Category: ME/CFS

The ins and outs of IV access for saline to treat dysautonomia

~ Caroline Elizabeth ~ Leave a comment

In my last piece, I discussed practical approaches for building a case for IV saline to treat orthostatic and exertion intolerance, two primary features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID (especially those meeting the criteria for ME/CFS). IV saline helps treat various forms of dysautonomia, including postural orthostatic tachycardia syndrome, orthostatic hypotension, … Continue reading The ins and outs of IV access for saline to treat dysautonomia

IV saline for dysautonomia in ME/CFS and long COVID

~ Caroline Elizabeth ~ Leave a comment

There are no FDA-approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, a problem patients are acutely aware of. Despite this shortcoming, there is one treatment that has the potential to give people with these diseases a boost in physical and cognitive function: intravenous (IV) saline. I wish people with ME/CFS and long … Continue reading IV saline for dysautonomia in ME/CFS and long COVID

When positivity undermines connection

~ Caroline Elizabeth ~ 2 Comments

Positivity harms many with chronic illnesses because it can deny people their experience. A quick scroll through my friends' social media accounts reveals meme after meme decrying "toxic positivity" - a form of gaslighting involving dismissing and invalidating genuine emotions. Looking on the bright side and focusing on the positive may be helpful in some … Continue reading When positivity undermines connection

Three month post-SFT surgery update

~ Caroline Elizabeth ~ 1 Comment

Chronic illness dismantles our life force, but what does it look like to reassemble it? As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can't be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). … Continue reading Three month post-SFT surgery update

10 tips for long-haulers seeking disability benefits

~ Caroline Elizabeth ~ Leave a comment

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

~ Caroline Elizabeth ~ 2 Comments

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

~ Caroline Elizabeth ~ 2 Comments

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!

~ Caroline Elizabeth ~ 2 Comments

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!

Keto and ME/CFS (part II): the cholesterol hyper-responders

~ Caroline Elizabeth ~ 4 Comments

When I set out to write this piece, I thought it would be just that: one piece. I have been in the cholesterol rabbit hole for five months now and have concluded that this complex topic will require several posts to cover it adequately. There are many threads I attempt to weave together, including how … Continue reading Keto and ME/CFS (part II): the cholesterol hyper-responders

Keto and ME/CFS (Part I): An elevated heart rate

~ Caroline Elizabeth ~ 13 Comments

I am at a stage in my illness where I am scanning the horizon and asking the following question: how can I mitigate the risks involved with raging inflammation, poor sleep, and no exercise - three hallmarks of ME/CFS and huge risk factors for Alzheimer's disease, diabetes, cardiovascular disease, and cancer? The prospect of growing … Continue reading Keto and ME/CFS (Part I): An elevated heart rate