SEVERE ME DAY - August 8, 2020: Desperate Plight Continues in Darkened Rooms

Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million men, women, and children in the United States alone and as many as 17 million worldwide. ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.

August 8th has been set aside as Understanding and Remembrance Day for Severe ME. It is the birthday of the late severe ME patient, Sofia Mirza who died at the young age of 32 as a result of medical abuse and ignorance. Since her tragic death in 2005, too many ME patients have succumbed to the disease due to the ongoing medical negligence.

Severe ME patients, estimated to affect 25% of those with ME, are suffering from a harsh, disabling form of myalgic encephalomyelitis. These patients are isolated due to the severity of their symptoms and are often unable to leave their homes even to seek medical care.

The plight of these severe patients has been misunderstood, trivialized, and even disbelieved. They suffer in silence, unseen by the world, in darkened rooms because their hyper-sensitivities to light, sound, and touch make it impossible for them to lead any semblance of a normal life.  

Severe ME patients are seldom seen by a doctor because they cannot travel to a doctor’s office. Consequently, they lack proper medical treatments and appropriate care which are crucial for the well-being of these patients.

Moreover, because of their physical limitations, these severe ME patients have not been able to take part in studies and their integral, unique symptoms have been omitted or ignored in the studies’ designs and results. The medical literature for this disease, therefore, is completely biased and distorted.

Some of these unique symptoms include seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, gastroparesis, dyscalculia, and dysphasia. By neglecting these severest patients, the medical community - and especially world government health agencies - have done a great disservice to ME patients. They have failed to set up policies and procedures for getting a proper diagnosis via home medical care as well as ensuring there is ongoing palliative care for these severest of patients.

This lack of concern for the severest and most vulnerable ME patients has arguably compromised the ability of the expert medical establishment to develop proper disease criteria. It is hard to imagine any other illness having their severest patients omitted from research studies, criteria development, and even choosing a name for the disease! 

It is the duty of government health agencies to ensure the health and well-being of all in a nondiscriminatory way. The severest 25% of ME patients have been ignored long enough. We call on the US Department of Health and Human Services (HHS), including all its agencies as well as doctors and researchers to start concentrating their medical and scientific attention to those in this group who are most in need of medical attention and care. HHS can do that by adopting and using the International Consensus Criteria (ICC). Severe ME patients are also the group with the strongest disease imprint which should bring the most accurate results in scientific studies.

THINGS YOU CAN DO:

  • Sign the petition to HHS to recognize ME as defined by the International Consensus Criteria (ICC) 
  • Share the ICC questionnaire to help educate about diagnosing ME and share the IC Primer to help educate about the management and treatment of ME. Both located on our Resources tab.

LEARN MORE about Severe ME on MEadvocacyOrg’s about page and find links to various resources specific to the severe disease on the Severe ME page at www.ME-International.org.