+100%-

Geoff’s narration

Time magazine has been publishing its list of Top 100 most influential people on the planet for over 20 years. Four years ago it added Health and other other categories to the list.

Time Magazine - first cover

Time has been around for 100 years and is still chugging along. Here is its first cover. (Image by William Oberhardt (1882-1958), Public domain, via Wikimedia Commons)

Time said it spent months consulting sources and experts around the world to select the 100 most influential individuals in the world of health right now. One would expect to see pioneers in cancer, heart disease, dengue fever, and Alzheimer’s pick up awards, and they do. These are diseases that are well entrenched in the public consciousness and the medical infrastructure.

Then there are the outsiders. Long COVID is still a baby in the medical research field and chronic fatigue syndrome (ME/CFS) could probably get an award for the most well-known but least well-funded disease on the planet. Long COVID and ME/CFS awardees, though, didn’t just crack the Top 100 – people associated with them made up about 5% of the awardees. We crashed the big disease party!

That was a surprise and it makes the TIME100 Most Influential People in Health in 2024 awards an easy ME/CFS and long-COVID moment; i.e. a sign that things are turning for the better for both these diseases.

Some past possible ME/CFS moments have included:

  • MEAction’s Mayo Clinic breakthrough – in a come-to-Jesus kind of moment, the mighty Mayo Clinic reverses course, accepts ME/CFS as a major illness, and revamps its treatment protocols.
  • Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine emerges.
  • STAT Earpiece – this unique earpiece was designed specifically for diseases like ME/CFS, POTS, and other forms of orthostatic intolerance.
  • CDC ME/CFS Survey – ME/CFS is Much More Common than Thought, Says CDC

Chronic Fatigue Syndrome (ME/CFS) Awardees

Jaime Seltzer

Jaime Seltzer – Scientific Director of MEAction. (Image from MEAction)

Jaime Seltzer/MEAction – Leader – Postviral Patient Advocate

It’s inconceivable that an ME/CFS advocate would have even been on the longest of Time’s lists for potential inclusion into the top 100 influential people in the world of health even a couple of years ago. The inclusion of Jaime Seltzer – the scientific director for MEAction for their work with the Mayo Clinic – on this list shows how dramatically things – at least in some circles – have changed.

If your goal was to change as rapidly as possible how doctors in the U.S. understand and treat ME/CFS, targeting the mighty Mayo Clinic with its stellar reputation and its 7,300 physicians and scientists – might be the first thing you would attempt do.

Something was up at Mayo in 2020 when it dropped CBT/GET from its website. They accelerated in May 2022 when Mayo Clinic officials from the Rochester, Minnesota branch met with #MEAction to discuss ways to improve their treatment, research, and engagement with the ME/CFS community.

Those discussions were successful as #MEAction teamed up with Mayo to win a grant from the Society to Improve Diagnosis in Medicine to transform how people with ME/CFS were diagnosed and treated at the Mayo Clinic Rochester.

Then in April of last year came the really big news. #MEAction and Mayo had created a diagnostic and treatment algorithm that doctors at the Mayo Clinic campuses across the country will use to quickly get them up to speed on ME/CFS. It was clearly an “ME/CFS moment”.

A Major ME/CFS Moment Just Occurred at…The Mayo Clinic!

We hoped that MEAction’s work with Mayo would have legs – and it has – as the Time award stated that staff at Emory, Brown, and Georgetown are now working with #MEAction to improve ME/CFS treatment and education there as well. These are major steps forward that should continue to ripple outwards.

The Time Award constitutes an extraordinary moment for a disease long maligned as the “yuppie flu” and which still struggles to get even meager research funding. This year, however, Jaime Seltzer, MEAction, and ME/CFS sit next to pioneers fighting cancer, amyotrophic lateral sclerosis (ALS), and Alzheimer’s on Time’s Top 100 Health list. These are not diseases ME/CFS is usually associated with.

The fact that Time decided that having a breakthrough in how medical institutions simply approach ME/CFS was worthy of its award is telling. At least with Time Magazine, ME/CFS has made it into the big time.

Avindra Nath – Demystifying Exhaustion

Avindra Nath

Avindra Nath believes if you solve one postinfectious illness you’ll probably solve them all.

In another surprise choice, Avindra Nath – the clinical director of the U.S. National Institute of Neurological Disorders and Stroke – was awarded for his work in “demystifying exhaustion” in ME/CFS (thank god they didn’t say “fatigue”).

