The M.E Name Blame Game?

Before I start, let me just say that I can only write from my own personal experience as an M.E Sufferer of 30yrs, while hopefully many of you will relate? Everyone's experience and levels of illness and views on the subject will be different.........Right, now grab a biscuit and I'll begin.....

It seems whenever M.E/CFS appears anywhere there's outrage of varying degrees, and yes I still prefer to use a dot in-between the M & E as was originally often used

...BUT, originally before that, even though the word Myalgic encephalomyelitis (M.E)  existed, some believe as far back as 20's/ 30's the name  the media and medical profession referred to it as in the 80's before the word M.E was widely known was "Yuppie Flu" ... was I hacked off? Not really, I was confused more than anything, It was always reported  as an illness that posh people with high flying jobs in the city were going down with, I came from a broken home, lived on a council estate and worked in a newsagents ? So when anyone spoke to me about my "Yuppie Flu" it felt uncomfortable, but nowhere as near  as uncomfortable as the illness itself with it's barrage of symptoms invading my body en-masse .

Of course I believe as many do M.E & CFS (Chronic Fatigue Syndrome) are two entirely different conditions that have over the decades wrongly been defined as the same illness. While in the UK "Yuppie Flu" was later referred to as M.E, the CFS term  coined in the USA  was then wrongly adopted over here  and started being used instead of  M.E or alongside,  and while many of us argued and battled over many years to get that changed at the time, it's sadly remained. Over the years there has been a constant  deluge of wrong info on M.E going out into the world & so many sufferers wronged that we have to weigh up what takes priority, that's not to say the M.E/CFS name usage doesn't matter, it does, but I believe there are more pressing things in which our energy is needed?

Thanks to outdated data, zilch Government help, an ignorant medical & media profession and no support apart from M.E Charities,  most of the battling to raise awareness, funding and bringing change is fought by those living with the condition themselves and Carers which means when you have to fraction in getting your clothes on in the morning and making it to the bathroom for a Wee it really does come down to having to choose our M.E battles. There are many victims in this M.E/CFS debacle and I don't think it serves any positive purpose at this stage as an M.E community to alienate a group of people (CFS) that through no fault of their own have been dumped under a wrong Umbrella?

And to be honest it goes way beyond  M.E/CFS,  that term is actually just a dumping ground for anything, everything and everyone that those in the medical profession can't diagnose or are too lazy to diagnose correctly, I'm sure it will be no surprise to know it's political? I have it on good authority from consultants themselves speaking off record that it's not good  statistically  to have floating patients in the system, GP surgeries and Hospitals are run as businesses with an eye on keeping costs down and  targets expected to be met, for that reason anyone presenting with symptoms that tests can't show up are often put under the M.E umbrella because it keeps them moving through the system.

It was evident when I was invited onto one of the first pilot M.E Clinics back in the day that many of the people there  did not have M.E, after chatting with  them over the weeks and hearing their stories it became clear that the majority were suffering from acute reactive depression due to extreme stressful life circumstances and nothing to do with M.E  there are too many cases to detail here but there were a couple of women who clearly shouldn't have been in the group and weren't getting the psychological one to one help they evidently wanted and needed but were just too poorly to say, as ludicrous as it sounds seeing as I'm not a doctor, just well knowledged  on mental health and especially depressive illness I actually spoke to  those leading the clinic and they agreed to chat to the women to see if that was the case, turned out it was, and the ladies were removed from the group and given the correct treatment needed, but there were others that were depressed due to being lonely which was impacting on what quite clearly were things like  arthritis and anxiety disorders, there were no symptoms of M.E, I was quite appalled by numerous cases of  lazy diagnosis.

I believe the only way this will eventually get sorted is when there is a definitive physical diagnostic test and that and only that is when it will separate the M.E from the CFS and those with other illness dumped under the umbrella and  that's why charities like Invest In ME Research and many individuals  put our time focus and energy into trying to achieve that....hopefully one day soon? 

But as far as I'm concerned for all the reasons I've spoken about above they could call it Elephants Armpit in the short term if it means we can get continued biomedical research that will lead to that definitive test and eventual cure. 

Of course it sucks having to put up with an incorrect name in the meantime but then there's also been many a debate that Myalgic Encephalomylitis is wrong as it's not proven there's brain inflammation and instead the illness stems from the gut ?  One thing I'm sure we can all agree on is the frustration at the likes of  Wessley, Crawley and Garner given platforms to spout their ignorant and false information without consequences and then crying victim when we dare to defend ourselves?  We all have opinions, and there's no doubting there's many things that are wrong including merging M.E/CFS as one, but for now surely it's better that we stick together, the M.E patients and the CFS patients and other until a later date, because together we're stronger in fighting and righting all the other wrongs? 

Finally on a separate note I got another text today,  My GP's surgery has contacted me more times in the past six months about the Covid Vaccine than they NEVER have in the thirty years I've had M.E after getting Flu, and they wander why we're an angry bunch? But I guess that's ANOTHER  battle for another day? 😁

                                                  Til Next Time, Stay Blessed

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