After deciding to have surgery, I felt a sense of relief because I finally could put down all of my what-ifs and relax into the decision. Everything seemed to be falling into place. I looked forward to turning over a new leaf of feeling less intense about life and my illness. Such lofty feelings gave … Continue reading Surgical clearance
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
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
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
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
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
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
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
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
Frozen in Amber 