USA: 'Examining the Working Definition for Long COVID' consultation 2023

rvallee

rvallee

Senior Member (Voting Rights)
Call for Public Comment from the National Academies of Sciences, Engineering, and Medicine
https://survey.alchemer.com/s3/7301239/Long-COVID-Definition-Online-Public-Comment-Portal

A National Academies of Sciences, Engineering, and Medicine committee is conducting a series of stakeholder engagement activities to examine the current U.S. Government (USG) working definition for Long COVID and related technical terms. The stakeholder engagement process is being conducted for the purpose of gathering a diverse and informed range of perspectives, experience, and expertise from key stakeholders to help inform refinements to the U.S. Government’s current working definition of Long COVID and related technical terms.

Interim Working Definition: Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.

This Online Public Comment Portal will be available from April 10, 2023 – June 12, 2023, for public comments and resource submissions to the Committee on Examining the Working Definition for Long COVID about the current interim definition. ​

There is a line that says "All written materials provided for consideration by the committee may be listed in the committee's Public Access File (PAF)".

Whereas the committee page says "Contact the Public Access Records Office to make an inquiry, request a list of the public access file materials, or obtain a copy of the materials found in the file."

I'll see if I can do that later, but it's a little complicated for me right now. If anyone can request those documents it would be great, and maybe this is worth doing a thread to help get more contributions.
 
Merged

1. until May 12
The National Academies of Science, Engineering, and Medicine (National Academies) Committee on Examining the Working Definition for Long COVID invites you to participate in a questionnaire about how to best define Long COVID. Results will be reviewed by the National Academies as they examine the U.S. Government's working definition for Long COVID.

Share your views on what should be in the U.S. Government's definition for Long COVID: Complete the questionnaire

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2. until June 12
Opportunity to give free text comments:

Open Portal: https://survey.alchemer.com/s3/7301239/Long-COVID-Definition-Online-Public-Comment-Portal

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People around the world can take part. It may influence matters elsewhere in numerous ways.
 
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I hope members will complete the questionnaire.

I think that Long Covid is term that should not be defined medically beyond 'covid-19 causes a number of health conditions with impacts after the acute Covid-19 infection has resolved'. I also think that it is more useful to recognise those specific health conditions, including post-Covid-19 ME/CFS. If you think the same, then the questionnaire will be a bit frustrating. I banged my square peg answer in the round hole questions, to some extent regardless of what was asked.

I think it is important that the incidence of ME/CFS after Covid-19 is acknowledged, and is not hidden under the vague 'Long Covid' term. We have seen here how a vague definition can be used to magic away post acute-Covid illness, by suggesting symptoms like fatigue are very common, regardless of infection status.

I also mentioned the issues with measuring depression and anxiety disorders as symptoms of Post-Covid illnesses, when those illnesses have often caused substantial losses in quality of life that take time to adjust to, and so sadness and worry are normal reactions.
 
Hutan said:
We have seen here how a vague definition can be used to magic away post acute-Covid illness, by suggesting symptoms like fatigue are very common, regardless of infection status.
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One could be excused for wondering if such definitions are convenient straw men, deliberately constructed to be easy to take down with superficial statistical arguments, without actually revealing much about the real underlying problem/s.
 
Yes, I have to wonder what the Long Covid advocates were thinking when they agreed to the overly broad definitions of Long Covid, e.g. the WHO definition. They might have thought that a broad definition would help make the problem appear bigger and more important, perhaps they didn't want to deny people with obscure symptoms help. But, it's backfiring.
 
Hutan said:
Yes, I have to wonder what the Long Covid advocates were thinking when they agreed to the overly broad definitions of Long Covid, e.g. the WHO definition. They might have thought that a broad definition would help make the problem appear bigger and more important, perhaps they didn't want to deny people with obscure symptoms help. But, it's backfiring.
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From what I remember, there needed to be consensus on which symptoms were of critical importance and at least 70% of the responses had to agree. Those symptoms, features ended up in the final definition of long covid. PEM got 67%, so it was really close.
 
Sean said:
One could be excused for wondering if such definitions are convenient straw men, deliberately constructed to be easy to take down with superficial statistical arguments, without actually revealing much about the real underlying problem/s.
Click to expand...
Yeah. I don't think it's credible that progress with peptic ulcers would have been changed much, better or worse, by somehow finding the perfect definition. Same with any pre-breakthrough disease.

Medicine doesn't care about definitions. It cares about pathophysiology. We could produce a perfect definition that eventually aligns with a breakthrough in pathophysiology and the definition would be completely irrelevant in the outcome.

This game has to be played but it's not going to matter at all in the end. This isn't how progress happens. It's basically how progress is blocked, wasting time on pointless trivia that no one has any intention of acting on. IMO this is mostly checking the public involvement checkbox, with no one in the entire system caring one way or another. There is too much precedent for this, it's physiology or bust, the rest is just distraction.

It's not about the process, it's about how it's used. This process could matter, but it doesn't on purpose.
 
Psychology Today:

A Case Definition for Long COVID - Lessons from 40 years of ME/CFS research.

Article by Vernita Perkins and Leonard Jason

Many of the questionnaires to assess Long COVID symptoms solely measure the occurrence of symptoms, but many of the symptoms, such as fatigue, are common among individuals even before they had COVID. So just indicating whether a patient has a symptom is insufficient for designating at a threshold the symptom needs to exist for it to be considered a problem.

A very infrequent symptom might not be a problem for the person even if it is rather serious when it occurs. A migraine that only occurs once every few months might be painful when experienced, but its relative infrequency might not make it a burden to the person. Failing to document these types of frequency and severity differentiations in symptoms makes it considerably more difficult to assess the impact of symptoms and their burden. Cut-off points need to be developed and empirically evaluated, as they have in the ME/CFS field of study.​
 
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