Category: Press Release

Efficacy Of SARS–CoV-2 Specific Antiviral Therapy for Enteroviral Myalgic Encephalomyelitis/ChronicFatigue Syndrome

Abstract:

Background: Etiology remains elusive for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and no treatment exists. Antivirals had no efficacy in randomized clinical trials (RCT) for Epstein-Barr Virus and HHV-6. Enteroviruses (EV) have been implicated, but no antivirals are available. Many patients who received SARS–CoV-2-specific antiviral drugs for acute Covid-19 (COV19) infection experienced significant improvement of prior ME/CFS symptoms. This study summarizes their responses to antivirals for SARS-Cov-2.
Methods: Neutralizing Antibody (NA) for Coxsackievirus B (CVB)1-6 and Echovirus 6, 7, 9, 11, 30 were done by ARUP lab. Enterovirus Protein (EVP) of Peripheral Blood Leukocytes (PBL) was determined by Western Blot. ME/CFS patients fulfilled Canadian consensus criteria, and had either elevated NA for enteroviruses and/or positive EVP in PBL. ME/CFS patients hospitalized for acute COV19 infection and patients without COV19, were given 5-10 days of IV Remdesivir (Rem) +/- immune modulators. Controls: 20 ME/CFS patients seen concurrently without Remdesivir treatment. Other ME/CFS patients (non-COV19) were given Nirmaltrelvir/Ritonavir (PAX) daily for 10 days +/- one repeat. The energy index (EI) was monitored by the patients before, during and after treatment. Significant improvement was defined as > 30%.
Results: 15/20 (75%) ME/CFS patients – 10/12 hospitalized, 5/8 non-COV19 patients – responded to IV Rem 2-6 weeks after infusions; remission lasted 6-8 weeks to 6-9 months before relapse. Of Controls: 2/20 had mild improvement (< 0.001, X 2 ).

104/200 (52%) of PAX-treated ME/CFS patients improved, often within 2-3 days; all relapsed within days to weeks after treatment. 66%, 33% and 44% of CVB4+, CVB3+, non-CVB3,4+ patients responded to treatment, respectively. EVP decreased and increased with clinical response and relapse.

Conclusion: Rem and PAX demonstrated clinical efficacy in ME/CFS patients with chronic enterovirus infections. Placebo-controlled RCT will be needed to clarify the role of antivirals in ME/CFS.
Source: John K Chia, David Wang, P-2363. Efficacy Of SARS–CoV-2 Specific Antiviral Therapy for Enteroviral Myalgic Encephalomyelitis/ChronicFatigue Syndrome, Open Forum Infectious Diseases, Volume 12, Issue Supplement_1, February 2025, ofae631.2514, https://doi.org/10.1093/ofid/ofae631.2514 https://academic.oup.com/ofid/article/12/Supplement_1/ofae631.2514/7988721?login=false 

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society Statement on the Graham-Cassidy Amendment

PRESS RELEASE AND PUBLIC COMMENT

September 23, 2017 – Between one and two million Americans suffer from Myalgic Encephalomyelitis (ME), a chronic disease that profoundly disrupts the immune and nervous systems of those who contract it. Twenty-five per cent of those affected are severely ill, and unable to meet their needs. These patients rely on Medicaid services not only for access to medical care but for home assistance as well. The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) is deeply concerned about the effect the proposed Graham-Cassidy Amendment will have on patients with ME.

The proposed changes to Medicaid outlined in the Graham-Cassidy Amendment could have a drastic impact on patients. Community services would be cut, hospitalizations could be eliminated, pre-existing conditions – including ME – would be excluded from coverage. Laboratory services would also be curtailed, which would be devastating for ME patients, who frequently experience secondary infections as a result of immune dysfunction. Premiums would rise, resulting in a loss of insurance for a significant portion of those who have lost income as a result of ME.

We strongly urge Congress to reject the proposed Graham-Cassidy Amendment. Those living with this debilitating disease must have access to affordable, quality care, which is something the Graham-Cassidy Amendment cannot provide.

*The American ME and CFS Society, a national 501(c)(3) nonprofit, is dedicated to serving the needs of patients and caregivers through support, advocacy, and education.