“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
Yale’s Akiko Iwasaki, a champion for the study of all post-infectious diseases – received some big private donations for ME/CFS, long COVID and post-treatment Lyme disease.
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.
ME/CFS patient, Carole Sirot, gave Iwasaki $1 million to look for a biomarker.
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.
Participate in Lives Interrupted – and help illuminate the costs of these neglected diseases
- Please help bring awareness to the costs of these conditions by telling your story on Health Rising’s Lives Interrupted program
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.
Hi Cort – great news here. Iwasaki is not just a world-class scientist, she’s just a nice person. I’m part of the Yale LISTEN study and it’s very patient-centered and inclusive. We have monthly calls where we get to ask her and Krumholz questions directly. How many studies can boast of that kind of patient access?
One correction – Dr. Krumholz’s first name is Harlan, not Arthur.
Looking forward to what this research will yield!
Can others join the listen group at this point?
I believe so: https://medicine.yale.edu/ycci/listen-study/
They are also still looking for healthy controls, if you know anyone who might be interested
Good to hear. She sure seems like a really grounded and nice person. (I hope that Harlan doesn’t take offense in the off chance that he read the blog :))
He’s very chill as well, so I doubt it 🙂
And I confirmed that the Yale donation article isn’t online anymore. Perhaps one of the donors didn’t want so much publicity? Who knows.
Dr. Iwasaki *is* a champion! She is so intelligent and curious, and explains her research so clearly that no-one can possibly misunderstand.
I hope policy makers and doctors hear her.
Thank you for covering her important work & her well-deserved awards!
Thanks!
I see a lot of people patting themselves on the back. I wonder how has the life of the average Long Covid/ME/Lyme patient improved based on these “breakthroughs”?
Probably not that much. I think that many people are probably getting a bit better reception at their doctors office and probably don’t get that much help with treatments. Of course, even people going to ME/CFS experts don’t always get helped that much. (we have a doctor review program coming up).
I think it really takes looking at what a) where we are coming from and b) what Carole Head called the trajectory or the long arch of progress. We’re coming from a very low point – it wasn’t that long ago that the NIH was providing just $6 million/year in funding, ME/CFS was roundly scowled at in many doctor’s offices, and has been hardly taught in medical school – resulting in a huge doctor and nurse population that needs to be educated. There is a lot of work to do and it’s going to obviously take time to filter down to the ME/CFS community at large.
Treatments tend to come last and be built on research – so it is very good to hear (at least for me) when respected researchers and doctors outside the field like Iwasaki, Krumholtz, Putrino and many others acknowledge ME/CFS and advocate for it. The most powerful thing that can happen is simply for the word that ME/CFS is a real and serious disease which it would benefit researchers and doctors to know to spread and spread.
The long COVID connection is opening up new treatment possibilites, a lot more research and much more recognition. I’m banking on this connection opening up new possibilities for health and recovery that wind themselves down to the doctors office. With so many eyes on this we could uncover some pretty juicy treatments pretty quickly.
I recently talked with an ME/CFS expert who could be retiring but who said she was so excited about what’s happening that she’s going to stick around.
So, I try and look at this from a long arc. Things are gathering. Hopefully a kind of underground tsunami of collaborations, connections and research is building and we’ll see its fruits sooner rather than later.
Love that you have a dr review program coming up! I have wasted months waiting for what I thought were appointments with long Covid experts, to leave with no help. BUT I finally have an AMAZING doctor! Having a resource to see who helps and who to avoid would be so helpful for new ones with the illness.
Does anyone know where I can find the article mentioned here, “ME/CFS, Long COVID, and Chronic Lyme Disease Research Aided by $3 Million in Donor Gifts to Yale School of Medicine?” I would love to read it and potentially share it. When I google it, there is a search result hosted on the Yale Medicine website, but the link doesn’t work. It seems as though Yale took it down?
I linked to it and then the link broke and I don’t know what happened.
Hey!
The collaboration of Prof. Iwasaki and Polybio was funded by WE&ME Foundation (formerly TEMPI Foundation, website: weandmecfs.org) with the Johadamis Grant. You mixed that up a bit in your piece. Thank you.
Thanks Felda. I had never heard of the WE/ME Foundation before – so this provide the opportunity to say a bit about them. Once again, I am struck about how much I don’t know about this field.
