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Breakthrough Prayer Circle Saturday Oct 30 9pm BST


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 signs and wonders to fill their lives
with new hope
Amen.

To those who have made Nov 1 happen....

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, shout out on Nov 1 and  it will be as ten thousand voices.

Leave your mouse ears at home

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 ...NICE....Blood Transfusion...Can anyone express in a single  short sentence exactly what it is we are protesting about ??

It's a big problem .

 ME is  a hugely misunderstood and generally reviled disease .  How many people walking by on Nov 1st by are going to have the foggiest notion  of Ramsay, the Canadian definition, the WHO classification of ME as a serious neurological disease ??

To all intents and purposes the ban on people giving blood , because it might lead to a relapse, doesn't sound too much like a Stalinist injunction , one that reeks of denial and ongoing oppression. Does it ?

It's complicated.

 I read  Cort Jonhson's superb  coverage of XMRV, over the weekend.  Cort's review just happens to  mention   that  :"XMRV is not found in mice at all; it is related to mouse murine retroviruses but is found, as far as we know, only in humans - another startling finding."

http://www.forums.aboutmecfs.org/content.php?248-XMRV-at-in-the-balance-A-Tale-of-Two-Conferences-CFS

Oh ....did you know that ?

All that aside, there is a deeper issue here and it's to do with   imagery . It has to be faced ; those who are most ill with ME are going to be unable to get to the protest. Those who do manage to get along, well, ME is exquisitely cruel  in that you can go through so much , yet look absolutely fine.

The psyches have done a through job of convincing the public  that people with ME , almost choose to be  just tired all the time. To what extent, though,  does  the other suggestion on the website to "wear a dressing gown" buy into  that ?

Will it help or hinder  our cause , to dress up as "a vampire" - as the website also  exhorts ?


ME is not being taken seriously , right across the board. The psyche's message is certainly one of deviancy - doctors are "ashamed of" of people with ME; those "heart-sink" patients, who don't even warrant physical investigation,  who simply need to pull themselves together and stop wasting precious resources.


Wolfensberger, whose writing has had an enormous influence upon me, for many years,  makes the point that the last thing people who are seen as deviant need to do,  is to buy into any type of negative imagery.(http://www.essaychief.com/free_essays.php?essay=727155&title=To-What-Extent-Does-Normalisation-Apply-In-Respect-Of-People-With-Dementia


My friend so wisely concluded;  "I fear Nov 1st could horribly backfire on us. "

I agree. Those mouse ears, dressing gowns or vampire suits - plus  a confusing , easily  misunderstood message,  could so  easily do the psyches job for them ; by convincing  the public that people with ME  are just  a bunch of nut cases, with a "Micky Mouse" disease....

A clear message  - and a dignified stand. Surely that is all that is required ?

Breakthrough Prayer 9pm BST Saturday 23 October

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 the demonstation in London on Nov 1st outside the Dept of Health :

http://www.notsonice4me.co.uk/


http://www.meassociation.org.uk/?p=2580 


We pray especially tonight  :


I do not know what to do
   Lord show me
I do not have any answers
   Lord speak to me
I do not see the way clearly
    Lord be my light
I do not know the path to take
   Lord be my guide.



What the Bleep is "ME/CFS"

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", "Imbeciles" , "Morons" or "Cretin"( from the French for Christian : Christ-like),  terms that were  slowly replaced by the much more "enlightened  "Retarded" in the 1960s.

"Spastic" is no longer  an appropriate label for someone who has Cerebal Palsy. Still the Spastic Society was going strong until recently and who calls someone with Down Syndrome a "Mongol" anymore ?

 "CFS",  like so many labels before it, has now become the most  derogatory term; it is high time people with ME take  their power back and get rid of it.

The medical profession have lrealy let people down by their  use of the term CFS , by  not speaking up loudly enough - by caling it a "Syndrome" rather than a disease.

