Finding help for long COVID can be challenging. That’s why we’re here to make it easier.
Do you have a question about long COVID? Our team of world renowned long Covid healthcare experts are here to help.. By answering your questions each month, we hope to alleviate some of the uncertainty and provide clear, reliable guidance.
Simply submit your question below, and our team will provide you with the best possible expert answers. We’re committed to helping you navigate your long COVID journey with accurate and compassionate support. Check back regularly to find the answers!
October Expert
DR THIDA THANT MD
Thida Thant is a faculty psychiatrist at the University of Colorado Department of Psychiatry and is the Director of the UCH psychiatry consult service, the Psychiatric Consultation for the Medically Complex clinic, the Easy Consultation rural primary care consult program and the Assistant Chief of Service for the CU Medicine Psychiatry Community Practices.
Since 2020 she has begun to focus on the neuropsychiatric and psychological impact of COVID-19 infection through her role in the University of Colorado multi-disciplinary COVID clinic and overseeing the CU Department of Psychiatry’s Long-COVID Mental Health program.
October Long Covid Questions:
Why are we always dismissed and told to see a psychiatrist when we have Long COVID? Are we being gaslit or is there something you can do to help all these physical symptoms that doctors can’t seem to understand? (CLICK TO VIEW ANSWER)
Many people with medical illness, including long COVID, can experience symptoms of depression, anxiety and sleep disturbance, either directly from the medical condition, associated symptoms such as pain or fatigue, the medications they are taking or the emotional and financial stress of dealing with poor health. Psychiatrists and therapists can help with these symptoms even if they are not the cause” of your physical symptoms and “medically unexplained” symptoms. Mental health professionals can also help with the emotional toll and trauma of having to navigate complex medical systems, having symptoms and concerns dismissed and fear related to the uncertain recovery timeline.
Even if mental health conditions are not causing your physical symptoms, it’s been shown that having active and untreated feelings of stress, depression and anxiety can exacerbate underlying medical conditions, which is particularly important for common long COVID symptoms such as fatigue, brain fog and headache that require comprehensive treatment approaches. In some areas and long COVID clinics, psychiatry is an important specialty in the management of symptoms like brain fog given their training in diagnostic evaluation of cognition, attention and mood, as well as their clinical expertise with some of the helpful psychiatric medications such as stimulants and antidepressants. Our clinic developed this handout for friends and loved ones of long-haulers, though it may also be helpful when meeting with healthcare professionals less familiar with long COVID (in addition training programs such as this). Additional resources can include the CDC’s Living with Long COVID website.
What’s the best way to support a child you care for in coping with the mental and emotional distress of missing activities and social situations, especially when there’s a lingering fear that this might become their permanent state? (CLICK TO VIEW ANSWER)
It can be helpful to reassure children that they are not alone in their experience and that in general children recover more quickly from long COVID than adults (an average of 6 months). When recovering from longer-term illnesses, much of our emotional distress comes from focusing on things we cannot control, things we have lost and feelings of uncertainty, which can make it hard to shift our attention to signs of improvement and progress and other fulfilling parts of our life.
Gratitude work, as well as the ACT resources mentioned in the other question about cultivating hope can be helpful in supporting your child.
They may also find it helpful to connect with other children and families experiencing long COVID. Long COVID Kids is an organization with extensive resources for families experiencing long COVID, including support groups and online “support packs” and guides!
How can a Long Hauler cultivate hope with the uncertainty of ever being healed? (CLICK TO VIEW ANSWER)
Finding a therapist that can provide Acceptance and Commitment Therapy (ACT), can be immensely helpful in learning ways to cultivate hope, enhance coping skills and find ways to lead a fulfilling and satisfying life that aligns with your personal values even in the setting of persistent physical symptoms.
Some steps that people find helpful are exploring ways to “lean into” and accept the uncertainty which often leads to decreased emotional distress (easier said than done I know!), identifying and focusing on what is within your control and cutting down on comparing your current functioning to your pre-illness self.
