Lots of stuff going on!
Things are happening…so many things are happening (or have happened). In an effort to keep up with them – and not to miss some very timely events – I’m going to try and pack as many as I can find into one resource blog.
Time-Sensitive Events
Solve M.E.’s Advocacy Week
If you’re going to participate in one advocacy event this year make it this one.
Solve M.E.’s Advocacy Week is the advocacy event of the year. It’s when ME/CFS and long-COVID patients aim to make a difference at the highest level – and that means talking to Congress. Left to themselves, the NIH and CDC seem almost immovable concerning our diseases. (That could be changing at the NIH with the Roadmap Initiative). The NIH, the CDC, and other branches of Dept. of Health Services have a master, though – and that’s Congress. Because Congress holds the agencies’ purse strings, Congress can, and has, repeatedly changed the course of medical research by telling the NIH to shift.
Take long COVID. As other groups hurried to study long COVID, the NIH virtually sat long COVID out until Congress gave it $1.15 billion to do that. That’s the power of Congress. It has the power to alter a disease’s trajectory overnight and that’s why in advocacy week, we go to Congress. If you engage in one advocacy event this year, make it advocacy week.
Registration is ending in two days – on March 5th!
Register for Advocacy Week here
NIH ME/CFS Roadmap Webinar
The Roadmap’s aim is to create a new future for ME/CFS at the NIH
The National Institute of Neurological Disorders and Stroke (NINDS) ME/CFS Roadmap is an extraordinary effort to create a strategic roadmap, or path forward, for ME/CFS at the NIH. Involving dozens of researchers and patients, the Roadmap has produced 8 webinars on different facets of ME/CFS and will result in a plan that provides NINDS guidance on how to move forward with ME/CFS. (NINDS will share the plan with other Institutes). An earlier Report – the Report to the NANDS Council Working Group for ME/CFS Research – produced in 2019, laid the groundwork for this larger effort. These strategic plans have resulted in increased funding for other diseases in the past.
A webinar exploring the Roadmap Initiative’s progress and what it wants to achieve is happening TOMORROW, March 4th, from 8-9 PT, 11-12 ET. Speakers will include Vicky Whittemore, Ph.D., NINDS program director; and Research Roadmap co-chairs and Solve Research Advisory Council (RAC) members Maureen Hanson, Ph.D., and Lucinda Bateman, M.D.
Sign up for the Webinar here.
Comment Period Closing on March 8th!
The NIH is looking for input on what it should do next from patients, doctors, and researchers. Comments don’t have to be technical. They could be as simple as spending more money on it. The most important thing is that the ME/CFS community shows that it cares what the NIH does.
Provide comments on what you think the NIH should do concerning ME/CFS on its IdeaScale app here.
International Portuguese (Portuguese ??? – yes, Portuguese) ME/CFS and Long-COVID Conference
Portugal has been kind of a nonentity when it comes to ME/CFS/FM! Spain is a hotbed of fibromyalgia research. Germany has exploded with ME/CFS activity, and Italy provides muscle research, but Portugal – I can’t remember anything coming from Portugal. The times they are a-changing, though, and with its international conference, Portugal is now on the ME/CFS and the long-COVID map.
Its free-to-view online, ME/CFS/long-COVID conference is on April 3,4, 2024 in Lisbon WET (Western European Time) from 9am to 6pm.
How did such a thing happen? Patent advocacy and help from ME/CFS experts. David Systrom and Dr. Susan Levine fed the dream and Nuno Sepúlveda, Elizabeth Unger (CDC), Linda Tanenbaum (Open Medicine Foundation) and ME/CFS patients helped to make it a reality. On the ground in Portugal, Professor Prof. Vaz Carneiro, MD, PhD, and Dr. Jaime Branco MD supported the project from the beginning. Various groups – Millions Missing Aliança, ISBE – Institute for Evidence-Based Healthcare, Nova Medical School at Lisbon, together with Harvard University, the Open Medicine Foundation, and The World ME Alliance – all worked together to make this unlikely conference a reality.
This is a birthing moment for ME/CFS and long COVID in Portugal – a country, like so many others, that has been behind the times.
A joint YouTube channel with 2 medical schools (Institute for Evidence-Based Medicine at the Faculty of Medicine, University of Lisbon, and Nova School of Medicine in Lisbon) will disseminate the proceedings. A report by Nuno Sepulveda will be published in national medical journals to elevate ME/CFS’s prominence in Portuguese health authorities and organizations.
