IACFS conference 2022 report 1 - treatments for ME/CFS Covid symptoms

IACFS/ME Conference (1): Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long Covid

By Miriam E. Tucker, Medscape News, 05 August 2022

A variety of treatments, most already commercially available, are under investigation for treating the constellation of overlapping symptoms associated with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), “long COVID,” and dysautonomia.

At the virtual annual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), speakers presented data for a variety of approaches to ease symptoms common across post-viral conditions, such as extreme fatigue, post-exertional malaise (“crash”), cognitive dysfunction (“brain fog”), orthostatic intolerance including postural orthostatic tachycardia syndrome (POTS), and chronic pain. Most of the modalities are already commercially available for other indications, although some are costly and not covered by payers for these conditions.

“Both post-acute COVID-19 syndrome and ME/CFS are forms of post-infectious viral syndromes and they have overlapping symptoms. … In the past, patients were told ‘you have chronic fatigue syndrome but there’s nothing we can do for it.’ That certainly is not the case. There aren’t cures, but there are many management techniques to improve symptoms,”

Charles W. Lapp, MD, medical director of the Hunter-Hopkins Center, Charlotte, North Carolina

A current mainstay of treatment for ME/CFS — including that triggered by COVID-19 — is activity pacing, in which patients learn to stay within their “energy envelopes” in order to avoid post-exertional malaise, a worsening of all symptoms with exertion. The use of “graded exercise” is no longer recommended, per UK and US guidelines.

Data for the following approaches were presented at the IACFS/ME conference:

Pyridostigmine (Mestinon, Others)

Pyridostigmine, an acetylcholinesterase inhibitor, is approved for the treatment of muscle weakness resulting from myasthenia gravis and is available in generic form. It has previously been shown to produce significant improvement in both symptom burden and heart rate response in POTS…

Oxaloacetate (benaGene)

David Lyons Kaufman, MD, of the Center for Complex Diseases, Mountain View, California, summarized data from his group's recently published open-label, non-randomized, “proof-of-concept” study on use of the commercially available nutritional supplement anhydrous enol-oxaloacetate for treating mental and physical fatigue in 76 patients with longstanding ME/CFS and 43 with long-COVID fatigue…

Inspiritol

Inspiritol is an investigational “nebulized, inhaled, multi-mechanism medication designed to treat the major symptoms of respiratory distress with antioxidant, anti-inflammatory, and broad spectrum antiviral and antibacterial properties. Inspiritol is composed of both endogenously produced and naturally occurring, well tolerated biochemicals,” according to the company website…

Stellate Ganglion Block

Injection of local anesthetic near the stellate ganglion to block activity of the entire cervical sympathetic chain has been used for nearly a century to treat a variety of sympathetically mediated conditions, including complex regional pain syndrome (CRPS), shingles, and phantom limb pain. More recently, it has been used in a variety of other conditions, including post-traumatic stress disorder, Raynaud’s disease, menopausal hot flashes, and hyperhidrosis…

Transcutaneous Auricular Vagus Nerve Stimulation

Nicola Clague-Baker, PhD, a physiotherapist at the University of Liverpool, Liverpool, United Kingdom, presented findings from an international survey of people with ME/CFS regarding their experience with transcutaneous auricular vagus nerve stimulation (taVNS) to manage their autonomic symptoms. The technique involves stimulation of the autonomic nervous system via the vagus nerve using electrodes applied to part of the ear. The theory is that the technique stimulates the parasympathetic nervous system and improves autonomic balance…

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