Hope for treatment but lack of care

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Knowledge of multiple sclerosis has advanced in recent years, raising hopes for improved treatment. But people with this neurodegenerative disease are sorry for the lack of human and financial resources in managing their disability.

New advances for multiple sclerosis patients may stem from a particularly important discovery made by American researchers in January. A team from Harvard University has shown a link between Epstein-Barr virus and this autoimmune disease that affects more than 2.8 million people worldwide, including about 110,000 in France, according to health insurance data.

Multiple sclerosis, which progressively damages the central nervous system (brain and spinal cord), represents the second leading cause of disability in young French people.

Epstein-Barr virus is present in 95% of adults. It can cause other diseases such as mononucleosis or rheumatoid arthritis. Most infected people have no complications, but a team of American researchers has shown that the virus is essential for the development of multiple sclerosis.

Gene Pelletier, a neurologist at the Foundation for Aid to Research, explains, “This is the first time that such a serious study, based on ten million patients, has been followed for ten years, confirming what we already suspect about the link between the virus and the disease.” Multiple Sclerosis (RSEP), this neurodegenerative disease was questioned on Monday on the occasion of World Day.

A vaccine against multiple sclerosis?

“If this study gives rise to hope, it is because we think that one day we will be able to vaccinate children against the Epstein-Barr virus and thus eliminate a trigger for multiple sclerosis.” Explains. Production of specialist antiviral drugs is in the reflection stage, and a laboratory has already begun the first phase of clinical trials in early 2022. After the publication of this American study, PK was delighted.r Jean Pelletier, who hopes the study will be “as fast as the anti-covid vaccine”.

“These famous Epstein-Barr viruses, once infected, hide in our body with B lymphocytes, they are involved in the inflammatory response associated with multiple sclerosis. Sclerosis, ”the neurologist added. He welcomed ten years of increasingly effective treatment, which has made it possible to avoid some outbreaks of the disease, which often lead to inflammatory crises with pacific stages.

A diagnosis is still too late

Extensive use of magnetic resonance imaging (MRI) has made it possible to diagnose the disease more than ever before, which affects the effectiveness of treatment. However, Jocelyn Nuvet-Gire, president of the French Association of Multiple Sclerosis (AFSEP), still condemns a specific “wandering” of the diagnosis, which sometimes takes four to five years to fall after the first symptoms appear (sensitivity disorder and imbalance). , Eye disorder).

According to Jocelyn Nuvet-Gear, a poor cognitive impairment of the disease, she herself suffers from multiple sclerosis. “I find that many women do not necessarily go to the doctor for a diagnosis. They tolerate pain more easily, prioritize caring for children and keep their medical appointments in the background,” said Jocelyn Nuvet-Gire. It also indicates the waiting time for consultation with a neurologist, which is considered to be very long – sometimes up to six months.

Lack of space in specialized institutions

Discovering a vaccine against multiple sclerosis will not change anything for patients who are currently suffering from it, believes Jocelyn Nuvet-Gire, whose association focuses primarily on care after diagnosis by providing social, legal and psychological support. Behind the announcement of this scientific discovery, it warns of another reality. He lamented the “severe shortage of financial and human resources”, especially in the global management of the disabled.

“France does not have adequate specialized accommodation for people with multiple sclerosis, with five establishments each having 60 beds for a waiting list of approximately 2,000 of us,” he said. “Consequences: For some patients at home, the situation becomes chaotic.”

Another cause for concern for Afsep: From the age of 60, patients attending specialized institutions are referred to nursing homes, “very often inappropriate” and whose main inactivity is revealed by the shock wave of the book-investigation “Les Fossiers”. Private group on Orpea.

With AFP

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