Solve M.E. COVID-19 and ME/CFS Information Center

Welcome to Solve M.E.’s COVID-19 information hub. This information center is designed to provide the most current COVID-19 information for people with ME/CFS, health care providers, and people with questions about the emerging connections between COVID-19 and ME/CFS. New data is published frequently. Please check back for updates.

What is the novel coronavirus and COVID-19?

From the Centers for Disease Control and Prevention (CDC):

The novel coronavirus is a new coronavirus that has not been previously identified. The virus causing coronavirus disease 2019 (COVID-19), is not the same as the coronaviruses that commonly circulate among humans and cause mild illness, like the common cold.

On February 11, 2020 the World Health Organization announced an official name for the disease that is causing the 2019 novel coronavirus outbreak, first identified in Wuhan China. The new name of this disease is coronavirus disease 2019, abbreviated as COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease. Formerly, this disease was referred to as “2019 novel coronavirus” or “2019-nCoV”.

There are many types of human coronaviruses including some that commonly cause mild upper-respiratory tract illnesses. COVID-19 is a new disease, caused by a novel (or new) coronavirus that has not previously been seen in humans.

For the latest COVID-19 updates from the Centers for Disease Control (CDC), visit their website:
https://www.cdc.gov/coronavirus/2019-ncov/index.html

For the latest updates from the World Health Organization (WHO):
https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

For the latest updates from the National Institutes of Health (NIH):
https://www.nih.gov/health-information/coronavirus


 

What are post-viral illnesses and syndromes?

“Post-viral” or “Post-infectious” refers to symptoms triggered by or associated with an infection and occurring for any length of time after that infection. Many post-infectious syndromes have been recognized in the last 50 years, some following viral infections and others closely related to bacterial disease. While still not fully understood, post-viral diseases and syndromes are generally precipitated by an acute infection, like COVID-19, and can impact patients regardless of the severity of the initial illness. Even if the initial viral infection was asymptomatic (without symptoms), a post-viral disease or illness may still follow weeks or months afterwards.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating chronic illness known for afflicting people following viral infections[1]. While “ME/CFS” is the preferred name by many, this disease has also been called systemic exertion intolerance disorder (SEID), chronic fatigue immuno-deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS).

ME/CFS is one of the most prevalent post-viral chronic illnesses in the United States, disrupting the lives of up to 2.5 million Americans. Patients with ME/CFS experience dozens of symptoms, but Post-Exertional Malaise (PEM) is the “hallmark” symptom of ME/CFS. PEM is a unique type of extreme exhaustion at the cellular level, which is made worse by effort (either physical or mental).

Generally, symptoms of ME/CFS must be present for 6 months or more for a diagnosis. Often, patients who present with ME/CFS symptoms for periods shorter than 6 months are diagnosed with post-viral fatigue syndrome (PVFS).

“If you went to see a doctor, the clinical assessment for post-viral fatigue syndrome would be the same as for [ME/CFS].” —  Michael Musker PhD, Senior Research Fellow, South Australian Health & Medical Research Institute[2]

Other similar diseases/syndromes like Guillain-Barre Syndrome, dysautonomia and POTS, or Mast Cell Activation Syndrome are also associated with post-viral fatigue syndrome and ME/CFS.

[1] Mayo Foundation for Medical Education and Research (MFMER) (4/15/20) “Chronic Fatigue Syndrome”

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

[2] Musker PhD, Michael. “What Is Post-Viral Fatigue Syndrome, the Condition Affecting Some COVID-19 Survivors?” The Conversation, Academic Rigor, Journalistic Flair, 5 Oct. 2020, www.theconversation.com/what-is-post-viral-fatigue-syndrome-the-condition-affecting-some-covid-19-survivors-146851


 

Will COVID-19 lead to ME/CFS in some people?

Potentially, yes. There is emerging evidence that many individuals who contract COVID-19 are suffering with persistent symptoms that are reminiscent of ME/CFS. These cases of extended illness following COVID-19 are being called “Long Term COVID-19” or “Long Haulers.” Additionally, expert ME/CFS clinicians have reported diagnosing a growing number of patients with ME/CFS following a COVID-19 infection.

“We’re looking at a large cohort of post-COVID survivors. And we’re seeing variable percentages in anywhere from 25 to 35% or more have lingering symptoms.” — Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID)[1]

About 80% of people with ME/CFS report that their symptoms followed a viral infection[2] and research shows that previous coronaviruses (SARS and MERS) triggered ME/CFS in about 11% of patients[3]. One 2009 study of SARS patients reported that 40% of patients continued to experience ME/CFS-like symptoms four years after their initial viral infection[4]. If the novel coronavirus behaves like SARS and MERS in regards to lasting ME/CFS symptoms, as early evidence suggests is likely, COVID-19 could potentially double the existing number of patients with ME/CFS in the United States over the next two to four years.

*Strazewski, Len. Dr. Fauci Offers 2021 Forecast on COVID-19 Vaccines, Treatments, American Medical Association, 9 Nov. 2020, www.ama-assn.org/delivering-care/public-health/dr-fauci-offers-2021-forecast-covid-19-vaccines-treatments.

