Patients Increasingly Advocate for Themselves as Long Covid & ME/CFS Misdiagnosis Concerns rise
Berlin – A growing number of patients with Long Covid and Chronic Fatigue Syndrome (ME/CFS) are facing challenges in receiving adequate care,with some experiencing worsened conditions due to inappropriate rehabilitation programs. Experts are now advising patients to proactively prepare for doctor’s appointments and advocate for their needs within a healthcare system that sometimes fails to recognize the complexities of these conditions.
The issue stems from a lack of understanding and validation of symptoms,leading to potentially harmful interventions. “We also have examples here where people were literally rehabilitated into wheelchairs,” says Martina King, highlighting the severity of mismanaged care. This lack of recognition can erode trust in medical professionals and the healthcare system, causing patients to forgo seeking further help despite disease progression.
To combat this, King advises patients to meticulously document their symptoms before appointments. Resources like the “gesund.bund.de” portal offer helpful questions to guide planning, including: Where and since when do the complaints exist? How do they feel? When is it especially bad?
Bringing a companion to appointments can also be beneficial, as objective observations can support the patient’s self-reported experience. “Everything that can be objectified is a help to the doctor,” King explains. She recommends a collaborative approach with physicians, rather than confrontation.
If a collaborative approach proves ineffective, patients are encouraged to provide factual feedback regarding their concerns and inquire about the reasoning behind a doctor’s conclusions. Patients also have the right to seek a second opinion or a referral to a specialist.
For those still struggling to be heard, patient organizations, advisory services, and self-help groups can provide crucial support, orientation, and practical assistance, according to Mandy Mangler.
Ultimately, experts emphasize the importance of self-validation. “But what is most meaningful is to continue to take your own symptoms seriously and not to blame yourself – because it is a structural problem, not your own failure.”
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