Twenty-twenty-three turned out to be quite a year. No, we didn’t solve long COVID or ME/CFS, but good trends emerged for both diseases. A strong focus on new treatments, two post-infectious/neuroimmune centers opening up, a new tool developed specifically for these diseases, plus MEAction’s work with the Mayo Clinic to revamp its approach to ME/CFS suggested, maybe for the first time, some real growth in the clinical space for these diseases.
While our big hope – the RECOVER Initiative – unfortunately continued to stumble, long COVID and ME/CFS seem even more tightly tied together at the end of 2023 than at the beginning. ME/CFS funding at the NIH is down, but the big CDC study suggesting that ME/CFS is 3x more common than previously expected could give us a boost there as the NIH Roadmap Initiative winds up.
Similarly, the emergence of “long cold” and several big, private grants to study post-infectious diseases together for the first time provides hope that a post-infectious “field” – a vital need for all these diseases – may be emerging.
Hopefully, over the next year, we’ll get some good news from Nath, the Roadmap will help ME/CFS to finally “crack” the NIH (at least a bit) and get more resources, RECOVER will “recover” from 3 years of disappointing results and become the leader we all expected it to be, new treatment options will continue to emerge and the ME/CFS/long-COVID/post-Lyme Disease/fibromyalgia fields will continue to merge and benefit each other.
The RECOVER Initiative
As it should, the $1.35 billion NIH’s RECOVER Initiative on long COVID gets its own subcategory. Once again, the news was not good, but let’s not pull the plug on the Initiative just yet though. Prominent researchers continue to applaud the work the Initiative is doing – giving us hope that it will come through in the end.
- Most Underwhelming Year – In its 3rd year of operation, the big RECOVER Initiative manages to publish only a few biological studies, leaving it the recipient of the “Most Underwhelming Year” award.
- Most Disappointing Clinical Trial Package… Ever (?) – hopes that the “mighty” RECOVER Initiative would put together an exciting panel of long-COVID clinical trials that might quickly provide relief were dashed when the Initiative’s conservative and even, at times, bizarre trial package was announced. The Paxlovid and the IVIG trials were, if rather obvious, good trials, but why RECOVER would spend its dwindling cash on cognitive retraining, on a probably rare sleep condition (hypersomnia), and an exercise trial boggles the mind.
- The “Better Do Better Next Year” Award – We keep saying “next year” and “next year” for the RECOVER Initiative, but time is starting to run out. With just a few biological studies published this year, RECOVER is not exciting anyone yet, and its $1.15 billion funding runs out in December 2024.
- Most Welcome New Infusion of Funds – Facing a funding shortfall and a great deal of criticism over its rather paltry treatment trial program, the RECOVER Initiative gets a $200 million shot in the arm. The huge question, of course, is what it will do with it.
- Biggest Continuing “What the Heck?” Moment? – Despite studies indicating that adults are more severely affected by COVID-19, and are much more likely to come down with long COVID than children, the struggling RECOVER Initiative still reports it plans to follow about 1/3rd more children than adults.
Long COVID, ME/CFS, and Fibromyalgia Research
Most Encouraging New ME/CFS Research Finding… – the WASF3 mitochondrial finding stood out this year. First, it introduced a possible new mitochondrial dysfunction. Second, the researchers drilled way down into the finding – including several animal studies – suggesting the finding may have legs. Thirdly, the fact that this extensive effort came from an Institute – the National Heart, Lung and Blood Institute (NHLBI) at the NIH – which has historically basically washed its hands of ME/CFS – suggested we may find help in unexpected places. Lastly, the NHLBI researchers were excited enough about the findings to already begin talking about a clinical trial – showing that if researchers have the resources, things can move quickly indeed.
Most Surprising Long-COVID Finding – a detailed and in-depth study suggests that high serotonin levels may be at play in ME/CFS. Both the Cortene and Metabolic Trap hypotheses proposed that high serotonin levels could be wreaking havoc in ME/CFS, but this is the first biological study in which they suddenly popped out.
Most Exciting New Diagnostic Possibility for ME/CFS – it’s easy and cheap and its proponents believe their Raman spectroscopy approach could provide an “objective, sensitive, and straightforward diagnostic tool that can therefore resolve the controversy concerning the nature of ME/CFS and…has the potential to make drastic impacts on patients’ quality of life”. Let’s hope!
