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
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
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!
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All posts on COVID-19 become outdated rapidly.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
I am a huge fan of mushrooms and eat them daily for their B5 (pantothenic acid) content. B5 is especially important for people with ME/CFS because it is one of two important precursors for acetylcholine (ACh), the primary neurotransmitter of the parasympathetic nervous system (PSNS). The other important nutrient for ACh is choline, which is … Continue reading Keto-friendly stuffed mushrooms
As with many people, I reached coronavirus saturation about a week ago. That said, I don't want to miss out on key research findings so I continue to scour Twitter for commentary from experts and for newly-published peer-reviewed papers on SARS-CoV-2 (the virus) and COVID-19 (the disease). But in the past few weeks, I have … Continue reading Be a voice of support during COVID-19
This is nutrient-dense version of larb, a traditional Thai dish. It is a very versatile recipe that can handle many substitutions and additions. I am a "little bit of this, little bit of that" kind of cook and encourage people to use artistic license with this recipe. The key to this recipe is the fresh … Continue reading Low-carb Larb
As I approach my first anniversary on a ketogenic diet, I reflect on some of the many lessons I have learned along the way. I hope that my experience will help others with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Why the ketogenic diet for ME/CFS? There are many reasons keto could help people with ME/CFS - … Continue reading 10 tips for getting started on a ketogenic diet with ME/CFS
Frozen in Amber 