Some helpful ACT resources:
- https://positivepsychology.com/act-therapy/
- https://positivepsychology.com/act-acceptance-and-commitment-therapy/
Self-help ACT books:
- Get Out of Your Mind and Into Your Life: The New Acceptance and Commitment Therapy – Steven C. Hayes and Spencer Smith
- ACTivate Your Life: Using Acceptance and Mindfulness to Build a Life That Is Rich, Fulfilling and Fun – Joe Oliver, Jon Hill, and Eric Morris
- The Happiness Trap: How to Stop Struggling and Start Living – Russ Harris
Chronic illness toolkits like the one on my clinic website can also be helpful to work through on your own time if struggling to find an appropriate therapist:
Some other great articles and resources for this topic:
- https://returntowellness.co.uk/2019/03/13/10-things-to-do-when-your-recovery-is-uncertain/
- https://www.helpguide.org/wellness/health-conditions/coping-with-a-life-threatening-illness
- https://thehappinesstrap.com/free-resources/
Many people can be reassured by the knowledge that for many long-haulers, recovery can occur over the course of 6 months to several years, even if it slow and fluctuating in nature.
Is there a connection between the manifestation of physical Long COVID symptoms and the onset of psychosis? (CLICK TO VIEW ANSWER)
Acute and long COVID have been associated with new onset psychosis as well as worsening of preexisting psychosis. The mechanism is not fully clear yet, but there have been multiple hypotheses identified, related to inflammation, side effects of medications like steroids, triggering of related medical conditions like encephalitis and the presence of concurrent hospital acquired delirium. For patients with new onset psychosis in the setting of COVID, it is often time-limited and may respond well to antipsychotic medication.
More information can be found on our Long COVID the Answers Psychosis Symptom Page
Has bipolar disorder been found to have any form of association with Long COVID? (CLICK TO VIEW ANSWER)
Though not as commonly reported as depression, anxiety, PTSD and even psychosis, there have been some reports of bipolar type symptoms in the setting of COVID. Symptoms seem to occur more the acute illness phase and benefit from the same psychiatric medication as more classic bipolar I and II disorders such as antipsychotics, mood stabilizers and benzodiazepines.
Can epilepsy be a symptom of Long COVID and precipitate a psychotic episode or episodes? (CLICK TO VIEW ANSWER)
Epilepsy and long COVID have both separately been associated with symptoms of psychosis. Epilepsy has been reported as a possible result of COVID/long COVID, though in general it is felt to have a low incidence, with some studies citing an overall risk of 1% in all people with COVID-19. At this time, it is not known if epilepsy specifically due to long COVID can precipitate psychosis or psychotic episodes.
Throughout November, The Answers will be delivered by Prof Ric Arseneau MD, FRCP, MA(ed)
Ask a Question
Do you have unanswered questions about POTS or Dysautonomia? Now’s the time to find out from the Experts!
During this month’s Ask the Expert you can ask Professor Ric Arseneau, MD, FRCP, MA(ed), a Clinical Professor at the University of British Columbia in Vancouver, Canada and a specialist in Internal medicine with expertise in ME/CFS, Fibromyalgia and Long COVID. He was the Physician Lead for the Provincial ECHO Education Program for Long COVID in BC and was formerly the director of Program Planning of the BC Women’s Hospital Complex Chronic Diseases Program in Vancouver.
Note: Our clinical Experts cannot provide a medical opinion on people’s personal medical history or personal Long COVID illness. They cannot provide a consultation online, by email or video to someone who is not their patient. Our Expert will answer general questions around the subject heading of the month that they are associated with.
Ask Prof Ric Arseneau our November Expert
September Expert
PROFESSOR JAMES C. JACKSON
Professor Jim Jackson, an internationally renowned expert neuropsychologist specializing in cognitive rehabilitation and Long Covid. Prof Jackson directs Behavioral Health at Vanderbilt’s ICU Recovery Center and authored “Clearing the Fog: A Practical Guide to Long Covid.”
Do we know what physiologically is causing brain fog? (Click to view answer)
Brain fog is a very imprecise term but one that has made it way into our vocabulary. Many people with Long Covid use it and it refers to things like problems attending, focusing, processing. There are a huge array of potential contributors to brain fog which means that there is probably no single intervention that will completely alter or “fix” it. Physiologically, many experts think inflammation at at the heart of the matter but, again, there is no “one” cause.
Will games like sudoku help sharpen my brain while off work? (Click to view answer)
There is a vigorous debate going on pertaining how to best “sharpen” your brain. In general, experts believe that challenging your brain through moderately difficult activities – often things that are unusual or new and are reasonably demanding – is beneficial as it can help accelerate the process of neuroplasticity that is at work. In some cases, this can mean playing sudoku, in other cases, learning a language, or playing an instrument, and – perhaps – even engaging in some of the commercially available brain training programs which may help improve neuropsychological functioning.
When your mental health is poor and you feel isolated, lonely, tired and afraid – what would be the best way of managing these emotions. (Click to view answer)
I’m curious if there is a pattern of Long COVID mental health characteristics aligning very closely with PTSD, but more specifically the primary and secondary traits of PTS
There is no “one” way to best manage these difficult emotions except to say – don’t do it alone. Consider finding a mental health provider, a social worker, a member of the clergy or, really, anyone who can walk through deep water with you. You’ll be glad you did.
I have had mild covid brain occasionally. However, yesterday, I had a moment that was truly scary. I totally could not think of a word. Mind was a complete blank. I could picture the thing and could come up with other descriptors, but not the actual word. This was so frightening. What causes this?” (Click to view answer)
This experience – having a moment or two where your mind goes “blank” is a really terrifying phenomenon. This is a fairly common among people with mild cognitive impairments of various kinds and while it is distressing is is probably not proof of any more severe problem, though it does generate a great deal of anxiety which, ironically, usually makes this pattern even worse.
Is exposure therapy for long haulers for things like; light sensitivity and noise and other cognitive impairments helpful?
Or is it better to avoid stimuli that makes things cognitively worse until our brains heal? (Click to view answer)
Experts continue to debate how to best facilitate healing of injured brains. The key – as with almost everything – is to find a balance between engaging in activities and being exposed to stimuli that are too challenging and not engaging in activities at all. I think the most appropriate course of action – if at all possible – is to consult with a speech and language pathologist (SLP) – SLPs are the content experts who are the best guides and authorities on brain injury recovery – you can find one in any moderate or large city.
Is there a pattern of Long COVID mental health characteristics aligning very closely with PTSD, but more specifically the primary and secondary traits of PTSD? (Click to view answer)
Regarding PTSD, this is a syndrome that is very common in people with Long Covid – it may differ slightly than more typical PTSD in its’ presentation but, in general, it is very similar. In particular, people with Long Covid who have PTSD especially struggle with what is called medical avoidance – this is a concern because it leads them to miss appointments, avoid going to the ER or the hospital etc even when it medically called for. Treatments exist for PTSD, whatever the cause, and are highly effective – please considering seeking out a qualified provider who can help support you.
August Expert
PROFESSOR TODD DAVENPORT | PEM / PENE
Question: I can always tell when my son is about to have an energy crash. His skin turns a greenish tinge and becomes very pale, even though he’s still acting normal and energetic. The next day, he wakes up with only about 20% of his usual energy, and it takes days for him to recover to a decent energy level. What could this early skin warning be a sign of? How can we prevent an energy crash, especially in children who love to keep going when they’re having fun? (Click to view answer)
Answers:
- Skin changes are noted in some people with post-exertional malaise, including as a potential early warning sign. While no specific mechanism for changes in skin color has been show in the scientific literature, one possible explanation for this skin color change may be dysautonomia resulting in shunting of blood away from capillaries near the skin. Relatedly, small fiber neuropathy sometimes can result in a white or mottled red-white appearance.
