The reluctant patient

I am exhausted from being a patient. In the early days of my illness, I kept a journal, tracked symptoms, and made schedules. Now, I cannot be bothered on most days, but recently I have had to re-engage with my medical care due to declining health. For years, I actively pursued tests that might shed … Continue reading The reluctant patient

When playing “normal” with a chronic illness no longer works

I find it increasingly challenging to be part of the healthy world as my illness grinds on. After all, who wants to hear about the various insane things my body is doing at any given moment? Heck, I don't even want to think about my illness, let alone talk about it. On some level, I … Continue reading When playing “normal” with a chronic illness no longer works

Understanding the new COVID-19 vaccine technologies

I had several questions about the new COVID-19 vaccines but found it surprisingly difficult to find the detailed information I was seeking in a consolidated place. This three-part blog synthesizes some of the information I found informative. I focus mostly on the biology of the new vaccine technologies, including mRNA, recombinant viral vector, and recombinant … Continue reading Understanding the new COVID-19 vaccine technologies

10 tips for long-haulers seeking disability benefits

A couple of weeks ago, I wrote a piece for the Mighty about how long-haulers, those who remain sick after getting COVID-19, will likely face many of the same issues people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) deal with when applying for disability benefits. Having a contested illness, such as ME/CFS or chronic COVID, makes … Continue reading 10 tips for long-haulers seeking disability benefits

Balancing hope and acceptance with a chronic illness

Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly hope and acceptance are not mutually exclusive, but over time … Continue reading Balancing hope and acceptance with a chronic illness

Blunted heart rate and implications for pacing in ME/CFS

In a nutshell: Chronotropic incompetence (CI) - the inability of the heart to keep pace with increased activity - is common in myalgic encephalomyelitis (ME/CFS)CI is worse in women with ME/CFS but both men and women have a lower than expected heart rate at the anaerobic thresholdCI is worse in those who have a more … Continue reading Blunted heart rate and implications for pacing in ME/CFS

A long, technical support letter helped me to win my SSDI case for ME/CFS!

Note - this blog is geared toward an American audience as it only applies to federal disability in the United States. I am certainly no expert on disability and the thoughts below reflect my experience only, while acknowledging that there are many ways to approach disability benefits.  I will admit to bumbling through my Social … Continue reading A long, technical support letter helped me to win my SSDI case for ME/CFS!

Energy systems and pacing in ME/CFS

Click here for audio recording of this blog. Summary The aerobic energy system is "broken" in ME/CFS and cannot be fixed with exercise (i.e., graded exercise therapy, also known as GET).The anaerobic (glycolytic) system appears to be somewhat functional in ME/CFS (but see McGregor's work) and, in theory, can be trained to be more efficient … Continue reading Energy systems and pacing in ME/CFS

Over the past week or so I have felt it increasingly necessary to comment on a video that has been circulating recently. At first, I hoped it would be confined to the far-right sites where it is being promoted. These past few days I have seen an uptick on social media and feel it is … Continue reading

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