Besides all that good stuff – the conference is a good one. With awareness of ME very low in Portugal, anyone who can watch the conference or parts of it will help spread the news. (Views count!). The first day will be mostly devoted to overviews and the second day will dig deeper into ME/CFS research
We’ll see some familiar faces (David Systrom, Lucinda Bateman, Maureen Hanson, Carmen Scheibenbogen, Linda Tanenbaum, Elizabeth Unger, Jonas Berquist) and some not-so-familiar faces Ed Yong (fantastic journalist), Inderjit Singh (exercise physiologist), Philip Joesph (exercise intolerance), Eliana Mattos Lacerda (Euromene).
Register for the free “1st International Conference on Clinical and Scientific Advances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID” here
Online Webinars/Seminars/Podcasts Galore
With ME/CFS and long-COVID webinars, seminars, and expert videos dropping like manna from the heavens, we are in a bountiful time resource-wise. Check out what’s available (and bloggers or would-be bloggers, Health Rising could use your help covering these).
NINDS ME/CFS Roadmap Webinars
This mammoth effort produced by the National Institute of Neurological Disorders and Stroke (NINDS) features technical webinars that are telling us where we are with ME/CFS research, and feature ways forward. Director Koroshetz and Vicky Whitemore created the Roadmap effort and Vicky Whittemore, Lucinda Bateman, and Maureen Hanson have overseen it.
Eight webinars featuring ME/CFS experts have been done. Health Rising has covered the Metabolism webinar and is planning to cover the Lesser Studied Pathologies and Circulation webinars (and could use help with the others).
- Nervous system
- Immune system
- Metabolism
- Genetics
- Chronic Infections
- Physiology
- Lesser Studied Pathologies
- Circulation
The NIH’s “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID” Conference
The December conference featured David Systrom, Ian Lipkin, Jarred Younger, Nancy Klimas, Lucinda Bateman, Mark Davis, and others.
The Unraveled Podcasts
Ruhoy and Kaufman dig into every aspect of these diseases
Drs. Kaufman and Ruhoy explore how they think about and treat complex chronic illnesses like ME/CFS, FM, long COVID, etc. in “Unraveled: Understanding Complex Illnesses with Drs. Kaufman and Ruhoy.” Watch 2 ME/CFS experts (and sometimes others) dig into ME/CFS like you’ve never seen before. (Requires a Patreon subscription.) Most podcasts last about an hour and occur roughly weekly. Check them out here.
- Recent Podcasts: The First and Second Visits, Headache and the Complex Patient, Your Immune System and Your Connective Tissues, Live Q & A’s, Immunomodulatory Treatment Plans…
The Long COVID and Fatiguing Illness Recovery ECHO Programs
These monthly CDC-funded programs aim to rapidly disseminate long COVID and ME/CFS findings and emerging best practices and feature ME/CFS and other experts. Here are some of them. These programs come with some resources.
• February 8, 2024 – Sleep and Post-COVID Conditions
• January 11, 2024 – Long COVID Treatment Update: Symptomatic Treatment
• October 12, 2023 – Research Update – RECOVER
• September 14, 2023 – Integrative Medicine Post-COVID Conditions Group Approach
• August 10, 2023 – Patient Led Research Update
• July 13, 2023 – GI Manifestations of Long Covid
• June 8, 2023 – LDN: Low Dose Naltrexone
• May 11, 2023 – Mast Cell Activation Syndrome (MCAS)
• April 13, 2023 – Research Updates on Microclots
• March 9, 2023 – Mood and Post-COVID Conditions
• November 11, 2022 – Disability and Post-COVID Conditions
• August 11, 2022 – Physical Therapy and Post-COVID Conditions
RECOVER Initiative Long COVID Seminars
RECOVER has been steadily releasing video seminars which are steadily getting more interesting (as we move past the electronic health records seminars). Here are some of them:
- Neurological Manifestations of PASC and Cerebral Vascular Injury
- RECOVER Observational Studies Consortium: Where we are and where we are headed
- Impacts of SARS-CoV-2 infection on brain, immunity, and metabolism
- Understanding the role of the immune system in PASC
- Mechanistic Pathways of PASC Session 2: Viral Persistence and Viral Reservoirs
hi Cort, does the link:
“Provide comments on what you think the NIH should do concerning ME/CFS on its IdeaScale app here. ” does not work or is it only for US citizens? ik would say tons of money, worlwide collaboration, adapted homes for those that can not longer stay at home (are to ill) or maybe even have no home, working together with DecodeME (replicating with larger numbers, etc and precisionlife (see genetics : NINDS ME/CFS , Roadmap Webinars and that they do not forget the bedbound in there studys. UK has outside of decodeMEfor everyone , also bedbounds, spittests and help with questionaires, now a second study with spittest and questionaires also for bedbound ones.
