Lessons learned in implementing a multidisciplinary long COVID clinic 2024 Palacio, Klimas et al

[Andy]

Abstract

The diagnosis and treatment of long COVID patients is challenging. Our aim is to share lessons learned using a multidisciplinary approach within the Veterans Affairs system. Our long COVID clinic is based in primary care but has imbedded rehabilitations specialists, nutrition. whole health and different specialists within internal medicine. We conduct an extensive work-up to evaluate the presence of end-organ damage, ongoing inflammation and dysautonomia. Our treatments are based on the prior experience that the VA system has on chronic fatigue syndrome and gulf war illness.

Paywall, https://www.amjmed.com/article/S0002-9343(24)00337-1/abstract

 

[Yann04]

That’s a really short and undescriptive abstract for a paywalled article. But:

Our treatments are based on the prior experience that the VA system has on chronic fatigue syndrome and gulf war illness.

Is not the best sign as far as I know

 

[SNT Gatchaman]

Mixed bag I think, with some good and some less supported points. A few snippets —

Lack of awareness of LC status: The screening process revealed that a large proportion of individuals were not aware or diagnosed with LC after months or years of multi-organ symptoms. Moreover, in another communication we will report that even among those who consider themselves recovered, the prevalence of symptoms that appeared after COVID was high.

Using self-reported questionnaires reveal the real distribution of symptoms: Fatigue, brain fog, anxiety/depression, pain, post exertional malaise (PEM), orthostatic intolerance are the most common symptoms (Table 2). Thus, the yield of the instruments we use (COVID-19 Modified Yorkshire Rehabilitation scale, COMPASS 31 and the DePaul Symptom Questionnaire for PEM) is high.

High prevalence of autonomic dysfunction and mast cell activation syndrome. [...]

a) Many patients without typical symptoms such as dizziness or palpitations, have an abnormal NASA LEAN test (postural tachycardia syndrome and less frequently postural hypotension) or an abnormal COMPASS-31. The yield of these tests is high in our population. Identifying orthostatic intolerance allows providers to implement one or more evidence-based therapeutic approaches.

b) Mast cell activation syndrome mediates some symptoms. Many patients report triggers for their symptoms and respond to a mast cell activation treatment protocol that relies on approaches available to all Veterans: removing environmental (extreme temperatures, pollution) toxic (mold, heavy metal) and chemical exposures, adequate hydration, implementing a low histamine diet, the use of H1 and H2 blockers, replacing Vitamin D, supplementing Omega 3 and magnesium an stress reduction strategies.

c) Vagus nerve stimulation with devices or techniques such as breathing exercises help improve symptoms.

Abnormal cortisol: Other investigators have reported a high prevalence of low cortisol. In our clinic, only 5% of patients have low cortisol levels and usually have a normal ACTH stimulation test, suggesting that a controversial condition described as adrenal fatigue may play a role in some patients with LC. A potential explanation is that we measure cortisol levels during an in-person visit which patients state is a stressor to their body. Ideally, we could measure and compare these results to cortisol levels from home-based urine spot tests that correspond to the real day to day experience.

Challenges measuring and improving cognitive function: Although a good proportion of patients have an abnormal MOCA score, it does not correlate with the magnitude of brain fog. Moreover, brain fog is the symptom more resistant to treatment, calling for significant research in this area.

I think we've also seen many people with disabling brain fog having normal MOCA scores. The instrument is inadequate for this condition.

Understanding post exertional malaise: Patients and providers alike have difficulty grasping how a small increase in physical or mental activity can lead to a “crash” hours to days after the increase. As patients start feeling better, they increase activity or start rehabilitation programs that increase effort too soon or too much leading to push-crash cycles. This concept requires constant education and communication with patients. We ask them to journal their physical activity so they can recognize patterns. An exercise physiologist holds a 1-hour session in the group clinic series explaining the biological underpinnings of PEM and how to safely pace and increase physical activity. Patients state that pacing is key to improving symptoms. In challenging cases, conducting a cardiopulmonary test can provide the objective information patients need to adhere to the individualized pacing and rehabilitation program developed by our LC trained physical therapists.

