![cfs me cfs me](http://me-pedia.org/images/3/3f/Florence_Nightingale.png)
These resources would have been beneficial for Theo’s case. After the hospital finally released Theo, two papers came out – an article from the UK on life-threatening malnutrition and a published account by a person with very severe ME/CFS. They do not have time to digest the latest peer-reviewed research on ME/CFS and likely have negative biases about the disease. Put yourself in the shoes of a busy (and doubtful) emergency room doctor or hospitalist. The absence of such documents made it more challenging to advocate for my friend and undermined his case.Īmber proposes ways to bridge the divide between the medical establishment and the ME/CFS world. There are many informal sources on ME/CFS, but we needed buy-in from busy, skeptical hospital physicians. The first roadblock Theo and I faced was the absence of concise statements from authoritative sources that address the very severe end of the disease spectrum. This document represents my perspective and is based on my experiences alone. Instead of getting appropriate care, these frail patients often are threatened with involuntary commitment.Īny meaningful advocacy on this topic will require the input of many people, including patients, physicians, family members, caregivers, and advocates. In the absence of assistance, very severely ill people continue to decline until they reach a state of medical crisis and land in the ER. As families, friends, and doctors slip away due to indifference, doubt, and overwhelm, patients have to manage their care precisely when they need help the most. People with very severe ME/CFS can become isolated. Common themes facing people with very severe ME/CFS We encountered many unnecessary roadblocks, costing us valuable time.Īfter three weeks in the hospital, my friend prevailed and returned home but arrived in a much more precarious state. A team of us worked tirelessly on the legal and medical aspects of his case. Friends rallied to raise funds and offer advocacy support. This case captured the attention of several high-profile ME/CFS clinicians, researchers, and advocacy organizations from the United States and the United Kingdom. They reasoned that Theo was a suicide risk, even though he sought medical care for his rapidly declining health, hardly the behavior of someone wishing to end their life. The hospital fought back against the recommendation of the pre-petition screener, who advocated for my friend to be released. Rather than digging deeper, the hospital doctors concluded Theo was suffering from mental illness and submitted a petition for civil commitment (called sectioning in the UK). The hospital did some routine blood work, endoscopy, and colonoscopy, all of which came back primarily negative, though there were signs of slow motility in the small intestine. Rather than getting the care he needed, the hospital threatened him with involuntary commitment. His family had taken him to the hospital for ongoing rapid weight loss and malnourishment, likely from unmanaged mast cell disease, a common co-morbidity in ME/CFS. On January 22nd, 2021, I woke to a desperate message from a dear friend with very severe ME/CFS, who I will call Theo, informing me that he was in a 72-hour psych hold. Sadly, this seems to be the trajectory for many people with very severe ME/CFS. The primary goal is to prevent patients with severe illness from slipping through the cracks and passing the point of no return. In this piece, I highlight some of the common shortcomings I have experienced in my advocacy efforts and offer ideas on how we can better support people with very severe ME/CFS.
![cfs me cfs me](https://live.staticflickr.com/5099/5495289274_11af5e1c97_b.jpg)
Each time I experience the same sense of frustration, dread, and panic over my inability to connect the dots required to pull someone back from the brink.
![cfs me cfs me](https://1.bp.blogspot.com/-7nXIvi6v3To/X1qCHG5-3rI/AAAAAAAAUqo/xSWm2jvviJYkUdprp3JWsMhtTymH6BoWACLcBGAsYHQ/w1200-h630-p-k-no-nu/155632mbm5yz50z01y5z1w.png)
I have advocated for three people with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the past few years. The goal: preventing the very severely ill from slipping through the cracks and reaching a point of no return.