How I decided on surgery for occult tethered cord syndrome

As some of you know, I decided to move forward with tethered cord surgery (SFT) this August with Dr. Paulo Bolognese. I will be blogging about my surgery journey in case it helps others walking this path. Of course, my story is only one of many, but I have certainly benefitted from hearing about a … Continue reading How I decided on surgery for occult tethered cord syndrome

We are failing people with very severe ME/CFS

Cort Johnson kindly published a piece I wrote - more of a manifesto - on my reflections on advocating for people with very severe ME/CFS. This piece struck a chord for many. There are many areas needing attention - I hope to work with others on some of the suggestions I outline in my article … Continue reading We are failing people with very severe ME/CFS

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