Some thoughts on COVID-19 from my ME/CFS specialist

All posts on COVID-19 become outdated rapidly. I will try to provide updates where relevant.

Yesterday (4/24/2020) I had the opportunity to consult with my ME/CFS specialist and, naturally, I was eager to get his take on COVID-19 and ME/CFS. I had many questions, but they boiled down to the following: How is the disease impacting our patient population? What does the course of this disease look like in ME/CFS patients? Are people with ME/CFS more susceptible to the severe manifestations of the illness? What does recovery from COVID-19 look like for us?

Anecdotally, I have seen several accounts (~20?) from ME/CFS patients on Twitter and Facebook who have or have had suspected COVID-19. While many people report immense suffering, I have not heard of anyone with ME/CFS requiring ventilators or other extreme life-saving interventions such as ECMO. Nor have I heard of any deaths, thankfully. Clearly, the anecdotal data I have gleaned from social media hardly represents an adequate sample from which to draw conclusions. However, I find it interesting that there are not more reports of critical care cases and fatalities coming from the ME/CFS community given our impaired immune status.

Re: ME/CFS patient response to COVID-19

My doctor recently participated in the ME/CFS Clinician Coalition meeting held remotely via Zoom in Salt Lake City along with 59 other physicians. COVID-19 featured prominently in their discussions on the 2nd day of the meetings.

According to my doctor, two lines of thought emerged at the meeting. On the one hand, ME/CFS patients could be less likely to experience a severe form of COVID-19 due to an already overactive immune system. On the other hand, COVID-19 could be yet one more factor leading to an increase in circulating cytokines, leading to the dangerously exaggerated immune reaction seen in many of the more severe and often fatal COVID-19 cases. According to the clinicians’ group, we currently do not know how people with ME/CFS as a population are responding to COVID-19. The data simply do not exist data yet.

My latest panel showing elevations in several cytokines. This panel can be ordered through the Institute for Neuro-immune Medicine (INIM). It would be interesting to have these panels for ME/CFS patients both pre- and post-SARS-COV-2 infection.

Interestingly, very few of the ME/CFS specialists present at the meeting are seeing COVID-19 cases in their practice simply because they are not the first point of contact for patients needing acute medical care. With COVID-19, patients are likely to access care more locally, he said.

The Solve ME/CFS Initiative is hoping to leverage the new You + M.E. Registry to better understand how COVID-19 impacts ME/CFS patients. The Solve ME/CFS Initiative has incorporated a questionnaire on COVID-19 in their registry. They are also spearheading collaborations with other COVID-19 registries to track the emergence of post-viral ME/CFS-like symptoms. While it still may be early days for this project, hopefully, it will afford us a better sense of how this new virus is playing out in our patient population. Please consider signing up if you have or have had COVID-19!

Sample pages from the COVID-19 questionnaire in the You + M.E. Registry.

There are only two practitioners in the clinicians’ group who have both ME/CFS and non-ME/CFS patients. My doctor is one of them. The hope is that these two practices can collect data on COVID-19 responses in both types of patients. While most ME/CFS research has come to a screeching halt (according to my doctor), hopefully, this line of inquiry will yield some useful results.

This coming week, for research purposes I will be tested for antibodies (one of the ELISA tests) and will get a nasal swab to determine if I have had exposure to SARS-CoV-2 (the virus that causes COVID-19) and, if so, whether the infection is still active. Ideally, one would have three negative PCR tests before being cleared. My doctor has amassed reams of data on his patients, which will allow him to see how immune signatures (namely cytokine profiles) might change in response to COVID-19. I presume I will be negative on both tests, but then again I did travel by plane in late February/early March and did have an acute viral illness on my trip, though I did not have typical COVID-19 symptoms so I assumed it was a common cold – one that I picked up from Elizabeth Warren, of all people!

I went to an Elizabeth Warren rally in mid-February before the Nevada caucus and was excited to hear her fiery speech. Instead, when she opened her mouth hardly any sound came out – she had lost her voice due to some virus she picked up on the campaign trail! After the event I wheeled myself away from the crowds, hoping to avoid a germ-laden handshake, but an organizer offered to take me to the front of the line to meet her. I didn’t want to catch her bug but I couldn’t resist speaking with her. A week later I got sick (I never get sick!), but I don’t think it was COVID-19 :/ My how the world has changed since then.

My doctor told me that any people with ME/CFS who have not had COVID-19 must take every precaution to avoid the illness to be on the safe side.

