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Research
Ring-fenced, multi-year ME and long covid Research Fund of £100m per year overseen by a scientific board with 50% independent patient representation and with 80% allocated to
biomedical mechanisms and therapeutics, not behavioural studies.
Living with ME
National network of ME Centres of Excellence delivering:
1.Home-based outreach for severe/very severe patients
2. Rapid-access inpatient beds with low-stimulus environments for
emergency care.
3. One stop online clinics (eg. immunology, cardiology, neurology, sleep etc)
Social care
Automatic highest-rate disability benefit entitlement for patients who meet severe or very severe criteria, removing the real harm done by detailed assessments and reassessments.
24-hour home-care
entitlement for all very severe cases.
@alexis_me
Education
Creation of a new medical specialty to look after medically complex illnesses and comorbid patients including ME and other IACCs such as long covid.
This would have its own
postgraduate training scheme and consultant posts in every hospital.
Training would include the patient experience, immunology, cardiology, infectious diseases, renal and respiratory medicine, environmental medicine and more including the history of ME.
What the ME delivery plan should have looked like - full post here:
www.instagram.com/p/DMa8sjPMzd...