Help with my hospital stay
I need financial support for a hospital stay. The emergency fundraiser helps me cover a single room and other costs associated with the stay.
Visit the emergency fundraiser on GoodCrowd (German) ↗ME/CFS · Long COVID · Multisystem diseases
Share knowledge.
Strengthen care.
Create change.
I aim to expose gaps in care, enable practical support and drive medical and organisational change. For people with multisystem diseases – especially those too ill to organise help themselves.
Author and contact person: Heike Sachtleben
Discover my purpose ↓
See. Understand. Stand together.
Causes close to my heart
Project video
My purpose
Awareness is the beginning.
Practical help is the goal.
I want to show where care fails, why it happens and what needs to change. Existing medical and therapeutic options should reach people who need them. New approaches need research and a path into practice.
My own experiences are a starting point for this project. I want to use my story and medical knowledge to make wider issues tangible and help protect others from similar experiences. My focus is on people who need support and the changes that could help them.
Six priorities for better care
These are the goals I want to work towards. Content and practical services will be developed step by step.
Recognise illness early. Prevent severe deterioration.
I advocate early medical care and prevention, including knowledge in primary care, standardised questionnaires, clear guidance and access to specialists. Pacing, appropriate sick leave, symptom management and protection from overexertion deserve particular attention.
Make care reliable.
Primary care, emergency services, hospitals, nursing, health insurers, medical assessments and rehabilitation must respond to people’s needs. I want to highlight overload, stigma and premature psychosomatic attribution, and promote appropriate care.
Coordinate help. Support families.
I want to encourage trained volunteers, home-based medical care and coordinated everyday assistance. People with very severe illness need accessible points of contact. Organising help must not fall solely on relatives.
Find peer support groups
Looking to connect with others? The ME/CFS und PAIVS Hilfe e.V. directory helps you find groups about ME/CFS, Long COVID and Post-VAC by topic.
Bring specialties together.
My goal is interdisciplinary care across immunology, neurology, vascular medicine, gastroenterology, allergology, metabolic medicine and other specialties. Biochemical and pathophysiological mechanisms should be investigated and translated into therapeutic approaches.
Make treatment accessible.
I want to identify barriers to existing treatment options, including care for pain, dysautonomia, MCAS, gastrointestinal dysfunction, deficiencies and other coexisting conditions. Research findings should inform practical care.
Reach those who remain unseen.
People who have been unable to leave their home or bed for years need a voice and a meaningful prospect of care. I want to reach those who no longer have the energy to ask for help themselves.
The questions that guide me
- What is going wrong?
- Why does it happen?
- What are the consequences?
- What practical medical and organisational changes can address it?
- Who can put them into practice?
Planned content · in development
Many formats. One shared goal.
Planned formats include short videos, documentaries, articles, voice messages, personal accounts, conversations, expert interviews and concrete examples from everyday care.
Films & documentaries
Planned documentaries will explore experiences of illness, care and medical developments.
Conversations & interviews
People affected, clinicians and researchers will share their experiences and perspectives.
Knowledge & education
Accessible explainers will explore medical mechanisms, research and questions of care.
Live conversations & webinars
Future online discussions will focus on research, care and therapeutic approaches.
Analysis & publications
Planned articles, commentary and research overviews will explore multisystem diseases and their impact on society.
This is about responsibility, practical help, medical care and a change in public understanding. So that missing or inappropriate care no longer leaves people behind.
Support Heike
If you would like to support me, you can find my fundraising campaign here.
Go to Heike’s GoFundMe campaign ↗