“I wish there was a treatment”: the distress of long covid patients, still without a cure


While there is currently no drug against long covid, a Swiss team has just launched a study to determine the effectiveness of a monoclonal antibody.

Héléna is a 28 year old young woman whom I had met during a previous article on the long covid. Since being infected in November 2020, her life has changed radically: “ I am constantly tired, a fatigue that persists even when I rest. I also have memory problems — I often miss words — and concentration problems. “, she says.

So I had to adapt my daily life. I now work part-time and I’ve given up on my social life, because I don’t really have the energy to go out with my friends or continue the pole dancing lessons that I loved so much.. She explains that she feels like she’s wearing a ” burden “and that she would simply like to find a life” like before “: ” I wish there was a cure. The adjustments that I make in my daily life and the rehabilitation in physiotherapy help but they do not allow me to regain my former energy. »

Long covid causes isolation, due to persistent symptoms. // Source: Pexels

Persistent fatigue, memory and concentration problems, sleep disorders… these are all symptoms of the long covid that affect thousands of people in France without them being able to do anything other than take their troubles patiently and cut corners on different aspects of their personal and professional life.

No long covid treatment today

It was at the Geneva University Hospitals (HUG) and more specifically at the primary care medicine service that one of the first Covid Long (or post-covid) consultations was created in the summer of 2020 as well as the first French-speaking interactive platform. on post-COVID symptoms called Rafael. Dr. Mayssam Nehme works there as head of clinic and the experience accumulated over the past few years, as well as the research work she has carried out, make her one of the French-speaking experts in long covid.

“Unfortunately there is no drug treatment for long covid. »

She explains the therapeutic situation for patients with long covid: “ Unfortunately there is no drug treatment for long covid. All we can offer our patients today are non-drug treatments: occupational therapy to manage daily life, neuropsychiatry, rehabilitation to avoid deconditioning… but all of this has its limits. »

When we talk with her about the antihistamines sometimes prescribed to patients in France, she specifies: “ There is not a sufficient level of evidence to be able to recommend them. In fact, we only prescribe them when there is an indication, for example when allergic rhinitis accompanies long covid. “Same thing for vitamin supplements sometimes also prescribed:” They are useful when a deficiency has been detected during a blood test, but otherwise it does not make sense to recommend them. »

So, even if the condition of patients tends to improve over time, many find themselves in a therapeutic impasse, stuck in a precarious state of health.

The hope of temelimab against covid long

It is in this context that a phase 2 clinical trial is currently starting, in which the primary care medicine department of the HUG is one of the main investigators. This aims to assess the effectiveness of a monoclonal antibody, temelimab, on the neurological symptoms of long covid (fatigue, memory and concentration disorders). Prof. Idriss Guessous, head physician at HUG explains: “ The pathogenic protein W-ENV produced in excess by long covid patients is suspected to cause persistent neurological symptoms. Temelimab could neutralize this protein and short-circuit its reproduction cycle in the body. »

For the moment, the study is only in its infancy since it is a question of recruiting the first voluntary patients to take part in it. These must have had an acute covid objectified by a positive PCR or antigen test, or by a serological test. They must have persistent fatigue as well as a neurological disorder and must have a level of pathogenic protein W-ENV higher than normal. The study will be able to start when 200 patients have been recruited in the 5 participating Swiss centres.

“If positive, accelerated market demand could result in late 2023-early 2024.”

Then, 100 of them will receive temelimab and 100 others will receive a placebo for six months during which their condition will be assessed. ” It’s long and expensive “, recognizes Idriss Guessous. ” But we have the certainty that the methodology is good and that if we obtain positive results, it will mean that the treatment is really effective. We really have confidence in the solidity of the results that we will obtain. »

He specifies the timing: Patient recruitment is expected to be completed by the end of the year. Then, since the drug is evaluated for six months, we should have the first results in the summer, results for which the analysis should be ready in the fall. If positive, accelerated market demand could result in late 2023-early 2024. It is also possible that in the face of really telling and extremely positive results, the independent committee of this study will stop it early so that all participants have access to treatment. And that the placing on the market is therefore done as soon as possible. This is a relatively rare case, however.

Hopefully within a year we will be able to say that there is a cure for covid long, because behind the studies there are thousands of people suffering.



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