MECFS and the Palliative Care Gap…The Lack of Coverage Around Non-medicalized Illness Based Disability
ME Patients Immediate Needs
MECFS is an extremely disabling disease. 3 in 4 patients are unable to work and 1 in 4 are completely housebound or bedbound. However, despite this, the needs of ME patients often go unmet. These needs include:
-Pain Relief
-Symptom Management
-Support Workers
-Adaptive Solutions & Accommodations
------
Existing Coverage
Most current countries have medical and social systems that provide the services ME patients need. However, these services tend to fall into serving 3 main categories of patients:
-Medical Treatment
-Disability Care
-Hospice Care
ME patients are often excluded from all 3 of these categories. Leading to a failure to receive services. The next slides will show how one at a time.
------
Medical Treatment
The classic patient example in this group would be someone with cancer. Their illness is both severe (causing significant symptoms, disability and/or mortality) and medicalized (has many medical treatments available).
In contrast, while ME is certainly a severe illness that causes significant symptoms and disability, there are no FDA-approved treatments for MECFS. Therefore, places that cancer patients turn to organize symptom management like hospitals often turn away patients with ME feeling there is nothing they can do to help them.
ME patients often also fail to receive hospital care for symptom management when extremely ill because hospitals generally do not provide these services unless they are admitting a patient for treatment.
------
Disability Care
There are many people with disabilities however who do not have medical needs. For example someone with spinal cord damage or born with an intellectual disability. For this category of people services like the NDIS in Australia or other dedicated disability programs exist.
Many of the services disability care provides are applicable to people with ME for example financial support, help with transportation, providing mobility aids and home care equipment, access to support workers and so forth.
However, disability care often does not cover healthcare needs for example pain management and symptom control. So just admission to NDIS would not be sufficient to provide for the needs of someone with ME.
-------
Disability Service Exclusion
In addition to not catering to healthcare needs, many countries require that applicants to these programs show a permanent level of disability that will not improve. Thus even ME's 5% recovery rate, presents an obstacle to receiving assistance. Additionally, around 80% of people with ME have a fluctuating condition with remissions making it difficult to prove a single level of disability.
Even if a single level of disability assistance was provided it would not be the appropriate response to fluctuating levels of need.
------
Hospice Care
Finally, there do exist services to provide home medical care and symptom management to patients who are not receiving medical treatment. In most countries, the majority of these services exist as hospice care.
Hospice care is used to dealing with patients who suffer severe and debilitating symptoms. They are also used to accommodating fluctuating disabilities and scaling their assistance as necessary (even if only in one direction). Their priorities of living the best life possible given an incurable illness align well with those of people with ME. Indeed as someone with severe ME the services provided by hospice look like heaven.
The only problem is hospice care is generally only available to those with 6 months or less to live. People with ME, even very severe ME can live for years or decades.
-------
Gap Part 1: Palliative Care
Palliative care supposedly exists to provide hospice-type services for those with any incurable disease regardless of prognosis. But in reality, it is often extremely difficult to access unless you have a terminal diagnosis and is generally very underfunded compared to hospice.
Due to underfunding, palliative care is often only available through private funding or to the sickest of patients. People with very severe ME can be some of the sickest people on the planet with a quality of life similar to patients with cancer or late-stage AIDS weeks before death.
Application to palliative care requires documentation of medical conditions. Because there is so little medical treatment for ME many patients do not have a lot of contact with the medical system as explained above. There is no failure of treatment leading to an ME patient being referred to palliative care because there is no treatment to fail.
-------
Gap Part 2: Responsive Disability Support
While the lack of palliative care is most disruptive to severe and very severe ME patients, the lack of responsive disability support is most disruptive to mild to moderate patients.
For those who are not permanently housebound or bedbound, they have extremely low odds of receiving any support because their best days are too healthy to qualify for anything.
Additionally, for those who are sick enough to qualify for some support they are often excluded from working or taking in any activities on their good days that might show them to be "too healthy" and have their benefits taken away.
Finally, when patients with ME who normally have some independence do crash into a bedbound state there are zero disability services available to assist them with basics like food and hygiene while they recover. A sick note from your GP might get you the day off work, but it will not provide a support worker to make sure you can eat.
-------
Short-term Solutions
As can be seen, these gaps leave ME patients with extremely essential needs and services uncovered. Here are a few immediate actions countries can take to improve:
GP Home Visits & Telehealth
-Doctors must be able to work with housebound and bedbound patients to avoid these patients being completely cut off from services.
-Telehealth visits should be available with all doctors
-GP home visits should be available for urgent non-emergency care and for physical checkups and documentation of patient status
Access and advertisement for palliative care for chronic illness patients.
-Increase funding for palliative care
-Make it easier for GPs to prescribe palliative care
-Make it clear in the documentation that palliative care is appropriate for any patient with severe symptoms where the underlying condition is untreatable
Extended medical prescription of disability services and accommodation.
-Provide some way for doctors to prescribe visits from support workers when needed. Similar to prescribing PT, OT, or medical leave.
-Make it easier for doctors to prescribe mobility aids to patients not on disability services.
----
The future
These issues extend to other chronic illnesses beyond MECFS.
Chronic illness patients have a unique form of disability and require a social service pathway that coordinates services between healthcare and disability professionals.
Many of the problems stem from MECFS being excluded from the medical system to the extent that there are no medical treatments. The category of patients with severe illness and no medical treatment of the underlying condition is a category we should seek to eliminate through research and clinical trials.
However, while we should seek to get ME patients included and accommodated in medical treatment, this is not a replacement for providing basic needs and there will always be patients we do not have treatments for but who require palliative care and disability services.
----
Myalgic Encephalomyelitis patients especially those with severe ME deserve palliative care. But our healthcare systems have a massive gap when it comes to providing treatment to patients with diseases like MECFS.
In short: we know how to help people with permanent disabilities, people with a severe illness like cancer that requires medical treatment and people with terminal illness who have exhausted medical treatment. While systems like the NDIS and hospice are not perfect, they exist. They function.
But people with ME are doubly excluded by current systems. We are excluded because of we have a fluctuating illness and chronic illness in a system designed for acute and life-threatening conditions and we are excluded by a system that expects palliative services to come bundled with medical treatment.
The problem is, for many pwME there is no medical treatment. Symptom management, palliative care, IS the medical treatment. We cannot get a referral when treatment fails because there is no treatment to fail.
Palliative care is just as important as hospice care. Whether someone is going to die in the next 6 months should not determine whether they have a right to pain relief and symptom management. Your suffering doesn't become more worthy when you hit an arbitrary prognosis.
People with very severe ME are some of the sickest people on the planet. Neglecting these patients is morally abhorrent.
I want to research for MECFS I was to cure MECFS but there will always be patients who have incurable and untreatable illnesses. We need a system that will treat these patients with respect and dignity.
The amount of medical treatment available for a disease does not determine the severity or validity of that disease. So let's stop enforcing a system that says it does.
