long COVID and ME/CFS

One of the fears that I have about COVID is the risk of experiencing long COVID, where any number of a vast constellation of symptoms occurs for months/years after the acute infection phase.

The symptoms are very similar to those that characterize ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have a family member with ME/CFS, so I am achingly familiar with the level of disability that can result. ME used to be referred to as fibromyalgia in the US, but now the ME designation is more common.

The October 5, 2022 edition of the (US) National Public Radio show On Point features an extensive discussion of long COVID and ME/CFS and how long COVID researchers and clinicians are learning from their peers who have been working for years on ME/CFS. All of these conditions are underdiagnosed and undertreated, so I wanted to share this with all of you. I believe this link will permanently take you to a recording of the episode. If the link breaks, you can try searching from the On Point link above or searching on your favorite podcast platform.

Anyone who has experienced these conditions or seen a loved one contend with them knows how difficult they can be. I want to raise awareness so that everyone affected can get the help they need. I also want everyone to realize that these conditions exist and are serious. Too often, affected people are dismissed and told their symptoms are “all in their heads.” While there is still much to learn, help is available, although it may be difficult to find, depending on the medical resources nearby. I hope we will all support research and treatment expansion so that the millions of people affected get the help they need.

still COVID

I’m sad to report that the total death toll in the United States from COVID-19 is now over 1.04 million with over 93 million confirmed cases. The actual case count is no doubt higher, as some states have stopped reporting and many cases that are detected by at-home testing are not reported to health agencies at all. New cases are still occurring at a rate of 93,000 a day with 457 deaths (7-day rolling average on August 22, 2022).

It’s still heart-breaking.

And still considered by most experts a pandemic, although perhaps heading in the direction of being considered endemic in the United States soon, as influenza is.

Most cases in the US now are Omicron variants BA.4 or BA.5. There is some hope that new boosters that contain components targeted at Omicron variants might give some additional protection going into the fall and winter, especially against hospitalizations and deaths, but we will have to see if a) people actually get vaccinated and b) the vaccines do boost protection for any length of time.

And/or c) a new strain could develop that evades all prior immunity, is even more wildly contagious, doesn’t respond to current treatments, and/or causes more severe illness.

At home, B, T, and I all still remain uninfected to the best of our knowledge. It’s possible that one or more of us have had an asymptomatic case but there is no real way to know. Any time that we have had symptoms, we have tested, as we have also for travel and after known exposures. We also have had extra tests as part of our participation in the Pfizer/BioNTech vaccine trials. T remains a participant in the third shot trial; B and I exited the trial in order to receive a fourth dose before travelling to the UK this spring. I believe that our vaccination status has helped us to avoid infection and plan to receive one of the new booster shots this fall, if I’m eligible for what will be my fifth dose. T may be eligible for a booster after she finishes with her trial participation this fall if those boosters are available to people under 50.

Broome County, New York, managed to have only a few weeks in the Centers for Disease Control category of low community risk for transmission before going back up to medium. I’ve gone back to masking with a KF94 while shopping or in other indoor public places. I’m making determinations on small gatherings on a case by case basis. Other than church services, I’m avoiding large gatherings.

Some people think I’m being overly cautious at this point but I am still trying to avoid infection, if I can. At the very least, if I do become infected, I will know that I was doing everything I could to keep myself healthy so that I don’t suffer guilt on top of COVID. I am well aware that, even with multiple vaccine doses, masking, avoiding crowds, etc., Omicron, especially BA.5, has been quite successful at evading immunity and protections. I know from what the public health experts are saying and also anecdotally among my friends. There are very few left who have managed to stay COVID-free in recent months.

A large part of my motivation to keep from getting infected is fear of long COVID. While SARS-CoV -2 is too new a virus for researchers to fully understand, it’s possible that I may have some genetic risk factors that could come into play regarding long COVID. None of this is helped by the fact that the underlying medical conditions I have are themselves not well understood.

So, I’ll keep on doing the best I can to stay as healthy as possible.

Wish me luck.

I’m going to need it.

Pfizer study exit

As you many recall, spouse B, daughter T, and I have all been participants in the Pfizer/BioNTech COVID-19 vaccine Phase III clinical trial since summer of 2020. B and T received the vaccine while I was in the placebo group, although I received the vaccine through the trial after the emergency use authorization came through. All three of us continued in the study of third doses.

I had hoped that Pfizer would extend our study to include fourth doses but they have decided not to do so. After researching and discussion with family and medical practitioners, I have chosen to end my participation in the trial early in order to receive a fourth shot, which I did on Saturday.

In the US at this point, government and public health officials are not making COVID policy as much as providing information for individual decision-making. I admit that this is frustrating as community behavior is so important with pandemics in general and the increasingly contagious omicron variants in particular. Emphasis has also shifted away from individual infection rates and toward making sure there aren’t enough serious infections to cause the health system to collapse.

My priority is still to try to avert infection. I don’t want to be sick if I can help it. While rates of hospitalization and death are low among those vaxxed and boosted, serious cases are still possible. While some are lucky to have no or mild symptoms, many still feel like they are suffering the worst flu/virus ever, being out of commission for at last a week. I am also concerned about the risk of long COVID, estimated to affect as much as thirty percent to over forty percent of total cases. Vaccination is estimated to halve the risk. (Please note that definitions of long COVID and the risk factors are currently in flux. As more data are collected and analyzed, these estimates will likely change.) Due to some factors in my family history, I may be at increased risk for developing long COVID. I also know that COVID infection can cause severe flares in people with interstitial cystitis, which I have.

I am very concerned about the possibility of inadvertently infecting others, including my family. I also have several immunocompromised friends who I want to protect.

Infection rates are high in my county now. I am continuing to mask in public and am back to avoiding crowds, including church services, concerts, and plays. Even with the high case counts here, most people are not taking precautions so I am being extra careful.

The boost to resistance to infection is likely to be short-lived, only a few weeks, but this is a critical time for me to have that extra protection. In mid-May, I am travelling to Northampton, Massachusetts to attend my 40th reunion at Smith College. The protocols there are strict, including mandatory vaccination and boosters, indoor masking, and many outdoor activities, so I feel relatively safe attending.

Ten days after my return, B, T, and I will travel to London, UK to visit daughter E and her family. Again, we will be very cautious with our behavior to avoid infection. We also want to protect our family, especially granddaughters ABC and JG who are too young to be vaccinated. JG is even too young to mask.

I’m happy to report that my side effects from my fourth shot have been mild, mostly a sore arm and a bit of tiredness.

I am grateful to Meridian Clinical Research who handled the trial locally and to Pfizer and BioNTech for developing the vaccine and getting it out to so many people so quickly. I am happy to have been of service by participating in the trial and stand ready to participate in additional clinical trials as they become available.

I will close with my accustomed plea for people to do all they can to end the pandemic with whatever means are available to them – vaccines, distancing, masking, avoiding crowds, increasing ventilation, etc. The pandemic is not over and our lack of attention only increases the possibility of new variants and extends the length of time before SARS-CoV-2 becomes endemic.