Much better if everyone called it Myalgic Encephalomyelitis - its proper, true name.

I am spurred on   through my  involvement  locally, with the NHS.  I have been  profoundly shocked  at the  across the board disdain  of people  labelled as having "CFS" :  rarely is the term "ME" used  and the talk, at the highest levels here is  about Wessely and  the "gold standard" that are the Oxford Criteria  

What about all those CFS papers that have been published ?? Those authors  frankly have let us down, using the wrong name.

What about all those papers on Mental Handicap ? What about my own qualification ? What about all that published research on the "feeble minded" ?

You move on; that's all. In the history of human services, that is the way progress happens.  You make a stand for the truth and  move on from a clearer place.


Stonebird : a response to the Comprehensive Spending Review (CSR)

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 assured  under this CSR,  to have even more  influence in the continuing misinterpretation of the needs and capabilities of people with ME.

 With the psychiatric lobby going from strength to strength ,with  no unity of voice within the ME community and with no  consistent validation of what ME is , even within the charities, it  is a  frightening time indeed to be long-term sick and disabled with ME.

The patient voice, those  charities that  survive this spending review   have to start by  speaking  up for the right things; they must not sell people with ME down the river anymore , by going along with the vested interests that have done so much harm and which have now been given unparalleled free reign under this Coalition.

The ME community chose to rubbish the Gibson Report, rather than back its radical  call for an investigation into the vested interests.  Oh, if only that had happened back in 2006....now we reap the whirlwind.

There is no consistency in the ME community. You have those who love the clinics, who want CBT and Pacing, people who support and aggressively advocate for  the Lightening Process -  people who most likely do not have ME anyway. 

All the time the "CFS "label is rolled out,   instead of Myalgic Encephalomyelitis, all the time that "Fatigue" is misrepresented as the primary symptom of ME, all the time a biomedical service is not a reality, there is little hope for justice and truth for the genuine sufferers of this terrifying  neurological disease. 

 The suspension, last week,  of Sarah Myhill  , is just  a taste of the wickedness that , after yesterday's spending review, now  reigns  supreme .

The only hope is the possible  emergence  out of all this, of  a much more coherent, assertive and radical patient voice .

Attack over the Lightening Process

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 pain, paralysis, unable to eat, talk much, walk... cope with noise, light, sound.

She is also a fully qualified counsellor , social worker and teacher. She is profoundly spiritual,   self-aware, without a shred of depression or negative thinking.

So you think she could be cured if only she undergoes a 3 day intensive thought- changing programme  , bouncing around on a mat ?

So you suggest I am keeping her ill by my negativity towards the LP ?

So you suggest that ME is all to do with thinking the wrong thoughts ?

So you think Linda could do this, do you ?

You think she could travel to a venue and take part in the LP do you ?

You think the LP heals brain damage, pesticide damage, mitochrondrial damage, restores Natural Killer cell function, fixes the genetic defects, restores the immune and central nervous system defects, deals with the awful gastro/intestinal abnormalities,... and is safe for a heart on the point of cardiac collapse ?

You think she is to be blamed somehow for not trying , do you ?

You think I am personally responsible for blocking people including Linda from getting well, do you ?


What do you think you are doing ?





Breakthrough Prayer : 9pm BST ,Saturday Oct 16 2010

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.

Lord ,
Guide us in the way of Mercy
may Your presence
always lead us
and fill us 
with Your Holy Peace
not of the world.
Amen

Let us not be downtrodden, fearful or afraid. We place our trust in God who will never abandon us and join in with prayer with you this evening.

The awful big Denial Machine

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 "F├╝hrer ” – 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 destroying lives .  He says : "There is a rage building throughout the country and, if you're like me, you're scared shitless."(Downsize This ! Pan Books 2002, p. 15). 


Too right ! It is directly because of the insurance lobby’s stranglehold on the UK Government, on Democrat and Republican administrations and on Congress, that  my poor tormented wife  faces another day today of unrelenting agony, without anyone helping her. 


