Mods, feel free to move to most appropriate. 4/18, Neurology Today: 'Are Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Part of the Same Disorder? A New NIH Initiative Aims to Find Out’ Some excerpts: 'A study of 17 patients with myalgic encephalomyelitis/chronic fatigue syndrome revealed that there is an absolute biological basis for the condition. Researchers say that exposure to an infection leads to concomitant and persistent immune dysfunction and changes in gut microbiome, which results in decreased concentrations of metabolites that then impact brain function.’ '“We believe these are virtually the same disease, although there are some differences, and they should be managed and studied in multidisciplinary clinics focused on post-infectious syndromes,” said lead author Avindra Nath, MD... ''We hypothesize that these changes are driven by antigen persistence of the infectious pathogen.” "Hector Bonilla, MD, clinical associate professor of medicine at Stanford University and co-director of Stanford's ME/CFS and Post-Acute COVID-19 Syndrome Clinic, called the study “extremely important.” "'Dr. Nath's group has begun recruiting study participants for a clinical trial of intravenous IG (IVIG) in long COVID. “In order to bring treatments to people with ME/CFS quickly, we need to do trials in long COVID, because there are so many of them, they are closer to the infectious process, and we know exactly what the infectious process was,” he said.”
Connecticut Public Radio: ''We need a moonshot for long COVID': What we know (and don't know) about the illness' Ft. Akiko Iwasaki & Lisa McCorkell: Some notes from this segment: (26 minutes) "Recently I want to hear a thought that, NIH Director Monica Bertagnolli recently stated that active COVID virus can be found in bodies months post-infection, and some research hypothesizes viral persistence as a driver for Long COVID, as well as other post-viral illnesses like Myalgic encephalomyelitis or chronic fatigue syndrome. Can you talk about the significance of what Monica mentioned, from your perspective?" Iwasaki: “There are roughly 4 possible hypotheses that can describe Long COVID…it is a heterogenous disease….viral reservoir or replicating virus that persists is one of the 4 hypotheses. There is numerous evidence for this…Dr. Amy Proal has published a very nice review demonstrating how many of these tissues are involved in harboring these kind or remnants of viral RNA..' "The three other hypotheses include autoimmunity….tissue damage and dysfunction…we see evidence of reactive microglial in the brain..that could lead to neurocognitive impact…we see evidence of latent herpes reactivation…these 4 possible root causes could be driving Long COVID” “There is not enough funding to do proper large-scale studies on Long COVID…we still need sufficient funding to do large studies such as randomized clinical trials to better understand what drugs can be helpful for people with Long COVID.." (Part 1)
(Part 2) (33 minutes) “Earlier, Lisa spoke about the neglected illnesses that are a part of Long COVID." Iwasaki: “Lisa is absolutely right about this. There is very little knowledge base that is taught in medical school to doctors to inform them about these post-infectious syndromes, which is known to occur after an encounter with many distinct pathogens…COVID-19 is the latest to join this list..that link to many very similar outcomes…Medical education on these is a much-needed effort." “There will be a large trial happening from Dr. Wes Ely’s group, an anti-inflammatory called barticinib, will be tested on people in Long COVID. There are a lot important biological drugs that can be used to target these root cause disease drivers, it would be a waste to not investigate these in a rigorous scientific manner." “There are some experimental drugs that are being tried in animal models that are showing some promise…to really target the core problems that’s happening within the central nervous system.” “I don’t want to promise anything, but I just want patients to know that so many of us are working so hard to try to understand the disease process and to try to come up with better diagnosis and treatment…I think we can come to a better understanding of how we can diagnose and treat Long COVID, ME/CFS, and post-Lyme disease syndromes and many other post-acute infection syndromes."
4/19: InvestigateTV+ Season 1; Episode 115: “..we go in-depth to see what is being done to help doctors understand long covid” Features interviews with Walter Koroshetz, Michael Sieverts, Cynthia Adinig, Ziyad Al-Aly. About a 9 minute segment. Some notes: Dr. Walter Koroshetz: “It’s probably one the biggest medical mysteries that I know of.” Host: “The NIH has faced criticism from some patients..Michael among those who feel the agency needs to pick up the pace.” “How do you respond to that criticism” Koroshetz: “I agree with them. I really do. I really wish we were moving faster..” “What is the solution then?” Al-Aly: “three things: scale, to match the problem. Urgency, because people really need treatment yesterday. And coordinating agent, because no matter how hard we work, if you don’t have a captain of your team or if you don’t have a quarterback, your chances of winning that game are probably not very good.” Michael Sieverts: “My biggest frustration is just how limiting it is. Your life has to be so constrained in order to just manage the day.”