Here they're talking about pacing, while at the same time increasing physical activity. And a CPET is not without risk.

Building trust is more important than ever: The lack of LC awareness and knowledge leads to confusion, misinformation and lack of trust. Patients appreciate being listen to and honesty about what we know and do not know. Building trust is key to establishing the partnership needed for LCC. Patients are more willing to try non-medical approaches (e.g mindfulness) and to share useful information about patterns and strategies tried that can help recognize a way forward. Often times they are trying too many supplements or strategies triggering the immune system. Understanding the reason for a slow multifactorial holistic approach, make patients more willing to work collaboratively implementing small changes that make sense to them and to their provider.

Physical and autonomic rehabilitation plan: We personalize the program to each individual.

Patients that are bedridden or housebound will start only with the 7-week group workshop, The goal is establishing the maximum tolerable level of activity and develop a slow progression that does not lead to post exertional malaise. Once individuals tolerate basic activities of daily living they will begin either a physical/autonomic rehabilitation program. This is created by physical medicine providers in accordance to our agreed treatment protocol to avoid relapses. The goal is to use an offensively low intensity program to get individuals to plateau in a state that tolerates slightly more activity. The program stresses that individuals must stay a period in the plateau before attempting to increase the number of minutes or the intensity of the activity. The purpose is that if individuals crash after that attempt, they only crash back to the previous plateau. Service can be delivered by telehealth or in person. For individuals with difficulties advancing, we complete cardiopulmonary exercise testing to establish their response to activity and determine their anaerobic threshold and inform the rehabilitation plan.

On that last point I don't know that one could be at all confident that a crash will only ever take someone back down to their previous level of functioning.

 

[Amw66]

Mixed bag I think, with some good and some less supported points. A few snippets —











I think we've also seen many people with disabling brain fog having normal MOCA scores. The instrument is inadequate for this condition.



Here they're talking about pacing, while at the same time increasing physical activity. And a CPET is not without risk.





On that last point I don't know that one could be at all confident that a crash will only ever take someone back down to their previous level of functioning.

This

 

[Hutan]

Abnormal cortisol: Other investigators have reported a high prevalence of low cortisol. In our clinic, only 5% of patients have low cortisol levels and usually have a normal ACTH stimulation test, suggesting that a controversial condition described as adrenal fatigue may play a role in some patients with LC. A potential explanation is that we measure cortisol levels during an in-person visit which patients state is a stressor to their body. Ideally, we could measure and compare these results to cortisol levels from home-based urine spot tests that correspond to the real day to day experience.

It just goes on and on. Only 5% of patients are found to have cortisol levels lower than a reference range.

Here's guidance on establishing standard ranges for tests:

Reference interval development has classically relied on concepts elaborated by the International Federation of Clinical Chemistry Expert Panel on Reference Values during the 1980s. These guidelines involve obtaining and classifying samples from a healthy population of at least 120 individuals and then identifying the outermost 5% of observations to use in defining limits for two-sided or one-sided reference intervals. More recently, decision limits based on epidemiological outcome analysis have also been introduced to aid in test interpretation.

So, it is likely that the cortisol reference range has been set so that 2.5% of the healthy population have a cortisol level below the low end of the range and 2.5% of the healthy population have a cortisol level above the end of the range. Here, the authors are reporting that 5% of their LC sample have a cortisol level below the low end of the range. That difference is nothing - on this measure, their LC population is looking exceedingly normal. We have discussed ad nauseam reasons why the mean cortisol level of people with LC or ME/CFS might be lower than that of healthy people - e.g. most are not regularly engaging in high impact physical activity which mildly increases cortisol levels.

There is nothing here to suggest that 'adrenal fatigue' is a characteristic of LC.