Stonebird

We continue to pray for a biomedical breakthrough for ME. We pray for truth and integrity, that this constant watering down of the reality of ME as just a fatigue condition be ended. We pray for all people participating in  the struggle for truth and justice, for the right to be treated bioedmedically and the underlying disease understood. We pray  for clarity and understanding regarding the XMRV virus and any connection with ME. Furthermore we ask that the blood ban that comes into force on Nov 1st, in the UK be acknowledged for what it is and that the potential risk to the public be acknowledged . This is our Prayer for this evening along with the Breakthrough Prayer Lord, we hold all the hurt of the world before you we hold all those who suffer all those who are lost and lonely all the bereaved all the helpless all the hopeless all the sick all the dying all the confused all the fearful and all the desperate, we hold them all before you and ask for sign...

To those who have made Nov 1 Happen Thinking about the protest  on Nov 1; like a drowning man. To those who have made it happen, I salute you. To those who will be there you carry the hidden, the neglected, the suffering , those getting worse by the day;  you  move  boundaries,  you open up  a new front, you  make the invisible visible, you tear down walls , we cannot thank you enough. You save lives. To those who have designed the  posters , yours is  the gift of hope, you give us  a reason to carry on struggling here in the ocean of pain, for you speak  direct to the human spirit. To those  who cannot be there, your grief , your tears, your endless loss will flood , will rain down upon   the Department of Health ,  sparkling, dazzling  as a tsunami for yours is the most powerful ministry. To those, like me, who  don't even know what to do anymore to help , our silence is roaring. Everyone, ...

Leave your mouse ears at home Greg Crowhurst ( permission to repost ) "I have my reservations about the Nov 1 protest", someone said to me over the weekend . "It's the suggestion that people wear mouse ears that I am most concerned about ", she said. What suggestion ?? Sure enough ,right there on the Protest website :  http://www.notsonice4me.co.uk/  it states : " Wear mouse ears to help publicise XMRV. " As my friend points out , what on earth are the public going to make of a bunch of mouse-ear wearers,   claiming to have some kind of  mouse disease - and apparently demanding to be able to give blood ?? How  obvious will it be that the opposite is true , that the protest is not a demand to give blood but a stand against the cover-up of the real reason people with ME are banned from giving blood....actually, as I type these words,  I am struggling to state our case as simply as possible. XMRV...cover-up....Biomedical v Psychosocial ....

We come to tonight's Breakthrough Prayer circle meeting with more news of injustice for people with ME; the ludicrous reason given by the UK Blood Transfusion service that the reason for the ban on people with ME giving blood  is to protect them from the exertional effects of giving blood. No mention of the  risk of infection;  this is shocking from a UK Government body,  alongside the disclosure of the PACE and FINE Trial manuals, which show a blatant disregard for the biomedical truth of ME : http://tinyurl.com/3xj3uke http://tinyurl.com/37h35ca We need to hold these issues powerfully in the Heart of Love and believe in the power of prayer to change hearts and minds. We pray for people to have the strength to stand up and speak out about this gross injustice to people with ME and we pray that we will be effective and unite in one voice for the truth of this devastating neurological disease that is being completely suppressed. We pray for the success of ...

As part of our ongoing campaign to get rid of the shameful label that is "CFS" I have posted a short "tooltips" essay on the front of Stonebird : www.stonebird.co.uk I will carry on campaigning , in my own way, to get rid of CFS, no matter the practical issues. I was part of the Learning Difficulty/Mental Health , People First/Survivors Speak out movement back in the 80's; this coincided with the closure of the large  mental hospitals and asylums;  I witnessed , at first hand, how very meaningful and extraordinarily powerful  it is  for people to take their power back  - and how much names and labels mean. When I trained as Nurse, my qualification was "Registered Nurse for People who have a Mental Handicap." Today, not that many years later, "mental handicap" us  just so inappropriate, the correct term to use is " Learning Difficulties".  A while ago, those  same human beings were being classed as "Idiots", ...

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...

I've just been attacked by, yet again, over the Lightening Process . I regularly receive  letters , telling me that I need to think carefully about my stand on the LP, how I personally could be responsible for denying people with ME , including Linda, my wife,  the "opportunity to recover." Here is part of  my reply : Dear.....  I have never said the LP can't help some people; only that it is dangerous for people with genuine ME. The LP is the last thing people with ME need; I am shocked by the tone of your email; I I have received  many similar letters to yours;  all demonstrating the same worrying cult-like mentality. LP evangelists, like the psyches are doing enormous damage to the uphill struggle for biomedical recognition that people like myself wage every day, year after year.   You could be responsible, through your careless advocacy of the LP,  for people making themselves severely ill - or dying. My wife lives in extreme ...