NYT: 'The N.I.H.’s Words Matter, Especially to Long Covid Patients' by Zeynep Tufekci Excerpts: 'I reached out to the N.I.H. The answer turns out to be mundane. Dr. Bertagnolli said she “misspoke” and had “meant to say ‘viral components’ rather than ‘live virus.’ 'The N.I.H. also confirmed to me such remnants have not yet been shown to correlate with long Covid symptoms.’ 'Viral remnants may still play a role — maybe only some people are sensitive to them — or maybe leftover viral components are common and harmless. The N.I.H. also told me this is “an area of active investigation,” as it should be.’ 'It’s good that Dr. Bertagnolli is so engaged with long Covid, and misspeaking during an interview is human. Hopefully, the institution keeps in mind that suffering patients are hanging on their every word.'
Great, the new director can't distinguish live virus and viral fragments. Sure doesn't inspire confidence in her or NIH. Thanks to likes of her, LC is now going through the same phase that ME/CFS has went through for decades and anti-viral treatment is again in vogue.
…I mean I’m as hard on the NIH and leadership as the next person but that seems a tad aggressive in that line of thinking (but we’re all allowed our own thoughts - and maybe you have knowledge of something Bertagnolli specifically did that I don’t have access to, which is entirely possible).
If any are interested in viewing, I had also e-mailed NIH RECOVER after Monica’s public interview with MedPage Today, asking if the NIH Director was referencing new data we were not privy to. Here is that response today. "Thanks you for reaching out. Dr. Bertagnolli indicated she misspoke and meant to say viral components rather than live virus. SARS CoV-2 viral components (such as RNA and viral antigens) can be found in a subset of patients many weeks to months after acute COVID. These viral components may indicate the potential presence of persistent virus (or “viral reservoirs”). The viral components may be a stimulus for ongoing immune dysfunction and are hypothesized to be a potential cause for some of the symptoms seen in Long COVID patients. However, the presence of these viral components has not yet been shown to definitively correlate with Long COVID symptoms. These are important areas of active investigation. Some studies that may be helpful are listed below: https://pubmed.ncbi.nlm.nih.gov/37452829/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10159620/ https://www.nature.com/articles/s41590-023-01601-2 Sincerely, RECOVER Initiative Inquiries Team”
Via Marc-Alexander Fluks U.S. Federal Register: Medicare Program: ME/CFS and FM Source: U.S. Federal Register Vol. 89, #79, p 30448 Date: April 23, 2024 URL: https://www.federalregister.gov/doc...ge-and-the-medicare-prescription-drug-benefit https://www.govinfo.gov/content/pkg/FR-2024-04-23/pdf/2024-07105.pdf [A Rule by the Centers for Medicare & Medicaid Services] Medicare Program; Changes to the Medicare Advantage and the Medicare Prescription Drug Benefit Program for Contract Year 2024-Remaining Provisions and Contract Year 2025 Policy and Technical Changes to the Medicare Advantage Program, Medicare Prescription Drug Benefit Program, Medicare Cost Plan Program, and Programs of All-Inclusive Care for the Elderly (PACE) -------------------------------------------------------------------- AGENCY: Centers for Medicare & Medicaid Services (CMS), Office of the National Coordinator for Health Information Technology (ONC), Department of Health and Human Services (HHS). ACTION: Final rule. SUMMARY: This final rule will revise the Medicare Advantage (Part C), Medicare Prescription Drug Benefit (Part D), Medicare cost plan, and Programs of All-Inclusive Care for the Elderly (PACE) regulations to implement changes related to Star Ratings, marketing and communications, agent/broker compensation, health equity, dual eligible special needs plans (D-SNPs), utilization management, network adequacy, and other programmatic areas. This final rule also codifies existing sub-regulatory guidance in the Part C and Part D programs. DATES: Effective date: These regulations are effective June 3, 2024. (...) A. Amending the Definition of Severe or Disabling Chronic Condition (...) Upon review and deliberation, the Panel identified the following 22 chronic conditions as meeting the statutory criteria: (...) 15. Neurologic disorders: (...) Fibromyalgia, Chronic fatigue syndrome, (...) We proposed to codify the list of chronic conditions created by the Panel as part of the definition of severe or disabling chronic condition at paragraph 422.2. The proposal took into account the changes recommended by the Panel to the list of chronic conditions that are currently used by CMS to approve C-SNPs. These changes include: (...) * Adding fibromyalgia, chronic fatigue syndrome, and spinal cord injuries to the Neurologic disorders conditions category; (...) Severe or disabling chronic condition means, for the purpose of defining a special needs individual, the following co-morbid and medically complex chronic conditions that are life-threatening or significantly limit overall health or function, has a high risk of hospitalization or other significant adverse health outcomes, and requires intensive care coordination, and that which is designated by the Secretary under sections 1859(b)(6)(B)(iii)(II) and 1859(f)(9)(A) of the Act: (...) (15) Neurologic disorders: (...) (viii) Fibromyalgia. (ix) Chronic fatigue syndrome. Xavier Becerra, Secretary, Department of Health and Human Services. BILLING CODE P BILLING CODE C -------- (c) 2024 U.S. Federal Register
WBUR, 4/18/24: 'Bernie Sanders proposes new program aimed at researching long COVID therapies' 'We hear more about the pitch and the scale of long COVID from STAT's chronic disease reporter Isabella Cueto.’ Excerpts/transcribed: From Isabella: '...it's been what many have called a mass disabling event. For the first time, we have the scientific knowledge and tools to see in real time what happens when millions of people are infected by a new virus, how does the immune system respond. It's made all these patients who have been sick for a long time, with conditions like ME/CFS, which is Myalgic Encephalomyelitis slash Chronic Fatigue Syndrome, which causes similar symptoms to Long COVID say hey, this could be our moment. There are a lot of overlaps in conditions other than Long COVID. And so, patients are saying there's a whole new group of people who have these symptoms after infection, it's a good time to understand why that happens and how to treat it. There's no approved Long COVID treatments, just like there's no approved treatments for a lot of these other diseases. I think it's also an attitude shift and a recognition that there are a lot people that have had their lives totally changed by these diseases that are under recognized and underfunded.” "People have what's called post-exertional malaise...after taking a shower or cooking a meal, they need to rest for hours, just to recoup that energy...it's a very severe degree of fatigue that we are talking about...it's millions of people that are dealing with this.."
@Dolphin's post re Medicare rule on chronic disabling illnesses I would like to know what definition of chronic fatigue syndrome CMS is using and if the rule also applies to ME....
But he's their quarterback.... I'd have more faith in Tom Brady running studies tbh. At least he'd likely leave the science to the scientists. Spoiler I know very little about Tom Brady besides him having been a quarterback
I have no idea, and I doubt most of the folks who are making these changes to the Medicare rules have any idea of the complexity of the issues with diagnostic criteria for the terms ME, ME/CFS, CFS, etc. However, if I had to guess, I'd say that since this is a US government agency then they probably use the diagnostic criteria used by the CDC for ME/CFS: (it's based on the one in the 2015 IOM report) https://www.cdc.gov/me-cfs/pdfs/interagency/What-are-MECFS-Symptoms_508.pdf https://www.cdc.gov/me-cfs/symptoms-diagnosis/diagnosis.html
Mods, feel free to move The Hill: 'Sanders’ long COVID funding bill misses opportunity to aid a similar chronic condition' By Maureen Hanson and Hillary Johnson "We ask that Sanders specifically name ME/CFS in his bill and include a generous budget for ME/CFS research…” "We think that’s a serious mistake since, by law, if ME/CFS is not directly specified by name in the bill, NIH will have a mandate to fund long COVID to the exclusion of ME/CFS, a viral illness that arrived decades before SARS-COV-2. Medical ethics and economic realities dictate that the millions of unwilling members of the ME/CFS community can’t be put on a shelf and abandoned for yet another decade." "We appeal to Sanders to include in his bill substantial funding for what we must now call “ pre-pandemic ME/CFS” and specify a budget commensurate with this disease’s toll. Hundreds of millions more dollars are needed to restore health to the millions who are missing their previously productive lives. It’s long past time for Congress to address a major chronic illness that does not go away on its own, causes unspeakable suffering and threatens everyone.”
Thanks for posting that link! I could not figure out how to write an email with input for the Senate Health, Education, Labor, and Pensions (HELP) committee. And today (April 23) is the last day to submit feedback on the bill. So I simply wrote, "Please include ME/CFS in the Long COVID moonshot bill" and included this link.
Such views may be unpopular with some in the long Covid community if this message is anything to go by
@Dolphin I’m sure you already know some of the individuals that are a bit more inflammatory in the LC community, so I’ll only say just be careful of what inventory of accounts you are drawing from (assuming you know the background on LCAP etc.)
