, leaky gut, IBS, SIBO, bacterial dysbiosis in the kidneys, allergies, food intolerance, MCAS, low T3 syndrome, POTS, NMH, and OH.
In the Less Common Infections section: herpes simplex virus, HHV-7, Coxiella burnetii, Giardia lamblia, Mycoplasma, Bartonella, Babesia, Brucella, West Nile virus, and Ross River virus.
In the Rarer Causes or Contributory Factors section: vaccination, physical trauma, craniocervical instability, temporomandibular joint dysfunction, jaw bone cavitation infection, sinusitis, meningitis, Toxoplasma gondii, silicone breast implant leakage, pesticide exposure, ciguatoxin exposure, tung oil, radiotherapy or chemotherapy, ionizing radiation, emotional/psychological stress, corticosteroids given during acute viral infection, blood transfusion trigger, and lymph fluid stagnation.