Highlights from the ME/CFS Roadmap Presentation at the Spring NANDSC Meeting  VIcky Whittemore, Lucinda Bateman and Maureen Hanson presented recommendations produced by the Roadmap groups to the NINDS . The Roadmap consisted of 8 day long webinars and culminated in a 148-page report that was delivered to the Council. Watch the videocast here – I believe the Roadmap presentation begins about an hour and a half in. The NIH Wants Your Brain The NIH is looking for ME/CFS and fibromyalgia brains to better understand these illnesses The NIH wants your brain – it really does. (Not right now ..read more

Check out Geoff’s narration The GIST https://www.healthrising.org/wp-content/uploads/2024/05/The-GIST-Found.mp3 The Blog https://www.healthrising.org/wp-content/uploads/2024/05/HR-Narr-Found.mp3   THE GIST Check out Geoff’s narration of the GIST at the top of the blog. Major Takeaway – researchers find a circuit in the brain that turns on and off the inflammatory response that characterizes so many chronic illnesses including ME/CFS and long COVID. It could also explain how stress impacts inflammation.  Twenty years ago, our idea of how the immune system changed radically when Kevi ..read more

Monitoring blood lactate levels gives athletes “the edge”. Could it help with people with diseases which have high blood lactate levels like ME/CFS, FM and long COVID (The GIST is at the end of the blog) Wearables abound (Fitbit, Oura ring, Apple Watch, STAT earpiece) and who knows what’s lurking on the horizon in the wearable world but a recent paper, suggested something that might be quite attuned to the problems found in chronic fatigue syndrome (ME/CFS), fibromyalgia and long COVID. How about assessing blood lactate levels to get insights into post-exertional malaise? That’s next in Hea ..read more

Geoff’s Narration The GIST https://www.healthrising.org/wp-content/uploads/2024/05/The-GIST-Big-Energy-Sink-Pt-2.mp3 The Blog https://www.healthrising.org/wp-content/uploads/2024/05/HR-Narration-Big-Energy-Sink-Pt-2-1.mp3   (The GIST is on the bottom right of the blog today) The “Oxidative Stress is a shared characteristic of ME/CFS and Long COVID” preprint is an example of how a small but well-done study can still reach very deeply into the biology of ME/CFS. Health Rising covered Mark Davis’s presentation on the effort in the Dec 2023 NIH ME/CFS Conference, but the preprint that was jus ..read more

Vishnu Shankar, an enterprising graduate student, turned a struggling NIH grant on T-cells into a win. (The GIST is on the bottom right) The “Oxidative Stress is a shared characteristic of ME/CFS and Long COVID” preprint example of how a small but well-done study can still reach very deeply into the biology of ME/CFS. Health Rising covered Mark Davis’s presentation on the effort in the Dec 2023 NIH ME/CFS Conference but preprint that was just published includes long COVID and includes new findings. Some people may remember that Health Rising reported that becoming obsessed with the energy p ..read more

Check out Geoff’s narration The GIST https://www.healthrising.org/wp-content/uploads/2024/05/The-GIST-Vicky-Whittemore.mp3 The Blog https://www.healthrising.org/wp-content/uploads/2024/05/HR-Narr-Vicky-Whittemore.mp3 VIcky Whittemore has been at the heart of the ME/CFS program at the NIH since 2015. Vicky Whittemore is our go-to person for chronic fatigue syndrome (ME/CFS) at the National Institutes of Health (NIH). Besides overseeing the ME/CFS grants (study) portfolio since 2013, she and Joe Breen (NIAID) and the Trans-NIH Working Group are involved in virtually everything of consequence h ..read more

The RECOVER Initiative’s low-risk, low-reward treatment trials have failed to impress. Here’s what it could be doing. Thanks to John Bolecek for putting together this thought-provoking blog. A former Statewide Bicycle and Pedestrian Coordinator at the Virginia Department of Transportation, John was in great shape before he came down with long COVID and is now disabled. Check out John’s story “A life derailed by long COVID“. This is a call for the NIH, FDA, Congress, and private donors interested in long-COVID clinical trials to come together, fund, and select a well-designed, meaningful sla ..read more

There’s a lot going on right now and that speaks well of the shape the post-viral disease field is in. While the field lacks the infrastructure it needs at places like the NIH to thrive, more people from more different places are pushing for these diseases than ever before. Last month, Health Rising reported about the Portuguese (Portuguese!) ME/CFS and Long COVID Conference. This month, it’s the “Unite to Fight” German Long COVID and ME/CFS Conference. Check out some of the things happening below: UniteToFight2024 Conference Over 6,000 people have already registered. Take the UniteToFight ..read more

  Who says long duration patients can’t recover? Health Rising’s recent Recovery/Recovering Series continues with – you guessed it – something entirely different. From Efthymio’s artificial intelligence aided recovery story, to vaccine, drug (rapamycin), neuroplasticity + alternative health, cerebral spinal fluid patch, mast cell + recoveries – it goes on and on – the theme has been the many different ways people can recover from these illnesses. Indeed, Flo’s story is different in several ways – the length of her illness (almost 40 years) and the way she finally ended it.&nb ..read more

The Crimean-Congo Hemorrhagic Fever (CCHF) Virus may sound exotic but its postviral effects looked all too familiar. A blog on Tick-borne Crimean-Congo hemorrhagic fever virus (CCHFV) might not be what you expect on a chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID website. While CCHFV is a major problem in Africa, the Middle East, and Asia it’s not in North America or Europe. A recent study suggests, though, that it may not matter where a bug comes from when it comes to postviral illnesses. Thanks to Kajsa for digging this one up – I never would have seen it otherwise.&nbs ..read more