News from the USA, United States of America

Andy

Andy

Senior Member (Voting rights)
A thread for news from the US that isn't covered by other threads such as (in no particular order)
USA: News from the Workwell Foundation.
USA: News from Solve ME
USA: NIH National Institutes of Health
Overview of NIH grants for ME/CFS research
USA: News from #MEAction
USA: The RECOVER Initiative - Long Covid research
Professor Akiko Iwasaki and the Yale School of Medicine research on Long Covid and post infection syndromes


Starting with
"On May 20, 2021, a bill was passed in NY calling for the addition of #MECFS in Public Health Law and aims to provide education and outreach programs for those working with #pwme. Huge thank you to Richard Gottfried and Senator Rivera for their efforts in helping to increase #MECFSawareness
https://www.nysenate.gov/legislation/bills/2021/A7712..."

Code: 
https://www.facebook.com/CfSforMECFS/posts/1104083986783691

Click to expand...
 
Last edited by a moderator:

Biden–Harris Administration Releases Two New Reports on Long COVID to Support Patients and Further Research

https://www.hhs.gov/about/news/2022...-covid-support-patients-further-research.html
www.hhs.gov said:
The National Research Action Plan on Long COVID details advances in current research and charts a course for future study to better understand prevention and treatment of Long COVID. The Services and Supports for Longer-Term Impacts of COVID-19 report highlights resources for health care workers, and those effected by broader effects of COVID-19, including not only Long COVID but also effects on mental health and substance use, and loss of caregivers and loved ones.
Click to expand...

www.hhs.gov said:
The National Research Action Plan on Long COVID (the Research Plan), created in coordination with 14 government departments and agencies, introduces the first U.S. government–wide national research agenda focused on advancing prevention, diagnosis, treatment, and provision of services and supports for individuals and families experiencing Long COVID.
...

The Services and Supports for Longer-Term Impacts of COVID-19 Report (Services Report) outlines federal services available to the American public to address longer-term effects of COVID-19, including Long COVID and related conditions, as well as other impacts on individuals and families.
Click to expand...

Link to PDF for Services and Supports for Longer-Term Impacts of COVID-19 = https://www.covid.gov/assets/files/...-Longer-Term-Impacts-of-COVID-19-08012022.pdf

Link to PDF for National Research Action Plan on Long COVID =
https://www.covid.gov/assets/files/National-Research-Action-Plan-on-Long-COVID-08012022.pdf

I have not read either of these PDFs yet, but a quick search found references to ME/CFS in both documents.
 
I just would like to draw some attention to the National Research Action Plan on Long COVID in @ahimsa's post, in case someone didn't click on the link. These are the parts about ME/CFS:

The Plan provides a detailed call to action across all sectors of research, both public and private, including academia, to accelerate the delivery of evidence and data. The Plan describes priorities across the seven research areas, as follows.

1. Characterizing the Full Clinical Spectrum of Long COVID and Diagnostic Strategies.
Build on extensive ongoing research led by National Institutes of Health (NIH), Centers 7 National Research Action Plan on Long COVID for Disease Control and Prevention (CDC), the Department of Veterans Affairs (VA), and other agencies, for example the Researching COVID to Enhance Recovery (RECOVER) Initiative and Innovative Support for Patients with SARS-CoV-2 Infection (INSPIRE), to convene public and private partners to better align interim definitions of Long COVID for clinical care, surveillance, and research; lead further studies of the impact of SARS-CoV-2 infection on development and clinical course of new onset chronic disease states (e.g. diabetes); initiate research that disentangles the broader longer-term effects of the pandemic on physical and behavioral health (e.g., mental health and substance use challenges) from those of SARS-CoV-2 infection and re-infection; and further research to examine Long COVID and other post-infectious illnesses, including dysautonomia, and myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), to identify commonalities and differences.

2. Pathophysiology. Build on extensive ongoing research, for example the RECOVER Initiative led by NIH, to achieve a deeper understanding, from the molecular to system levels, of Long COVID within the broader context of post-infectious chronic conditions and other diseases that may have infectious origins, including dysautonomia and ME/CFS.
Click to expand...


