Thanks to Amber for her striking blog proposing ways to support the very severely ill when they are at their most vulnerable state. (Images added by Cort)
This is the 2nd in a series of blogs published on HR that is focusing on the very severely ill.
- What is Whitney Dafoe’s Extremely Severe ME/CFS Story Telling Us? – Health Rising
- We are Failing People with Very Severe ME/CFS
The point of no return
I have advocated for three people with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the past few years. 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. 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.
The primary goal is to prevent patients with severe illness from slipping through the cracks and passing the point of no return. Sadly, this seems to be the trajectory for many people with very severe ME/CFS.
A harrowing experience
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. 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. Rather than getting the care he needed, the hospital threatened him with involuntary commitment.
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 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 fought back against the recommendation of the pre-petition screener, who advocated for my friend to be released. 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.
This case captured the attention of several high-profile ME/CFS clinicians, researchers, and advocacy organizations from the United States and the United Kingdom. Friends rallied to raise funds and offer advocacy support. A team of us worked tirelessly on the legal and medical aspects of his case. We encountered many unnecessary roadblocks, costing us valuable time.
After three weeks in the hospital, my friend prevailed and returned home but arrived in a much more precarious state. He is now fighting for his life.
Common themes facing people with very severe ME/CFS
People with very severe ME/CFS can become isolated. 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. 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. Instead of getting appropriate care, these frail patients often are threatened with involuntary commitment.
Any meaningful advocacy on this topic will require the input of many people, including patients, physicians, family members, caregivers, and advocates. This document represents my perspective and is based on my experiences alone.
Gaps in existing resources on ME/CFS
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. There are many informal sources on ME/CFS, but we needed buy-in from busy, skeptical hospital physicians. The absence of such documents made it more challenging to advocate for my friend and undermined his case.
Put yourself in the shoes of a busy (and doubtful) emergency room doctor or hospitalist. They do not have time to digest the latest peer-reviewed research on ME/CFS and likely have negative biases about the disease. 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. These resources would have been beneficial for Theo’s case. Severe malnutrition is not uncommon in people with very severe ME/CFS.
In the absence of accurate information about very severe ME/CFS, many physicians conclude a malnourished patient must have an eating disorder and, therefore, a psychiatric condition. We need to change this narrative.
The US ME/CFS Clinician Coalition has excellent summary documents for physicians (their most recent documents on testing and treatment came out after Theo left the hospital). However, these statements are geared toward the moderate or moderate-severe portion of the spectrum and do not cover severe malnutrition and its possible causes.
The CDC has vastly improved its website in recent years. However, it still trivializes those severely affected with ME/CFS, offering lifestyle suggestions and recommending therapy. There is no mention of severe malnutrition and how it is commonly mistaken for an eating disorder. The CDC’s recommendations validate false stereotypes about the disease, especially when viewed through the lens of a doubtful doctor. We decided this information would do more harm than good to Theo and chose not to share it.
We need statements that capture the entire range of the disease spectrum. The current diagnostic criteria for ME/CFS do not address the most vexing problems that people with very severe illness face – malnutrition and sensory issues. The IOM criteria include the following: fatigue not alleviated by rest and the associated impairment in function, post-exertional malaise, unrefreshing sleep, cognitive impairment, or orthostatic intolerance.
There is nothing about malnutrition and its drivers on this list. While people with very severe ME/CFS experience all of these symptoms, life-threatening malnutrition and severe reactions to food and medications are often the top priorities.
I encourage the Clinician Coalition to consider the needs of those very severely affected by the disease, including a concise document for general practice doctors and hospital staff who have no experience working with this type of patient. Ideally, this document would discuss the unique medical conditions common to people with very severe ME/CFS.
