Earlier this month, the myalgic encephalomyelitis (ME) community recognized Severe ME Day of Understanding and Awareness. Every day should be Severe ME Day - and at MEadvocacyOrg, that is exactly what we strive to do. August 8th - as a dedicated day to raise awareness of the plight of the severely affected ME patients - was conceived in 2013 by Diane, the mother of a severely affected ME patient, and was subsequently taken on by The 25% M.E. Group.

In 2013, when writing a blog for Severe ME day, advocate Gabby Klein interviewed Diane asking her to explain why she thought this special day was important and to describe what it is like being the carer of a severely affected daughter. Carers are truly the unsung heroes of this tragedy. 

From Diane’s own words: 

“The question that's been dancing in my mind for a long time is, how can the general public be made aware of the seriousness of Myalgic Encephalomyelitis? How can their minds be re-programmed to the truth because up until now Myalgic Encephalomyelitis has been globally misunderstood and gravely trivialized.

Myalgic Encephalomyelitis is not a new disease, yet if you were to type 'M.E. symptoms' into a search engine, the chances are words like fatigue, malaise, brainfog, sore throat, insomnia, and depression would jump off the page.

But where are the words that truly describe severe Myalgic Encephalomyelitis – the seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, dyscalculia, dysphasia? A hundred symptoms could be listed here with not one mention of fatigue or any of its common misconceptions.

And where are the explanations that a group of seriously ill adults and children, are so severely ill that everyday activities and sensory stimuli, like being washed or the noise of a passing airplane, can be life-threatening?

My daughter has very severe Myalgic Encephalomyelitis and she is the reason why 8th August Severe Myalgic Encephalomyelitis Understanding & Remembrance Day has come into being. Well, her and over 25% of the M.E. population. When you take that percentage into consideration, it means there's hundreds of thousands of people around the world with severe/very severe Myalgic Encephalomyelitis. We're not talking about a rare disease here, so why is M.E. cloaked in so much ignorance?”

Diane asks an important question. Why is ME cloaked in so much ignorance?

THE CURRENT SITUATION

In effect, all people with ME (pwME)  suffer from a severely debilitating disease which is greatly amplified for those who are bedbound/tubefed. MEadvocacyOrg’s mission is to fight for proper diagnosis, research and education which will bring proper recognition and proper treatments for this neglected and marginalized debilitating chronic disease. 

The best way to ensure ME patients receive proper care is by properly defining the disease. MEadvocacyOrg has been advocating for and urging the Department of Health and Human Services (HHS) to adopt and use ME experts’ 2011 International Consensus Criteria (ICC), the International Consensus Primer for Medical practitioners (IC Primer), as well as pressing for ending the use of the newly government supported overly broad criteria, Systemic Exertion Intolerance Disease (SEID) which has taken over the ME/CFS label. 

PROBLEMS WITH USING OVERLY BROAD CRITERIA

• Leads to misdiagnosing many who are suffering from other conditions or idiopathic fatigue
• Lacks adequate information to support patients with the distinct disease ME - especially those most severely affected 
• Leads to treatments that may work for people suffering from fatiguing conditions but are harmful to pwME
• Does not ensure patient selection for research will exclude those who suffer from other fatigue-inducing illnesses (as shown by Leonard Jason and Frank Twisk published works)

For detailed information about the harms of overly broad criteria and the reality of Severe ME, including the importance of recognizing paralysis as a symptom ignored in current information, we recommend this article from Stonebird “Severe/Very Severe ME : The need for proper symptom identification.”

“ADVOCACY” ORGANIZATIONS HAVE FAILED THE SEVERE ME PATIENTS

Too many “ME” organizations have been purposefully opaque as to which criteria they promote. In their zest to grow membership and in their desire for a “seat at the table” at government working groups, these organizations have let all pwME down. 

Use of broad criteria has resulted in harm to pwME due to a narrative that bases patient care on changes in behavior. No change in behavior will free an ME patient from the prison this disease creates, especially those severely affected.

Looking into the various medical education options, it is hard to know if any of the current offerings can reeducate a doctor who has held the belief that ME is a “false illness belief” disease. 

A good example of inadequate information being given is the handout in the current continuing medical education program for SEID from the organization MEAction. It is falsely labeled as ‘myalgic encephalomyelitis” yet, in reality, it is using the SEID definition with the ME label. The description used in this current education material is as follows:

“ME patients must show the following symptoms:

• A reduction/impairment in ability to engage in pre-illness activity that persists for 6 months or more  
• Fatigue that is profound, not lifelong, not the result of ongoing exertion, and not alleviated by rest  
• Post-exertional malaise (PEM) in which physical or mental activities result in a delayed exacerbation of symptoms and reduction in functioning  
• Unrefreshing sleep 
• Cognitive impairment and/or orthostatic intolerance 
• These core features of illness must be moderate to severe and present at least 50% of the time.”