From the chapter Summary of Partner Input:

Some partners expressed concerns about current governmental research projects, based on their personal participation in, or engagement with them. For example, patient advocates highlighted the need to integrate evidence and learnings from prior and current research on post-infectious conditions, including dysautonomia and myalgic encephalomyelitis “A National Research Action Plan must be explicit and intentional about including, recruiting, and engaging a diverse research cohort.” —Long COVID Researcher 25 National Research Action Plan on Long COVID and chronic fatigue syndrome (ME/CFS), into ongoing Long COVID research.

Some also expressed concerns with studies that require a positive SARS-CoV-2 test result to be eligible for enrollment, which excludes persons who were not tested, had false negative results, or those who were asymptomatic during the initial infection. The importance of relevant control groups in studies of Long COVID was emphasized. One of the lessons learned from the Centers for Disease Control and Prevention’s (CDC) longstanding ME/CFS program, echoed by some individual partners, is that ME/CFS-like illnesses are often unrecognized or overlooked. There is a need to distinguish the ME/CFS-like (medically unexplained) subgroup of Long COVID from subgroups with COVID-19-related well-established chronic conditions (such as heart disease, diabetes, and renal disease) and prioritize research on Long COVID ME/CFS-like illnesses. There are parallel observations for dysautonomia.
Click to expand...

The text also mentions ongoing or planned LC studies in connection with ME/CFS.


Then in the Research Priorities section:

To most efficiently and effectively accelerate research on Long COVID, it is particularly important to leverage knowledge and expertise (of affected individuals and researchers) gained from research of conditions with similarities to Long COVID including dysautonomia, myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), and other post-infectious illnesses.
Click to expand...
 
Thanks for posting those extracts, @Wyva!

On a slight tangent, I noticed this phrase several times:
myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS)
Click to expand...

I don't remember seeing ME/CFS written out with an and in the middle. I think it's usually just a slash, same as in the shortened version.

I wonder whether phrasing it this way means anything or if it's just a trivial thing that's not important.
 
I think "myalgic encephalomyelitis and chronic fatigue syndrome" is most likely a typo by someone with incomplete knowledge of naming conventions.
 
RedFox said:
I think "myalgic encephalomyelitis and chronic fatigue syndrome" is most likely a typo by someone with incomplete knowledge of naming conventions.
Click to expand...

I have always interpreted ME/CFS as incorporating the maximum alternatives in order to include as many views as possible, or at least an attempt to exclude as few people as possible. I would have expanded it, if obliged to, ‘to ME and/or CFS’.
 
Trish said:
It may not be. There are endless arguments about the name, with some patient groups adamant that ME and CFS are different. We have some very long threads here about it.
Click to expand...
The reason I was surprised by the "and" in the name is because this is a document from a US government organization. I've never seen this phrasing on either the CDC or NIH websites.

I figured this document would use the same wording that's used by other government bodies.
 
https://www.politico.com/news/2022/08/08/long-covid-congress-kaine-00049921

Tim Kaine has long Covid. That’s not moving Congress to act.
While Kaine and other Democrats in the House and Senate are pushing for action, they have failed to gain meaningful momentum due to lack of GOP support.

“I probably wouldn’t have even shared my story publicly except that so many people I represent were reporting that they weren’t being believed and that they felt frustrated that nothing was going on,” he said. “Now I can tell them that not only are there people up here who believe you but we are doing stuff.”

But after months of efforts, Kaine’s experience sounds a lot like his constituents’: a frustrating and so far fruitless exercise. While he and other Democrats in the House and Senate are pushing for action, they have failed to gain meaningful momentum due to lack of GOP support and a congressional leadership bogged down in battles around spending, inflation, foreign policy and reproductive rights.

And as action on Capitol Hill stalls, the problem grows.

Recent CDC data found that nearly one in five people who have been infected with Covid-19 have some form of long Covid, including tens of millions of working-age adults, contributing to the current labor shortage in many sectors. Symptoms can range from loss of smell to breathing problems to debilitating fatigue and even death.

The crisis’ economic toll is also mounting thanks to a combination of lost tax revenue from people with long Covid unable to work and their high medical costs, forming a $2.6 trillion hit to the federal budget, according to Harvard Economics professor David Cutler, a former senior health care adviser to President Barack Obama. Experts warn this is likely to worsen as the virus resurges, infecting more people for the first, second or third time and putting them at higher risk of developing long Covid.
Click to expand...
 
