However, caution is urged with these figures as the diagnosis of M.E. is not always made using the best clinical evidence available, i.e. the International Consensus Criteria -M.E.-2011. The criteria for a diagnosis of Chronic Fatigue Syndrome (CFS) for example is less strict and there are concerns that the numbers of true M.E. patients may be over-estimated as a result.
Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal symptom of M.E. According to the International Consensus Criteria (2011) on M.E. 'this cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.' Essentially any action whether physical, cognitive, emotional, social etc drains available energy and if the ability to replace this energy is impaired this can lead to a worsening of all symptoms which can last for days, weeks or months – even causing permanent, non-recoverable systemic damage.
The danger is that the long list of symptoms above can still, unintentionally, underplay their severity and seriousness, the totally disabling nature and the individual intensity of each one, which together add up to a physical nightmare of indescribable proportion for a person with ME.
The daily reality of people with Severe ME is much worse than not having the 'basic energy' to engage in daily tasks, while that of people with Very Severe/Profound ME is so horrendous, there just aren't words to describe how awful it is - pain, paralysis, cognitive issues, terrible hypersensitivities, profound system dysfunction.
M.E. is not taught in our medical schools and many doctors are not aware of its existence or the fact that it is a distinct illness listed under neurological conditions in the WHO classifications completely separate from the entity CFS.
The HSE website has never been updated despite the HSE now having relevant appropriate information on M.E. The website remains blank while the HSE wait for NICE Guidelines on M.E. to be updated. These guidelines will not be ready until late 2021.
PENE Post Exertional Neuroimmune Exhaustion