Guest article: Ricarda Piepenhagen

Research, treatment and recognition for people with ME/CFS and post-infectious syndromes

It is now a well-known fact that people with AIDS were initially discriminated against and stigmatised after the disease was discovered in 1981. It was only when activists, progressive politicians and scientists began to campaign against discrimination that we slowly began to see a paradigm shift in dealing with the disease. In 1985, awareness campaigns such as that of politician Rita Süssmuth, who had an AIDS brochure distributed to all German households, contributed to a drop in this stigmatisation of those suffering from AIDS. Süssmuth's motto read: ‘We fight the disease, not the sufferers’ („Wir bekämpfen die Krankheit, nicht die Betroffenen”). For decades, post-acute infectious syndromes (PAIS) such as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) were barely noticed and analysed in psychological terms. It was not until the SARS-CoV-2 pandemic and the increased occurrences of Long COVID that more attention was paid to these patterns of illness. However, we still need major awareness campaigns geared towards medicine and society. The steadily growing number of patient organisations is not sufficient to tackle this social task single-handedly. The people affected have to rely on the support of politicians, scientists and the healthcare system.

NichtGenesen is committed to the research, healthcare and recognition of post-infectious syndromes such as ME/CFS or Long COVID or Post COVID, as well as Post-Vac syndrome, no matter what the causative agent. The NichtGenesen initiative is an association of sufferers and their relatives, several hundred of whom are actively involved in politics. In the beginning, NichtGenesen mainly focused on visualisations that were effective in terms of publicity in order to make the situation of those affected visible to politicians, medicine and society. The high level of demand quickly led to an expanded range of activities. NichtGenesen is now connected to healthcare and political stakeholders at both national and state level. We receive enquiries from desperate patients on a daily basis, which is why we also offer accompanied self-help groups in all 16 federal states.

After a six-month period of illness, between 31 and 53 per cent of patients with Post COVID fulfil the diagnostic criteria for ME/CFS (Kedor et al., 2021; Haffke et al., 2022; Legler et al., 2023; Reuken et al., 2023; Davis et al., 2023). All patients with ME/CFS and at least 74 per cent of Post COVID patients suffer from PEM, short for post-exertional malaise (Wright et al., 2022; REHADAT, 2023; Twomey et. al, 2022; Mclaughlin et al., 2023). It indicates intolerance to any form of exertion and is characterised by a worsening of symptoms after minor physical and/or mental exertion. The transition between Post COVID patients with PEM and ME/CFS patients is rather smooth. Other symptoms that can occur in all three diseases are fatigue, i.e. severe exhaustion that does not improve with rest and sleep, as well as adverse cardiological, neurological, gastroenterological and pneumological symptoms.

Differences in the severity of the disease among patients

Among ME/CFS patients, there are mildly affected patients who are still able to work to some extent, for example, but there are also severely affected patients who can no longer brush their own teeth or chew their own food without suffering a deterioration in their condition. In the most severe stage, ME/CFS can be fatal–even for patients who are young (Hoffmann et. al., 2024). According to the National Association of Statutory Health Insurance Physicians (KBV), there were around 500,000 ME/CFS patients in Germany in 2021 (KBV data, 2023). Two years later, this figure has already jumped to 620,000 according to current data from the KBV (Riffreporter, 2024). This figure has soared due to COVID and, according to an IQWiG report commissioned by the German Federal Ministry of Health, was between 140,000 and 310,000 in pre-pandemic times (IQWiG, 2023). 

There is a pressing need to tackle this issue quickly because of the economic impact of Long COVID, ME/CFS and Post-Vac, if nothing else. 400 million people worldwide are affected by Long COVID, putting a strain on the health and social systems and making them redundant in the labour market to a large extent. The resulting economic damage amounts to 1 per cent of the global economy (Al-Aly, Davis, McCorkell et al., 2024). In relation to Germany, this corresponds to around 42 billion euros in 2023.

