What I want from a biomedical ME service - An
ME Standard
Linda Crowhurst Aug 2 2007
I need :
Acknowledgement that ME is a WHO (ICD 10 -
G93.3)defined neurological disease. An appropriate biomedical
definition.
Appropriate diagnostic criteria that acknowledge
the wide number of specific physical symptoms.
A biomedical clinician who can recognise the
symptoms of ME and their impact. and make appropriate
recommendations, based on current physical research.
Appropriate biomedical tests and scans that prove
that I have a physical illness and illuminate what is going wrong in my body.
An appropriate biomedical assessment that will
provide a medically-informed report about my illness and disability.
Acknowledgement of severe disability so that support can be given to claim benefits and grants etc, to
enable true entitlement.
Careful testing and monitoring before any drugs are
prescribed.
Advice based on awareness to ensure safe practice
and safe treatments regarding how to deal with other medical conditions and illnesses that might
arise.
The neurological symptoms to be explored ,
prioritised and validated.
Access by phone for specific symptom management / backup.
Home visits from a biomedical clinician.
A service that is actively educating other
clinicians and paramedical staff regarding the true physical
nature and impact of this disease.
The opportunity to choose to participate in
physical research so that people who have severe ME can be reflected in any research evidence compiled.
A service that is particularly aware of the
severity of my symptoms and the high level of post-exertional
malaise and post-exertional fatigue I experience and can accommodate them; so that I can be seen and given proper ongoing support.
The name "ME" to be used, as opposed to "CFS".
What I do NOT want from an ME Service
A focus upon "fatigue".
A "therapy"-led service
To be included with undefined Chronic Fatigue
illnesses and states.
A psychosocial model of care.
To be offered CBT and GET, as these are both dangerous and unsuitable for people with ME.
To be patronised by medical professionals who do
not believe that I have a physical disease .
To be downgraded and treated as if my very real
and severe neurological symptoms, such as paralysis, spasms, parasthesia and pain are insignificant or psychiatric in origin.
To be offered psychiatric - originated management techniques , charading as treatment for this
physical illness.
To be described as "tired".
Pretending to meet the needs of people with ME
but actually working to a psychiatric paradigm.
Any service based upon the Fukuda or Oxford
criteria.