£ Evengård B, Jonzon E, Sandberg A, Theorell T, Lindh G. Differences between patients with chronic fatigue syndrome and with chronic fatigue at an infectious disease clinic in Stockholm, Sweden. Psychiatry Clin Neurosci. 2003 Aug;57(4):361-8. doi: 10.1046/j.1440-1819.2003.01132.x. PMID: 12839515.

¥ Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006 Sep 16;333(7568):575. doi: 10.1136/bmj.38933.585764.AE. Epub 2006 Sep 1. PMID: 16950834; PMCID: PMC1569956.

± Lam MH, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP. Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up. Arch Intern Med. 2009 Dec 14;169(22):2142-7. doi: 10.1001/archinternmed.2009.384. PMID: 20008700.

Further reading:


 

What is Solve M.E.’s response to COVID-19?

Solve M.E. is Leveraging the You + ME Registry to Study COVID-19

The You + ME Registry is a collection of patient-reported data from people with long COVID, people with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), and control volunteers.

We are driven to help better understand why some people are experiencing long-term impacts from COVID-19, while others are not. We also aim to identify similarities and differences between long COVID and ME/CFS, which often follows a viral infection. Comparing data from thousands of individuals provided over time will help researchers identify causes and treatments for these complex diseases. To collect this data, we have:

  • Integrated a COVID-19 questionnaire in the You + ME survey dashboard so that we can track the impact of COVID-19 on the health of people with pre-existing ME/CFS.
  • Initiated partnerships with established COVID-19 registries and apps to include questions that ask participants whether they have developed post-viral ME/CFS-like symptoms. If they answer yes, they will be referred to You + ME so they can provide more comprehensive information.

To learn more, visit the You + ME Registry.

Solve M.E. Spearheaded the Formation of the Long COVID Alliance

The Long COVID Alliance, launched by Solve M.E. in February 2021, is a network of patient-advocates, scientists, disease and public health experts, and drug developers, who have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-infectious illness.

Read more about the launch of the Long COVID Alliance here.

To accompany the Long COVID Alliance’s launch, the initial partners drafted key recommendations and guidance for the National Institutes of Health (NIH). We also included a list of scientific initiatives from the ME/CFS research community to highlight their importance and priority for NIH decision makers. You can view the complete letter here.

To learn more about the Long COVID Alliance, please visit www.LongCOVIDAlliance.org


Solve M.E. Helped Secure Over $1 Billion for Federally Funded Research into Long COVID

In December of 2020, Solve M.E., joined by 20 leading chronic disease stakeholders, authored a powerful letter urging Congress to fund millions of dollars in new NIH and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for Long COVID survivors. The letter also served as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

The letter asserted 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.

To view a copy of the letter, click here.

Our efforts paid off! Congress ended 2020 by passing a $900 billion COVID-relief package and a $1.4 trillion FY21 budget simultaneously. This giant bill, totaling over 5,500 pages, was signed into law on December 27th. It contained direct payments to citizens, expanded unemployment benefits, included new provisions for clinical trials, and most importantly, new opportunities and actions for Long-COVID, which will directly help ME/CFS.

In addition to a $2 billion budget increase, Congress approved an additional $1.15 billion to the National Institutes of Health (NIH) as a set-aside specifically for “research and clinical trials related to long-term studies of COVID–19” with an additional $100 million specifically set aside for the Rapid Acceleration of Diagnostics. The funds will remain available to the NIH until September 30, 2024.

Congress clearly communicated that these funds are “prescribed” exclusively for Long COVID (referred to by government leaders as “post-acute COVID syndrome”) and the NIH has confirmed this intention. In a public statement, Dr. Larry Tabak, the Principal Deputy Director of the NIH, again confirmed that these funds appropriated by Congress are “strictly for post-acute COVID syndrome, including Multisystem Inflammatory Syndrome in Children (MIS-C).” Dr. Tabak also confirmed that there will be a trans-NIH approach to the use of these funds, but no specific plans or further details have been released at this time. Asked specifically about this $1.15 billion dedicated to “long-term” studies of COVID, the NIH official said:

“This is a rather prescribed resource set to look at post-acute COVID syndrome. And, that will include the so-called MIS-C [Multisystem Inflammatory Syndrome in Children] we observe in children. So, we are working on a trans-NIH approach to this very important question. But, that resource is prescribed. Depending on the final form of the studies, that’s how we will determine the allocation of those specific funds. But it is focused on that specific problem, a broad problem [post-acute COVID syndrome], but never-the-less a specific problem.”

—Dr. Larry Tabak, Research! America Alliance Member Meeting, January 12, 2021

This quote (above) from the top NIH official is found at the 15:30 minute mark in this video from a Research! America meeting.

 

Solve M.E. Endorsed Landmark Legislation for COVID-19 and ME/CFS Research

Solve M.E. endorsed landmark legislation for ME/CFS research, H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act. This legislation was introduced by Congressman Jamie Raskin (ME-08) in June 2020. Though the 116th Congress did not pass the bill, the legislation would have bolstered ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for expanded research opportunities looking at connections between ME/CFS and COVID-19 survivors. It would have enabled existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.

Unfortunately, this bill did not pass by the end of the 116th Congress. As the 117th Congress begins, Solve M.E. continues to work with our congressional partners and coalition allies to reintroduce a new version of H.R. 7057 sometime in 2021.

 


 

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