The link is below.
https://ninds.ideascalegov.com/c/campaigns/1286/about
An NIH video guide on submitting your ideas and comments:
https://ninds.ideascalegov.com/a/pages/mecfsguide
Be sure to add any and all ideas before this Friday 8th March
i need to log in true sso or oss (brain, sorry) or idescale but i live in belgium. so how do i do that please? missed the one on march 4th because of zoom. hope they will record it?!
way to ill…
It is open to everyone around the world
I completely agree with Konijn. It would be beneficial to have specialized homes and specialized clinics that use AI to personalize treatments already available on the market, such as LDN, BM, antiviruses, anticoagulants, beta blockers, hyperbaric oxygen therapy, nicotine , ozone therapy, antihistamines, etc. For this, it would be necessary to carry out blood, saliva and urine tests to detect heavy metals (which have been little studied), viruses, bacteria, molds, food intolerances, muscle biopsies (for example, research for macrophage myophocytes), open MRIs for claustrophobic people (of which I am one), as well as an in-depth study of the autonomic nervous system, micro-clots and the distribution of oxygen throughout the body.
Add your ideas at the link I provided above or the link in Cort’s blog. Ideas are welcome from everyone around the world
thank you, hope i can make it. is it also with Zoom? tryd yesterday belgium time, got not in for a webinar, needed to update and way to difficult for my verry bad brain in crash…
No, there is nothing to do with zoom.
It is a website open 24/7 for you to sign up and then add your ideas.
There is also an email option if you find the other way tricky (which I think some pwME do):
“We recognize that IdeaScale can be challenging to navigate, so please provide comments on any of the research priorities to: mecfsresearchroadmap@ninds.nih.gov
When you submit your feedback and comments via email, please also let us know the following:
Would like us to post your feedback/comments on IdeaScale for you? Answer: Yes/No
Would like us to post your feedback/comments anonymously or with your name? Answer: Anonymously/With my name: please provide your full name
Please send any questions about this process to the email address provided: mecfsresearchroadmap@ninds.nih.gov“
i meant adapted homes for those of the verry verry severe spectrum, tubefed, etc who can not survive anymore…
Thank you Cort for providing links to so many webinars, conferences and podcasts. It’s a treasure trove of good information.
Neuroimmune PET scan studies performed at Stanford looks particularly promising for ME patients.
I haven’t done crowdsourcing before. In order to participate in the NIH Roadmap, you have to include a “display name” when you sign up, which cannot be changed. In my case, the display name is the email address I used to enroll, which I don’t want to make public in a “display.” Is it unreasonable to want to change the “display name,” and if so, how does one do it?
Here is an interesting study from MIT. They have found that the complement system is impaired in people with long Covid, and it results in a cascade of symptoms that many here are all too familiar with. ““The complement system is so central, not only communicating with the immune system but also communicating with the blood clotting system—with the endothelial cells, with platelets, with red blood cells, and going into all the organs.” That might explain why some researchers have found tiny clots in people with the disease.”https://www.technologyreview.com/2024/01/19/1086874/long-covid-biomarkers-treatments-complement-system/?utm_source=facebook&utm_medium=mid&utm_campaign=trending2024&fbclid=IwAR0AhncrgnxFSss8QZifUXHisCZgRLiawoWokHUZLO1qifiIwZaGtks8hZs
Cort, just wanted to share MEAction’s critique of Dr. Nath’s ME/CFS study;
https://www.meaction.net/2024/02/29/meaction-nih-study-response/
I too am a bit suspicious of all the conclusions of his study and it seems as if I am not alone. Surely he has made some good discoveries, but I hope, as voiced by this critique, that it doesn’t end up in a similar bin as the PACE study. Eight million dollars is a lot to spend on 17 subjects!
This is an add on to Nath’s NIH study critique, this time by other leading researchers including Dr. Lucinda Bateman;
https://www.medscape.com/viewarticle/me-cfs-experts-express-dismay-aspects-nih-study-2024a10003yj