Yeah I wouldn’t blame any for having a superficial view on all-things LC, there’s just a subgroup in the community that’s really hostile to various happenings (like ME/CFS inclusion), that extends to other pockets of the LC community (harassment of well-known advocates etc). I’ve blocked / muted most, in efforts not to share the spite that’s generally spewed.
And if I can put some perspective on the whole LC vs ME/CFS split, on the Long Covid sub-reddit, it used to be a constant controversy and over the last few months this has mostly disappeared. I rarely see it anymore. It still comes up, but there is barely any separation anymore in terms of how what the communities are focused on. Most of the die-hards are the same that sprung up a few years ago, and they're just a fringe. There will always be malcontents. About everything. For every great idea, there are people who are convinced that it would be disastrous. And for every disastrous idea, there are people who will never deviate from firmly believing that it's the only way to go. We can't please everyone because of how human intelligence works: at scale, we try everything, all the ideas, all the paths, including the wrong ones, especially the wrong ones, and it all works out about as randomly as people exploring an unknown land, people just stumble on something that works while the wrong paths just die out.
There are enough studies out now showing that at the very least, ME/CFS and LC are very closely related, even if they are not exactly the same, and that progress in one is very likely to help the other. I get it that LC patients look at what has happened to us, and not what anything to do with us to try avoiding been mistreated and abused in the way we have. But denying the history of this won't save them, and I think we should combine resources for our mutual benefit.
The same people that did that shit to us have already snuck in the back door for LC. Even if they think the diseases are different, there's still something to be said for learning from us about how these people work.
Just sharing from Isabella Cueto this week in STAT News, with appearances from Dysautonomia International & RTHM. 4/23/24, STAT News: 'Telehealth startups see an opportunity in long-ignored, complex chronic diseases’ Excerpts: 'All that frustration looks like opportunity to a growing number of new telehealth companies built around underserved chronic diseases. The companies are betting that telemedicine makes practical sense for many patients whose conditions make it hard to get in-person medical care.’ 'Take someone with myalgic encephalomyelitis (ME/CFS), for example, who has what feels like an exhausting, everlasting bout of the flu. Being able to phone a doctor is a way to preserve energy. For someone taking immunosuppressive drugs, avoiding the doctor’s office could protect them from an infection. And for patients with conditions like POTS or Ehlers-Danlos syndrome, a video chat can be a workaround on days when mobility is difficult’ 'To him, it’s important that patients’ needs are captured in insurance billing codes, “because it’s that data that informs policymakers, investors, the NIH research priorities,” he said.' 'New companies, riding the wave of broad telemedicine adoption and looser regulations during the pandemic, have sprung up around chronic care. But in a patient population that’s long been ignored by traditional medicine — due to lack of awareness, but also resources and time — telehealth startups are figuring out whether they can handle things differently, and build a sound business model.’ 'RTHM, a telehealth startup aimed at people with ME/CFS and long Covid, has similar ambitions. CEO Jennifer Curtin, a physician, wants her company to “pick up any patterns that humans can’t recognize but a computer could.” This could be particularly useful for finding the right treatments, since there are no approved drugs for ME/CFS or long Covid, she said. Sophisticated use of artificial intelligence could someday offer suggestions based on a patient’s lab results and other health data’
Me and @yannlk have written a lot about the group of patients propagating these kinds of views in this thread: https://www.s4me.info/threads/usa-long-covid-action-project.38193/#post-528390 We're talking about a highly abusive and frankly slightly extremist fringe group within the Long Covid community. They are best ignored.
Edited based on @Dakota15's comment. When people like Dr. Koroshetz refer to ME/CFS or Long COVID, or any similar, poorly researched condition as a "mystery", it implies, at least to me, that the person believes that the problem is *just* a hard medical problem to solve when in reality the lack of urgency and resources invested into the problem is really what's holding things back.
@wingate not to be the correct police but just making sure you knew he was technically referencing Long COVID in that interview
The Department of Defense has "announced the approval of a clinical trial award of up to $13.1 million from the U.S. Department of Defense (DOD) to evaluate Bezisterim (NE3107) for treating neurological symptoms associated with long COVID." The funding is going towards a private pharma company. The trial will start in early 2025 and will include 200 patients over a three-month period. In terms of mechanisms - "Bezisterim, an anti-inflammatory and insulin sensitizer that crosses the blood-brain barrier, targets the underlying mechanisms believed to drive long COVID symptoms, including chronic inflammation and metabolic dysregulation." Full article: https://www.proactiveinvestors.com/...defense-for-long-covid-treatment-1046368.html _________________ Post copied to BioVie Awarded up to $13.1 Million in Funding from U.S. Department of Defense to Evaluate Bezisterim (NE3107) for the Treatment of Long COVID
A follow-up interview following the recent STAT News feature with Isabella Cueto. WBUR (public radio in Boston): 'How telehealth companies approach treating complex, chronic diseases'' 'Telehealth companies are trying to bring virtual care to patients with challenging, hard-to-diagnose chronic conditions like long-term COVID, myalgic encephalomyelitis and postural orthostatic tachycardia syndrome, or POTS..'