Post-infectious diseases also play a significant role in the context of the ongoing shortage of skilled labour. 55 per cent of Long COVID patients are unable to work, and the figure for ME/CFS patients is as high as 60 per cent (REHADAT, 2023; Bateman et al., 2014). The prevalence of Long COVID or Post COVID is 3.1 per cent or more according to studies (Rea, Pawelek, Ayoubkhani, 2023; Kuang et al., 2023; WHO, 2023; CDC, n.d.). This corresponds to at least 2.58 million people affected in Germany. For Post-Vac syndrome, there is not enough data available to draw any definitive conclusions. Overall, however, these figures make it clear that these diseases have wide-ranging repercussions that affect society as a whole.

Despite the directive: Healthcare is nowhere near sufficient

Almost five years after the start of the pandemic, the majority of people affected remain untreated for the most part. According to the Long COVID guideline of the Federal Joint Committee (G-BA), healthcare is to be provided to patients in three stages: General practitioner healthcare first, then specialist healthcare and finally outpatient specialist healthcare (G-BA, 2024). In practice, however, this approach fails to materialise at several points. The Joint Committee (G-BA) guideline, which applies to all three patterns of illness, stipulates that referral to outpatient specialised healthcare should be considered at the latest ‘if the patient has been unable to work for three months, unable to attend school for four weeks or has ME/CFS of at least moderate severity’. However, in some federal states, such as Berlin, there is not a single outpatient clinic for patients with Long COVID. The rush to the few outpatient clinics available nationwide is correspondingly high, and often entails very long waiting times. Post-Vac patients often do not have access to specialised healthcare due to the cause of their disease. The existing specialised and university outpatient clinics that provide access to diagnostics are not equipped to adequately care for all those affected. There are only two specialised ME/CFS outpatient clinics in Germany for the more than 620,000 ME/CFS patients. As a comparison: In Germany, there is one outpatient clinic for around 1,500 people with multiple sclerosis (German Multiple Sclerosis Society (DMSG), 2022). Especially severely and very severely affected people with ME/CFS who are bedridden fall through the cracks and usually have no healthcare at all. The requirements would also be met here in the Joint Committee (G-BA) guideline through ‘outreach healthcare’ and ‘telemedical care’. The implementation of the Joint Committee (G-BA) guideline is therefore not fulfilled. 

General practitioners and specialists often do not have the necessary knowledge to provide healthcare to patients. This is partly due to the fact that post-infectious patterns of illness such as ME/CFS are not an integral part of medical training and have only gained attention during the pandemic. Only a few doctors have taken part in further training on the patterns of illness, as there is too little on offer and there is sometimes a lack of interest.

Need for research and a mission for society as a whole

In order to fundamentally improve the precarious situation of those concerned, it is necessary to set up long-term programmes for basic, therapeutic and drug research and fund them accordingly. As there is currently no authorised drug for the causal treatment of patients, the short-term use of off-label drugs for symptom relief and therefore treatment is urgently required. In addition, we need far more contact points for patients in the form of specialised and university outpatient clinics. It is very important that general practitioners and specialists undergo regular training. It is also important that the recognition of patterns of illness be improved under social law. Within the scope of rehabilitation measures, assessments for a reduced earning capacity pension, a level of care or a degree of disability, more often than not, the patients are analysed in psychological terms and stigmatised. As a result, those affected often do not receive the benefits to which they are entitled. We must also put an end to contraindicated therapies such as Graded Exercise Therapy (GET) for existing PEM, which almost always leads to a deterioration in the condition of those affected, which in some cases can be permanent (Breedvelt et al., 2023; Hammer et al., 2023; Appelman et al., 2024).

As a society, we now have the opportunity to learn from the past and deal with post-infectious syndromes better than we did with diseases such as AIDS. It is up to the relevant decision-makers to decide whether we seize this opportunity. What is certain, however, is that the problem is becoming more urgent by the day and that those of us affected need help from politicians and the health and social services without unnecessary hassle as soon as possible.