Mini Roadmap

For ME/CFS Testing and Treatment





Introduction to the Mini Roadmap
Because the full ME/CFS roadmap document is quite lengthy, you may like to begin with this mini roadmap, which summarizes some of the more important tests and efficacious treatments for chronic fatigue syndrome (ME/CFS). These tests and treatments are those generally employed by leading ME/CFS specialist doctors, and those backed up by published studies or informal 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 make major improvements, but treatment depends on which active 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: evidence shows that ME/CFS patients have non-cytolytic enterovirus infecting their tissues. And according to one (unproven) theory, ME/CFS patients may have abortive herpesvirus infections in their body tissues. Both are unusual types of infection that do not produce 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 include low-dose naltrexone (LDN) and vitamin B12 injections, 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 many others. So before you go ahead with these ME/CFS treatments, you and your doctor need to run some tests to rule out these other diseases, to ensure that you do have ME/CFS and not some other illness.



Testing for Common Possible Causal Factors of ME/CFS
In the table below, the left hand column lists the 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 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 where a patient moves 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. It is feasible for ME/CFS patients to achieve a major amelioration in health level via treatment, though you are more likely to obtain a substantial improvement rather than a major 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
Antibody titers of 1:160 to 1:320 and higher in the ARUP Lab coxsackievirus B and echovirus antibody neutralization blood tests 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.
Oxymatrine (Equilibrant) 300 mg x 6 daily 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 are possible.
Epstein-Barr virus

An active EBV infection may underpin ME/CFS.

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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.

VCA IgM: LabCorp, Quest.
EA IgG diffuse: LabCorp, Quest.



 
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 are 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.
HHV-6

An active infection with HHV-6 virus may be a causal factor in ME/CFS.

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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.

IgM tests: LabCorp.
IgG tests: LabCorp.
IgM/IgG tests: Quest.
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 are common.
Cytomegalovirus

An active infection with CMV may be a causal factor in ME/CFS.

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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.

IgG tests: LabCorp, Quest.
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 are common.
Parvovirus B19

An active infection with PB19 may be a causal factor in ME/CFS.

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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.

PCR tests: LabCorp, Quest.
IgM tests: LabCorp, Quest.
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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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.
Valacyclovir (Valtrex) 1,000 mg three times daily for 3 weeks. Major improvements or full remissions are 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 EBV, HHV-6 or CMV.
Chlamydia pneumoniae

A reactivated infection with Cpn may be a causal factor in ME/CFS.

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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.

IgG tests: LabCorp, Quest.
Azithromycin 250 mg daily for one or two months. Major improvements are common.
Mold toxins

Mycotoxins from mold growths are linked to ME/CFS and also cause the disease CIRS.

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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.
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. Conceivably 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. Many 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 alternative to injections. Go to full roadmap.
Methylation protocol. This involves taking vitamin B12 2000 mcg sublingually, L-5-MTHF 200 mcg, folinic acid 200 mcg, lecithin 1200 mg, and a multivitamin/multimineral daily. 27% achieve major improvements after 3 to 6 months, with the first benefits appearing around the 6 week stage. 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 round 2: Intestinal dysbiosis, leaky gut, IBS, SIBO, allergies, food intolerance, MCAS, low T3 syndrome, POTS, NMH, and OH.

In round 3: Herpes simplex virus, HHV-7, Coxiella burnetii, Giardia lamblia, Mycoplasma, Bartonella, Babesia, Brucella, West Nile virus, and Ross River virus.

In round 4: Vaccination, physical trauma, craniocervical instability, temporomandibular joint dysfunction, jaw bone cavitation infection, sinusitis, meningitis, 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 obstruction/stagnation.