Stonebird

A Journey through Advent Every day of December,  until Christmas , Stonebird will be posting an Advent Reflection on the reality of living with Very Severe ME. The reflections can be found here : http://www.stonebird.co.uk/advent.html

She is still badly affected by the BANG, BANG, BANG, THUD, of laying paving stones, last week, next door; they may as well have come into her bedroom and laid into her with fists and boots. I mean badly affected; in a monstrous  place, her body quivering with multiple symptoms; the agony in each breath,  that I cannot reach. The abomination that is "sound-sensitivity" in Severe ME  makes me raise my head and scream inside . Okay,  in an hour or so, builders will start work, next door, digging up a concrete path, a few yards away from Linda's bed, with a pneumatic drill. They might  as well be popping in  to give her a good bashing about the head. She's too ill - did I mention that - to get up and get out , she's too ill to be here , without severe consequences. Long after the concrete has dried, her body will still be shaking from this and the pain will be howling .  I wish we still had our dog here , to help us . For there'...

There's web-designers who cut & paste and there's those who hand-code everything. I take great pride in the latter; in a  way there is something almost medieval about HTML ; it  gives me great pleasure, I don't know why. It is with the quiet glow of the craftsman at work,   that I upload a correctly-coded, working  page to Stonebird. Not so last night. We have a 17 year old book in which every New Year's Eve, we write down our reflections on the past year; we began it when we first got married. My contribution last night roared with fighting talk; for I was wild, having just coded and  posted Kevin Short's lengthy Zombie Science and the Non-Random UK 'CFS/ME' PACE Trial . It's on the right hand side of www.stonebird.co.uk ,  under"Essential Reading". I mean : take the way that these lies are portrayed as a fact : GET manual Page 23 - "The more severely disabled group of CFS/ME patients were excluded from previous studie...

Stonebird : a response to the Comprehensive Spending Review (CSR) Greg & Linda Crowhurst 21 October 2010 (permission to repost) The back to work ethic that denies the reality of sickness, as a valid state and the covert message that if  you are sick your are scrounging., started by Labour , is carried to unprecedented new levels of denial,  by the CSR. What is so shocking about the spending review is the almost complete lack of reporting , in the mainstream  media,  of  the impact of it , upon the sick and disabled. The elderly are seen as a source of votes, but the disabled are rarely represented  as a valid part of society.  The latest move to undermine the sick, by  depriving  them of ESA if deemed "fit for work" ,  is particularly concerning for people with ME who are so often by negated by the system. The psychiatric lobby , far too entrenched in government and the media,   is virtually assur...

Waiting on a phoenix Greg Crowhurst (permission to repost) Four fifteen in the morning and I'm thinking; what will it take for a phoenix to reach us here ?   I hold Linda, my wife's,   hand as  Florencio Avalos emerges from the escape capsule ; his young son bursting into tears. Children have been denied to us, by ME. Linda, herself ,  has been trapped  underground now since 1993.   The two of us are buried deep . 2362 feet beneath the surface : that's a good an estimate as any. Our Doctor called yesterday and admitted  that her life has not one of the ordinary  pleasures that, well, make life even bearable. Food, drink, socializing, music, reading, cinema, theater, walking... joining me on my morning bike ride.  Both of us have a classy  Dawes Galaxy : serious bikes. One time, before she got ill for 17 years,  Linda,  head held high,  flew off down a hill at such speed I coul...

It  's  a format that is screened all over the word. A TV show where a group of incredibly ambitious  20 /30 somethings try to convince a wealthy business man to take them on, as an "apprentice"  for a 6 figure salary. I wonder what the show might be like from a Severe  ME Carer perspective : " I am unique ." : I will work for nothing, 24 hours a day, seven days a week. " I am a go-getter ." : I will take on the full force of the Global Medical Insurance Industry that is doing all it can to deny you recognition and treatment . " I make things happen." : I will spend a whole day, helping you get from bed to chair. "I am not all talk... I can manage a team of people, total strangers even, because I am feisty and have attitude." : I will find a way to work with other stressed-out and incredibly ill people with ME , and other Carers, in order to make  things happen for you, like a doctor's visit. "Caring  is the new rock...

Stonebird : the lived exerience of Severe ME BACME ?? Who ?? Greg Crowhurst (permission to repost) BACME : the " British Association for CFS/ME" ...who ?? On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME" "http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf My wife's reaction was immediate and fierce . So this morning I try and find out about BACME. Not easy for there's no apparent website. In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now...

  Today I feel My Powerlessness I shake with powerlessness and rage . All of a sudden , here in the UK it’s those on Disabled Living Allowance who are responsible for there nor being enough police men on the beat; the Prime Minister announced in Parliament yesterday. As Chris Ford argues so powerfully  , scapegoating of the  most vulnerable is entrenched in the New Right agenda : “ the New Right and some of their supporters continue to cling onto some notions of eugenics in order to scapegoat unpopular minority groups who are viewed on the right as the new 'undeserving' poor. These include indigenous groups ( for example, Maori and Aboriginal peoples), ethnic minorities (who mostly hail from immigrant backgrounds) and single parents, amongst others. With the emergence of the New Right and their neoclassical agenda of shrinking the size of the state, there has been a need to scapegoat these and ot...

The late 1980’s and early 1990’s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers. Cort Johnson , Phoenix Rising http://aboutmecfs.org/Int/IntHennesseyCFS.aspx "In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition.  " Maryann Spurgin, Ph.D., Reviews the 2003 ME/CFS Clinical Case Definition http://www.cfids-cab.org/MESA/cccd-1.html     You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart ha...

Went to a senior - level meeting yesterday, at the local PCT.  After 17 years of living on carer benefit, my clothes feel a bit worn, my hair not neatly trimmed ,  my sandals out of place. Being swished to the top floor, past  PA's, PC's , curved desks, busy open plan partitions,  was to glide through  the world I used to know; now it's all the kitchen, the bedroom , toilet and garden, where we sit in isolation,  for years on end. My voice is an effort.  If asked I would have said I feel tired and angry.  I make my tiny contribution, speaking up, I hope , for the severely affected. Making every word count. Yes; there's an impact. It's no game. There's no ego. This is me ,  fighting for my love and our life. Out of place here in this expensive 21st century HQ. A bit of a shabby carer .