ME/CFS Education: Times are changing with Covid-19. The need for action is enormous., Lost Voices Foundation, press release

For decades, people have often lived seriously ill after a viral infection without proper care or medical care. Until now, post-viral illnesses were hardly ever present in medical training and continuing education. With dramatic consequences for those concerned. This situation needs to change urgently. Those affected and their loved ones are bringing attention to the disease around the world and fighting for more research and support. Before the COVID-19 pandemic, approximately 250,000 people suffered from myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short. The number of people affected has likely increased significantly due to the pandemic.

Following the COVID-19 pandemic, ME/CFS has gained notable visibility, with many COVID-19 survivors reporting the patterns of profound fatigue, cognitive impairment, orthostatic intolerance, recurrent relapses, and other medical conditions that characterize ME/CFS . There is growing empirical evidence[1]that an infection with SARS-CoV-2 can lead to late effects in infected people. Those who develop long-term COVID may meet diagnostic criteria for ME/CFS. It is therefore feared that the number of people suffering from ME/CFS will increase significantly due to the pandemic. It is all the more important to set up appropriate multidisciplinary structures and teams now, to create clinical contact points, diagnostic and care centers and home care offers for people with ME. /CFS and long-COVID or post-COVID. There is a slow realization that medicine has not taken complications after infections seriously for decades and that there is a lack of treatment options and medications. People with ME/CFS were and often are not taken seriously with their complaints and are sometimes massively stigmatized. This is one of the reasons why there is still a lack of care concepts, trained medical and nursing staff and medical responses to post-COVID and ME/CFS.

ME/CFS is a serious neuroimmunological disease with a chronic course and great complexity.

New scientific findings on ME/CFS and additional experiences in the Corona period, also with the long/post-COVID, lead to better understanding. Unlike ME/CFS, “Long-COVID” is on everyone’s lips. Although not everyone with long-term COVID-19 develops ME/CFS, many chronic courses of COVID-19 infection can lead to post-COVID and thus ME/CFS. These findings have already led to major changes in ME/CFS guidelines. At the end of 2021, the UK’s NICE (National Institute for Health and Care Excellence) released comprehensive revised guidelines for ME/CFS. In a few weeks, the updated S3 guideline “Fatigue” will also be published in Germany, which will in future be based on the NICE recommendations on ME/CFS.

The need for action is enormous. Great efforts are needed to implement the new guidelines and convince the medical profession to follow the new recommendations.

During the written hearing before the Lower Saxony state parliament on the occasion of the consultation “Supporting people with chronic fatigue syndrome (ME/CFS)”, some of the main demands of the Lost Voices Foundation were the establishment of special outpatient clinics at the university clinics, the establishment of specialist clinic beds and the establishment of counseling centers and the establishment of appropriate care settings tailored to the special needs of seriously ill people with ME/ SFC.

This gap is now recognized by politicians. But the structures, but also the will of the clinics to provide suitable points of contact, must be created little by little. There is still a lack of necessary funding for research, care and nursing. There is still practically no biomedical research in Germany.

The Lost Voices Foundation has been supporting urgent basic research on ME/CFS with its fellowship program since 2017. To date, the Lost Voices Foundation has supported 20 young scientists with a fellowship. Research into postviral illnesses is currently funded at the Charité Fatigue Center Berlin and the MRI Chronic Fatigue Center for Young People (MCFC) at the Technical University of Munich. This commitment needs to be further expanded. Every donation helps continue this important fundraising program and thus actively supports ME/CFS research.

[1] Kedor et al., 2021. https://doi.org/10.1101/2021.02.06.21249256;
Mancini et al., 2021. https://doi.org/10.1016/j.jchf.2021.10.002;
Jason and Islam, 2022. https://doi.org/10.47316/cajmhe.2022.3.1.04

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