Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

COVID-19 and ME News Flash from Uppsala 6/17/20

Jonas Bergquist, Professor of Neurochemistry at the Department of Chemistry (BMC) has started a collaboration with the neurointensive care unit at Uppsala University Hospital in order to study samples taken from COVID-19 patients.

Why have you started this collaboration?

Jonas Bergquist, Professor of Neurochemistry
at the Department of Chemistry (BMC).
Photo: Private

“My research group has long had a particular interest in studying patients with potential neuroinflammatory diseases, especially myalgic encephalomyelitis (ME). In this patient group, the recovery system is depleted of energy at the same time as the nervous system and immune system are compromised. What we want to study is whether patients who have suffered a severe COVID-19 infection exhibit similar post-viral fatigue and to what extent this occurs. We are aware of just such a correlation from other major pandemics, including Spanish flu, Asian flu and SARS.”

How do you go about working with COVID-19?

“Specifically, what I and my research group are doing at the moment is to work very closely with the neurointensive care unit at Uppsala University Hospital among others, to monitor those patients who require the most advanced intensive care. With our analyses, we attempt to follow the course [of the infection] in them to see what we can learn from it.

“We continuously collect samples throughout the process, from when the patient is admitted until, hopefully, they are discharged and return home. The idea is that we will also monitor them over a lengthy period after they return home, possibly for many years if we have everything in place. As my area of special interest is cerebrospinal fluid, where possible we take such samples from the patients. We also look at standard blood and urine samples, as well as some biopsy materials in cases where surgical procedures are also required.”

What kind of answers are you hoping for?

“We are already looking for neuroinflammatory markers and nerve cell markers in ME patients, so we are attempting to see if these are also found in COVID-19 patients’ spinal fluid. This might show a correlation and provide data on which patients are at risk of suffering long-term and even chronic problems. If this is the case, what are these biomarkers and which other organs are affected at the same time? Can we see patterns in which different infections that affect the nervous system behave in a similar manner? What we need to do now is follow up and study the situation of those patients who have ended up under intensive care and who have neurological symptoms. How will they fare once they get home and recover from their infection-related illness? Will they show continuing adverse effects or will they fully recover?”

You meet a great many ME / CFS; patients within the framework of the research centre you lead at Uppsala University: how have they been affected during the current pandemic?

“Many of them already live in isolation so, unfortunately, for them social distancing has not involved any great change; however, those who require home nursing or other assistance have of course been affected like all other patients. In addition, they often belong to risk groups and many have problems with, for example, blood pressure regulation and the autonomic nervous system. As luck would have it, it appears that very few ME patients have contracted a confirmed COVID-19 infection, at least based on the reports we have received.”

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo