M.E isn't N.I.C.E?

Ever since the N.I.C.E (National Institute for Health and Care  Excellence) debacle over delayed publishing of the new M.E guidelines I've struggled to write this article, in fact I've buried my head and done everything possible to avoid it and I didn't know why? Until now that is, and while what I'm about to say is  incredibly hard to write, I feel I owe it to myself and the M.E community and to all those still uneducated and unaware of the magnitude of abuse dished out to sufferers by the medical profession, media and wider community. For many sufferers the abuse also came from family members and  so called friends and in many cases still does.

I have suddenly realized, as an M.E sufferer of over three decades that I have become conditioned to the abuse, the government deemed it acceptable and therefore the rest of  society normalized it  and eventually I accepted it too. I'm not sure when exactly, there was no definitive moment, facing physical and mental abuse just became a  regular norm,  but It reminds me of the NSPCA advert where a small upset child is in a cot and the narrator says something about the child knowing that even when  he cries, nobody will come, so eventually he stops crying altogether?

With typical ignorance, one social media  follower asked why if it was that bad I and other M.E sufferers didn't report it?  My answer to that is/was, who to? Unless you were there, living through it, you would have no idea of the horrendously frightening epic widespread ignorance and the  accepted  abuse often dished out, as I stated earlier we are talking government, the medical profession, media  to name but a few. I'm one of the lucky ones, in the sense that I'm still alive to tell the tales, many aren't, another reason why I felt I had to write this. My own personal three decades of abuse by the very people trained to  help and save lives would fill a book and far too long for here, but  this isn't a  blast at the NHS, I know there are many good people, but  I cannot and will not deny the truth that many have lived either, and remember, this wasn't just the NHS it was society as a whole.

I, like many were  constantly bullied into believing we had a "serious mental illness" or was "going crazy"  and even though I knew it to be untrue, it was confusing and extremely scary trying to hold on to rationality and truth when so many powerful individuals and organizations are against you, but it was a standard diagnosis born out of ignorance, often given  to M.E sufferers without even being seen by any psychologist/psychiatrist. The media also jumped on the bandwagon and had a field day vilifying sufferers, as lazy, attention seekers, mental and dangerous activists. When all many were doing were fighting to be believed while trying to hang on to their sanity.

And so fast forward to 2021 and  the result of the eventually published N.I.C.E guidelines on M.E on 29th October :


While  it looks like  a step in the right direction, it still feels like biscuit crumbs, and at the end of the day it will depend on the action. M.E has been classified as a neurological disease by the World health organization since 1969 but that evidently has, over the decades made no difference whatsoever to belief or treatment or vilification and so until the  change becomes real and is acknowledged by those throughout all organizations and we  all start to see and feel that change I think many of us will remain in numb, emotionless, abuse accepted damaged mode? 

I, like many have been writing and campaigning for decades with very little change, and just like the little boy in the Ad that ran out of tears, I think regarding M.E I've become exhausted and run out of words, but hopefully not hope?  We still  have to hold on to hope, that from the N.I.C.E guidelines things WILL get better, if not for us then for those who come after us, and not just for M.E but for any other new illnesses that may come , lessons must be learnt so that no individual getting physically sick is dismissed , faced with physical and mental abuse, mistreated and neglected. "Hope" such a small word, but there within it lies life and death and so we have to hope this time actions WILL speak louder than words. 

                                           Until next time, stay blessed

                                                   Back Before Elvis    



  1. I can so relate! It does feel like everyone sees us hypochondriacs or lazy. Why would I get a Masters Degree in counseling and work years at building a practice while also working with foster care kids through Guardian ad Litem. Then one day, just throw it all away to be mostly bedridden and definitely homebound. Why would anyone do that? I got way more attention as a successful therapist!!

    1. Yes, how dreadful that an illness is seen as attention seeking but sadly it's what we've come to expect. I'm so sorry you've also had to go through this, it really is soul destroying when it happens. I remember a doctor sending me to A & E because they thought i might have a burst ulcer ( it was the severe muscular spasms that come with M.E although at that point I didn't know I had M.E) two consultants stood outside my cubicle moaning to each other that it was probably attention seeking and that that i'd probably just had an argument with my mother or something and was trying to get her back. I was mortified, I don't like attention, but if I did I could think of plenty better ways than be prodded and poked in a hospital. Unfortunately we just have to keep campaigning in the hope that one day soon there will be change?


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