National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024

https://www.nationalacademies.org/n...k-symptoms-and-functional-impact-for-patients

News Release | June 5, 2024

WASHINGTON — A new report from the National Academies of Sciences, Engineering, and Medicine presents conclusions about Long COVID diagnosis, symptoms, and impact on daily function — including that Long COVID can cause more than 200 symptoms, and that a positive COVID-19 test is not necessary to make a Long COVID diagnosis.

Since the onset of the COVID-19 pandemic in 2020, many individuals infected with the virus have continued to experience lingering symptoms for months or even years following acute infection. In a 2022 survey, 3.4 percent of U.S. adults and 1.3 percent children reported they were experiencing Long COVID symptoms at the time of the survey.

The new report says that some health effects of Long COVID, including chronic fatigue and post-exertional malaise, cognitive impairment (sometimes referred to as “brain fog”), and autonomic dysfunction, can impair an individual’s ability to work or attend school for six months to two years or more after COVID-19 infection. It can be difficult to clinically assess these health effects, or to determine their severity and effect on a person’s ability to function. They also may not be captured in the Social Security Administration’s Listing of Impairments, which is used as an initial screening step in determining disability.

Even patients with a mild case of COVID-19 can go on to develop Long COVID with severe health effects. Risk factors for poor functional outcomes from Long COVID include being female, lack of or inadequate vaccination against COVID-19, preexisting disability or comorbidities, and smoking. A greater number of or more severe Long COVID symptoms are correlated with decreased quality of life, physical functioning, and ability to work or perform in school.

“Diagnosing, measuring, and treating Long COVID is complicated. This disease, which has existed in humans for less than five years, can present differently from person to person and can either resolve within weeks or persist for months or years,” said Paul Volberding, professor emeritus in the department of medicine at the University of California, San Francisco, and chair of the committee that wrote the report. “Our report seeks to offer a clear summary of what research has found so far about diagnosing Long COVID, and what the disease can mean for an individual’s ability to function in their daily lives.”

“This report offers a comprehensive review of the evidence base for how Long COVID may impact a patient’s ability to engage in normal activities, such as going to work, attending school, or taking care of their families,” said Victor J. Dzau, president of the National Academy of Medicine. “Its findings will be useful to anyone attempting to understand how Long COVID may affect the millions of people in the U.S. who have reported symptoms.”

 

NASEM press release: 'New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients'

'Undertaken by the Committee on the Long-Term Health Effects Stemming from COVID-19 and Implications for the Social Security Administration, the study was sponsored by Social Security Administration.'

 

LA Times by Emily Alpert Reyes: 'Positive test not needed for long COVID diagnosis, experts conclude'

'People do not need to have tested positive for the coronavirus to be considered for a diagnosis of long COVID, a new report from NASEM concludes’

'Demand for specialty care to help long COVID patients has outstripped capacity, resulting in waiting lists. Meanwhile, patients can encounter skepticism about their symptoms, which discourages them from seeking care and can particularly affect those who are disadvantaged..’

'Long COVID shares many features with other chronic conditions, such as myalgic encephalomyelitis, also known as chronic fatigue syndrome; fibromyalgia; and postural orthostatic tachycardia syndrome, or POTS. More research is needed on how to manage such illnesses.’

Volberding said many other questions about long COVID are yet to be settled.

“This is an area where society — and Social Security — are going to need to keep their eye on this as we continue to learn more.’

“These people with long COVID really are suffering,” he added. “Even if we’d rather, as a society, ignore the pandemic altogether, you can’t ignore the challenge that these people are facing.”

 

It is quite long of course, so I haven't read it all but there is an entire chapter titled "Chronic Conditions Similar to Long Covid"

It points out very well how long covid or at least a percentage of LC is eerily similar to ME/CFS, gives a lot of info about ME/CFS and in general I thought it was quite alright. (ME/CFS is not the only condition mentioned though, fibromyalgia, POTS, hEDS and post-treatment Lyme syndrome are discussed as well, with varying emphasis. ME/CFS gets a lot of attention though.)

And then I saw the sections titled "Multidisciplinary Care and Rehabilitation" on page 196 of the same chapter and "Psychosocial Support" on the next page and I wasn't so impressed. These go way to easy on physical rehab and CBT. There is a warning about GET but also recommendation of physical rehab and basically the section says GET "requires caution" in the treatment of ME/CFS because of the potential harm. Nothing about the fact that neither GET or CBT are actually supported by evidence. It gives the impression that GET is OK in treating ME/CFS as long as you are careful.

 

CIDRAP: “Report: More than 200 symptoms tied to long COVID”

“The findings are meant to guide the Social Security Administration (SSA) and are published one week before NASEM is set to offer a new single definition of long COVID…”

“Emphasized throughout the report is the similarity long COVID has to other chronic conditions, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and postural orthostatic tachycardia syndrome (POTS).“

“Like those conditions there is no current way to treat long COVID, though long COVID does have a better prognosis than does ME/CFS.”

