An excerpt from my new book More Notes for Carers: THE CORE COMPONENTS OF A PROPER ME SERVICE
Excerpt From More Notes For Carers
For 27 years and counting, we have lived in hope that the NHS would provide a safe, appropriate medical service for people diagnosed with Myalgic Encephalomyelitis (ME), a complex multisystemic disorder, involving profound dysregulation of the central nervous system immune system dysfunction, cardiovascular abnormalities and autonomic nervous system dysfunction.
Despite numerous engagements at both local and national level, there is still no such service available.
This is not an exhaustive list, just some suggestions, that we would still like to see come about.
A specific ring-fenced definition of what "Myalgic Encephalomyelitis” means, incorporating the historical truth of its association with Enterovirus and Polio. Without it a service is unsafe and its client group unidentifiable.
A Separation of "ME" from “CFS". ME is a specific disease, CFS is a syndrome of symptoms, sometimes used to mean ME, other terms incorporating a wider group of poorly recognised or undiagnosed conditions and meaning a much wider group of people. This ambiguity leads to confusion.
Complete redundancy of the term “ME/CFS” and “CFS/ME”. This is a conglomerate term, it has no place in defining or recognising the neurological disease Myalgic Encephalomyelitis. The term helps no one get right treatment or recognition, it continues to promote the wider definition of fatigue illnesses under the umbrella term and often has the adjunct “aka Myalgic Encephalomyelitis “ attached to it incorrectly. No one is safely or clearly identified under this umbrella label.
Correct diagnosis to ascertain who has ME and separate other conditions, alongside the use of better criteria to define ME, for example the International Consensus Criteria (ICC), although this could still be improved upon.
A specific category of "Very Severe ME” needs to better identified, with clearly identifiable criteria. This profoundly ill, severely disabled, fragile group needs to be recognised as such, in order to be better protected, rather than incorporated into a broader category of “Severe ME”, which accommodates a much wider group of ability and needs. Only 2% of people have Very Severe ME.
The categories of ME to include a Symptom Severity Scale for each symptom, in order to build up a better picture of disability. The term “Severe ME “is usually associated with being bed bound, however it does not indicate the reason for this state of being. We advocate better acknowledgment and recognition of individual symptom severity to provide clearer understanding of the experience. Not everyone would be totally bed bound in this category, yet could still be very severely disabled and have a diagnosis of Very Severe ME.
Honouring the full symptom experience of ME alongside a relevant severity scale.
A full biomedical approach provided by practitioners highly trained in working with people with “ME”, not “ME/CFS”, or any Psychosocial model of interpretation.........