The WE/ME Foundation is an ME/CFS Foundation established in 2020 by the Ströck family and is situated in Vienna, Austria, where the family is renowned for their “Ströck” bakeries, which have delighted generations with their baked goods.
The Ströck family’s journey has been profoundly influenced by the impact of ME/CFS, shaping the essence and purpose of the WE&ME Foundation with unwavering determination. Two brothers, Christoph and Philipp Ströck, both affected by ME/CFS, guide the foundation’s mission. Christoph, the younger sibling, was diagnosed in 2016 after years of illness, and his condition worsened due to misconceptions surrounding ME/CFS. In 2018, Philipp, the older sibling, also received a diagnosis.
The family’s firsthand experience revealed the scarcity of doctors with expertise in diagnosing and treating ME/CFS. Over the years, the Ströck family has come to realize the significance of the grievances surrounding social security and support for the millions of affected ME/CFS patients.
The ongoing shortage of professionals in this field has led to patients being left to navigate their journey for diagnosis and necessary assistance independently, a situation that frequently contributes to irreversible deterioration in patients’ health. In many cases, they are unable to return to their jobs, leading to a lack of social security support. The situation patients and their loved ones find themselves in on top of the reality of this cruel illness are entirely unacceptable.
Initially self-funded, the foundation now strives to raise funds and awareness for research to improve the situation for patients and their loved ones.”
https://www.weandmecfs.org/about
Their research projects
https://www.weandmecfs.org/research
What a great Foundation! Thanks so much to the Strocks!
And I think it was Christoph Ströck who approached Prof Iwasaki and brought ME/CFS to her attention.
Prof Iwasaki is a living legend. This is an interview she did recently with Dr David Tuller.
https://youtu.be/ASaqfaNguC4?si=eOCV_DCxbD0Hq-5o
Nice! Didn’t know about that! Thanks, Tracey.
I think it’s time to forget public funding and their agenda based exercice studies and their pure wasting of tax payers money and focus on private funded studies and AI which can do much more for a fraction of a cost.
I think it’s time to face the truth: public funded studies are not even meant to find anything. Maybe I’m a bit pessimistic but when we have all seen what they have(n’t) done during the years, I think it is quite obvious.
I agree. It’s not the researchers it’s the institutional expectations and requirements. Praying we get answers sooner than later with the private monies.
IF ME/CFS funding from the NIH is dropping from $17 million to $13 million next year, that doesn’t bode well for the big announcement they’re releasing on Nov. 11th. If they were planning a follow-up study surely they would have budgeted for it.
A big announcement! Interesting… I’ll bet it will be a good one. There is some good stuff going on at the NIH – the Roadmap – a big effort! is underway and there’s the Conference at the end of the year.
I was surprised to see the drop. I wonder if some researchers are turning to long COVID instead of ME/CFS or perhaps this is just a temporary dip – I hope so.
The announcement is the results of their 6 year study. Hopefully it will be more than the one they released on Sept. 12th.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10497138/
Didn’t like the ‘unacceptable burden’ sentence
“….due to the complexity of ME/CFS symptoms, multiple assessments may be required, presenting an unacceptable burden for researchers, clinicians, and persons seeking diagnoses.”
Did you see this from the CDC? Jaime Seltzer highlighted it on Twitter/X recently.
https://www.cdc.gov/ncezid/what-we-do/our-topics/chronic-symptoms.html
Unacceptable burden? Good lord….
Does anyone have a link to the Nov 11th announcement?
I’m sorry but I’m having trouble finding the link. I’m pretty sure it was about a deep dive NIH study that began in 2017. The article mentioned that results had been delayed several times and was finally ready. Not sure if it’s awaiting peer review. I thought the following paragraph was linked to it, and hope it’s more than the 3X funding. I misread the date, as you can see below. It should be announced today, which makes me wonder if it was just about funding. The NIH’s 6-year study is due out soon though, right? Perhaps I incorrectly attributed the paragraph below as its release. If so, I’m sorry to get everyone excited, The following was from OMF:
“We’re bubbling with excitement and are almost ready to share some big news. It’s something that will take a big step forward in our mission to end ME/CFS and Long COVID. We can’t say what it is yet, but you’ll want to be the first to know. Stay tuned as we will announce it on November 1!”
