Our Goals

Recognition of Long COVID

As an Impactful Pandemic within the COVID-19 Pandemic

The macro-economic impact of LC is snowballing due to:

  • the alarming scale of the LC pandemic,
  • the chronic and invalidating nature of LC,
  • the fact that most patients are of working age,
  • medical overconsumption due to uncoordinated diagnostics and care.

Because of the focus by policymakers and the healthcare sector on containing the COVID-19 pandemic, the millions of LC patients have grown into an enormous blind spot. Many of these long haulers live in precarious situations, with nowhere to turn, facing problems in many areas of life due to their affliction .

That Urgently Needs to Be Addressed

As was the case with the COVID-19-pandemic, a sense of urgency is vital to counteract its detrimental, possibly long-term effects, not only for individual patients but also for our society. 

Crucial first steps are the full-fledged recognition of LC as a medical condition and the speeding up of administrative proceedings. We receive many reports of people applying for financial support having to wait several months for a reply and/or being turned down because (their) LC is not recognized. These reports are especially alarming because COVID-19 disproportionally affects vulnerable groups. No disease should push people (deeper) into poverty. 

By Governments and the Healthcare Sector.

The World Health Organization (WHO) officially recognized LC as a medical condition and called on its member states to do the same. LCE asks all European governments to do so immediately. This means getting rid of barriers for LC patients to get proper care and support and communicating more broadly and effectively about: 

  • the existence of LC as a medical condition and its particularities,
  • statistical data on LC as was done for COVID-19, 
  • best-of-class diagnostic approaches and treatments,
  • avoidable mistakes and misconceptions related to LC.

Governments should work in concert with the healthcare sector to: 

  • develop adequate diagnostic, care, support and rehabilitation programs,
  • spread information about LC within the healthcare sector and among patients.

With Physical Causes

There is substantial evidence in scientific literature to establish links between biological mechanisms and the LC pathology. But because the available information on Long COVID doesn’t permeate the healthcare sector, many healthcare workers incorrectly attribute LC symptoms to psychological causes. COVID Long Haulers not only suffer extensively from their condition and the social exclusion that comes with it, they also struggle to be heard and treated by their physicians. 

Many Long Haulers have to make significant efforts to time and again prove that physiological conditions cause their symptoms. This struggle consumes a lot of energy, causes stress, and slows down the healing process. Increased recognition can redirect this energy to the search for therapeutic and rehabilitative solutions.

Also Affecting Young People

At present, we know far too little about the impact of the virus on children and adolescents. Nevertheless, reports about young people (including children) with LC symptoms are multiplying at an alarming rate. Young people should get the same access to correct diagnostics and proper care as other long haulers get. 

Research & Knowledge Distribution

Via Extra Funding for Patient-centric LC Research

LCE urges the scientific community to investigate the mechanisms and conditions causing LC. We ask for substantial and immediate increases in the funding of LC-specific, multi-disciplinary patient-centric research. This research needs to be co-designed and co-produced with LC patient organisations, acknowledging their expertise. 

In Multi-Disciplinary Networks

At present, each healthcare professional has to individually search for information on LC, while having no access to curated information. Multi-disciplinary, living guidelines must be developed at a supra-national level to streamline this process. They should draw from insights gathered across the globe. These guidelines should then be adapted to the care network of each country.

With an Urgent focus on Trustworthy Diagnostics

Too many LC patients still get the wrong diagnosis or are unable to provide proof of their condition. LCE demands the rapid development of universal guidelines for the diagnosis of Long Covid. A trustworthy methodology for clinical diagnoses is urgent because of the known issues with PCR and antibody tests. This approach is a workable fix until reliable biomarker-based LC tests are developed. 

Rehabilitation

Based on medical needs

All support of and care for LC patients should be designed and used based on the specific manifestation of LC in the patient and not on secondary characteristics such as age or previous COVD-related hospitalization.

Using a multi-disciplinary approach

In addition, there is a need for more cooperation and improved coordination between primary care physicians and hospitals with respect for the subsidiarity principle. Primary care physicians are the first point of contact for patients, and they must be provided with easily accessible and up-to-date to information on:

  • how to diagnose Long Covid,
  • where patients can find information and support,
  • available specialized care.

Some hospitals provide Long COVID programs. However, primary care physicians are not always informed about them, and are often unable to register their patients. An alternative may be the creation of specialised Long Covid care centers, accessible for every patient without having to rely on their primary care physician.

Freed from counterproductive administrative and financial hurdles

Because LC hasn’t been recognized as a medical condition in most countries, the quest for a correct diagnosis, specialized care and adequate support is prohibitively expensive, complicated and exhausting for most LC patients. LC patient groups should be consulted in tracking down these hurdles and finding quick ways to eliminate them. 

We also believe that economies of scale will be needed to effectively develop solutions to the LC pandemic. Generally, we support pooling and sharing expertise at a supra-local (and supra-national) level to gather as much information as possible on the condition and the lessons learned by different physicians.

With sufficient support for those with little or no access to informal care

Finally, we would like to emphasize the importance of informal carers working at the neighborhood level. This pandemic has repeatedly shown how important it is to put the principles of primary care reform into practice. We, therefore, hope that these will be taken into account in our care at all policy levels.