Re: Vaccines and immunity to COVID-19

My doctor is not very hopeful that a vaccine will be terribly effective. Already there are at least 8 strains of the virus, making it less likely that one vaccine will work for long. After all, there is no vaccine for SARS, the deadly disease caused by another zoonotic coronavirus that emerged in Asia in the early 2000s. Instead, he, along with many others, believe that this is a new human disease that will be with us for some time.

He also thinks having COVID-19 may not afford much immunity in the future, as was the case with the earlier SARS and MERS viruses. Just this morning the World Health Organization (WHO) said there is no evidence that recovered COVID-19 patients cannot be reinfected. They warned against the idea of immunity passports. We may be dealing with a situation similar to flu – having had the virus and associated antibodies may not afford long-term immunity.

Re: COVID-19 treatments

We are still largely in the domain of experimenting with existing drugs. At least there are several trials underway in the United States looking at different treatments, such as remdesivir, hydroxychloroquine (which many ME/CFS patients already take for inflammation), and convalescent plasma from recovered COVID-19 patients. The data for some of the drugs, including remdesivir, do not look very promising and it is hard to imagine convalescent serum being applied at the scales presently needed. We need better drugs for this disease.

He was adamant that the best way forward will be a new antiviral drug. Not a repurposed drug such as remdesivir, but an entirely new one. And, it will need to be quite effective if society ever hopes to ever get back to some sort of normalcy. He likened the situation to HIV/AIDS. As with HIV, there may be no effective COVID-19 vaccine. However, there are anti-retroviral drug combinations that are quite effective in treating AIDS. These drugs, combined with adequate safety measures (in the case of HIV/AIDS, doctors wearing gloves, safe sex, education), have helped to control the HIV. Will we also need a combination of antivirals and social distancing measures to manage COVID-19?

One other approach my doctor mentioned is an IL-6 blocker (i.e., tocilizumab) to tame the extreme inflammatory response sometimes seen with COVID-19. An IL-6 blocker is a type of antibody directed against IL-6 receptors and is used to treat rheumatoid arthritis and other autoimmune conditions. Initial reports suggest there has been some success in treating cytokine release syndrome from COVID-19 with this class of drugs. The use of this drug seems a bit risky because suppression of immune signaling could risk a downstream infection. Still, as a last resort, and if on death’s door, he said he would consider trying it in his patients.

I meant to ask about his opinion on hydroxychloroquine, a drug I have taken in the past for inflammation. I do not have the main cardiac risk factor associated with the drug – a long Q-T interval. Hydroxychloroquine can worsen this condition, causing fatal heart attacks in some. In a recent interview, Dr. Ian Lipkin shared that he took hydroxychloroquine early in his course with COVID-19. He was the first to say that it is unclear if the drug had any effect, but he was spared the worst of this disease. Some trials are reporting spikes in deaths in patients treated with hydroxychloroquine, prompting warnings from the FDA. Retinopathy is another serious side effect. Azithromycin, a common antibiotic sometimes paired with hydroxychloroquine in COVID-19 trials, also is a Q-T-prolonging drug.

Certain drugs, such as azithromycin and hydroxychloroquine can prolong the Q-T interval and result in fatal heart attacks.

Re: Interaction between COVID-19 and herpesviruses

Apparently, herpes viruses are reactivated by COVID-19. This may result in a one-two punch when people with ME/CFS are infected by SARS-CoV-2. Both COVID-19 and reactivation of herpes viruses could further plunge ME/CFS patients into a prolonged recovery. Let’s hope not.

9 thoughts on “Some thoughts on COVID-19 from my ME/CFS specialist

  1. Thank you so much for your clear reporting on ME/CFS and COVID 19. It seems to fit with everything I’m reading, but it’s good to hear it from someone in the thick of it who knows our particular conditions.

    I really appreciate all you do for the community.


  2. Why do you mean by “These drugs, combined with adequate safety measures, have helped to control the HIV virus.” What safety measures are you referring to? Also saying HIV virus is redundant.


    1. By safety measures wrt to HIV/AIDS I am talking about doctors and dentists wearing gloves (hard to even remember when they did not, but I do remember!), safe sex, education, etc. With COVID-19 it will might like keeping some of the social-distancing measures like not shaking hands, limiting crowds, etc. I totally agree about the redundancy with HIV! I will fix that and also saw a couple other errors that I fixed (ie “COVID-19” infections – should be SARS-CoV-2 infections). Thanks for reading!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s