ME patients: narrative, victories and challenges for people with hidden disabilities in Egypt

Salonaz Sami, Sunday 22 Oct 2023

Ayman Youssif, the first in Egypt and the Middle East to obtain a PhD in Invisible Disabilities from New York University, discusses recent achievements and aspirations for those with his condition.



Invisible Disabilities, also known as Hidden Disabilities or non-visible disabilities, are disabilities that are not immediately obvious to the eye. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living. They can be physical, mental or neurological.

Amazingly enough, neurologist and mental health specialist, Ayman Youssif, who specializes in fibromyalgia, myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) and the invisible central nervous syndrome (ICNS), among other conditions, is also an ME and Fibromyalgia patient himself.

In August, the Arab Network for Advocating for People with Disabilities honoured Youssif among the 20 most influential people with disabilities in the Arab world. The Tunisian network held the ceremony in Egypt as part of the Arab Excellence Awards Festival organized by the Zayed Higher Organization for People with Determination (ZHO). Youssif was honoured along with seven other candidates from Egypt for their remarkable rules, each in their fields. 

Youssif is not only a patient and an expert in ME but has also contributed to determining and identifying genetic and pathological signs of this disease. He participated in formulating the latest rehabilitation program according to the research evidence available.

"I had to defeat the weakness of my tissues and muscles to serve my body lying in bed," Youssif explained. "I had to come up with mechanisms to combat the disease so that I would be able to save my body from slowly dying in bed."

The recent American fact-finding review described ME as a chronic and complex disease, or syndrome, that devours the lives of those it afflicts and causes chronic disability, frequently and significantly limiting basic patient activities.

"For many years, patients with ME around the world have suffered from rejection, marginalization, and abuse," Youssif explained. "They have lived burdened and confined to their homes due to the severe and mysterious nature of the disease and the ineffectiveness of the available treatments and rehabilitation programs," he added.

Dr. Salwa El-Assal, General Coordinator for the Arab Excellence Awards for People of Determination, explained during the honouring ceremony that "holding the ceremony in Egypt is a continuation of the Arab world inspiration journey."

In addition to Egypt, the network has also visited Tunisia, Algeria, and Jordan, among other Arab countries. They aimed to search for empowering and inspiring stories of people with disabilities.

Dr Riadh Al-Zmmali founded The Arab Network for Advocating People with Disabilities to shed some light on a much-marginalized issue. "The network is making a great effort throughout the Arab world and is carrying out some distinguished projects that need to be put under the spotlight," explained Youssif.

"ME has devastated the lives of millions of people worldwide. The pain, suffering, and solitude that this disease has brought to so many human beings are immeasurable," said Youssif. "For 35 years, ME patients have been ignored, humiliated, misdiagnosed, and mistreated. And it is time to do something about it," he added.

Over the past years, many protests have taken place worldwide to draw attention to the subject. These protests by patients and their caregivers and supporters demanded, among many things, increasing funding for research and clinical trials related to this fatal disability, explained Youssif.  

"They demanded that positive steps be taken towards the millions of patients forgotten on their beds without care or recognition," he added. According to Youssif, less than one-third of medical schools worldwide include ME in their curriculum.

The first related protest was organized in May 2016 under the title 'Millions Missing'. The protest was organized by the MEAction Network as part of a campaign for health equality for ME patients. Since then, the 'Millions Missing' protests have been repeated yearly in different cities worldwide.

"Our goal is to prevent more children, adolescents, young adults and adults from joining the ranks of the millions who have already gone missing. Missing from their careers, schools, social lives, and families because of the disease's debilitating symptoms," MEAction said in a report issued recently.

"We are simply asking for our simple right to be able to leave our beds and perform the simplest daily functions that we are deprived of," Youssif said.

Youssif's experience has been unique and challenging in confronting this horrible disease. He is simply living proof of the capabilities that ME patients have. Perhaps his honouring might prompt different institutions to pay more attention to the rights of those patients. "I hope my honouring would open the eyes and consciences of those who rejected, stigmatized, blamed, and abused patients with ME," said Youssif.  

There are over one billion people in the world who have a disability in some regard. Through disability awareness, the misconceptions and stereotypes surrounding those disabilities can be brought to the forefront. 

By giving equal opportunities and the corresponding respect, we grow confidence in persons with disabilities and cultivate a sense of belonging. This makes for positive growth attitudes, and despite any disability, a person will pursue and work on their goals, thus contributing positively to society.

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