The award referenced Nath’s intramural “historic study” on a “long-ignored and mysterious condition: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)“. (ME/CFS wasn’t ignored this year :)). It’s remarkable to see Nath’s leadership of this small but intense study (17 ME/CFS patients – only 8 of whom finished both weekends) win this award. It suggests that the Time editors considered the NIH study to be one of the most significant studies in the medical field over the past year.

The Time Award stated that the study found, “people with ME/CFS have overactive and exhausted immune systems, perhaps because “bits and pieces” of an infectious pathogen linger in the body.” While it had its controversial points, the study was received well in the press and achieved its goals. (Yesterday, Nath led a symposium on the intramural study that cleared several questions up. A blog on that is coming up).

Time also noted that the study, “will be instrumental in pushing forward research and treatment trials focused not only on ME/CFS but also on other post-infectious illnesses like Long COVID”. Indeed, long-COVID patients can thank ME/CFS for paving the way for the similar long-COVID study that Nath is now engaged in.

Referring to post-infectious illnesses, Nath called long COVID, “a great opportunity (for all of them.) If you can crack one of them, I think we can crack all of them.” May it be so.

The NIH must be happy to see one of its leaders getting such a prominent media award, but there’s a jarring disconnect here. Its house researcher just received major recognition for leading a study on a disease that NIH continues to neglect. Maybe the NIH will get the hint – it can get major kudos (something every publicly funded institution loves) for good work done on ME/CFS – and find a way to step up funding.

Long COVID Awardees

Akiko Iwasaki

Yale’s Akiko Iwasaki won twice! Besides her long COVID work, she’s been a strong supporter of more work in ME/CFS. (Image from Yale University)/

Akiko Iwasaki – Double Award Winner – Too 100 Most Influential People Overall; Top 100 Most Influential People in the Health Field

Iwasaki won the Top 100 Most Influential People award for her work on long COVID. Her award was written, ironically enough, by Anthony Fauci, the former longtime leader of the NIAID, who after ignoring ME/CFS for decades, plumped for increased funding… after he retired. Iwasaki won the health award for her role in developing nasal vaccines and for her work in long COVID.

Iwasaki quickly made long COVID a major research focus and is a recognized leader in the field but with a difference. While some long-COVID researchers seem reluctant to acknowledge (let alone study) ME/CFS, Iwasaki early noted the similarities between long COVID and ME/CFS and called for more research.

She was the keynote speaker at the 2022 IACFS/ME conference, has participated in Solve M.E. webinars, and at the 2023 Keystone Conference Iwasaki rather boldly stated that the field, “needs to go beyond the spike protein” of coronavirus and understand the underlying pathologies that persist in long COVID and other post-infectious illnesses. Last year she received a $3 million private grant to study long COVID, Lyme Disease, and ME/CFS together.

Floating All Boats… Iwasaki’s ME/CFS, Long COVID and Lyme Disease Awards Promises New Insights into Post-Infectious Diseases

With Harlan Krumholz, Iwasaki is also studying post-vaccination illness. She’s a leader in every way.

Ziyad Al-Aly – Advocating with Research

Al-Aly and Eric Topol

Ziad Al-Aly and Eric Topol discussing long COVID.

A clinical epidemiologist and Chief of the Research and Development at the Veterans Affairs St. Louis Health Care System, Ziyad Al-Aly – a former air pollution researcher – has been a surprising and very welcome addition to the long-COVID research field.

With 20 publications on long COVID over the past three years, Al-Aly has published at a torrid pace. He’s used his access to vast amounts data at the Veterans Administration to produce seminal papers that indicate that having a coronavirus infection increases the risks of coming down with an astonishingly wide array of diseases and conditions.

Al-Aly has not confined himself to long COVID, however. He recently presented powerful testimony to Congress, arguing for more funding for all post-infectious diseases, and his and Eric Topol’s Science paper, “Solving the Mystery of Long COVID“,  asserted that federal funding should support, “a comprehensive portfolio of research in infection-associated chronic illnesses”, including ME/CFS. While doing so, they noted how, “disproportionately underfunded relative to the burden of long-term disability” the post-infectious field is.

Honorable Mention – Eric Topol – Scientific Translator

Topol didn’t win this award for his work on ME/CFS or long COVID – he won it for his pioneering work on artificial intelligence and medicine – but Topol’s COVID-19 work was noted and he’s been a strong advocate for both long-COVID and ME/CFS on his Ground Truths substack, his X account, and in his published work. I’ll count Topol’s win, then, as also a win for long COVID and ME/CFS.

It was a good day for ME/CFS and long COVID.

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