“The pandemic has opened the world’s eyes to the fact that many chronic illnesses have been largely ignored, dismissed, and ridiculed. Long COVID has taught the world that these diseases are real, there
is a biological basis for them, and we need to study them.” Akiko Iwasaki, PhD
One way to track how a disease is doing in the research arena is to simply track where the large donations are going. We’re always quite naturally focused on what’s happening at the National Institutes of Health (NIH) with its ginormous $47.5 billion budget.
With the ME/CFS funding dropping about 25% this year (from $17 million to $13 million), and fibromyalgia funding stagnant at a miserable $13 million (about $1.30 per person with FM in the US – making it possibly the poorest funded major disease in the NIH), the news for these diseases with regard to federal funding is not good. (It’s a remarkable thing to see funding for the disease most associated with long COVID – ME/CFS – actually drop during the long-COVID era at the NIH.
Even after the emergence of its sister disease, long COVID, ME/CFS more than ever, remains the most underfunded disease by disease burden at the NIH).
There is some good news from the NIH, though, on the post-infectious front. Lyme disease, with its Lyme Congressional Caucus, its support in the Senate (Senator Kay Hagan died of a tick-borne illness, and Congress (Lee Zeldin), has managed to more than double its funding over the past six years ($20-52 million/year).
Private Funding Boosts ME/CFS, Long COVID and Post-Lyme Disease
Things may not be happening yet at the NIH with regard to ME/CFS but they are with private funding. Private funding, with its ability to bypass the strictures that organizations like the NIH put in place, and its ability to quickly get money into the hands of innovative researchers, can play an outsize role in a disease. Recently, ME/CFS, long COVID, and chronic Lyme disease received a nice – and nicely targeted boost – from private funders.
Akiko Iwasaki and the Yale School of Medicine received $3 million dollars in private funding to tackle these illnesses. Philanthropist Emily Fairbairn – the co-founder of Ascend Capital, a multi-billion-dollar hedge fund – whose entire family was afflicted with chronic Lyme disease, awarded $2 million to study long COVID and chronic Lyme disease. Carol Sirot, who has ME/CFS, said, “The silver lining to COVID is having people hear about ME/CFS” provided $1 million to help uncover a biomarker for ME/CFS.
The article, “ME/CFS, Long COVID, and Chronic Lyme Disease Research Aided by $3 Million in Donor Gifts to Yale School of Medicine”, announcing the funding gifts couldn’t have laid out the issues facing people with these diseases more clearly. It began with the story of the suicide of a 40-year-old woman with two children who took her life after coming down with long COVID, which quickly transformed into severe ME/CFS.
Over time, she could barely move, lost her ability to speak, and could not tolerate light or sound. Throughout her disease progression, doctors again and again dismissed her symptoms.
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From an ME/CFS perspective, the money couldn’t have gone to a better researcher. While other long-COVID researchers either don’t seem to know that ME/CFS exists (or pretend as if it doesn’t), Iwasaki not only embraced the ME/CFS connection early but has been perhaps the most foremost ME/CFS proponent from the long-COVID research camp.
Iwasaki gave the keynote speech at the 2022 IACFS/ME conference and it was Iwasaki who, during the recent Keystone long COVID conference, stated we – the long-COVID research community – “have to get beyond the spike protein”; i.e. beyond a strict focus on the coronavirus in order to understand it and other post-infectious syndromes. When the award was announced, Iwasaki stated:
“Long COVID has put a spotlight on existing diseases such as ME/CFS and chronic Lyme disease, which have been traditionally and historically ignored until very recently…ME/CFS and Long COVID are related. Up to 50 percent of people will get ME/CFS after having Long COVID.”
Iwasaki stated that the 2023 Else Kröner Fresenius Prize for Medical Research she received in June of this year, in Frankfurt, Germany will help support her work on long COVID and other chronic and debilitating post-acute infection syndromes (PAIS) such as ME/CFS and Lyme disease.
“We still don’t know how to treat, better diagnose, and prevent PAIS diseases, but at least there is now more awareness for diseases that have been traditionally and historically ignored. What we would really like to do is to get to the bottom of the root causes of these diseases.” Akiko Iwasaki
Iwasaki, in collaboration with the PolyBio Research Foundation, also received the 2022 Jahodamis 2022 grant from WE/ME Foundation to screen blood samples and cerebrospinal fluid of an ME/CFS cohort for immune phenotypes and antibodies to various pathogens.
Her Yale Center for Infection and Immunity is focused “on unraveling the disease pathogenesis of post-acute infection syndromes (including ME/CFS) and making effective vaccines to prevent infectious diseases”. She believes the wind is shifting for all these diseases. “The wind is shifting already. People realize that these diseases have been ignored and that it is time to act. We cannot ignore these conditions anymore”, and indeed it slowly is.
When asked if long COVID will illuminate treatment possibilities for diseases like ME/CFS, Harlan Krumholz – a co-investigator with Iwasaki – said:
“There’s not any doubt about it. Our work is going to provide insights that we can quickly transfer to other poorly defined illnesses. Through our combination of deep clinical science and expertise with laboratory science, we can begin to make progress where we’ve been stymied in the past.”
With regard to post-treatment Lyme disease – a disease that shows remarkable symptomatic overlaps with both ME/CFS and long COVID, but has rarely been mentioned with respect to it – Beth Pollack and the Tal Research Group at MIT are focusing on long COVID and chronic Lyme disease in their MAESTRO study.
Whatever the post-infectious disease, basic research is needed to know how an acute infection can affect the brain, the immune system, the vascular and stress response systems, etc., long term. A Lyme mouse model, for instance, is helping to understand how an infection can affect the central nervous system. The results are similar to what we’ve seen in long COVID and ME/CFS: it’s probably not the bacteria itself but the inflammation from the infection that’s impacting the brain and other areas.
It’s these huge – but mostly unstudied – connections between these post-infectious conditions that prompted the Solve ME/CFS Initiative to begin a bold quest to create a post-infectious disease institute at the NIH. It’s an idea whose time has come.
That project, and others like The Infection Associated Chronic Conditions Understanding and Engagement (ICUE) Project, that bring these different diseases together are vital to our success.
Hitting Their Mark
These grants are hitting the mark. While everyone with ME/CFS wants their disease to get funding, and everyone with long COVID and post-Lyme Syndrome wants their diseases to get funding, what we REALLY want is for the field of post-infectious diseases itself to take off and funding for all these diseases to take off along with it. Demonstrating the connections between these diseases is the way to float all the different disease boats. In that regard, these funders couldn’t have chosen a better place to invest their funds.