The word “severe” is mentioned only one more time on this handout:

“People with ME range from functional with accommodations to bedbound and tube-fed with extreme sensitivities to light and noise. It’s important to understand the spectrum because severe patients may improve over time, and mildly-affected patients can get worse.”

While this describes a few of the severe symptoms, the narrative does not inform doctors about the severity of the long term experience. It definitely does not fulfill the request Diane made in the creation of Severe ME day asking for inclusion of seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, dyscalculia, or dysphasia. 

The repeated narrative about “improving over time” leaves many doctors with the impression that the treatment for ME is to wait.

Not covered in education is that a Severe ME patient can literally starve to death without compassionate caregivers. The suggestion that appropriate treatment includes merely waiting for them to “improve over time” is unrealistic and harmful and does not provide direction for prescribing life sustaining palliative and home care.

TREATMENT INFORMATION LEAVES  ME PATIENTS, ESPECIALLY THE MOST SEVERELY AFFECTED, OUT OF THE CONVERSATION

From the current medical education information:

• Use a wearable device to measure heart rate/activity
• Maintain a symptom, activity and medication diary
• Monitor cognitive and physical activity on a usual day and reduce that activity by 25%
• Break strenuous activity into smaller tasks, with rest

Other management suggestions include drinking more fluids; pain and sleep medications; using ear plugs, eye masks and sunglasses; checking  for vitamin deficiencies; providing handicap placards; and helping with disability paperwork.

Most of this information is based on the patient changing their behavior or monitoring their activity level.

These suggestions may at times be helpful for managing those mildly affected but are far outside the realm of what is possible for most with ME - especially Severe ME. Medical information MUST use proper criteria and portray an accurate picture about the severity of the neurological, immunological and cardiac impairments in this patient group.

From the education materials:  “Activity induces a pattern of gene expression, inflammation, and metabolic dysfunction that cannot be explained by deconditioning and may be unique to people with ME.

While this is an accurate statement, it leaves the impression that all patients are in a position to avoid “exercise” or “overexertion”.  Severe ME patients are completely outside the realm of “exercise” and ALL basic-care activities of “exertion” fall into the category of overexertion. The current information skews the narrative about the reality of managing Severe ME.

To better understand how woefully inadequate the ME/CFS-SEID materials are, see the comparison chart showing the difference between the ICC and the IOM description.

MEadvocacyOrg rejects the current medical education labeled ME/CFS (based on SEID) and advocates for adoption of the IC Primer which has information better suited to fulfill the needs of all pwME.

Organizations that raise awareness about Severe ME for one day of the year are pitifully inadequate. As a unified community in support of all pwME including those who are severely affected, we all need to advocate for and press the government health agencies to take the ethical move to properly define, research and educate medical professionals using the best current criteria, the ICC - and stop using the faulty SEID. 

We all need to ask for funding in the billions to make up for decades of neglect. PwME deserve proper research into this debilitating disease that leaves patients in a living hell day after day.

BENEFITS OF ADVOCATING FOR SEVERE ME USING ICC AND IC PRIMER

The IC Primer not only educates about what ME is, it also has information to help rule out other conditions and diseases which may be responsible for symptoms. Misdiagnosis and missed diagnosis is much too common in our community. With proper education doctors would be less likely to miss infectious diseases, poisoning, neurological or autoimmune disorders, cerebrospinal fluid leaks, chiari malformation, craniocervical instability (CCI), cancer, endocrine disorders, etc. 

IC Primer information for Severe ME:  

• Very severe: mostly bedbound and require assistance with daily functions
• Those who are very severely affected are too ill to attend regular medical appointments
• Those who are severely ill or in the acute phase may sleep much of the time but sleep is non-restorative
• Children can be very severely afflicted

In addition to better understanding the severity of ME, doctors would be guided to test for immune system abnormalities and reactivated viruses, testing for neurological issues including using a SPECT scan with contrast, testing for cardiac abnormalities like left ventricular dysfunction and many other tests that can lead to proper diagnosis and possible treatments to improve quality of life.

Once the reality about the severity of ME is fully understood, all patients will begin to get the respect and care that is currently reserved for other more widely recognized illnesses.

Focus on the most severely affected is a win/win for the whole community.

For more about Severe ME day, see MEadvocacyOrg’s blog from 2018.

WHAT YOU CAN DO

• Sign #pwME4ICC petition to HHS for adopting ME as defined by the ICC
• Call or write your congressional representatives to press HHS on your behalf to adopt ICC and stop using and educating with materials based on SEID (see instructions here)
• Use and share this guide to see if you meet the IC criteria for ME. https://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria