Patients Increasingly Advocate for Themselves as Long Covid โ& ME/CFS Misdiagnosis Concerns rise
Berlin – A โgrowing number of patients with Long Covid and Chronic Fatigue Syndrome (ME/CFS) are facing challenges in receiving adequate care,with some experiencing worsened conditions โฃdue to inappropriate rehabilitation programs. Experts are now advising patients to proactively prepare for doctor’s appointments โคandโ advocate for their needs within a healthcare system that sometimes โฃfails to recognize โthe complexities of โฃthese conditions.
The issue stems from a lack of understanding and โคvalidation of symptoms,leading โคtoโค potentially harmful interventions. “Weโข also have โexamples here where people were literally rehabilitated into wheelchairs,” says Martina King, highlighting the severity of mismanagedโ care. This โฃlackโข of recognition can erodeโฃ trustโข in โmedicalโ professionals and โคthe healthcare system, causing patients to forgo โseeking further โขhelpโ despite disease progression.
To โcombat this, King advises patientsโข to meticulouslyโ document their symptoms before appointments. Resources like the “gesund.bund.de” portal offer helpful questions โto guide planning, including: Where and since when do the complaints exist? How do theyโข feel? When is โคitโข especiallyโ bad?
Bringingโค a companion to appointments can also beโค 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 โproves โineffective, patients โare encouraged to provide factual feedback regarding their concerns and inquire about the reasoning behind a doctor’s conclusions.โ Patients also have the right to seek a second opinion or a referral to โฃa specialist.
Forโ those โstill struggling to be heard, patient organizations, advisory services,โ and self-help groups โขcan provide crucial support, โorientation,โ and โขpractical assistance, โขaccording to Mandy Mangler.
Ultimately, experts โemphasize 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 structuralโค problem, not your own failure.”
ยฉ dpa-infocom, dpa:251201-930-367390/1
