News from Germany

Interview in the big german newspaper DER SPIEGEL:

www.spiegel.de

(S+) ME/CFS: Eine Psychotherapeutin erklärt, weshalb die Krankheit so oft verkannt wird

Manche Betroffene können nicht mal mehr das Bett verlassen: Doch die Ursachen der Krankheit ME/CFS sind kaum erforscht, es gibt viele Falschannahmen. Eine Psychotherapeutin sagt, was sie über Patienten gelernt hat und was sie fordert.
www.spiegel.de www.spiegel.de

AI Summary: Interview on Chronic Illness ME/CFS​

This interview with psychotherapist Bettina Grande explores the significant suffering, misunderstanding, and neglect faced by those living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Key points:

  • Serious physical illness: Most of Grande's ~250 ME/CFS patients are physically very ill and mentally resilient. She strongly emphasizes that ME/CFS is not a psychological disorder—the vast majority do not have psychiatric conditions. Those few with prior mental health issues often struggled because of the disease's impact (e.g., food intolerances triggering eating disorder relapses).
  • Debilitating symptoms: ME/CFS is characterized by exertion intolerance—any minor physical or mental activity can worsen symptoms ("post-exertional malaise"). Patients suffer from sleep disturbances, pain, concentration problems, circulatory issues, and heightened sensitivity to stimuli. Many are bedridden and isolated in dark, quiet rooms.
  • Lack of medical support: Around 90% of Grande's patients do not receive adequate medical care—often no physicians at all. Even basic symptom relief (like pain medication) is frequently denied because patients are too ill to attend appointments, leaving them in extreme distress.
  • False assumptions: Despite exhaustive tests often showing no obvious abnormalities, it is incorrect—and common—to classify ME/CFS as psychosomatic. Grande criticizes this approach, noting that normal behavior for such a sick person is often pathologized.
  • Societal neglect and humiliation: ME/CFS patients are routinely stigmatized, ignored, or even abused by agencies, physicians, and society—often denied disability support or proper care, forced beyond their physical limits, and sometimes blamed for their illness.
  • Suicidal crisis: Grande notes the tragic reality that even mentally stable, young patients sometimes contemplate or pursue assisted suicide—not because they want to die, but because they are left hopeless and unsupported. All her patients want to live, have plans, and wish for recovery.
  • Psychotherapy’s role: Psychotherapy doesn’t cure ME/CFS but offers crucial support. Grande runs a network to improve access and care for these patients. She stresses psychotherapists’ limits: if biological and social needs were met, little would remain for her discipline to address.
  • Pacing and policy: The core advice for ME/CFS is “pacing”—never exceed your energy limits to avoid worsening the condition. Grande calls for better implementation of existing care guidelines and public awareness campaigns.
Conclusion:
The interview exposes the harrowing daily reality, neglect, and misunderstanding endured by ME/CFS patients. It stresses the urgent need for medical, social, and political support, corrects misconceptions about the illness, and advocates for greater awareness and compassionate care.
  1. https://workwellfoundation.org/5-mi...ic-encephalomyelitis-chronic-fatigue-syndrom/
  2. https://www.usz.ch/krankheit/chronische-muedigkeit/
  3. https://solvecfs.org/world-me-day-2...ould-know-about-myalgic-encephalomyelitis-me/
  4. https://www.meduniwien.ac.at/web/fo...e-syndrome-patients/allgemeine-informationen/
  5. https://cfsrecovery.com/5-common-myths-about-chronic-fatigue-syndrome-you-should-stop-believing/
  6. https://www.mecfs.de/me-cfs-haeufige-missverstaendnisse/
  7. https://happiful.com/5-myths-about-chronic-fatigue-syndrome-debunked-2
  8. https://www.msdmanuals.com/de/heim/...pfungssyndrom/chronisches-erschöpfungssyndrom
  9. https://www.mecfs.de/was-ist-me-cfs/
  10. https://de.wikipedia.org/wiki/Myalgische_Enzephalomyelitis/Chronisches_Fatigue-Syndrom
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Grande: According to psychosomatics, such a disorder brings with it a "disease gain," meaning those affected benefit in some way, for example, because they derive psychological benefits from being cared for. I see patients losing their jobs, their relationships, their friendships, their entire life perspective, and returning to their childhood bedrooms, where they are cared for by their parents. The parents can often only stay in the room for a few minutes at a time so as not to overburden the patients. What kind of psychological background must one construct to see a "disease gain" here?
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The article is well worth a read. It’s excellent. It’s also archived at the usual places..
SPIEGEL: In an interview with the Frankfurter Allgemeine Zeitung (FAZ), the general secretary of the German Society for Neurodegenerative Diseases (DGN), Peter Berlit, said it's also about the so-called biopsychosocial model. According to this established concept, illnesses are influenced by biological, psychological, and social factors, and all three areas must be considered for successful therapy. Do you disagree with that?

Grande: Regarding the biopsychosocial model of ME/CFS, as a psychotherapist, I would say this: If doctors and scientists focused on biological factors and government agencies and health insurance companies ensured that social factors were less devastating, there would be very little left for my profession.
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This is an excellent answer. It highlights how completely backwards the implementation of the BPS model is: in a sane world, psychology would be used for trying to alleviate with the mental consequences of the shortcomings of the other two.

Now, it’s used as a solution to everything.
 
