A large number of treatments are being studied, most of which are already commercially available, to treat the constellation of overlapping symptoms related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), “prolonged COVID” and dysautonomia.
At the virtual annual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), speakers presented insights into various approaches to relieving symptoms that are not unusual in post-viral conditions, such as excessive fatigue, discomfort posestrés (“shock”), cognitive disorder (“mental fog”), orthostatic intolerance, adding postural orthostatic tachycardia syndrome (POTS) and chronic pain. Most modalities are already commercially available for other indications, some are expensive and not covered conditions.
“Post-acute COVID-19 syndrome and ME/CFS are bureaucracy of post-infectious viral syndromes and have overlapping symptoms. . . In the past, patients were told Array “have chronic fatigue syndrome, but there’s nothing we can do about it. “In fact, this is not the case. There are no cures, but there are many symptom control techniques,” said Charles W. Lapp, MD, medical director of the Hunter-Hopkins Center, Charlotte, North Carolina, to Medscape. Medical news in an interview.
One of the existing pillars of the ME/CFS remedy, which adds to the one triggered by COVID-19, is the stimulation of activity, in which patients are informed to remain in their “energy envelopes” to avoid discomfort after exertion, a worsening of all symptoms. with effort. The use of “graduated exercises” is no longer recommended, according to British and American guidelines.
Data from the following approaches were at the IACFS/ME conference:
Pyridostigmine, an acetylcholinesterase inhibitor, is approved for the treatment of muscle weakness resulting from myasthenia gravis and is available in generic form. It has already been shown to produce a significant improvement in symptom load and central frequency reaction in POTS.
At the IACFS/ME conference, David M. Systrom, MD, a specialist in pulmonary medicine and critical care at Brigham and Women’s Hospital and director of the cardiopulmonary laboratory at Massachusetts General Hospital, Boston, summarized his group’s study of ME/CFS patients using pyridostigmine either as a possible remedy to improve training capacity and as evidence of the concept that neurovascular dysregulation underlies exertional intolerance. in the condition.
A total of forty-five patients were randomized to obtain 60 mg of oral pyridostigmine or placebo after an invasive check of cardiopulmonary tension and a momentary check performed 50 minutes later. 40. 2 ml/min, P < 0. 05). Cardiac output and right ear tension also increased particularly with pyridostigmine and worsened with placebo.
“We recommend that treatable neurovascular dysregulation be the basis for acute exercise intolerance in ME/CFS. . . Pyridostigmine would possibly be a useful off-label remedy [for] a subset of patients with exercise intolerance,” Systrom said.
When asked to comment, Lapp said, “We’ve been Mestinon for years because it helps with POTS and also with nerve-mediated hypotension. Systrom takes it to a new point because it has been shown to increase the preload of the heart. However, he noted that it’s unclear whether the drug will particularly help patients who don’t have POTS. On the other hand, patients rarely revel in the side effects of the drug.
Since the generic tablets are only available in doses of 60 mg and the initial dose is 30 mg 3 times a day, he begged to reduce the tablets by partial titration up to 60 mg 3 times a day.
David Lyons Kaufman, MD, Center for Complex Diseases, Mountain View, California, summarized insights from his group’s recently published nonrandomized, open-label “proof of concept” study on the use of commercially available anhydrous nutrition. enol-oxalacetate supplement for the remedy of intellectual and physical fatigue in 76 patients with long-term ME/CFS and 43 patients with prolonged COVID-related fatigue.
Oxaloacetate is a primary level in the Krebs cycle within mitochondria that are depleted in ME/CFS patients. It’s also a life-filled metabolite that has effects on cells and mitochondria, Kaufman explained.
Doses ranging from 500 mg twice to 1000 mg 3 times over six weeks were administered. Up to 33% of ME/CFS patients and up to 46. 8% of long-term COVID patients achieved clinical efficacy measured through physical and intellectual fatigue scores, compared with only 5. 9% of older ME/CFS controls. All doses showed very significant improvements.
The only adverse effects were occasional dyspepsia, which was prevented by taking the supplement with food, and insomnia, which resolved by taking it at breakfast and lunch, Kaufman said.
Based on these initial data, a 90-day randomized placebo-controlled clinical trial is being conducted in 80 ME/CFS patients who received 2000 mg of anhydrous enol oxaloacetate according to the day. The evaluation criteria come with several objective measures.
“We have a healthcare crisis with prolonged COVID, and we have this latent crisis with ME/CFS for decades that has never been resolved. ME/CFS and prolonged COVID, if not identical, overlap. . . We want to continue those translational medicine pilot studies as temporarily as possible,” Kaufman noted.
Lapp told Medscape Medical News that it makes sense to use krebs cycle components for mitochondrial function, but the challenge with oxaloacetate is its cost. mg twice daily. The manufacturer’s online page lists the price of an individual bottle of thirty 250 mg pills at $49, or $42 if purchased through a monthly subscription.
“It’s a benign drug and it’s sold without a prescription. I would give it to any patient who has a big wallet,” Lapp joked, adding, “If they have the money, they can ask for it tonight. “
Inspiritol is a nebulized, inhaled and multimechanism experimental drug designed to treat the main symptoms of respiratory distress with antioxidant, anti-inflammatory and broad-spectrum antiviral and antibacterial properties. Inspiritol is composed of endogenous and natural products, well tolerated biochemically,” according to the company’s website.