We also need a document that provides a differential diagnosis blueprint for ME/CFS patients experiencing severe malnutrition. Some likely culprits driving weight loss, food intolerances, and GI dysfunction include gastroparesis, delayed motility in the small intestine, malabsorption, abdominal vascular compression syndromes, small intestinal bacterial overgrowth (SIBO), spinal abnormalities, mast cell disease, and more. These are somewhat rare, poorly understood conditions that require specialized diagnostic tests and treatments.
While Theo was in the hospital, the psychiatric team trotted out graded exercise and talk therapy treatments. These therapies have no support in the medical literature as viable treatments for ME/CFS, yet this mentality persists in hospitals and doctors’ offices. Speaking comes at a high cost, and exercise is out of the question in very severe ME/CFS. Refusing this type of treatment only worsens the situation and feeds the psychiatric narrative about the disease, placing patients in a tough spot.
The official materials on exercise intolerance are vague and confusing, despite impairments in energy metabolism being a core feature of ME/CFS. The proposed disease name – systemic exertion intolerance disease (SEID) – is a name that never took hold. Most doctors have no clue what post-exertional malaise is.
Malaise is an unfortunate term because it feeds the psychiatric narrative about the disease. The definition for malaise is “a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify.” Yet we do know enough about the cause of PEM – it is time to call it what it is – lowered functional capacity due to dysfunction in aerobic energy metabolism. Even cognitive tasks, such as thinking and speaking, use oxidative energy metabolism. We need to convey that exposure to light and sounds are like exercise for people with very severe ME/CFS, sometimes causing permanent crashes and further loss of function.
We could not find an official source (e.g., Clinician Coalition, CDC) that explicitly states that aerobic activities are contraindicated, especially on the severe end of the spectrum. Exercise and ME/CFS are nuanced topics, but most physicians lack time to digest the literature on why aerobic activities are risky. Thankfully, Workwell Foundation has a powerful letter for physicians that explains why people with ME/CFS have exercise intolerance and caution against aerobic exercise.
We need a packet of materials that people can easily access when a very severe ME/CFS patient is held against their will or is refused treatment by hospitals. This situation is a very traumatic and chaotic experience, and time is critical in a civil commitment case. Having the right resources promptly could make the difference between bringing a patient home vs. placing them in a psychiatric institution.
No general contractor
Those with very severe illness cannot travel for medical care, and very few have an ME/CFS specialist. Many people even struggle to find a helpful general practice doctor (GP). Given that GPs are the most likely physicians to interact with very severe ME/CFS patients, we need to invest more in building capacity in primary care.
Being a general contractor is not in the wheelhouse of a busy general practice doctor, yet people with very severe ME/CFS need one. When a medical issue gets elevated beyond the purview of a GP, they typically refer patients to specialists. While this may work for some conditions, those with a complex multisystem illness end up on a conveyor belt of fragmented medical care that yields little insight. Specialists seen in isolation run their standard tests, many of which routinely come up negative. These patients require an integrated care model in which there is cross-talk among specialties.
Over time, very severe patients have less access to primary medical care simply because they become too sick to manage their cases. Many GPs don’t want to take on a highly complex patient or know how to handle one. These patients end up falling through the cracks, have no meaningful medical care, and continue to waste away in isolation.
In the Dialogues of a Forgotten Illness series on severe and very severe ME/CFS, Nigel Speight, M.D., discusses the need for a particular type of GP that harkens back days long gone. People with severe ME/CFS need GPs who can make house calls and coordinate among the various specialists involved with a complex patient. We also need GPs who understand the emotional experience of severely ill patients and how isolation, neglect, abuse, poverty, gaslighting, and medical trauma take their toll on well-being.
Most GPs lack time to devote to understanding the intricacies of ME/CFS, but the Bateman Horne Center and the Clinician Coalition offer models for educating physicians. Dr. Bateman’s passion for building capacity in GPs has already built capacity in some regions. Similarly, some ME/CFS organizations have developed online continuing medical education courses. While these are excellent resources, we also need funding for a fellowship program pairing physicians and physician assistants with ME/CFS clinicians. Such a program would help address the shortage of ME/CFS-literate physicians throughout the United States (and beyond).
After the hospital debacle, Theo and I had the good fortune of finding a new GP who shadowed Dr. Bateman. Theo’s new doctor allows complex patients to schedule extended consultations, makes video appointments, and participates in peer-to-peer consultations with experts in the various co-morbidities associated with ME/CFS. We need more GPs like her.
Lack of savvy medical advocates
Very severe patients cannot manage their activities of daily living, doctors’ appointments, prescriptions, home health, nursing, and other services. They need a medical advocate who is somewhat knowledgeable about ME/CFS and can ensure patients meet their goals.
An advocate must convey subtleties of the patient’s experience and be conversant in medicine and pharmacology related to the disease (but need not have a medical background, just a keen interest). An advocate is also important for ensuring follow-through on prescriptions and referrals, coordinating caregivers, implementing treatment plans, and, in general, working through any problems that arise.
We need an ME buddy system. Medical advocates from agencies can be prohibitively expensive and likely have no experience with ME/CS, potentially introducing more harm. A formal buddy system pairing a family member, friend, or fellow person with ME/CFS who can commit would be ideal. People with severe ME/CFS have diverse needs, including legal, medical, fundraising needs, emotional support, logistics (transport, errands), and more. It would be unreasonable for one person to do all of these tasks, but help with any of them could be meaningful to a person with very severe ME/CFS. Medical advocates can do much of this work from afar. It is essential for people serving in this role to be clear on what the patient can expect.
A few years ago, I tried to advocate for another friend with very severe ME/CFS but felt helpless as I watched her slip away from afar. I spent many hours attempting to connect her reluctant GP with ME/CFS clinicians and other specialists for peer-to-peer consultations. These efforts rarely went anywhere or took far too long to be meaningful. I could not find an ME/CFS clinician who would take her on as a patient because she could not travel to see them (state laws require many doctors to see patients in person). It was deeply frustrating to feel so ineffective while knowing what could help my friend.
Ultimately, she approached the line in the sand for many severely ill patients, maintaining her agency. In the end, she took her life because she saw no way out and did not want to end up in an institution where she would have little control over her life. I vowed I would never let that happen again to a friend.
While Theo was in the hospital, I became his medical power of attorney (POA), but this took time to set up and was challenging to execute in a hospital during COVID. Being POA has allowed me to cut through layers of bureaucracy and speak to doctors and lawyers on Theo’s behalf.
The designated POA must be committed to representing the patient’s interests. Being POA is a significant responsibility, and whoever fills this role must be trustworthy and up for the task. Ideally, a family member could serve in this capacity, but many patients do not have supportive families. For a list of medical power of attorney forms by state, click here.
It is hard to summarize the legal issues facing patients because each state has different laws. However, we need a document that provides general guidance on the types of legal roadblocks that arise when hospitals deny patients treatment or hold them against their will.
Lack of family support, or worse
Over the years, as routine tests come back negative, doubts can begin to set in with families. Misinformed doctors and society amplify this message. As a family member becomes sicker, they become more of a burden. Even loving families can begin to convince themselves that it might be best to institutionalize their sick loved one.
People with very severe ME/CFS need sustained validation and support from their families and friends.
Poverty undermines the health and well-being of very severe patients. This situation applies to all people with ME/CFS who cannot work but is even more devastating for very severely ill patients, especially those on Supplemental Security Income (SSI). This program requires you to be poor and stay poor.
Most ME/CFS specialists have private practices that can cost hundreds, if not thousands of dollars per hour. Disabled patients cannot afford these rates and are at the mercy of their local GP.
People with very severe ME/CFS often need fundraisers to help cover the expenses of medications, supplements, private testing, and specialists. Many of these patients are on SSDI or SSI and receive benefits from other means-tested programs. GoFundMe accounts, Paypal donations, etc., are considered deductible income, putting benefits, and the limited life-line patients have at risk. Losing benefits and reapplying could be devastating for a very severely ill person who is barely hanging on.
Fundraising under an emergency, such as when hospitals hold patients against their will, further exacerbates this problem. State laws around this subject are complex. Even well-meaning friends and family could undermine people with very severe illness in the heat of a crisis. Friends and family need to think through the financial ramifications of additional income, especially for means-tested programs.
Consider consulting with an attorney on trusts or opening an Achieving a Better Life (ABLE) Act account, a program for those who became ill on or before age 26. This program allows people on SSI to have savings accounts for medical purposes. We opted for the latter in Theo’s case because he qualified for the ABLE program. Understanding what is permissible is essential before transferring GoFundMe or similar funds to a bank account.
We need to move beyond the chaos of the case-by-case approach when hospitals threaten very severe ME/CFS patients with involuntary commitment, graded exercise, and talk therapy. Currently, no organization specializes in helping patients and families through acute crises like my friend Theo experienced. Each time this occurs, we need to reinvent the wheel, costing patients precious time and health.
The following actions would be a step in the right direction:
- Include people with very severe ME/CFS as primary stakeholders. We need to find ways to have their ideas heard.
- Develop a concise and authoritative document for medical staff about the unique medical needs of people with very severe ME/CFS, emphasizing gastrointestinal manifestations and extreme sensitivities to food, medications, sound, light, and more. Ideally, this document would list possible causes of weight loss and malnutrition and offer potential treatment solutions. We need a document that unequivocally states why aerobic exercise and activity are contraindicated.
- Update CDC website to state that aerobic exercise and activity is contraindicated in ME/CFS, especially on the severe end of the spectrum.
- Develop a training program for general practice doctors. Ideally, the program would enlist at least one physician from each state in the US. This program could involve shadowing ME/CFS clinicians at their clinics. This approach would offer a quick way to build capacity in primary care.
- Develop a ME/CFS buddy system program. This program would take some thought to get right and involve training friends, family members, and people with ME/CFS to be a medical advocate for someone with very severe ME/CFS.
- Designate a trusted person to serve as power of attorney.
- Consider setting up a trust or ABLE account for those eligible to build financial resiliency.
Most of all, people with very severe ME/CFS need love, support, and validation from the people in their lives. Ignoring people or hoping the problem will go away will only push them deeper into their illness, sometimes beyond the point of no return.
Concise and authoritative resources on the diagnosis and treatment of ME/CFS that could be helpful when advocating for a person with very severe ME/CFS
This list below is not exhaustive but instead focuses on statements that offer concise and authoritative sources written by physicians for physicians. There are much longer reports and books available, but these are unlikely to be helpful in the heat of the moment when patients encounter doubtful hospital personnel.
Baxter, H, N Speight, W. Weir. 2021. Life-threatening malnutrition in very severe ME/CFS. Healthcare 9: 459. Not concise, but this is an excellent resource that describes how malnourished patients are wrongly diagnosed with psychiatric illnesses.
Report Guide for Clinicians (2015) No mention of malnutrition and vague on exercise intolerance.
Diagnosing and treating myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – US ME/CFS Clinician Coalition (2020) An excellent resource but does not address the very severe end of the disease spectrum.
Testing recommendations for suspected ME/CFS Version 1 – US ME/CFS Clinician Coalition (2021) Excellent but incomplete for a differential diagnosis for malnutrition.
ME/CFS Treatment Recommendations Version1 – US ME/CFS Clinician Coalition (2021) Excellent resource offers many treatment ideas that could help a person with very severe ME/CFS but falls short on treatments for gastrointestinal manifestations of the disease.
https://workwellfoundation.org/wp-content/uploads/2019/07/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf This is an excellent resource to provide to physicians struggling to understand exercise intolerance.
Komaroff, AL. 2019. Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome. JAMA. 322 (6): 499-500 (2-page paper behind paywall)