“How Long?” For People with Long COVID, asks Powerful National Public Service Announcement

https://www.healthrising.org/blog/2022/08/10/how-long-long-covid-psa/

In fact, the word is continuing to spread. The latest manifestation of that comes from the Entertainment Industry Foundation (EIF) – an 80-year-old organization created by some of the biggest names from Hollywood’s golden years (Samuel Goldwyn, Humphrey Bogart, James Cagney, the Warner brothers). Since then, EIF has supported everything from the American Red Cross to polio campaigns, to disaster relief, and recently, to children in Ukraine and the Stand Up for Cancer campaign.

Now it’s turning its attention to long COVID. The EIF approached Solve M.E. to create a national TV and radio public service announcement for long COVID and will donate up to $20 million in air time to get the message across. Emily Taylor of Solve ME reported that the “How long” ad has already been picked up by several media outlets and will be distributed widely for the next couple of months.
Click to expand...

How Long Until We Solve Long Covid?

https://solvecfs.org/solve-long-covid/




Edited to add link. "How Long?" PSA starts with Andy's post #72.
https://www.s4me.info/threads/usa-news-from-solve-me.19489/page-4
 
Last edited:
Call it data liberation day: Patients can now access all their health records digitally

The American Revolution had July 4. The allies had D-Day. And now U.S. patients, held down for decades by information hoarders, can rally around a new turning point, October 6, 2022 — the day they got their health data back.

Under federal rules taking effect Thursday, health care organizations must give patients unfettered access to their full health records in digital format. No more long delays. No more fax machines. No more exorbitant charges for printed pages.

Just the data, please — now.

“My great hope is that this will turn the tide on the culture of information blocking,” said Lisa Bari, CEO of Civitas Networks for Health, a nonprofit that supports medical data sharing. “It’s a ground level thing to me: We need to make sure information flows the way patients want it to.”

That’s the opposite of the situation now in place. Health systems, data networks, and the companies that sell electronic medical records determine how much data patients can access, when, and under what circumstances. Meanwhile, private data brokers make huge profits by amassing hundreds of millions of de-identified medical records and selling insights to drug companies, device makers, and insurers without patients’ knowledge or consent.
Click to expand...


“I hope it will become clear that we need to switch from a paternalistic system where a lot of data is moving behind peoples’ backs and without their permission or knowledge, to one where people have more control and agency over their data,” Krumholz said. Now, Krumholz said, patients can have their own personal repository of data that they can build on and ferry from one health care setting to another.
Click to expand...

https://www.statnews.com/2022/10/06/health-data-information-blocking-records/
 
The Institute for Neuro-Immune Medicine at Nova Southeastern University, "a premier research and treatment center for ME/CFS, GWI and other related neuroimmune disorders", where Nancy Klimas is based is now offering

cupping - "Cupping may look strange, but this pain-free treatment has been proven to regulate immune responses to inflammation & autoimmune disorders."
Click to expand...


and acupuncture - "Time for a most frequently asked question: Does acupuncture hurt? Generally, no, but it depends on the person. After all, they are needles, but they are hair-thin, so it feels “more like a mosquito bite”. #acupuncture #mecfs #painrelief #fatigue"
Click to expand...
 
This is ridiculous and embarrassing.


https://en.m.wikipedia.org/wiki/Cupping_therapy

“Cupping has been characterized as a pseudoscience and its practice as quackery.[3][4]

Alternative therapy
Cupping practitioners attempt to use cupping therapy for a wide array of medical conditions including fevers, chronic low back pain, poor appetite, indigestion, high blood pressure, acne, atopic dermatitis, psoriasis, anemia, stroke rehabilitation, nasal congestion, infertility, and menstrual period cramping.[1][2]

Despite the numerous ailments for which practitioners claim cupping therapy is useful, there is insufficient evidence it has any health benefits, and there are some risks of harm, especially from wet cupping and fire cupping.[1]Bruising and skin discoloration are among the adverse effects of cupping and are sometimes mistaken for child abuse.[2] In rare instances, the presence of these marks on children has led to legal action against parents who had their children receive cupping therapy.[2]”
 
I used to have cupping done on my back. It eased my pain by revving up circulation in that area. I've never heard of those other purported benefits. They sound doubtful.

After my first session, I had a lot of discoloration on my back. It didn't hurt, but looked awful. I was careful not to undress around others in the gym dressing room until it went away. Subsequent sessions did not leave me discolored.

Cupping was a good experience for me, but I get a similar effect at home by lying on a large acupressure mat.
 
You must log in or register to reply here.
Back
Top Bottom