- It’s so hard to help children pace when they’re feeling good and having fun, because it doesn’t feel like “help” for anyone involved. For ideas on pacing in children to prevent PEM crashes, I recommend the blog posts by Long Covid Kids on Cautious Tortoise and Pacing Penguins.
Question: What do you think of the hypothesis that Post-Exertional Malaise (PEM) is a conditioned immune response? (Click to view answer)
Answer:
It’s clear immune dysfunction is a part of PEM. However, any hypothesis explaining PEM must also explain the proximate cause of observed deficiencies in energy metabolism and consequent disablement. It’s perhaps more feasible that dysfunctional cellular energy production and utilization causes the characteristic immune dysfunction of PEM than the other way around. The fact that various studies have identified abnormal oxidative metabolism in various immune cells provides some support to this idea. A couple of models have been proposed to link metabolic and immune dysfunction, including the metabolic trap and itaconate shunt hypotheses. I look forward to more definitive data on these potential pathophysiological relationships that have relevance to treatment.
Question: I’m used to resting my bad back while reading or playing video games, but using my brain really drains me now…how do you spend your day not using your body or brain for most of it? (Click to view answer)
Answer:
Cognitive stressors are known precipitants of PEM crashes. However, neurocognitive pacing is such a huge challenge, especially for people whose jobs require significant brain usage; who enjoy reading, puzzles, and games; or who cultivate a vibrant internal world. Establishing time limits for reading, puzzles, and games and enforcing those limits with timers may help. Some people find meditation helpful to help turn down their thinking. Yoga nidra is a form of meditation that is accessible to people with PEM, because it is done while laying down in a “conscious sleep.” It’s also important to remember that different triggers are cumulative and may result in a crash. This means some people also find success with pacing activities that do not seem cognitive to build a reserve of capacity that can be used for cognitive activities. Pacing triggers such as physical activities and exposure to environmental stimulation also may help build a reserve that improves your cognitive symptoms and signs.
Question: I have moderate-sever post-exercise malaise and brain fog. I have gotten much better about managing energy and avoiding crashes, and I think some of my supplements are helping.
Here is what I am unsure about. If I can tolerate something without symptoms, should I do it and hope to build up tolerance, or is rest the most important? Do we know if exercise is harmful or helpful if it doesn’t cause symptoms?
For example, if I can do one strength workout a week without symptoms, but 2 causes symptoms or a crash, should I be doing one workout? Or none? (Click to view answer)
Answer:
- Pacing always involves balancing activities with rest. Even people without PEM pace their exercising! Early in managing PEM, the balance swings in favor of resting to manage symptoms and signs. Some people with Long Covid are able to return to some kind of physical activity without causing a PEM crash. Staying under the line of “just enough” and “too much” is particularly important for someone living with PEM, even if it is improving to the point that some exercise has become possible again, because future crashes are still possible.
- You are not going to exercise your way out of PEM by exercising more or harder. For someone with PEM, it’s still always better to do “a little too little” than “a little too much” physical activity. So, how can you find that line?
- Focus on short term activities: Short intervals minimizing time spent above your anaerobic threshold heart rate with complete rest are a good place to start. Starting with activities done laying down (like breathing, stretching, and limb movements) will reduce the work of the heart, improving preload and reducing orthostatic intolerance.
- Pay attention to how you feel: If you notice more PEM signs and symptoms after an exercise session, wait until they completely resolve for at least a couple of weeks before beginning again at a lower level.
- Watch your biometric data: An increasing resting heart rate and lowering heart rate variability at rest may suggest a crash in the near future, even if you’re feeling good.
- Maybe the hardest part of being able to do a little exercise is wanting to do more exercise. Remember: less is still more, be careful with yourself, and to keep up with what got you to this point.
