Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID

Press Release: LOS ANGELES, Dec. 4, 2020 /PRNewswire/ — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora.Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

Letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

$110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
$60 million toward expanding post-viral disease research;
$3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
$300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

About Solve ME/CFS Initiative

Solve M.E. is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding for research that will lead to a cure.

To learn more, visit our website at www.solveCFS.org

Media Inquiries Only Contact
Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org

Role of mitochondria, oxidative stress and the response to antioxidants in myalgic encephalomyelitis/chronic fatigue syndrome: a possible approach to SARS-CoV-2 ‘long-haulers’?

Abstract:

A significant number of SARS-CoV-2 (COVID-19) pandemic patients have developed chronic symptoms lasting weeks or months which are very similar to those described for myalgic encephalomyelitis/chronic fatigue syndrome. This paper reviews the current literature and understanding of the role that mitochondria, oxidative stress and antioxidants may play in the understanding of the pathophysiology and treatment of chronic fatigue. It describes what is known about the dysfunctional pathways which can develop in mitochondria and their relationship to chronic fatigue. It also reviews what is known about oxidative stress and how this can be related to the pathophysiology of fatigue, as well as examining the potential for specific therapy directed at mitochondria for the treatment of chronic fatigue in the form of antioxidants. This review identifies areas which require urgent, further research in order to fully elucidate the clinical and therapeutic potential of these approaches.

Source: Wood E, Hall KH, Tate W. Role of mitochondria, oxidative stress and the response to antioxidants in myalgic encephalomyelitis/chronic fatigue syndrome: a possible approach to SARS-CoV-2 ‘long-haulers’? Chronic Dis Transl Med. 2020 Nov 21. doi: 10.1016/j.cdtm.2020.11.002. Epub ahead of print. PMID: 33251031; PMCID: PMC7680046.  https://pubmed.ncbi.nlm.nih.gov/33251031/

Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19

Excerpt:

It has been demonstrated that clinical outcomes of COVID-19 are significantly worse in persons with advanced age and those with “traditional” medical comorbidities (cardiovascular disease, pulmonary disease, diabetes, malignancy, and immunosuppression). But what about the ever-increasing group of people in our society, many of whom do not have “traditional” medical comorbidities, who suffer chronically from pain, fatigue, and functional decline? We are referring to patients with fibromyalgia (FM) and chronic fatigue syndrome (CFS): 2 conditions that, although medically distinct, share a common pathophysiological etiology: central sensitization (CS).

Source: Mohabbat AB, Mohabbat NML, Wight EC. Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19. Mayo Clin Proc Innov Qual Outcomes. 2020 Nov 13. doi: 10.1016/j.mayocpiqo.2020.08.002. Epub ahead of print. PMID: 33204998; PMCID: PMC7661943. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7661943/ (Full text)

Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report

Abstract:

Coronavirus disease (COVID-19) is a novel highly contagious infectious disease caused by the coronavirus SARS-CoV2. The virus affects the human respiratory and other systems, and presents mostly as acute respiratory syndrome with fever, fatigue, dry cough, myalgia and dyspnea. The clinical manifestations vary from no symptoms to multiple organ failure. Majority of patients fully recover. Several postinfectious presumably autoimmune complications of COVID-19 affecting the brain or peripheral large nerve fibers have been reported. This report describes a post COVID-19 patient who developed chronic fatigue, orthostatic dizziness and brain fog consistent with orthostatic hypoperfusion syndrome (OCHOS), a form of orthostatic intolerance, and painful small fiber neuropathy (SFN). Initially, the patient was diagnosed with. OCHOS (detected by the tilt test with transcranial Doppler monitoring) and SFN (confirmed by skin biopsy), and both OCHOS/SFN were attributed to Post Treatment Lyme Disease Syndrome of presumed autoimmune etiology. Patient recovered on symptomatic therapy. COVID-19 triggered exacerbation of OCHOS/SFN responded to immunotherapy with intravenous immunoglobulins. This case suggests that post COVID-19 syndrome may present as an autoimmune OCHOS/SFN and that early immunotherapy may be effective. Further studies are necessary to confirm the link between OCHOS/SFN and COVID-19 disease as well as to confirm the benefit of immunotherapy.

Source: Novak P. Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report. eNeurologicalSci. 2020 Dec;21:100276. doi: 10.1016/j.ensci.2020.100276. Epub 2020 Sep 20. PMID: 32984564; PMCID: PMC7502253. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502253/ (Full text)

Post-viral fatigue and COVID-19: lessons from past epidemics

Abstract:

The COVID-19 pandemic, resulting from Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), has severely impacted the population worldwide with a great mortality rate. The current article reviews the literature on short- and long-term health consequences of prior epidemics and infections to assess potential health complications that may be associated with post-COVID-19 recovery. Past research on post-epidemic and post-infection recovery has suggested that such complications include the development of severe fatigue.

Certain factors, such as the severity of infection, in addition to the ‘cytokine storm’ experienced by many COVID-19 patients, may contribute to the development of later health problems. We suggest that the patterns observed in past epidemics and infections may re-occur in the current COVID-19 pandemic.

Source: Mohammed F. Islam, Joseph Cotler & Leonard A. Jason (2020) Post-viral fatigue and COVID-19: lessons from past epidemics, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1778227 https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1778227 (Full article)