Long Covid patient associations are calling for a center of expertise

Long Covid patient associations are calling for a center of expertise
Long Covid patient associations are calling for a center of expertise

Connect stakeholders

The call to quickly create a center of expertise for long Covid, launched to the future government by two patient associations via a petition (read elsewhere), resonates with the internist. “The idea of ​​having a center connected to a network, of bringing together the different stakeholders interested in long Covid is excellent. Monitoring these patients is complicated and time-consuming. These are polypathological patients, all systems are affected. The first consultation lasts 60 to 75 minutes… We validate their symptoms. This first step taken is not synonymous with healing but putting a name to their suffering helps these patients who are often tossed from one doctor to another, from one consulting doctor to another, from one controlling doctor to another. ‘other… Ultimately their big fight is to obtain recognition!’

Words but not only… Dr. Nicolas tries different treatments “à la carte“by weighing the benefit-risk balance: naltrexone to reduce neuroinflammation, piracetam, sometimes a little rilatine to raise dopamine levels, norepinephrine plaquenil which modulates immunity…

Irrefutable scientific evidence

Denying the existence of long Covid as most of his colleagues still do is an aberration, for Dr Nicolas. “There is irrefutable scientific evidence. We know what is happening on the pathophysiological level but most patients come to consult me ​​telling me that their neurologist, their cardiologist or their general practitioner does not believe in long Covid..”

Same incomprehension, but tinged with revolt, among Tomaso Antonacci, spokesperson for the LongcovidBelgium patients association. It could enlighten more than one doctor on the knowledge acquired in fundamental research. “ This is what exasperates long-term Covid patients who read scientific publications and do not want to stay moping: we understand that solutions can emerge but nothing follows…”.

Plasmapheresis in Cyprus

By dint of seeing their lives undermined by long Covid, by dint of not being heard by the medical profession, most patients are reduced to self-diagnosing, or even self-medicating, indignant Tomaso Antonacci.

Patients crossed the border to obtain the new antiviral Paxlovid, validated at the end of January 2022 by the French health authorities. Others are turning to alternatives whose effectiveness has not been proven, such as plasmapheresis, a filtering of the blood that they hope could eliminate the tiny clots present in the smallest vessels, clots responsible for the most post-Covid symptoms. “People went to Cyprus to have plasmapheresis, explained Tomaso Antonacci. They have spent thousands of euros for temporary relief, with the risk that it will not be carried out in good conditions.”

Formalize support

To avoid reaching such extremes, doctors and researchers should be able to devote themselves full time to improving diagnosis and validating treatments by conducting large-scale clinical trials to lead to the development of guidelines. for the attention of caregivers.

If we want to get out of this huge public health problem, we will have to rationalize things at some point., says Dr. Nicolas. We cannot continue to do our own cooking in our corner, to try to help people as best we can… We must see this on a larger scale and formalize the care so that it is more effective, put in place aid and finally achieve recognition.”

Three out of four patients get better

The earlier the pathology is treated, the more easily the patient is reinstated, argues the internist, with supporting statistics. “70% to 75% of our patients get better after several months or even several years of treatment, combined with physiotherapy, appropriate neuropsychological monitoring… After a long interruption, a good number of them will return to work, at part-time for the most part. Some need a suitable workstation. Things need to change. If we continue in our own corner, it won’t work ! There is a huge card to play when it comes to public health!

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