Question:
Does post exertional malaise ever go away so you can exercise again? Or are people just having to pace their lives chronically? (Click to view answer)
Answer:
- This is an excellent question that gets my standard, universally unsatisfying response: maybe. Of course, my response isn’t to make light of a difficult conversation, but rather to highlight the uncertainty of this issue.
- Historically, most people with PEM related to ME/CFS have needed to pace over the long-term, because of a recovery rate of around 4-8% or less. Recovery is tricky to define and identify, because remissions may be temporary.
- Recovery rates for people with PEM related to Long Covid appear more promising, which suggests that at least some people are able to return to exercising in some form.
- We clinicians and researchers are still inaccurate at predicting who may improve, and recovery is non-linear when it happens. So, it is important to pace carefully while experiencing symptoms and signs of PEM, even if the capacity and desire for some more physical activity may be starting to come about.
Question: Is there an accepted supplementation regimen that has provided benefits? (Click to view answer)
Answer:
- Dietary supplements are a mainstay of PEM self-management. A recent systematic review and meta-analysis did not yield promising results from neutraceutical treatments for PEM related to ME/CFS. There are a number of challenges in studying neutraceutical treatments, including patient selection, potency and quality, adequate masking/placebo controls.
- While there is no widely accepted regimen, many people find neutraceutical treatments helpful that may reduce inflammation and support mitochondrial, immune, cognitive, circulatory, and digestive functioning.
- In this online lecture, Dr. Jeannette Brown goes through common over-the-counter dietary supplements and their potential uses for people with Long Covid. It is oriented more toward primary care practitioners, but there may be some information to which you can point your own medical team.
- Dr. Martha Eckey, and pharmacist living with Long Covid, has done the most extensive survey work to date regarding the use of neutraceutical treatments in Long Covid and ME/CFS. Her results may serve as a starting point to understand, on average, how often various treatments may or may not help.
- Before starting any new medication or dietary supplement, make sure to consult a physician or pharmacist who is knowledgeable about potential interactions between drugs and supplements to avoid side effects and toxicity.
Question: I get aching legs as part of my post-exertional malaise crashes. It’s not a sharp pain but just an all over ache. Is there anything to alleviate it? (Click to view answer)
Answer:
- I always recommend making sure aching legs aren’t associated with circulatory problems that are treatable, so make sure to check in with your medical team.
- Aching legs may be a sign of immediate or short-term PEM. While prevention is the best “medicine,” some people have success with self-treatments like elevation and gentle recovery compression.
Question: How do you get a diagnosis for PEM? (Click to view answer)
Answer:
- The diagnosis of PEM is usually made using basic information from asking questions and doing some basic medical tests. A digestible overview for identifying and evaluating potential PEM may be found in the paper by Grach et al. 2023. Perhaps the fullest case definition of PEM is the International Consensus Criteria for Myalgic Encephalomyelitis (ICC-ME), which was published in 2011 by Carruthers et al. In this case definition, you will find they don’t use the term PEM, but rather identify this phenomenon as post-exertional neuroimmune exhaustion, or PENE. The things I like about the ICC-ME are that it defines the post-exertional signs and symptoms comprehensively, distinguishes ME from atypical ME or idiopathic chronic fatigue, and comments on severity.
- Some people seek cardiopulmonary exercise testing (CPET) as part of the differential diagnosis of PEM and to document disability associated with it. People with PEM often have reduced aerobic capacity and workload at submaximal levels of exertion that are in line with the work of daily activities, which is worsened on the second day of a two-day CPET.
July Expert
Dr Daniel Griffin, MD PhD CTropMed CTH
Question: Are there any predictive or early warning signs that an individual will be affected by Long COVID? (Click to view answer)
Answer: While who gets and who does not get Long COVID seems like the outcome of the lottery there are certain baseline characteristics that impact a person’s risk of getting Long COVID. While certain characteristics such as being hospitalized, female sex, higher body mass index, smoking, preexisting comorbidities, not receiving early antiviral therapy, and not being vaccinated are associated with an increased risk of Long COVID, sequelae of COVID-19 are seen in all populations are varying incidence levels.
EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH
Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders
Question: Other than vaccination and masking what can individuals do to avoid Long COVID? (Click to view answer)
Answer:
While avoiding COVID-19 in the first place is the best way to prevent Long COVID, behavior modifications, masking, and improved ventilation can reduce the risk of exposure. Vaccines decrease the risk of developing Long-Term COVID-19 in adults, adolescents, and children. There has been some excitement about the possible impact of early use of metformin on the risk of developing Long COVID, but this requires a challenging regimen in the published trial and has not been repeated.
There is also uncertainty whether early treatment with an effective antiviral such as nirmatrelvir or molnupiravir may reduce the risk of all post covid conditions in people who are vaccinated, unvaccinated, boosted, and with primary and SARS-CoV-2 reinfection. Multiple studies have demonstrated that treatment of acute COVID-19 with nirmatrelvir-ritonavir can reduce the incidence of major adverse cardiac events (MACEs) (cardiovascular death, myocardial infarction, stroke, new-onset heart failure or heart failure hospitalization or ventricular arrhythmia).
Early treatment with nirmatrelvir-ritonavir during the first 5 days after symptoms onset is associated with not only major (reduction) in cardiac events and acute events such as hospitalization and death, but also a reduction in post-acute incidence of congestive heart failure, atrial fibrillation, coronary artery disease, chronic pulmonary disease, acute respiratory distress syndrome, interstitial lung disease, and end-stage renal disease.
Despite compelling data that monoclonal antibody therapy can have dramatic impacts on acute COVID-19 outcomes, our investigations looking at the ability of early monoclonal antibody therapy to prevent Long COVID have not been encouraging. While studies of the administration of monoclonal antibody therapy have not clearly demonstrated a reduction in the development of long-term COVID, early administration of COVID-19 convalescent plasma (CCP) has demonstrated a reduction in cytokine levels and a lower odds of development of post-COVID conditions. Corticosteroids may exert a protective effect against the development of post-COVID-19 syndromes if administered appropriately to hospitalized patients with acute COVID
EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH
Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders
Question: Does Long COVID exacerbate neurological conditions such as Multiple Sclerosis? (Click to view answer)
Answer: Unfortunately, acute COVID-19, as well as Long COVID, can exacerbate many conditions, including MS.
EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH
Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders
Question: When you have Long COVID, is it worth having your next vaccination or will it not be as effective? (Click to view answer)
One can open a discussion of evidence-based therapeutics for Long COVID-19 with optimism, as there are hundreds of ongoing clinical trials for Long COVID-19, the majority of which test potential therapies. Before its consideration as a therapeutic, there were questions about the safety of vaccinating patients with Long COVID symptoms. This was followed by evidence suggesting that COVID-19 vaccines had therapeutic benefits for patients with Long COVID if given after the development of Post-COVID sequelae. Vaccination has also been shown to reduce the severity and impact of Long COVID on patient’s social, professional, and family lives.
It appears that the benefits of COVID-19 vaccines on Long-COVID are present with a single vaccine dose but increases with a second and even more with a third dose of vaccine. COVID-19 vaccination in the context of PCC is associated with reduced symptoms, increased well-being, and downregulation of systemic markers of inflammation.
EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH
Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders
July 2024 LONG COVID ANSWERS FROM EXPERT: Dr Daniel Griffin, MD PhD CTropMed CTH
Credentials:
Chief, Division of Infectious Disease and Travel Medicine | Optum / Tristate
Infectious Disease Specialist / Clinical Instructor of Medicine
Columbia University Vagelos College of Physicians and Surgeons
Department of Medicine-Division of Infectious Diseases
President –Parasites Without Borders