Best Move Forward for the Post-Infectious Disease Field – The Steven & Alexandra Cohen Foundation’s $6.2 million grant to study “long Lyme” and other infection-associated complex illnesses such as ME/CFS at the Mt. Sinai Center gave the emerging field of post-infectious diseases a nice kick in the pants. The Foundation – which has trademarked the term “Ticks Suck” (:)) – is the biggest private funder of Lyme disease research in the country and made a smart move to include studying other post-infectious diseases in their grant. Because everyone visiting the Center will go through the same testing protocol, they’ll be able to compare and contrast these diseases in “unprecedented detail”. Yah!
- (Second prize – They were not alone. Akiko Iwasaki scored a $3 million grant to study both long COVID and ME/CFS. Nice!)
Cleverest Idea – The Open Medicine Foundation’s StudyME project makes it much easier for research and clinical trial studies to achieve one of their most difficult goals – finding participants. It takes just 5 minutes to sign up.
Biggest Joint ME/CFS Patient and Research Award – It was nip and tuck there for a while but in the end, UK ME patients came through in spades for the biggest ME research study in the world – the Decode ME gene study. Thanks to the over 26,000 participants who filled out the questionnaire and gave the study the numbers it needed to be a success. We are all grateful to you!
Pathogen of the Year Award – Of course, it has to go to the coronavirus. Any pathogen that’s been connected to an increased incidence of at least 30 diseases and conditions deserves our respect and attention – both of which it is getting.
Non-Coronavirus Pathogen of the Year Award – from the incontrovertible link to multiple sclerosis and several good studies finding reactivation in long COVID, this was a very good year (or a very bad year, depending on how you view it) for the Epstein-Barr virus. These findings should guarantee more research and hopefully better treatment options for this very impressive virus.
Most Interesting Possible Pathogen Trigger for ME/CFS – Speaking of pathogens, what about the human coronavirus NL63 (HCoV-NL63) bug? This cold virus usually produces mild symptoms but can put people into intensive care and it “provokes an eerily similar immune response to the SARS-CoV-2 coronavirus that causes long COVID. Because this coronavirus enters cells through the ACE-2 receptor, it could also help explain the strange ACE-2 association that appears to be present in ME/CFS, POTS, and long COVID.
Most Disappointing Funding Trend – despite being closely allied with the hottest disease condition in town – long COVID – NIH ME/CFS funding remains stuck at $13 million – an almost 25% drop from 2021.
Biggest Disappearing Disease – What is going on with fibromyalgia? Funding at the NIH is down to $13 million. While some good studies are underway despite looking just about every week for FM research studies to write about, few were found this year.
Most Anticipated and Still Mysterious Outcome – We all expected Avindra Nath to spill the beans on the results of the NIH’s Intramural study for ME/CFS at the NIH ME/CFS Conference but no…Except for Nath’s declaration that the project was a success, the outcome of the five-year intensive study remains a mystery.
The NIH-Funded ME/CFS Research Center Mystery – we know that Maureen Hanson’s NIH-funded research center will be renewed (that was well-deserved), but who will head up the other two ME/CFS research centers is a mystery.
The “It’s About Time” Award – A subset of ME/CFS patients have been reporting their illness started with a vaccine for decades, but the issue has never received much study. While studies show that the coronavirus vaccines can do a lot of good things (reduce risk of hospitalization/death, reduce risk of long COVID, reduce risk of autoimmune diseases), they can also have very negative effects in some people with ME/CFS/FM. With that in mind, it was good to finally see a post-COVID vaccine study come out and to know that more are on their way.
The Punching Above its Weight Award – goes to the small Simmaron Foundation Research team which, besides working on several ME/CFS animal models, uncovering a new mitochondrial dysfunction, and getting an NIH grant – also found time to get a Rapamycin clinical trial going.
Most Productive Long COVID Research Group – It’s got to be the UCSF group (Deeks, Heinrich, Peluso, et al.) and their LIINC long-COVID project. Since LIINC was launched in April 2020, it has interviewed over 800 participants, banked over 50,000 samples, and shared 20,000 of them with over 50 long-COVID projects. We are indeed lucky to have LIINC!