Thanks for checking! I think you’re close – that study should be out soon 🙂
After the very high WASF3 proteins findings in muscles (confirming Mito dysregulation) of ME patients (found by NIH oncology researchers at NIH!),
I went & had a look at the Nath&Wallit “trial” (started 6 yrs ago).
Why did I look? Bc they both were very quick to have their say (or get their spot in the limelight?) after the WASF3 findings were published.
“Their” trial only mentioned “CPET” on the NIH site.
And it wasn’t finished at all!
6 yrs to do a CPET trial of 50 patients?!
That’s where the money is going?!
All the while they did NOTHING with the 2011 study which showed 11 genes (wasf3 among them) were ‘off’ in people with ME.
They now state this 2011 genetic study was an ‘obscure study’ from Suzanne Vernon.
No it was not!
The 2011 study was a fine tuning & pretty rigorous study of Vernon CDC data (2006).
And it did NOT come from their “corner”. (Again …)
To me (following this saga for 2 decades) it seems they do NOT know what they’re dealing with, or what they’re doing.
If they do know what they’re doing, one can only conclude they are purposely ignoring real & important findings.
Funding is low & when it goes to NINDS NOTHING gets done properly.
They could have done sth with the genetic findings, or with Neuro inflammation scan techniques, or immune dysfunction, qEEG brain connectivity loss, … you name it.
The BIG issues at the core of ME.
All of a sudden there’s an oncology branch within NIH that shows ‘hey! PwME have very high WASF3 levels in their muscles! This is not good.”
And there they were … Nath & Wallit.
“Oops! Quickly dust off our ‘own’ 6 year old project. Where do we stand with it?”
I even doubt they knew the answer.
Isn’t it strange important findings never come from NIH ME assigned researchers?
They come from others.
The 2011 genetic study.
The 2023 WASF3 muscle finding.
Years to decades … lost opportunities. Lost lives.
Assuming this is the same project, google Brian Vastag’s detailed updates on the NIH project which should answer many of your questions, he’s a participant and journalist
Big announcement? Could it be the study of Nath Avindra. I hope soo!
I know a lot of us were hanging our hopes on Long Covid providing answers to ME/CFS. I have had ME/CFS since the early 1980’s and caught Covid in August at a national convention. After a month, I tested negative and thought all was well. Wrong. I developed a-fib and high blood pressure. I quickly learned that this is not uncommon. Our CPA told me about two of his younger clients who run marathons… that is, until they got Covid. They had the same heart symptoms I have and it has taken a year for them to recover. From my perspective, ME/CFS and long Covid are not the same.
Just curious, do you have a link to this Nov. 11th announcement you are referencing? Or did I miss it..
I wonder if they consider rhabdomyolisis causes and treatment? This is associated to physical trauma, infections, drug injury, genetics.
Reading this article makes me wonder if the clues are right under their nose.
https://ojrd.biomedcentral.com/articles/10.1186/s13023-015-0264-3
I tested for Rabdo privately I am Negative
I am really proud of the Else Kröner Fresenius foundation independent jury for zeroing in on this topic. The prize awarded 2.5 Mio EUR to Iwasaki.
The foundation produced an award video about Akiko Iwasaki which is great because it prominently features ME/CFS towards the end, twice! 🙂
https://m.youtube.com/watch?v=6vGkoaIB7Qw
Can’t hurt the cause either that Akiko Iwasaki has been voted onto the board of Roche (big Swiss Pharma) for the current term. Don’t know the motivation for this (might be immunology/the nasal Covid vaccine she has also worked on), but seems an encouraging sign given what research she’s known for. Would not be suprised if at least some awareness raising happened between board chairs..
Cort! I’ve got another good lead for you! I just ran across Esther Landhuis who is a medical journalist extraordinaire.
I think you will like what you read;
https://www.estherlandhuis.com/home
Also having ME/CFS she has put her considerable research talents towards finding answers.
We would be well served if post-Lyme were called long-Lyme since there is substantial evidence of persistent infection in at least some cases. I draw your attention to a recent publication by R.I. Horowitz et al on the use of quad dose dapsone combination therapy to put those with long-Lyme into remission.