A call from patient-researchers to advance research on long COVID, 2024, Fitzgerald et al

[Nightsong]

A call from patient-researchers to advance research on long COVID

Abstract
Long COVID is a chronic and often disabling illness with long-term consequences. Although progress has been made in the clinical characterization of long COVID, no approved treatments exist and disconnects between patients and researchers threaten to hinder future progress. Incorporating patients as active collaborators in long COVID research can bridge the gap and accelerate progress toward treatments and cures.

Link | PDF (Cell, October 2024)
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As patient-researchers, we have also had to spend considerable time and resources refuting the framing of long COVID as psychological, psychosomatic or due to deconditioning. These framings alienate patients and allocate precious limited resources to dead-end hypotheses rather than evidence-backed scientific trials.

Cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have historically been implemented in combination in attempts to treat ME based on the hypothesis that the etiology of ME is principally psychological and symptoms are due to deconditioning. However, considerable evidence has shown that GET and CBT either individually or in combination do not improve symptoms of ME; indeed, these treatments can actually cause direct harm to patients through exacerbation of PEM

 

[Jaybee00]

Is there a free link to the whole paper?

I clicked the link for the whole issue but don’t see the article.

 

[SNT Gatchaman]

Following Nightsong's quote on CBT/GET —

In addition, the insistence that the pulmonary, renal, cardiovascular, neurocognitive, rheumatological, olfactory, autonomic, and other manifestations of long COVID are due in whole or in large part to psychological dysfunction engenders tremendous mistrust in long COVID researchers and care providers. The fallacious framing of long COVID as a psychosomatic disease can furthermore create immense barriers for researchers and clinicians who are well-informed and conducting meaningful research because they must simultaneously cope with patient mistrust and peer skepticism.

Later —

The clear scientific consensus—that long COVID is a real, biologically driven, and often disabling illness that continues to threaten the public’s health—‘‘diverges from concurrently developing collective representations of the pandemic,’’ which falsely present the COVID-19 pandemic as being in the past tense and the outcomes of the COVID-19 pandemic in purely psychological terms. This framing results in many people, including some clinical care providers, psychologically distancing themselves from acknowledging the risks a SARS-CoV-2 infection poses to themselves and their families. In the healthcare setting, the framework of COVID as past tense creates underdiagnosis of long COVID, puts vulnerable patients at risk of re-infection, and engenders mistrust; globally, it puts long COVID research funding and support in jeopardy and increases the societal burden of long COVID.

 

[rvallee]

Well ain't those some frank and honest speak-to-power words.