TIME 100 Health was released today: 'In the wake of the pandemic, a new era emerges—marked by fresh discoveries, novel treatments, and global victories over disease. These are the most influential people in health in 2024.' Jaime Seltzer: "Postviral Patient Advocate": "Through #MEAction, Seltzer is helping to spearhead a major campaign to improve ME/CFS education, diagnosis, and treatment." Joining Jaime on this TIME 100 list includes Ziyad Al-Aly, Akiko Iwasaki, Avindra Nath and Eric Topol. TIME 100 Health: 'Ziyad Al-Aly: Advocating with research' "All of these efforts are guided by Long COVID patients, Al-Aly says. “I feel connected at a visceral level,” he says. “People are asking us [to do this work] and I feel a sense of responsibility.” TIME 100 Health: 'Akiko Iwasaki: A better booster' ‘..dovetails with Iwasaki’s other focus: postinfectious illnesses like Long COVID, which she began researching during the pandemic & now studies as the director of Yale’s Center for Infection and Immunity’ TIME 100 Health: 'Avindra Nath: Demystifying exhaustion' '..interest yielded a historic study—perhaps the most extensive ever conducted—on a long-ignored and mysterious condition: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)’ ''The team found that people with ME/CFS have overactive and exhausted immune systems, perhaps because “bits and pieces” of an infectious pathogen linger in the body.' For more on Jaime Seltzer go to News from #MEAction
https://www.hhs.gov/about/news/2024...ections-advance-civil-rights-health-care.html it says you can act on your rights [idk where the details are and cannot read entire thing for health reasons]. i don't trust anything but i wonder if it could be used to get results like: - rational and non-persecutory behavior from the nih? - more accurate characterization of the disease including all severe levels, and non-persecutory behavior, and description of their past a la their tuskegee page, from cdc? - recognition of helper and mobile services and other dire needs from medicare? - anything state-level like helper and other dire services or housing needs not provided? === Today, the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) and the Centers for Medicare & Medicaid Services (CMS) issued a final rule under Section 1557 of the Affordable Care Act (ACA) advancing protections against discrimination in health care. By taking bold action to strengthen protections against discrimination on the basis of race, color, national origin, sex, age, and disability, this rule reduces language access barriers, expands physical and digital accessibility, tackles bias in health technology, and much more. “Today’s rule is a giant step forward for this country toward a more equitable and inclusive health care system, and means that Americans across the country now have a clear way to act on their rights against discrimination when they go to the doctor, talk with their health plan, or engage with health programs run by HHS,” said Secretary Xavier Becerra. “I am very proud that our Office for Civil Rights is standing up against discrimination, no matter who you are, who you love, your faith or where you live. Once again, we are reminding Americans we have your back.” “Section 1557 is critical to making sure that people in all communities have a right to access health care free from discrimination. Today’s rule exemplifies the Biden-Harris Administration’s ongoing commitment to health equity and patient rights,” said OCR Director Melanie Fontes Rainer. “Traveling across the country, I have heard too many stories of people facing discrimination in their health care. The robust protections of 1557 are needed now more than ever. Whether it’s standing up for LGBTQI+ Americans nationwide, making sure that care is more accessible for people with disabilities or immigrant communities, or protecting patients when using AI in health care, OCR protects Americans’ rights.” “CMS is steadfast in our commitment to providing access to high-quality, affordable health care coverage for millions of people who represent the vibrant diversity that makes America strong,” said CMS Administrator Chiquita Brooks-LaSure. “Today’s rule is another important step toward our goal of health equity – toward the attainment of the highest level of health for all people, where everyone has a fair and just opportunity to attain their optimal health.” The rule will restore protections gutted by the prior administration and help increase meaningful access to health care for communities across the country. The 1557 final rule draws on extensive stakeholder engagement, review of over 85,000 comments from the public, the Department’s enforcement experience, and developments in civil rights law. Among other things, the rule: Holds HHS’ health programs and activities to the same nondiscrimination standards as recipients of Federal financial assistance. For the first time, the Department will consider Medicare Part B payments as a form of Federal financial assistance for purposes of triggering civil rights laws enforced by the Department, ensuring that health care providers and suppliers receiving Part B funds are prohibited from discriminating on the basis of race, color, national origin, age, sex and disability. Requires covered health care providers, insurers, grantees, and others, to proactively let people know that