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M.E? All Talk, No Action?

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Originally I was looking to write a piece for M.E awareness month in  May, in fact I started writing it three times and then deleted it (no mean feat when your primary symptom is exhaustion?) but I just kept getting frustrated by it all, and as I wrote I kept thinking what's the point? 31 yrs in,  still campaigning, still ranting, still writing and still have M.E? The injustice to M.E sufferers continues, I believe those with Long Covid are being treated in a similar fashion, and the  DWP have already been told not to accept Long Covid as a disability?  Maybe they need to refresh their brain cells as to what disability actually means?   "A physical or mental condition that limits a persons movements, senses or activities" you only have to type into a search engine "Explain the word  disability" for a whole heap of explanations to pop up and yet the DWP have a ( secret not so secret) list of illness they've been told  not to class as a disability? Everything

Social Media Madness?

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                                 Social media (Do we have to?) some of you may have seen a recent post about me contemplating or rather constipating over deleting all my social media accounts? This was posted in a moment of absolute loathing at Facebooks decision to change how we run our pages, which I wasn't aware of until I went to post the normal way and couldn't. It had come without warning, so thinking it was a browser error? Windows update error? Whatever error? I used time I'll never get back trying to sort it, only I couldn't of course because some pre-pubescent genius at Facebook thought it would be a great idea to change everything and make navigation and use like a challenge off the crystal maze. But  there was no prize, just a blood boiling frustration that was in danger of seeing my head explode (Not much to see there then?)       I very much have a hate/love relationship with social media  the problem is I'm an over thinker who just happens to giv

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

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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 j

Minister of Dickery ?

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Some of you may remember that back in June, I went on a writing spree.?.....yes another one, I've lost count of the letters and emails written over the past thirty years in the very pin head size of a chance that someone, somewhere,  would see sense and  stop the abuse and manslaughter of  the sick and disabled. I also raised a number of specific concerns, the treatment of Sick and disabled under the present Government  via D.W.P, increase in Mental health and pushing people over the edge under the present  system which is ultra disablist despite their spiel.  I also criticized the loaded questions both on paper and also at assessment stage that are impossible to answer honestly and fairly  and yet people are forced to do so ?  As for  Myalgicencephalomyelitis (M.E)  I stated that  while M.E has been recognized  as a complex chronic disabling illness with multi symptoms & listed by the World health organisation as a neurological disease since 1969 at this stage it cannot be med

It ain't Football?

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I have to say I'm not really surprised  by the latest Football debacle  and news of this European  Super League, the club owners have got away with far too much for far too long so this has  been an opportunity waiting to happen.  I fell in love with football as a young whippersnapper before girls went to games let alone played, in junior school there was a boy I fancied that was a Celtic fan but he wasn't ready to be interested in girls, in fact he'd pull that face that little boys pull whenever girls are mentioned, the one that says "I'd rather eat worms than talk to you"  I'd watch  as he and the rest of the boys gathered to talk football on a Monday morning before class began and so I hatched a plan to follow Celtic too in the hope he'd like me, sadly it didn't work but h aving spent Saturday afternoons watching Football on TV with my Dad & Grandad  I  went on to follow my home team Watford (Graham Taylor will always be the best Manager Wat

The M.E Name Blame Game?

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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 est

It's Not A Round Robin?

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As those who follow will know, I always publish an end of year article  ? Although I refuse to call it a round Robin, because firstly? It's not, and secondly I've never understood why anyone would want to know that back in March Tarquin gained a distinction in his nose piccolo exam? Or that more recently Annabella was photographed on social media with a pimple and has had to go into trauma counselling to get over it? So now we're clear its not a round Robin, let me  kick this off with a Merry Christmas....although let's face it, it's more just Christmas minus the Merry? I'm a great believer that out of the most terrible things that happen in life, there are lessons to be learnt ? (Like always purchase an extra pack of toilet rolls when shopping just in case? ) The problem is, from my own personal view of life the past year and a half it has been overwhelmingly full of non stop lessons on loss and betrayal, people and places not being what I thought they were, tr