Last week the International Association for CFS/ME held a virtual four day clinical and research conference from which several novel therapies have emerged for ME/CFS and Long Covid.
A special presentation by Dr. David Systrom (Harvard’s Brigham & Women’s Hospital) described Invasive CardioPulmonary Exercise Testing, which involves placing catheters in the patient’s arteries and heart in addition to the usual exercise test. His studies have demonstrated decreased blood flow to the heart, especially in persons with shortness of breath and POTS, but in asymptomatic patients as well. Systrom’s group found that using Mestinon / pyridostigmine increased blood flow to the heart and decreased symptoms. Needless to say, we will be using Mestinon more liberally in the future!
Dr. David Kaufman (Mountain View, California) related his experience with oxaloacetate, a Krebs Cycle metabolite. OAA has multiple beneficial effects. It increases NAD+, improves mitochondrial function through the Krebs Cycle, and is a potent antioxidant, among other effects. Kaufman found that physical and mental fatigue improved within 2 weeks of therapy and continued to improve over time. He started with a dose of 500mg twice daily for 2 weeks, then 1000mg twice daily. OAA is available over-the-counter but the cost is enormous: $500 for ninety 500mg capsules, so the monthly cost would be about $650. Sadly, the effect of the medication wears off quickly once it is discontinued, according to Kaufman.
Dr. Liisa Selin advanced the theory that CD8 suppressor cells are “exhausted” or only partially functional in ME/CFS and Long Covid. This is reflected in low values of CD107, IFNg, and TNFa. She has helped develop a concoction of 5 antioxidants named Inspiritol that purportedly revives these puny cells. This medication is nebulized and then inhaled.
In a study of 25 ME/CFS and 8 Long Covid cases Inspiritol improved CD8 function in 5 ME/CFS and 4 Long Covid cases if my notes are correct.
Inspiritol is a proprietary blend of antioxidants that is not FDA approved nor commercially available yet, but may be another future therapy to consider.
Ashok Gupta (London) once again presented his commercially available behavioral therapy, Amygdala and Insula Retraining. This course is available for purchase online. We have used this technique especially for persons with high sympathetic activity or hypervigilance. In my experience, it uses meditative and relaxation techniques to quell the sympathetic nervous system.
Two techniques that I will reserve for “last ditch efforts” are vagal nerve stimulation and stellate ganglion block.
Vagal nerve stimulation can be accomplished with a transcutaneous nerve stimulator (such as the Gammacore device) or by auricular transcutaneous nerve stimulation by a variety of TENS-like devices. Gammacor applies an electrical impulse to the neck, while auricular TNS relies on ear clips to provide an electrical stimulation to the head or cranium. Both have demonstrated some efficacy in reducing orthostatic symptoms, POTS, and gastrointestinal symptoms. The Gammacore unit is specifically designed to treat migraine headache.
Stellate Ganglion Block (SGB) reportedly increases blood flow to the brain and increases preload to the heart, so this technique is most effective for orthostatic intolerance and POTS. It requires multiple injections into the bilateral nerve bundles (sympathetic ganglia) of the neck. Ms. Deb Duricka and Dr. Liu (Neuroversions Clinic, Anchorage AK) reported using this in 11 people with complex unresponsive cases of ME/CFS, with partial or complete improvement in 9.
Such presentations are making us hopeful for future treatments, if not a cure!