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.
The UK National Institute for Health and Care Excellence (NICE) has on 29th October 2021, published the new guideline 2021 (NG206) for diagnosis and management of Myalgic Encephalomyelitis (ME.) This replaces the dangerously flawed guideline from 2007.
The new NICE Guideline (NG206) for Myalgic Encephalomyelitis (ME) WHO ICD G93.3 is a small but welcome step.
The new guideline published on October 29th 2021 is only a small attempt to undo the damage done by inaction, ignorance, gaslighting and negligence since 2007. While the new guideline published is very far from ideal, and there is still a long way to go to provide appropriate guidance and policy development in Ireland, the removal of the most harmful treatment recommendations (GET & CBT) is a significant milestone on the road to proper recognition and treatment for ME.
It remains to be seen how implementation of the new guideline will work in Ireland as well as the UK and the rest of the world.
Even well before the release of the new guidance, worrying evidence emerged about how GET, now removed, was already being repurposed by certain quarters (psych) in treating patients at clinics in the UK and the new label that is being used is Graded Activity Management (GAM).
Even more worrying is the response by some stakeholders, i.e. the Royal Colleges, who, immediately following the publication of the new NICE Guidelines, indicated that they do not agree with the new guideline and will continue to promote their own brand of exercise and cbt treatments.
PENE Post Exertional Neuroimmune Exhaustion