Mij said:
Merged
The restrictive approval process for disability pensions is putting chronically ill people in dire straits – despite scientific findings. The case of a woman with ME/CFS from Lower Saxony illustrates the problems.
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Full article now available here:

web.de

Zu 97 Prozent bettlägerig, aber für die Rentenversicherung voll erwerbsfähig

Die restriktive Bewilligungspraxis bei Erwerbsminderungsrenten bringt chronisch Kranke in Not – wissenschaftlichen Erkenntnissen zum Trotz. Der Fall einer ME/CFS-Betroffenen aus Niedersachsen zeigt, wo die Probleme liegen.
web.de web.de
 
Very severe patient story covered in Schwäbische: https://www.schwaebische.de/regiona...-die-gesundheit-macht-ihr-zu-schaffen-3830289

Valesca Jones, originally from Ravensburg, Germany, moved to New Zealand in her early 20s to study veterinary medicine and start a life with her partner Shane. Shortly after arriving, she was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)—a debilitating illness that has since worsened significantly.

Today, Valesca is severely ill, largely bedridden, and reliant on a wheelchair and feeding tubes due to additional health issues, including Pemphigus vulgaris (a painful autoimmune disease) and MALS, a vascular compression syndrome. Her immune system is extremely compromised, and she recently required a blood transfusion due to complications from medication.

Her husband Shane, who works full-time as a fence builder, also serves as her full-time caregiver—handling all medical needs, household duties, and physical care. The emotional and financial burden is immense. With limited paid leave, Shane often has to take unpaid days off to accompany her to doctors.

Friends and family launched a GoFundMe campaign (“Hilfe für Valesca – schwerkrank in Neuseeland”) to help the couple manage increasing medical and living costs. They're also renovating their home to make it wheelchair accessible and hope to buy a van to ease transportation.

Despite everything, Shane and Valesca find value in small joys—like short outings or time together—and remain deeply committed to each other.

Donation link: GoFundMe – “Hilfe für Valesca – schwerkrank in Neuseeland”
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www.abendblatt.de

Corona Hamburg: „Er ist halb tot“ – Theo bekommt trotz Bettlägerigkeit Pflegegrad null

19 Jahre alter Hamburger kann Haus nicht verlassen, zum Sprechen fehlt die Kraft. Medizinischer Dienst sieht keine Beeinträchtigungen.
www.abendblatt.de www.abendblatt.de

Short AI Summary:

19-year-old Theo L. from Hamburg is severely ill with ME/CFS after a COVID-19 infection. He is bedridden, can barely communicate, and hasn’t left home in over a year. Despite clear medical evidence and a previous care level 2 classification, the Medical Service recently downgraded him to care level 0, denying any need for support. His mother, who has spent over €20,000 on treatment, is challenging the decision legally. The case highlights major flaws in how Germany's healthcare system assesses chronic and invisible illnesses like ME/CFS.
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www.uniklinik-ulm.de

Long Covid und ME/CFS bei Kindern: Minister Manfred Lucha zu Besuch am Universitätsklinikum Ulm

Versorgung verbessern, Forschung stärken – Der Gesundheitsminister informierte sich über das landesweite Projekt MOVE-ME/CFS BW
www.uniklinik-ulm.de www.uniklinik-ulm.de
AI summary
The MOVE-ME/CFS BW project is an interdisciplinary research and care initiative in Baden-Württemberg aimed at sustainably improving treatment structures and advancing scientific understanding for children and adolescents with ME/CFS and Long Covid. It continues and expands upon the successful MOVE-COVID BW model, involving the university children’s hospitals in Freiburg, Heidelberg, Tübingen, and Ulm.

Key aspects include:

  • Building and strengthening interdisciplinary care pathways and structures for young patients
  • Advancing research to better understand underlying mechanisms
  • Rapid implementation of scientific findings in clinical practice
  • Addressing specific needs, such as reducing school absences and supporting transitions to adult care
  • Collaboration among general medicine, neurology, psychosomatics, sports and rehabilitation medicine, and social pediatrics
The project receives €2 million of funding from the state and runs from March 1, 2025, to February 28, 2027—all for the goal of providing sustainable improvement for affected children and adolescents in the region.
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www.moz.de

Freitod in Bernau: Leben in Dunkelheit und Stille – warum Marc Kirch seinen Suizid plant

Der 51-jährige Marc Kirch aus Bernau ist schwerst an ME/CFS erkrankt und plant seinen begleiteten Freitod. Sein Fall wirft Fragen über den Umgang mit Erkrankten und die Anerkennung ihrer Leiden auf.
www.moz.de www.moz.de

AI summary:
Marc Kirch, a 51-year-old man from Bernau, is severely affected by ME/CFS and has decided to pursue assisted suicide. Once active and happy in a sheltered workshop and group home, his condition deteriorated to the point where he has been bedridden for two years, confined to a dark, silent room due to extreme sensitivity to light, sound, and other stimuli. He describes his existence as living in a dark prison, enduring unbearable suffering with no hope of recovery.

Despite his will to live, he sees no future, as treatment options are lacking and unlikely to emerge in time. Marc has joined the German Society for Humane Dying and completed the required steps for assisted suicide, including psychological evaluations. His first official conversation with a suicide assistant is scheduled for August 18, 2025. Though he has not yet set the exact date of death, he says it will be soon. He views death not as a tragedy, but as a relief from relentless suffering.
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