Trial By Error: Two Reports on the Financial Burden of Long Covid and Its Impact on ME/CFS Prevalence

This piece was originally published in Virology Blog by David Tuller, DrPH on April 20, 2022 and is republished here with permission.

It is clear that long Covid—however that term is defined–is having enormous impacts on employment, social benefits, disability insurance, and other domains. Even the coronavirus pandemic were to end today, those impacts would continue long into the future. The pandemic is also likely to lead to a rise in the numbers of those diagnosed with the disease or cluster of diseases currently being called ME/CFS.

Two publications this month shed some light on the situation in the US. First, the Solve Long Covid Initiative published a “white paper” called “Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost.” Second, three authors revisit their own earlier estimates of the economic burden of ME/CFS in relation to levels of government research spending. This time, they have incorporated into their analysis the expected increase in cases stemming from the pandemic. (I’m not a statistician or any kind of math whiz, so I’m not commenting on the models and calculations used in these analyses.)

The Solve Long Covid Initiative is a project of the Solve ME/CFS Initiative, the organization formerly known as the Chronic Fatigue Immune Dysfunction Syndrome Association of America. The white paper, published on April 5th, distinguishes between moderate cases of long Covid and those considered more severe and disabling. Using two models to assess prevalence, it estimates that the financial burden of long Covid up until January 31st of this year ranged from $386 billion and $511 billion. The report further includes these sobering calculations:

“The Solve Long Covid Initiative models estimate that through January 31, 2022, the COVID-19 pandemic has potentially caused, at minimum, 22 million cases of Long Covid, with a higher estimate model suggesting more than 43 million cases. This caseload includes 7 to 13% of the total population of the United States. Of these cases, 7 to 14 million (2–4% of the total U.S. population) are expected to result in longterm disability—placing individuals at risk of lifelong complex health problems and economic ruin from healthcare costs, unemployment, denied benefits, eviction, and homelessness.”

The report was published before the organization’s scheduled days of advocacy in Washington, DC, in May. The events include virtual meetings with members of the House of Representatives on May 10th and 11th and senators on May 17th. The main asks this year are for legislators to co-sponsor legislation for increased funding for research into long Covid and other post-infectious conditions as well as more resources for treatment and support services.

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On April 11thFatigue: Biomedicine, Health & Behavior, the journal of the International Association of CFS/ME, published an article called “Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications.” The senior author, Leonard Jason, is a psychology professor at DePaul University and an author or co-author of many, many dozens of articles about the illness. (Perhaps hundreds; I haven’t counted.) His co-authors, Arthur Mirin and Mary Dimmock, are independent researchers and patient advocates.

Like the estimates in the Solve Long Covid Initiative report, their conclusion is sobering:

“A significant portion of people with Long COVID are likely to develop ME/CFS, contributing to a substantial increase in ME/CFS prevalence, disease burden, and economic impact. Taking into account this expected increase in ME/CFS onset following COVID-19, we estimate the resultant U.S. ME/CFS prevalence could range between 5 and 9 million individuals. This would require an annual research funding level of $472 to $600 million to be commensurate with its disease burden – up to 40 times higher than the current $15 million allocation. This increase in prevalence translates to an annual economic burden of ME/CFS of $149 to $362 billion in medical expenses and lost income, an amount that does not account for the economic costs associated with disability services and social services as well as lost income on the part of caretakers.”

Professor Jason is also currently seeking subjects for a survey of adults who have had Covid-19 that is investigating long Covid, ME, CFS and post-exertional malaise. Completing the survey is expected to take around 30 minutes. “We hope that this set of questionnaires will help us better understand some of the Long COVID symptoms as well as those of ME and CFS,” notes the information for prospective participants.

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