USA: The White House: Memorandum on Addressing the Long-Term Effects of COVID-⁠19

rvallee

rvallee

Senior Member (Voting Rights)
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Speaking of the White House task force, it's probably going to be significant that after revelations of being a rude bully, the first White House scientific adviser, Eric Lander, has been replaced by... Anthony Fauci. That's not new, it happened months ago, but Fauci is basically the most influential scientist in the US government. Initially it was a cabinet position, basically a minister level job, but I think that for Fauci it's expected to be more on a temporary basis.

Whether he has a role in the task force or not, he will have influence on it. Dunno if it's good or bad for us...
 
Merged
Sec. 4. National Research Action Plan on Long COVID. (a) Coordinated efforts across the public and private sectors are needed to advance progress in prevention, diagnosis, treatment, and provision of services for individuals experiencing long COVID. The Secretary, supported by the Assistant Secretary for Health and in collaboration with the Secretary of Defense, the Secretary of Labor, the Secretary of Energy, and the Secretary of Veterans Affairs, shall coordinate a Government-wide effort to develop the first-ever interagency national research agenda on long COVID, to be reflected in a National Research Action Plan. The National Research Action Plan will build on ongoing efforts across the Federal Government, including the landmark RECOVER Initiative implemented by the National Institutes of Health. The Secretary shall release the jointly developed National Research Action Plan within 120 days of the date of this memorandum.

More details and actions, https://www.whitehouse.gov/briefing...addressing-the-long-term-effects-of-covid-19/
 
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White House Announces Long-COVID Action Plan

"The Biden administration announced Tuesday a massive federal effort to better understand, diagnose, and treat the crippling effects of long COVID.

The National Research Action Plan on long COVID will gather experts from various agencies, including the Department of Defense and the Department of Veterans Affairs, to expand existing long-COVID clinics and broaden research on symptoms of the virus that persist long after infection.

"We'll collaborate with academic, industry, state and local partners to better understand long COVID," US Department of Health and Human Services Secretary Xavier Becerra said at a White House briefing Tuesday. "We need to work as aggressively as we can to make sure no American is left behind."


The plan will build on the RECOVER Initiative, a $1.15 billion effort announced last year that will study long COVID."

https://www.medscape.com/viewarticle/971653
 
I have seen a different version of the memo that includes references to ME.

I don't see that part in the memo. Anyone knows where this is from?



Not encouraging that they list anxiety and depression first. There is so much pressure inside medicine to force this outcome. It's going to take massive advocacy to block the sabotage.
 
Thanks!

The section, for easier viewing (say it many times in a row, funny word):

Advancing the nation’s understanding of Long COVID: Robust data and information are essential to our fight against the COVID-19 pandemic and its long-term effects. The Administration will support and accelerate research to understand, prevent, diagnose, treat, advance non-discrimination for, and otherwise support individuals with Long COVID. This includes efforts to better identify and characterize Long COVID – including with respect to its frequency, severity, duration, and risk factors; account for its impact on hard-hit and high-risk populations; and better understand its symptoms—including anxiety and depression, fatigue, shortness of breath, difficulty concentrating, heart palpitations, disordered sleep, chest and joint pain, and headache. These symptoms may look like those associated with other chronic medical conditions—including dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and mast cell activation syndrome (MCAS). In collaboration with patients, academia, providers, and other stakeholders, the Administration will continue to take critical steps to advance our scientific understanding in order to prevent, detect, and treat Long COVID.​

The barest minimum, not enough to be actionable, unfortunately.

Success runs through both fields, so if it's avoided, everyone loses. Which is the current trajectory, unless politics changes everything. Basically this is all about who is involved, nothing else matters. The truth doesn't matter, neither do the patients. It's who decides, what they think and believe, and their stake in the issue. Everything else is superfluous.

So I can't count this as a win yet, it means nothing until the right people do the right thing, which will no doubt require a serious dose of courage to counter the howling rage within the ranks of medicine. Anyway at least this is in motion, medicine is unable to deal with this so leadership is needed to unblock everything, and at least patients can have a voice in politics.

This here is a process, not an achievement. Not yet. Everything is about whether the AIDS model is followed, or the traditional model that systematically fails to deal with complex problems.
 
