Unfortunately, there is no test to identify ME currently, so it is a diagnosis of exclusion and GP’s are left to manage patients at home. The best criteria for ME to date are the ICC criteria. There used to be a VP1 test initially in the late 1980’s, which was developed but withdrawn – it identified that people with enteroviruses went on to develop ME. Betty Dowsett, a pioneer for ME and who was associated with the great Dr Melvin Ramsay, was the 25% Group Medical Advisor for many years.
She wrote many medical research papers, refuting the psychosocial approach to ME. A range of viruses are now currently associated with ME.
Without a physiological test, it is hard to be certain of the diagnosis, which is clinical in nature and relies on ruling out all other likely diseases. As a consequence of poor and variable diagnoses, there are a wide range of illnesses incorporated into the NHS ME/CFS label, which confuses the development of a safe pathway for people with the diagnosis. For example, there may be people with undiagnosed Lyme Disease, Fibromyalgia, Hypothyroidism, and other rare diseases such as Becets Disease, Periodic Paralysis or perhaps undetected and unrecognised adrenal insufficiency or thyroid issues, mould sensitivity or allergies, all incorporated under the ME/CFS umbrella term.
There is a confusion about how to manage and support people with ME, not everyone will receive home visits from GP’s and other paramedics, despite needing them. As a consequence, people with Severe ME lead isolated, neglected lives that continue in intense to profound suffering often for decades, without adequate support, recognition or input and people with Very Severe ME live a particularly unimaginable tortured existence.
There is hope that the new NICE guidelines will provide better guidance with a biomedical focus and recognition of safe, aware ways to provide care in the community to the 25% of people who are house and / or effectively bed bound.