By David Tuller, DrPH
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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. To participate in these meetings, registration is required by April 22nd. 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 11th, Fatigue: 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.
These sums are massive, but personally I’d rather we concentrated on the estimates of the number of sufferers and on the impacts that long-covid will have on their lives than on estimates of the potential financial burden, given the way that estimates of the costs of so-called MUS seem to have been used to deprive patients of good medical care in the UK. Patients and researchers may think that they’re making a case for essential investment in good clinics and research, but they may just be giving ammunition to those who call for more psychological research (as if there wasn’t enough already) and who laud cheap CBT and GET as the most effective treatments. In the end, it’s probably the voters we need to convince, not the policy makers who I imagine are more likely to choose the cheapest and seemingly most convenient, pink, fluffy, unicorn option unless pressurized by their electorates to do otherwise.
To follow on from my previous comment – the better case is this, I think:
If 2–4% of the total U.S. population will be long-term disabled by Long Covid, then perhaps 10-20% of the population (including close family members) will be directly affected by that person’s disability and could be persuaded to vote a different way if the political party they usually vote for isn’t delivering for them or if another party is offering better. The percentage could be even greater if their wider family and friends consider it a big enough deal. Politically speaking, good research and effective care is therefore what’s needed, not cheap and ineffective sop.
Interesting comments. Thanks!
My brain activity has the unenviable task of attempting to unify my sense of absolute truth with pragmatism.
The Long Covid question apropos ME is one such conundrum. I’m mindful that Long Covid as a construct could indeed provide opportunities for research which could prove to be useful for people with ME. However I’m also mindful, especially where (in my opinion) useless (or largely useless and overly embracing) sets of criteria are used to define ME, such as the IOM set, we can’t be sure that we’re necessarily pairing apples with apples.
What we have been seeing of late is a small clutch of researchers who, using ICC, have not only come up with some meaningful results but have also (as in the case of Sonya Marshall-Gradisnik et al in Australia) been able to illustrate that *within* the so-called ME/CFS community, patient cohorts sifted using ICC, when compared with other less stringent criteria, illustrate significant differences in ensuing data. Now if that can be seen *within* the ME/CFS cohort sets how much more problematical could it be to add another group of people, Long Covid sufferers, who are ‘re-diagnosed’ as having ‘ME or ‘CFS’, to the picture?
It behoves all researchers to ensure that each cohort is clearly defined. There might well be overlaps in findings at a biomedical research level, but the way to elucidate that is not to lump disparate populations together at this stage. It’s not scientific. And I fear that that is what might be happening here.
Better commentators than I have observed that whilst the IOM criteria can capture ME sufferers it’s also capable of capturing a shed-load of other patients who don’t have ICC ME. Using additional sets of criteria such as CCC (I still can’t work out what the problem is with using ICC in this context … it just seems wilfully mulish to prefer ‘Windows 1.0 over Windows 11’ ) are all very well & good on paper but unless data is extracted separately & in a way which can illustrate differences according to how a cohort is described, it’s imply ‘window’ dressing isn’t it?
These two populations need to be kept as distinct entities until the data says otherwise. The exception to this is those of us with very long standing ME who have suffered Covid, and subsequent long-term sequelae from it (which I’d argue from my personal experience is very distinct from my ME reality, and I’m not alone in making this observation), and in those cases the data should be extracted to take account of that confused picture, if that is possible.
As an ME patient I’m also concerned that organisations and research bases which were formerly created to look for answers for people with ME are now being lured into the financially more lucrative area of Long Covid research, where we’re observing funding largesse on a whole different scale. Could it be that ME patients are being edged out of the conversation? Once again, I’m not alone in having this concern. Where this appears to be happening, and where orgs also fundraise from the ill population, they need to make it very clear to patients (who might be giving up their limited means in the hope of moving the science of *their* disease forward), just exactly how much time, money and energy is going into ME research when compared with Long Covid research.
The pragmatist in me would love to see Long Covid science informing my disease in a way that leads to personal benefits, but there are traps into which the ME community can fall and advocates are watching with considerable interest to ensure that people with ME are not being short-changed and that ‘the science’ really is ‘science’.
“As an ME patient I’m also concerned that organisations and research bases which were formerly created to look for answers for people with ME are now being lured into the financially more lucrative area of Long Covid research, where we’re observing funding largesse on a whole different scale. Could it be that ME patients are being edged out of the conversation?”
This captures perfectly the concern I have as a long-term (32 years) ME patient. I am especially worried about Solve, where ME patients seem to be an afterthought in comparison to Long Covid.