If it still remains hard for the general medical profession to agree on what ME/CFS is, then how are we supposed to comprehend it when we have it ourselves. Furthermore, if we are the one experiencing the horrid, life altering experience, then how are those around us to understand our experience, or find ways to help.
This is why, in my opinion, it makes having this illness / condition / experience, or however you wish to frame it, a real tough situation to tackle, because there is just so much ambiguity, and even, in some cases, denial and judgement about the seriousness and reality of the actual bodily experience. This can and often does, lead to worsening cases of it when diagnosis is not swift, as in my case, and when information and support is not available at the outset. This lack of firm recognition can lead to further denial of the bodily experience, a tendency to, “battle on” and therefore, a deepening of the severity of ME/CFS and Fibromyalgia.
Action for M.E., a leading charity suggests: “Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Defined by the World Health Organisation as neurological, M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
Many people with M.E. experience persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is characterised by a range of additional symptoms.”