Multiple sclerosis: Hope for treatment but lack of care

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Knowledge of multiple sclerosis has advanced in recent years, raising hopes for improved treatments. But people affected by this neurodegenerative disease regret a lack of human and financial resources to cope with their disability.

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

Multiple sclerosis, which increasingly damages the central nervous system (brain and spinal cord), is the second leading cause of disability among young adults in France.

Epstein-Barr virus is present in 95% of adults. It can be the cause of other diseases such as mononucleosis or rheumatoid arthritis. Most of those infected have no complications, but the team of American researchers proved that this virus is necessary for the development of multiple sclerosis.

“This is the first time that such a serious study, based on ten million patients followed for ten years, confirms what we already suspected about the link between the virus and the disease,” explains neurologist Jean Pelletier by the Foundation for Research Assistance in Multiple Sclerosis (Arsep), interviewed on Monday to mark the world day of this neurodegenerative disease.

A vaccine against multiple sclerosis?

“If this study gives cause for hope, it is because we can think that one day we will be able to vaccinate children against the Epstein-Barr virus and thus eliminate one of the multifactorial triggers of multiple sclerosis,” explains the specialist. The production of antiviral drugs is in the reflection phase and a laboratory started a first phase of clinical studies after the publication of this American study at the beginning of 2022, the Pright Jean Pelletier, who hopes research will progress “as fast as with the anti-Covid vaccine”.

“This famous Epstein-Barr virus, once infected, is hidden in our bodies in B lymphocytes, which are themselves involved in the inflammatory response associated with multiple sclerosis. In particular, this could explain why certain treatments are extremely effective against B lymphocytes, monoclonal antibodies in multiple sclerosis,” adds the neurologist. He welcomes the fact that, over the last ten years, more and more effective treatments have been made available that make it possible to prevent certain outbreaks of this disease, which mostly causes inflammatory crises with intermittent periods of dormancy.

A diagnosis too late

The widespread use of magnetic resonance imaging (MRI) has made it possible to detect the disease earlier than before, which affects the effectiveness of treatment. However, the President of the French Association for Multiple Sclerosis (Afsep), Jocelyne Nouvet-Gire, still laments a certain “wandering” of the diagnosis, which sometimes takes four to five years to fall after the appearance of the first symptoms (disorders sensitivity and balance disorders, eye diseases).

A poor knowledge of the disease is to blame, according to Jocelyne Nouvet-Gire, who has multiple sclerosis herself. “I see that many women do not necessarily go to the doctor for a diagnosis. They bear the pain more easily, take care of the children first and put their doctor’s appointments in the background,” says Jocelyne Nouvet-Gire, referring to the perceived waiting time – sometimes six months – for a consultation with a neurologist.

Lack of places in specialized institutions

The discovery of a vaccine against multiple sclerosis will not change anything for patients who currently suffer from it, believes Jocelyne Nouvet-Gire, whose association focuses primarily on care after diagnosis by providing social, legal and psychological support offers. Behind the heralding effect of this scientific discovery, she warns of another reality. “The financial and human resources are sorely lacking,” she regrets, especially in global handicap management.

“There are not enough specialized structures in France to accommodate people with multiple sclerosis, five establishments, each with sixty beds for a waiting list that we estimate at 2,000 people,” she specifies. “Result: For some patients at home, the situation becomes chaotic.”

Another reason for concern for Afsep: From the age of 60, patients cared for in specialized facilities are sent to nursing homes, “very often unsuitable” and whose major dysfunctions were revealed by the shock wave of the book research “Les Fossoyeurs”. on the private group Orpea.

With AFP

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