language assistance services are available at no cost to patients. Requires covered health care providers, insurers, grantees, and others to let people know that accessibility services are available to patients at no cost. Clarifies that covered health programs and activities offered via telehealth must also be accessible to individuals with limited English proficiency, and individuals with disabilities. Protects against discrimination by codifying that Section 1557’s prohibition against discrimination based on sex includes LGTBQI+ patients. Respects federal protections for religious freedom and conscience and makes clear that recipients may simply rely on those protections or seek assurance of them from HHS. Respects the clinical judgement of health care providers. Protects patients from discriminatory health insurance benefit designs made by insurers. Clarifies the application of Section 1557 nondiscrimination requirements to health insurance plans. Given the increasing use of artificial intelligence (AI) in health programs and activities, the rule clarifies that nondiscrimination in health programs and activities continues to apply to the use of AI, clinical algorithms, predictive analytics, and other tools. This clarification serves as one of the key pillars of HHS’ response to the President’s Executive Order on Safe, Secure, and Trustworthy Development and Use of Artificial Intelligence. Specifically, the rule: Applies the nondiscrimination principles under Section 1557 to the use of patient care decision support tools in clinical care. Requires those covered by the rule to take steps to identify and mitigate discrimination when they use AI and other forms of decision support tools for care. Through partnership and enforcement, HHS OCR helps protect access to health care, because all people deserve health care that is safe, culturally competent, and free from discrimination. Learn more about the robust protections of Section 1557 of the ACA at www.HHS.gov/1557. This press release provides a summary, not any independent interpretation of Section 1557. The Final Rule may be viewed or downloaded at: https://www.federalregister.gov/pub...crimination-in-health-programs-and-activities ### === === p.s. i wonder if i could use this to get mobile phlebotomy/lab company to stop destroying my health due to my circadian disorder, especially given that they supposedly have a night shift. or make my doctor be a doctor. no clue how though.
California Senate Resolution 92: Relative to Lupus and Fibromyalgia Awareness Month. Go to, https://legiscan.com/CA/text/SR92/202 Includes: WHEREAS, While there have been few studies assessing the relationship between women who have been abused and the likelihood of them developing long-term illnesses such as fibromyalgia, research shows that women who have experienced sexual assault or domestic abuse are almost twice as likely to develop fibromyalgia and chronic fatigue syndrome (CFS) than those who have not; and
New York Senate Resolution 1565: Governor Kathy Hochul to proclaim May 2024, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York Go to, https://assembly.state.ny.us/leg/?d...ommittee Votes=Y&Floor Votes=Y#J01565 https://legiscan.com/NY/bill/J01565/2023
Another accepted resolution in the New York Senate this year: "COMMEMORATING the 32nd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York" https://assembly.state.ny.us/leg/?d...ommittee Votes=Y&Floor Votes=Y#J01564
Results for national legislative search about chronic fatigue https://legiscan.com/gaits/search?state=ALL&keyword=chronic+fatigue Results for national legislative search about myalgic https://legiscan.com/gaits/search?state=ALL&keyword=myalgic
Some big action items from the Long Covid Moonshot initiative. Deadline for these two things is tomorrow. They're trying to get $1.4bn for Long Covid from the 2024/2025 budget a) Call your legislators (~4 mins) http://longcovidmoonshot.com/call-guide This is the most impactful action you can take right now to help solidify this funding. Just enter your zip code in our call guide to find your legislators, and call them using the script provided. It's that easy! b) Send a letter to your legislators (~1 min) https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget Use our prefilled ActionNetwork template to tell your legislators we need to fund Long Covid research now. You can even customize the script to share how Long Covid has impacted you.
From the moonshot initiative: We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25 Long Covid funding letter! 7 Senators have already signed on, but we need your help to get more onboard. If you haven't already, please consider helping out: - Call your Senators (~4mins) https://longcovidmoonshot.com/call-guide Calling tends to have more of an impact on our elected officials, so if you have the time, this is the best "bang for buck!" - Send a prefilled email script (~1min) https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget This is a great low-friction option if you don't have the time or capacity for a call, and can be easily shared with friends/family! Cannot emphasise how impactful this advocacy is - if it all works out, we'd be talking about over a billion in funding.
So this was the state of play early yesterday @wingate . I've heard an unconfirmed rumour that Senator Gillibrand has also signed.
