Yale Medicine: “Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses” “These illnesses urgently need effective treatments..”
Axios: 'Senators push for long COVID research boost' 'A group of Democratic senators backed by patient advocacy groups is pushing for over $1 billion in new spending for long COVID research in the next government funding package.’ ''They are backed by patient groups like Long COVID Moonshot, who are trying to mobilize patients with long COVID to contact Congress in support of the request.’ Senate Appropriations Chair Patty Murray said in a statement to Axios she is "going to keep pushing for essential research funds to help treat, cure, and prevent long COVID." She noted, though, that "we are working with extremely tight funding caps that I have never supported — but it is essential we continue to pursue breakthroughs to help patients struggling with long COVID." Sen. Tammy Baldwin, chair of the health appropriations subcommittee, said she is "working closely with colleagues and stakeholders to support the NIH.” Spokespeople for Sens. Susan Collins and Shelley Moore Capito, the relevant top Republicans, declined to comment.
Article from X link https://www.aspendailynews.com/opin...cle_514db18c-11c1-11ef-a507-3fb6e81cde90.html Marolt: If I haven’t seemed like myself lately… Roger Marolt, Aspen Daily News Columnist May 14, 2024 had my fifth positive test for COVID on Jan. 1, and while I wasn’t extremely sick, my recovery felt slow. In the first week of March, there was no more denying the condition I previously doubted was real. https://twitter.com/user/status/1790574923146248539
Washington Post: 'In communities of color, long-covid patients are tired of being sick and neglected' 'It has been four years since coronavirus infections began burdening people with lingering symptoms often dismissed by medical providers’ 'It’s bad enough patients of color are coping with a debilitating illness, they said. It’s all the more devastating, they said, to feel like they’re being erased — from medical records, public imagination and policy considerations.’ 'For millions of patients of color, the pandemic was a mass disabling event — a fact many felt was widely ignored by policymakers, employers and society writ large. Long-covid sufferers say their pain has been dismissed. Their experiences downplayed. Their isolation intensified.’
That article and press release is from July 31, 2023 https://www.hhs.gov/about/news/2023...inical-trials-through-recover-initiative.html
I thought that article was really well done. I’m just a little annoyed they got the single mention of ME as “chronic fatigue”. Though to be fair it is not clear if they are referring to ME/CFS or chronic fatigue in general, but it is certainly confusing to claim there is a “condition” called chronic fatigue.
I have a general feed set up for google news to catch the keywords long covid and me/cfs and it mostly works well but once in a while it randomly regurgitates something 1+ year old, it’s really weird.
Fortune: 'COVID can cause new health problems to appear years after infection, according to a study of more than 130,000 patients’ 'For these and other reasons, researchers have led the charge to accelerate the pace of trials for long COVID treatments..’ 'Researchers hope that this latest study will again focus attention on a disease with a long tail and an unknowable future, and perhaps prod the National Institutes of Health to take a bigger swing at the issue.’ “We need to be much bolder and much more ambitious with our trials,” Al-Aly says. “At the glacial pace that they’re going, we’re unlikely to get any definitive answers for decades to come.”