A call  to pray for justice and truth We invite people to unite and pray with us , for there is great evil at work in the ME world. We especially keep in mind the terrible injustice done to Sarah Myhill, who was suspended from practice on Thursday. This is a total travesty of justice and the whole situation needs to be held in the power of prayer.We will be praying the Breakthrough Prayer tonight and ask you to pray additionally that the  wrong done to Sarah Myhill be put right :    Lord, Our need for Truth and Justice is absolute May your Power  and Wisdom be seen in the world and may all wrongs be put right. Amen. Lord, We ask you  to help us We ask you to pour Your healing Power Your Wisdom Your Truth Your Justice into the world and save us from our distress and desolation Amen as  more people join  in with us in prayer,so the message goes out and we are filled with strength and peace and new hope to combat all fear. ...

The awful big denial machine Greg Crowhurst 15th Oct 2010 (Permission to repost) The   BBC world service announcement yesterday knocked me backwards  : I  couldn't get out of the car for a minute or two  -  I had to let the news sink slowly in. Some 13 per cent of Germans it seems,  feel  “Germany needs to be ruled with a firm hand by a strong leader or  "Führer  ” – a term exclusively associated with Adolf Hitler.  Good grief : I had only just  written on this blog  http://carersfight.blogspot.com/2010/10/undeserving-poor.html  : "In Europe, in the 1930's , the strict austerity and economic measures, that were implemented  lead to complete chaos , the collapse of democracy and the rise of murderous dictatorships right across the continent. " You  reap what you  sow; ain't that so ? I was reading Michael Moore's account this morning , of  "economic terrorism" : the way companies are ...

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...

10/10/10 There are so many things to do in the emptiness of days and yet, what will be done is only the possible or maybe the easiest and generally it is none of these for paralysis pain and  no energy quiet all action and leave me free to be and that is all Linda Crowhurst 10/10/10

Ten Rules for an ME Activist Greg Crowhurst 9th October 2010 (permission to repost) "I have repeatedly said we should never compromise with falsehood and wickedness." Ghandi   " If you don't give up and you don't give in, you just might be okay. " Mike & the Mechanics 1. Do not  Compromise  .  Do not accept any service based upon the CDC or NICE Criteria - they have nothing to do with Myalgic Encephalomyelitis. 2. Do not Compromise . Strive always to see beneath the rhetoric,   whether it be the glossy words of an ME Organization that has sold out to the psychiatric lobby or any  attempt to bamboozle patients into accepting a therapy-led  Fatigue rather than a biomedical  ME service. 3. Do not Compromise . Never be afraid to speak your truth , no matter how awkward that may be to others or how angry it might make people feel. 4. Do not Compromise  .  Never use any term to describe the  illness ap...

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...

I turned the TV news off in disgust last night ; I felt patronized to my core. David Cameron ; after  he spoke about "fairness",  I could not bear to watch anymore The traditional yardstick of fairness has always been the "reasonable " person in the street. Overnight  it's suddenly become the hard working tax payer and what they "think" about supporting the "family next door who choose to lounge about on their sofa all day". Since they  came to power this UK Coalition has not slacked to characterize those on benefits as slackers, or   to instill in the public consciousness, as Mick Hall explains ( http://www.organizedrage.com/2009_08_01_archive.html ) ,  that the poor do not suffer their plight due to any defects within the system,   "but because they are indolent, lazy and criminally inclined, in other words we are heading back to the 19th Century philosophy of the undeserving poor." You just need to try surviving as a S...

"Am I young enough to believe in revolution; am I strong enough to get down on my knees and pray ?" Kris Kristofferson The day went nowhere much;  drowned  in tears. Tears of pain, of frustration , accepting that this is the most it is going to be, on a sunlit, beautiful day, where if Linda was well we would be walking our dog on the beach; ah, but she is never, never well and getting worse.   Us hugging in the middle of the afternoon ,  in that desperate place   , knowing there's no one to help, to advise , to offer any hope of a way out of this gruesome suffering. Come just before  9.00 pm and Linda lights a candle; would I pray the prayer ? I couldn't; I can't pray, I am so stressed-out.  But I could press the button and play the video. Linda on both sides of me and I heard these words : " By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair ."...