Best Research/Advocacy Finding – the CDC released a report, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022“, suggesting that ME/CFS is much more common – in fact, 3x’s more common in the U.S. than formerly believed. That would make it several times more prevalent than multiple sclerosis, lupus, and rheumatoid arthritis.
Best New Research Funder – this one is easy – it’s the PolyBio Foundation which quickly emerged to be a major funder of long-COVID studies as well some on ME/CFS. Check out the 20 projects it’s currently funding.
Best Deal in Town – for $9 a month, you can hear two ME/CFS experts – Dr. David Kaufman and Dr. Illene Ruhoy – discuss all things ME/CFS on their Unraveled Patreon podcast.
Best New ME/CFS Clinical Trial – The OMF’s LDN-Mestinon trial is doing a couple of great things; first, instead of testing the drugs apart, it’s combining them; secondly, it’s testing two drugs that are well known in the ME/CFS community but have never undergone adequate clinical trials leaving most doctors outside the ME/CFS community unaware of them. Third, because they’re investigating the heck out of the participants, we should learn now what buttons they’re pushing and what buttons they’re not. This is the kind of well-designed, potentially quite impactful clinical trial that we haven’t seen very often.
Best New Treatment Option? The Nicotine Patch – while the poll did not have that many respondents (@150), it was surprising, indeed, to see almost 30% of respondents report the patch was a “gamechanger” – a very high percentage for these polls.
Biggest Clinical Advance for ME/CFS – MEAction’s Mayo Clinic breakthrough – in a come-to-Jesus kind of moment, the mighty Mayo Clinic – with help from MEAction – reverses course, accepts ME/CFS as a major illness, and revamps its treatment protocols.
Most Remarkable Recovery Stories – Three Severely Ill Long-COVID Patients – Three Rapid Recoveries – Time will tell if monoclonal antibodies will pan out, but seeing them very rapidly return three severely ill long-COVID patients to health was just stunning.
Most Innovative Approach To Treatment (That Worked) – Data scientist and former ME/CFS patient, Efthymios Kalafatis, uses artificial intelligence to forge a treatment plan that works for him. Besides the nice recovery, the plan seems ahead of its time in its ability to foreshadow new developments in the field.
Most Helpful Measuring Stick – Ric Arsenau’s How to Decide Which Treatment to Try algorithm provides a nice way to assess treatment options. Health Rising is using it in all its treatment blogs.
Best Sign That Diseases Like ME/CFS, Fibromyalgia, POTS, and Post-Lyme Disease are Finally Catching on at the Clinical Level – Two Centers of Excellence – Metrodora and David Putrino’s Mt. Sinai Clinical Center – open up which focus entirely on these diseases.
Most Cofounding Departure – One of the co-founders of Metrodora, Laura Pace, leaves it shortly after it opens…
Strangest New Treatment Option – a synthetically produced blue dye??? In a year of intriguing treatment options (Pridgen’s triple antivirals, the nicotine patch, rapamycin, Guanfacine, green light glasses, and more), methylene blue – and the blue urine it can produce – has to stand out.
Most Innovative Patient-Led Effort – Gotta be Remission Biome. What an incredible story. Two professionals with ME/CFS chart out a plan to first wipe out and rebuild their gut biome, then they enroll researchers and doctors in their plan, and get funding for it. Very impressive! Follow them on X.
Most Welcome New Tool – out of the blue, the STAT Earpiece – designed specifically for diseases like ME/CFS, POTS, and other forms of orthostatic intolerance – which tracks upright activity, pops up.
Best Patient Contribution – you wouldn’t think we would talking about a “new symptom” or condition in ME/CFS at this point, but Patrick Ussher’s Polydipsia blog not only brought new awareness to an old and hardly discussed problem but also proposed a new reason for it, while dashing a longstanding psychological interpretation of it.
Most Welcome New Treatment Trial Approach – Proclaiming that he never wants to run out of treatments for his long COVID, ME/CFS, etc. patients, David Putrino eschews NIH funding and creates a clinical trial dynamo at his new Mt. Sinai center that is committed to testing, testing, testing new treatments.