 

At least it adds to the weight of why this needs to be researched, but frankly the part about rehabilitation more than anything emphasizes how rehabilitation medicine is a mess where evidence barely matters and outcomes even less so, to the point where it should be entirely ignored most of the time.

One of the highlights is:

And current knowledge is essentially nil, while rehabilitation has never shown any positive impact, but it's recommended anyway. In a discipline marred with low-quality knowledge, rehabilitation evidence-based medicine is really as low as it gets.

 

A summary on "similar chronic conditions":

​

 

I find it so weird how people who meet ME diagnostic criteria after a covid infection are said to have long covid and not ME/CFS? Shouldn’t they be counted to have both?

 

PEM is widely discussed throughout, and very prominently. In a sane world with a medical profession that is accountable and self-critical, the dismissal of PEM for decades, including from the prominent voices who have pushed the psychosomatic model, should be a massive embarrassment. If only facts mattered.

Honestly, this may as well be a report on ME/CFS.

 

They discuss this, page 66:

But still go on elsewhere about rehabilitation being important, as long as it ignores PEM. Which still fundamentally misunderstands PEM.

 

There is still so much of the old disinformation, though. So much about exercise, all based on the old misinterpretation and psychosomatic models. This part is very disappointing, so much debunked junk that is kept around even though the entire basis for their claims is completely destroyed overall by the report.

 

Psychosomatic: 0 hits.
Biopsychosocial: 0 hits.
Wessely: found twice, old studies of little importance.
PACE not mentioned. White absent, too.
A few mentions of the 2021 NICE guidelines.

Few mentions of CBT, all here except for 2 citations:

Way too many references to exercise, while discussion of GET is limited to this:

Fear: 0 hits.
Belief(s): 0 hits.
Catastrophizing:0 hits.
Kinesiophobia: 0 hits.
FND: 0 hits.
Functional disorder: 0 hits.
Somatization: 0 hits.

Bit embarrassing: Sharpe: 0 hits.

Imagine cosplaying, hell being recognized internationally, as an expert on an issue, being a major player in a name and conceptual change, and in a major report from a major academic institution about the single biggest increase in its incidence in history, you are entirely out of the discussion, as is pretty much everything you spent your career on. Even as it remains, to this day, the dominant model. It's both dominant and irrelevant at the same time.

 

I’m liking the fact that David Tuller got more citations than sharpe in this review.

 

Part of this is because their Long COVID definition is broad - "signs, symptoms, and conditions are present 4 weeks or more after the initial phase of infection" and "it's not one condition."

On the other hand, its not clear how deeply they dug into some of the literature (this was not intended as a systematic review). So for instance, in the meeting, they were asked about the purpose of CBT and they said "CBT can be helpful for a variety of reasons. Reasons not discussed in report. It can be used in various ways – coping but also mental health issues and compensatory strategies." So at least for CBT, it was a non-specific recommendation without crisp rationale for specific subpopulations of LC

 

I haven't read the report but generally thought the panel members presenting got it. For instance, one acknowledged that doctors might react negatively because these patients are not going to get better quickly and will require a lot of work - which could result in discrimination against patients.

Not sure how this plays out in other countries but in the US, it results in a strong disincentive for doctors because that time and effort is not reimbursed by our medical system.

 

But in that section they are not talking about long covid specifically. This whole part, quoted by @rvallee and linked by me earlier in the thread is in the chapter about similar chronic conditions, ME/CFS, fibromyalgia etc.

These are the quotes:

As I said earlier, this sounds like GET can be a valid treatment for ME/CFS as long as it is done cautiously. Whereas there is zero evidence it works as a treatment at all but there is no mention of that. Actually the evidence points to the opposite. Potential harms are acknowledged but this paragraph is still not good.

I was actually thinking about sending this to the Ministy of Inferior / Professional Health Colleges here, whom I currently in correspondence with about a consensus recommendation about ME/CFS. A lot of the text is actually pretty good and useful. But those paragraphs about rehabilitation of ME/CFS and post-viral conditions really gave me a pause and now I'm really on the fence if this is worth sending simply because of that part.

 

"Overlap in Common Symptoms on Long Covid, ME/CFS, and #Fibromyalgia "

 

Table 5.2 Summary of Potential Biological Mechanisms of #LongCovid, #MyalgicEncephalomyelitis/ #ChronicFatigueSyndrome (#MECFS), & #Fibromyalgia (#FM)

 

Out of curiosity why did they include downregulation of HPA-Axis in that chart given they say it is a potential mechanism for none.

 

I've seen a disturbing number of comments lately about this, explicitly about frustration over not improving that made their MD push for exercise rehabilitation and psychosomatic explanations, probably because this is a common biopsychosocial framing. This is a serious problem, and it's great that it's put in writing in such an authoritative report.

Even if that report has such problematic parts about rehabilitation that it could do as much harm as good. There is a huge problem with how medicine relies on low-quality evidence, which no other profession would even consider. It's infected everything.