Disturbing report about a very expensive treatment for LC. There aren't many details but it looks like a $100K bunch of woo. I'm sure there are more examples like this. Families uprooting themselves and spending absurd amounts for a treatment. Imagine if all this energy were channeled in an AIDS ACT UP-like movement instead. Easton family fighting to help son treat long COVID finds hope in Arkansas — at a cost https://www.wbaltv.com/article/dylan-smith-pediatric-long-covid-treatment-cost-arkansas/60939706 Dylan's parents believe it's possible for a return to some normalcy if they can get him to a nontraditional medical facility in Fayetteville, Arkansas, called the Spero Clinic. The clinic treats severe pain disorders, such as complex regional pain syndrome, and now, pediatric long COVID. The clinic's founder and CEO, Dr. Katinka van der Merwe, said they're seeing great success in treating pediatric long COVID. "So far, we've had a 100% success rate. We've had 10 severe long COVID cases, so it's not a big pool of patients, but I'm very excited about the possibility," van der Merwe told 11 News. Tristan Kimmey, 14, a long COVID patient, arrived at the clinic in a wheelchair in January. Since then, he is now able to exercise on his own and even ride a scooter. ... The treatment is outpatient and lasts 14-20 weeks. Therapists use as many as 16 different techniques, all treating the central nervous system. "(The treatment decreases) inflammation globally, body-wide, and keeping the body very calm, so you can push very hard on the other end and not send that patient into a state with worse symptoms," van der Merwe told 11 News. ... "It is May, and he is signing in every day at a zero pain level. This child has zero pain, coming from a child who no longer wanted to wake up anymore because he was so scared to face the day with all the pain," Ashley Kimmey told 11 News. "It's mind-blowing, it truly is. He's gone from survival to playing with his brothers again, horsing around again. He's swimming in a pool. He's doing things that we couldn't even imagine him doing five months ago." ... Because the clinic is not mainstream medicine, it is not covered by insurance — and the price tag is high. Stacey Smith, who is a teacher, estimated it will cost her family about $100,000 for the treatment and the cost of temporarily relocating to Arkansas. The Smiths are grateful for help and support from their community, but the cost remains a difficult hurdle to overcome — especially since she has been unable to work full-time, if at all, while caring for Dylan. "We just found out about the clinic in March, and his start date is in June. So, we have a short amount of time to raise a large amount of money," Stacey Smith told 11 News.
Just sharing some testimony released today from Dr. Fauci to the House Committee on Oversight and Reform, The Committee on Oversight and Accountability: ‘COVID Select Subcommittee Releases Dr. Fauci’s Transcript, Highlights Key Takeaways in New Memo’ This was from the closed door, 14-hour, two-day testimony in January 2024 that "served as a critical component of the Select Subcommittee’s investigations into the origins of COVID-19, pandemic-era domestic policy failures, and improvements to the United States’ public health system.” Here is a Twitter thread of some of the pulled comments/screenshots in his testimony (you can search Long COVID or myalgic encephalomyelitis to filter, if you’d like to view all from the transcript). Some excerpts: "‘So there are situations of post-viral persistent symptomatology, but nothing as obvious and as high percentage as this. This is unique in that respect, but the concept of a post-viral syndrome is not unique. And there's the whole issue of myalgic encephalomyelitis/chronic fatigue syndrome, which very likely is related to a prior unrecognized infection.” “I mean, there's a lot that these viruses have effect on us, and we really need to learn a lot more about it.” “But because it's so heterogeneous, we really need to get a better feel on the epidemiology of it and then look at what the pathogenic mechanisms are to be able to intervene.” "We should be doing more, no doubt, because we don't have the answers. Initially, the President's budget and the Congress agreed to give to the NIH $1.15 billion to do a very large cohort study to try and determine. We need more studies.” “The answer to your question is..we absolutely need to do more.”
Not sure if he said similar things to the senate health committee, but giving the same information to a different house committee may have some effect in making more elected officials aware of the problem. The more they hear it from different sources, the more it impresses on how significant the problem is. This is the kind of thing that can move the needle. I hope he says it a lot, he has the influence to make things happen.
“Senator Marshall Publishes Op-Ed Demanding Dr. Fauci Answers for Numerous Unsolved Covid-19 Questions” “.. more than 10 million Americans are still suffering from long Covid. We continue to fight for accountability.” https://www.marshall.senate.gov/new...ers-for-numerous-unsolved-covid-19-questions/
Washington Post: 'What America owes long covid patients' 'People suffering from this condition need to be heard and believed' 'Government officials, public health professionals and private philanthropy organizations..need to invest in research..’
New York Times: 'New Report Underscores the Seriousness of Long Covid’ by Pam Belluck 'The National Academies said the condition could involve up to 200 symptoms, make it difficult for people to work and last for months or years’ 'Some symptoms are like those of other conditions that emerge following infections, including myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and postural orthostatic tachycardia syndrome.’ 'The biological cause of the symptoms is unclear. Theories include inflammation, fragments of remaining virus and immune system dysregulation.’ More on the report here: National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024