The “It Was Staring Us in the Face Award” – Twenty years ago, studies suggested the blood clots and hypercoagulation were problems in ME/CFS, but those issues never got the study they deserved. Now that it seems clear that blood vessels permeate ME/CFS and long COVID, the new treatment approaches (triple-drug therapies) being proposed makes one wonder if we’ve been missing a potentially important treatment possibility for a couple of decades.
Most Intriguing New Clinical Trials – UCSF and LIINC begin a series of intensive experimental clinical trials in which they give small groups of long-COVID patients potential treatments such as monoclonal antibodies – and then test the heck out of them to learn about the disease. (Why is RECOVER not doing this in spades?)
Biggest Upgrade – Solve Together, Solve M.E.’s ME/CFS and post-infectious disease data platform now allows participants to track symptoms, connect wearables (Fitbit, Apple Watch), download reports for doctor visits, link electronic health records, and respond to short, infrequent surveys; plus, it gives researchers data they can use to learn about these diseases and gives them access to patients for studies.
The “We Should Have Seen it Coming” Award – If Dr. Pridgen was able to get duo antiviral therapy for fibromyalgia to the brink of a phase 3 trial, why would he not bundle his anti-herpesvirus protocol with Paxlovid to take on long COVID?
Biggest Uproar – The finding that having more uplifts – positive, uplifting experiences – moved the needle more on patients’ symptoms than pacing made sense to me, at least, given that both stress response axes (autonomic nervous system, HPA axis) are damaged in ME/CFS (and both regulate immune functioning) – but was not deemed helpful by some.
Biggest Loss – Beth Mazur, the cofounder of MEAction, passes. What a gut punch this was. I only met Beth a few times, but each time I was struck by her generosity and passion. Her passing highlights what a terrible toll these diseases can take on any of us. Read more about her here, here, and here.
Yummiest Project – Rachel Riggs’s ME/CFS Cookbook to provide nutrient-dense meals and desserts that allow people with food sensitivities to enjoy the full sensory experience of an excellent meal – which takes minimal preparation – just hits all the high spots! Good luck to Rachel!
Best New Name – It was probably inevitable, but I didn’t see it coming. Studies indicating that even common colds are producing ME/CFS/long COVID-like conditions have prompted the creation of the term “long cold”. That’s a good sign, as we want to see the “long” designation applied to as many pathogens as possible. Let’s hope that studying the incidence and causes of “long cold” (e.g. ME/CFS) becomes a thing.
The Most Pregnant-with-Possibility Initiative – the NIH Roadmap for ME/CFS – created and produced from within the NIH is designed to lift ME/CFS’s standing at the NIH, the biggest medical research funder in the world. Will it help us finally crack the NIH and get some decent funding? Time will tell. The Initiative winds up this month.
Boldest and Most Far-Sighted ME/CFS Advocacy Initiative – Solve M.E. has always had its eye on the long game. It quickly co-founded a long-COVID/post-infectious disease coalition and worked to score funding for long COVID. Now it’s really going for the gusto and working towards an NIH Institute of Post-Infectious Diseases we can all fit into.
Most Evocative Display of the Costs Post-Infectious Diseases Wreak on Those Who Have Them – Health Rising’s Lives Interrupted. Check out the 39 people who have used the Lives Interrupted Project to make the economic, career, and relationship costs imposed by ME/CFS, fibromyalgia, long COVID, post-Lyme disease, vaccine-induced illness, and post-cancer fatigue – and post your own.
The Most Off-Putting and Just Weird Moment (and the recipient of the … “The Giving Up Before You Get Started Award“) – Several public health officials call for the medical research field to give up studying long COVID, ME/CFS, and similar diseases. Has the medical research field ever seen such a thing? It’s just more proof, if we needed it, that these diseases, more than any others, bring out the weirdness in the medical field.
The Last Week of Health Rising’s End-of-the-Year/Beginning-of-the-Year Donation Drive!
Thanks to the hundreds of people who have supported us as we round into the last week of our drive.
While neither ME/CFS nor long COVID was solved this year, progress was made in the research and treatment realms and overall, the energy in the fields seems good. Despite that funding for ME/CFS and FM continue to lag, Health Rising will cover all of it as we head into 2024. If that supports you, please support us in a manner that works for you. 🙂
HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT