ME Awareness 101 Changing the Narrative of #MillionsMissing
This May 12th patients like ME all over the world are participating in ME Actions #MillionsMissing campaign to #ChangeTheNarrative about MECFS. Here's the story you need to know.
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ME is a Severely Disabling Post Viral Neuroimmunological Disease.
25% of people with ME are housebound or bedbound and
70% are too sick to work. (25% ME Group 2021, Open Medicine Foundation 2021)
There are more than 60 confirmed symptoms of ME. Some of the most common are
Extreme fatigue
Sleep disruption
Brain fog
Post-exertional malaise
Muscle and joint pain
Headaches
Irregular heartbeat
Digestive issues
Shortness of breath
Tender and swollen lymph nodes
Reduced immunity
Increase chemical sensitivity
Light and noise sensitivity
(Mayo Clinic 2020)
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There Are No FDA Approved Treatments for ME. Only 5% Recover. (Health Rising, 2021)
In a 2019 study by the Standford MECFS initiative, it was found that the majority of patients with ME have a relapsing-remitting course. 14% reported steadily declining and only 4% reported an improving course.
There are no FDA-approved treatments for ME. However, it is essential that physicians not be afraid to prescribe symptom management and treat comorbidities provided that treatment does not cause post-exertional malaise. Medications for pain, nausea, and POTS / OI can all help improve quality of life despite being non-curative.
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Severe ME is Living Death.
Patients with severe ME are some of the sickest people on the planet. Even average ME patients' functioning scores are worse than those with depression, stroke, MS, heart attack, or HIV. Only comparable to those with widespread chronic pain and cancer patients in palliative care (Standford MECFS Initiative, 2019).
Severe ME patients describe the experience as "living death." These patients are bedbound, for decades at a time, so light and noise sensitive that even the light leakage of a curtain or the noise of someone whispering can be painful. They often cannot stand even the presence of others and may require tube feeding and IV hydration to stay alive.
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Homecare Equity for Bedbound & Housebound Patients
Patients who are housebound or bedbound often struggle to access any sort of medical care. Visits from home doctors are rare and often only available to the wealthy if at all. There have been no substantial studies on bedbound and housebound patients leading to further neglect of this severely ill patient population.
Severe patients may be too light and noise-sensitive for hospital environments. Leading them to go years without any medical care, or to continually deteriorate due to the strain of hospital visits. Patients also go without vital symptom management and palliative care.
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Stop GET & CBT in Guidelines and in Practice.
The most recent guidelines from Mayo Clinic (2020) and NICE (2021) both advise that previous treatments such as GET and curative CBT should not be prescribed. A survey by ME Action found GET to be harmful in 80% of patients with many patients reporting permanent decline or loss of mobility, including becoming bedbound.
While it is excellent that GET and CBT are no longer recommended in some guidelines many countries like Australia have not updated their guidelines yet and in countries that have like the UK clinics are simply rebranding their therapies in an attempt to keep their business even as it has been proven harmful. It is essential that we resist these practices and continue to educate and fight against those who intentionally or unintentionally do harm to patients.
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#StopRestPace Prevent MECFS in Covid Patients Before It Is Too Late.
The most common warning of MECFS patients is to pace before it is too late. Post Exertional Malaise is the hallmark symptom of MECFS and is now manifesting in long covid.
When patients exert and trigger PEM repeatedly they will decline. With no treatments and research in its infancy, it is essential that long covid patients preserve the health they have. #LearnFromME and stop everything, rest until stable, and learn to pace so you do not trigger a further decline.
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Research for ME now!
Despite having an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)
Research into MECFS is still in its infancy. Furthering understanding into the cause and mechanisms of the disease as well as separating patients into more specific subgroups to better target treatment are all important first steps. Genetic studies and biomarkers may be helpful in making diagnosis more accessible and increasing physician acceptance.
However, it is also essential that we fund immediate studies into drugs like LDN, LDA, Saline, IVIG, BC007, and other treatments that have shown symptom improvement in case studies. ME patients must also not be left behind in the race to cure long covid.
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The narrative:
MECFS is a severe post-viral neuroimmune disease with no FDA-approved treatments and no cure. Only 5% of pwME recover.
Severe ME is often described as living death and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.
Outdated practices such as GET and CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with covid need to be advised to #StopRestPace to minimize the spread of this horrible disease.
Research is extremely underfunded and necessary to improve long-term outcomes for a patient with ME.
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It's Myalgic Encephalomyelitis awareness month with the big day for ME Awareness this May 12th. I know it can be hard sometimes to summarize all of our struggles into a single millions missing post so I wanted to provide the best summary I could of the challenges facing MECFS patients right now.
The theme for this years millions missing campaign is to change the narrative of MECFS. So here is the narrative I think is essential:
MECFS is a severe post-viral neuroimmune disease with no FDA-approved treatments and no cure. Only 5% of persons with ME recover.
Severe ME is often described as living death and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.
Outdated practices such as GET and CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with covid need to be advised to Stop Rest Pace to minimize the spread of this horrible disease.
Research is extremely underfunded and necessary to improve long-term outcomes for a patient with ME.
Feel free to use any or all of these slides and any phrasing or text within as you craft your own awareness posts as well as any other content from this account! (Please credit when possible) I will also be putting together a collection of my best posts for educating your friends and family in a story highlights shortly.
Remember that every bit counts and it's important to protect your energy as we fight for change. Do what you can and amplify the voices of our fellow ME warriors.