The hypothesis, Liisa K said at the meeting. Selin, MD, PhD, professor of pathology at the University of Massachusetts Chan School of Medicine, Worcester, is that “ME/CFS and the long COVID-19 result from an aberrant reaction to an immunological cause such as an infection, in an immune formula permanently dysregulated due to overactivation of CD8 T cells and depletion.
Inspiritol, which contains five antioxidants, acts as an immune modulator against mobile CD8 T depletion and symptoms. Inhalation control takes you directly to the brain from the lung. It was originally designed for use in chronic obstructive pulmonary disease and asthma and has been shown to be effective for acute COVID-19, Selin said.
In an initial study, 4 patients with ME/CFS and five with prolonged COVID were treated with Inspiritol for 2 to 15 months, and all reported improvement in symptoms. Cough was the only reported aspect effect.
The company is pursuing a new investigational drug application for the product with the U. S. Food and Drug Administration. He has several patents pending. Lapp called Inspiritol “very interesting” and said reversing CD8 “depletion” would also appear to be a promising approach. However, he noted, “the challenge is that we don’t know what’s in it. “
Injection of local anesthetic near the stellar ganglion to block the activity of the entire cervical sympathetic chain has been used for nearly a century to treat a variety of sympathetic system-mediated conditions, in addition to complex regional pain syndrome (CRPS), shingles, and phantom limb. pain. More recently, it has been used in a variety of other conditions, adding post-traumatic stress disorder, Raynaud’s disease, menopausal hot flashes, and hyperhidrosis.
Insurance corporations cover you for CRPS, neuropathic pain in the upper extremities, hyperhidrosis and Raynaud’s disease, said Luke Liu, MD, founding anesthesiologist and lead executive director of Neuroversion, an Alaska-based pain management company.
Deborah Duricka, PhD, also with Neuroversion, presented the effects of a now-published case series of 11 patients with prolonged COVID who underwent stellar lymph node blockade through a qualified anesthesiologist, first at one at level C6, and then at the contralateral the next day.
Clinically significant benefits were seen in at least five of the patients in relation to fatigue, memory problems, concentration problems, immediate heartbeat, orthostatic intolerance, sleep problems, post-exertional discomfort, anxiety and depression.
The hypothetical mechanism, he says, is that “sympathetic blockade prevents sympathetic vasoconstriction in the carotid and vertebral arteries. “
Liu presented a case set of five ME/CFS patients who underwent the ultrasound-guided procedure, back and forth the next day. All had autonomic disorders of the upper extremities, such as Raynaud’s disease and/or neuropathic pain that had been refractory to more traditional treatments.
All five patients reported innovations in ME/CFS symptoms, adding power level, cognition, pain, and post-exercise discomfort. One patient said he “felt smart for the first time in decades. “However, this patient relapsed after a mild viral illness 3. 5 months after treatment. Some patients have needed more treatments.
Lapp commented that while the procedure is sometimes performed by an experienced doctor, “every time an injection like this is given, there is the primary risk that it could cut an artery or vein or touch a must-have nerve in the neck. That is why it will have to be done under fluoroscopy or ultrasound.
He said he had performed the procedure on some patients, basically for the CRPS, and that they gave the impression that they had benefited from it. “This can simply pool brain blood and preload the heart, so it can minimize CFS/mee. symptoms and also assistance with POTS,” he said.
However, Lapp said he would not use stellar ganglion blockade as a first-line treatment for ME/CFS or prolonged COVID. “I think it would be for the treatment-resistant patient, when they’ve gone through all the remedies that we know and treated all the comorbidities and they still don’t get better. “
But, he added, it’s a popular procedure. ” Any pain clinic can make a star block. “
Nicola Clague-Baker, PhD, a physiotherapist at the University of Liverpool, Liverpool, UK, presented the results of an overseas survey of other people with ME/CFS regarding her experience with transcutaneous atrial vagus nerve stimulation (taVNS) to manage their autonomic symptoms. The strategy is to stimulate the autonomic nerve formula through the vagus nerve electrodes applied to the ear component. The theory is that the strategy stimulates the parasympathetic nerve formula and improves autonomous balance.
Two previous small trials that showed the benefits of vagus nerve stimulation for other people with ME/CFS used more invasive and less comfortable strategies to apply the stimulation instead of the ear, Clague-Baker and colleagues note in a poster. It has also been used effectively in the POTS remedy, noted some other speaker.
A total of 131 other people with ME/CFS (simply called “MS” in the UK) responded to a survey posted on social media and websites. The majority (60%) came from the UK while the rest came from Europe. , Australia and Norte. La america were mostly women and only a portion had been living with MS for 10 years or more.
The majority (72%) were still taVNS, while 28% had left. Only 9% had been using the modality for more than a year. Respondents noted more than 30 benefits in symptoms and activities, with innovations in post-exercise discomfort (39%) and mental confusion (37%) being the most common. One reported significant relief in constipation.
However, respondents also discussed more than 20 short- and long-term negative effects, adding headaches (15%) and long-term inflammation in the (9%). One player reported a “great improvement in neuropathic pain, but not so much. “for muscles and joints. “
Overall, 80% said they would continue to use taVNS and 67% said they would recommend it to others with ME, and 56% said the formula was very beneficial.
Lapp noted that several types of transcutaneous electrical nerve stimulation equipment with ear clips are sold online, and he has noticed that they work well for migraine treatment. However, he cautioned that some patients have had side effects from the treatment, such as headaches and dizziness. “It sends an electric current to your brain. In my opinion, this is a measure of last resort.
Lapp reported any monetary disclosures.
2022 Annual Meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Presentations made from July 28 to 20, 2022.
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