Another article about the announcement from the White House:

https://www.verywellhealth.com/whit...tional-research-action-plan-is-coming-5225288

Sadly, the last line shows the usual ignorance about (or distancing from?) the fact that ME/CFS happens after other types of infections, including after the SARS pandemic:
VeryWellHealth article said:
“If even only 10% of individuals infected with COVID develop long COVID symptoms—and it may very well be much higher than this—then over 8 million people are suffering with long COVID now,” he said. “Flu and other pandemics do not typically leave such a great residual of illness and disability.”
Click to expand...
(my bolding)

Interestingly, this article quotes the recent US GAO report on Long COVID which does mention ME/CFS. The GAO report also includes this section:
Long COVID is a post-viral syndrome. Post-viral syndromes are well documented for a range of infections. For example, one study found that more than 27 percent of survivors from another coronavirus, severe acute respiratory syndrome (SARS), had chronic fatigue syndrome 4 years after their initial infection.
Click to expand...
(not sure what diagnostic criteria was used to diagnose "chronic fatigue syndrome" in those patients)
 
ahimsa said:
Interestingly, this article quotes the recent US GAO report on Long COVID which does mention ME/CFS. The GAO report also includes this section:

(not sure what diagnostic criteria was used to diagnose "chronic fatigue syndrome" in those patients)
Click to expand...

It was Fukuda. The study is from 2009, so the IOM criteria or ICC didn't exist back then, only CCC. A lot of people who didn't meet the Fukuda criteria were diagnosed with chronic fatigue and many were diagnosed with some psychiatric disease (I think depression and PTSD mostly). I remember they used the terrible HADS scale.

Here is the study itself:
Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors Long-term Follow-up
 
rvallee said:
Speaking of the White House task force, it's probably going to be significant that after revelations of being a rude bully, the first White House scientific adviser, Eric Lander, has been replaced by... Anthony Fauci. That's not new, it happened months ago, but Fauci is basically the most influential scientist in the US government. Initially it was a cabinet position, basically a minister level job, but I think that for Fauci it's expected to be more on a temporary basis.

Whether he has a role in the task force or not, he will have influence on it. Dunno if it's good or bad for us...
Click to expand...

I think Dr. Fauci's position is "Chief Medical Advisor to the President." Unless something has changed, it had been previously announced that the former director of the NIH, Dr. Francis Collins, would serve as the "acting" "Science Advisor to the President" ("acting" meaning Collins has not yet been confirmed by the Senate).

Previously, the Director of the Office of Science and Technology Policy (OSTP) was informally known as the President's Science Advisor, but President Biden has made "Science Advisor" into a separate position.

Both positions, Director of OSTP and Science Advisor, are so-called "cabinet level positions," which mainly means that they are not in the presidential line of succession.

As far as I can tell, the "Chief Medical Officer to the President," is not a cabinet level position - so Dr. Fauci, though he holds a lot of sway, does not seem to be a cabinet member.
 
From a Solve ME email.

"President Biden Launches Interagency National Research Action Plan for Long Covid

President Biden issued a Presidential Memorandum directing the Secretary of Health and Human Services (HHS) to coordinate a new effort across the federal government to develop and issue the first-ever interagency national research action plan on Long Covid and associated conditions. HHS will also issue a report that will outline federal services and supports for those with Long Covid and the impact on high-risk communities. Key areas of the administration’s plan include:

  • Centers of Excellence and the promotion of evidence-based care models
  • Expansion of Long Covid clinics, including the Health+ project, which would look at and improve care for Long Covid and associated conditions
  • Provider education and clinical support
  • Strengthening health insurance coverage
  • Raising awareness of Long Covid as a potentially disabling condition and updating disability policy guidance
  • Increasing access to services and resources
  • An inter-agency National Research Action Plan on Long Covid, which will build on the NIH’s RECOVER Initiative. It will also improve patient engagement in RECOVER through the National Community Engagement Group
  • Using federal data and patient registries for Long Covid research and surveillance
Oved Amitay said of the announcement, “We are thrilled to see the President directing a concerted governmental effort to address this growing public health crisis, in collaboration with patients, academia, providers, and other stakeholders. It is critically important that the Presidential Memorandum acknowledges the need to learn from other post-infection diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia, and mast cell activation syndrome (MCAS) that are strikingly similar to Long Covid. We believe that this field-wide approach will improve outcomes for the millions of people who are affected by all of these diseases.”"
 
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