Stonebird

Starts off in agony, stays in agony, is dealt with in agony...we get through, but the pain, the suffering is immense. And in the early hours, my wife is unable to sleep because of the raging symptoms. I reach out, from the depths of sleep. And here it is Sunday morning.....another day in our  life.

Five years ago I  published an article on Severe  ME in the Nursing Standard. I think that one got under the radar, because  it's taken me five years to get another nursing article on ME published. Typically I submit an article , ALWAYS get accepted, then go  through the Peer review process , over and over again, arguing about incredible  things like the "Mars bar theory of ME : work, rest and play" for months ,   then the article is pulled with no  good reason ever being  given. All I know is that I had to resign  from the Royal College of Nursing Special Interest group on ME, because I could not bear another minute of their overwhelmingly pro-psychiatric stance on ME . The nursing profession here in the UK, to my shame as a nurse, seems to be dominated , tied -up tight as a drum, by the psyches. So last night I opened a bottle of fizz to celebrate getting published this week in the British Journal of Nursing, all credit to this suprem...

Isn't it just staggering how official  UK Policy  towards ME  fails : To accept that ME is classified by the World Health Organisation (ICD10: G93.3) as a neurological disease. To clarify that Graded Exercise Therapy is harmful/unhelpful to a high proportion of ME sufferers. To clarify that ME is not caused by abnormal illness beliefs. To clarify that ME cannot be diagnosed without physical (neurological) signs. To clarify that ME, the neurological condition, differs from the mental illness Chronic Fatigue in:     The epidemic characteristics     The known incubation period     The acute onset     The associated organ pathology, particularly cardiac.     Infrequent deaths with pathological central nervous system (CNS) changes.     Neurological signs in the acute and sometimes chronic phases.     The specific involvement of the autonomic ner...

It's those who get in touch and say look, if only your wife would drop her resistance to psychiatric therapy, or if only you would open your mind to the Lightening Process, don't you know you are keeping her unwell by your hostility , that Linda would get well : it's those who  best express the travesty of Chronic Fatigue . My wife is so painfully ill on every conceivable level, her agony is so overwhelming, yet the likes of her have been absolutely ignored by the medical profession , while those who dare to write the sort of emails I receive, those who are so quick to condemn what they could not possibly understand, for they do not have ME, these are the ones being helped . These are the ones millions of pounds are being spent on (in the name of ME): and even then the evidence that CBT and GET actually works, even on them ,  is overwhelmingly inconclusive. Meantime, I ignore them. It's only when one of their condemning emails  slips through and Linda reads it; then...

The Stonebird (informal) Definition of   Severe ME : permission to repost Severe ME is a hellish experience that you live and endure without treatment, cure or respect . Severe ME is not knowing how to cope from minute to minute, moment to moment. Severe ME is being tormented by people doing ordinary things. Severe ME is being inhibited by paralysis. Severe ME is being  totally ill, all the time. Severe ME is being unable to  read. Severe ME is being  unable to hold anything. Severe ME is falling over regularly. Severe ME is your mind not working. Severe ME is being unable to speak on the phone. Severe ME is finding that going to bed makes you  feel even more ill. Severe ME is discovering that there is no  possibility of rest, ever. Severe ME is being unable to see anybody because they make you more ill, because  you are  so hypersensitive. Severe ME is not  knowing  what to eat that won't...

It's a Crying Shame My wife, bursting into tears, because she's had to turn down an invitation to attend her God daughter's wedding. How she would have loved to have been there, sipping champagne, being first, as she always was, on the dancefloor. My wife's ongoing pain because she couldn't be at her Dad's funeral. The fact that she is completely unable to journey to see her Mum. The weekend spent in total agony and not knowing what to do about it, the hours and hours spent doing nothing and even that is painful. Yet only last Thursday I attended a top level, Director level meeting. The Chap there does not " believe " in ME. Much prefers the term CFS. Don't you know. And yesterday CoCure is full of waste-of-money  CFS papers by the psychiatrists, the same made-up CFS that bears no relationship whatsoever to how my wife has spent her weekend. Me, I rage at this  injustice and wonder how I am going to get through today.

No More ! to CFS... Apparently I, and others , I am certainly not alone, see for example Magical Medicine , have been guilty of Goodwins Law which states that as an internet discussion grows longer, the greater is the chance of a comparison to the atrocities committed by the Nazi Party being made. The trouble is that Goodwins law has come to mean that once you mention the Nazis, you have lost your argument somehow. Very hard to post anything for example on CoCure that mentions the Nazi Party. Extraordinary , given how their deathmaking policy towards the disabled, so closely echoes the psychiatric lobby's stance towards people with ME - the same scathing language that is used to describe them - and even the causing of death; ah but there I go again. After all these years of trying to fight back , I would like to propose my own law : the Stonebird states that as a discussion - on the internet or in life, grows longer there comes a point when you say "F..off!", p...

So okay, while I was holding Linda all day yesterday, until she collapsed in almost total despair and agony yesterday evening and my heart roared in helplessness, the CDC chose to publish not the positive XMRV study but the negative one. The one that reckons the search for "XMRV in CFS" is over . Oh it does, does it ? Well hooray : wouldn't that suit the Insurance Industry right down to the ground ?? Now here's the thing : NO WONDER THE CDC STUDY WAS NEGATIVE. It did't study genuine ME patients : 1. Half of the patient cohert had not even consulted a physician !! 2. Three quarters of them had a "gradual onset" - Linda's was literally overnight, or so it seemed 17 years ago. As Cort Johnson brilliantly declares on Phoenix Rising this was, to say the least , the "CFS -Lite" Cohort ; actually I'd like to suggest the "ME-free" Cohort. You see, the WPI study went to a lot of trouble to correctly select...

Hit the BANKERS not ME ! What kind of a society are we becoming ? Right across Europe it's the sick, the poor, the vulnerable, who are being made to pay for the sins of the bankers. Again I ask , where's the outraged voice of ME ?? Greg Crowhurst, July 1 2010 Permission to repost "Then they came for the sick and disabled ....... " Twisted Witch Just a little while ago , before the election :" Steve Webb, Liberal Democrat work and pensions spokesman, commented in relation to the Government's Welfare to Work programme : " The rhetoric sounds great – 'We're going to focus on what you can do and not what you can't do' – but we all know that what that really means in practice is getting tougher and setting the bar higher." He adds: "What worries me is the idea of a future Tory government going further, faster down this track and already budgeting for millions of savings, saying there's obviously people who don't need th...