Rage : I tell you......you have no idea.


Martin Weiss has coined the term "Denial Machine" to describe the Medical Insurance Company's  particular skill in destroying lives.


From our perspective down here, it is  the ongoing denial of ME that concerns us most,  that so affects every moment of our life. 


A campaign  of denial,  that  has been conducted so mercilessly, so skilfully, with such exquisite expertise, that people with ME are not only denied any hope of treatment or a cure, they are almost certain to be made worse or killed by the official "help" on offer and their disease , renamed "CFS", a nonsense term,   is treated with universal  disdain , disgust even,  right across the medical board.


Dr Sarah Myhill is  the latest  high profile  casualty. Do anything for people with ME and you will be ruined Doctor .


That is the message.


But here's the thing that would most baffle any  visitor from Mars : patients themselves  describing  their disease as a syndrome called CFS !!


Doctors and Consultants actually  publishing scholarly papers on "CFS" !!


 Researchers  and Services using, taking seriously the fairy-tale CDC  Criteria !!


Why ?? the alien would wonder ;  scratching her  head ,  looking around n bewilderment, as a dazed-looking, disheveled  carer steps out of his car, shaking his head . 

























Waiting on a phoenix

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 could not catch her up. Well  she would, she used to cycle 18 miles a day to work. She's got the build of an athlete. This woman whose days  consist  in surviving on cold salad and moving from bed to chair, in a miasma of exquisite pain and paralysis. ...

...whose spider-infested bike  lies long  buried, down the shed, under years of flowerpots, discarded lawnmowers and cardboard boxes....2362 feet beneath the wicked, deliberately placed  rock pile  that is "CFS".

 Each time someone uses the word "CFS" - or "forward slash CFS" , to describe this disease, another rock is added to the hardening , growing pile.

Down, down deep in the darkness here , though,   lies "ME", like that three thousand year old seed that was found in a portion of a  tree,  in an ancient Egyptian tomb, back in the nineteenth century, Ramsay -defined ME, with all its promise of serious research lies dormant . We were doing so well back in the day , until the CDC came along .

That seed grew though , even after three thousand years.

We need people to know we are here. Peggy Munson's blog : http://peggymunson.blogspot.com/
on what we can learn from the AIDS community, is the best thing I've read yet on how to make ourselves heard.

Meanwhile, waiting here on a phoenix, with  as much fierce courage as those miners, we can at least begin to dig ourselves,  if not out, at least no deeper.

10/10/10

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

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 apart from the correct one, which is Myalgic Encephalomyelitis (ME). Abandon the  forward slash CFS (/CFS) ; if you have to refer to "CFS" then clearly state the truth :" ME , wrongly  called 'CFS'."

5. Do not Compromise . Never accept inferior , dismissive or inadequate treatment for  this World Health Organization classified  neurological disease.   Use the formal complaint structures and be prepared to go to the very top to obtain the biomedical recognition of ME  that people are entitled to.

6. Do not Compromise. Do not accept the psychiatric propaganda that ME is about inappropriate sickness beliefs. Be prepared to stand up to everyone on this : your family, friends, next door neighbours; they do not understand , they probably never will ever understand what the person with ME  suffers.

7. Do not Compromise . Never  accept slick arguments based  upon a relative truth.  This argument may sound plausible  relative to itself,  but it will not fit into the absolute truth of ME. Anyone can make a false argument based upon a false premise, for example that fatigue is the main symptom of ME.

8. Do not Compromise.  People's lives are at stake and people are neglected,people are  rubbished, people are dying of this disease; never forget that one individual standing up can make a huge difference in the world.

9. Do not Compromise. Never give up hope that change is coming, that there will be a biomedical breakthrough and that the more you speak up the sooner it will come.

10. Do not Compromise. Blaze a trail for truth. That way, ultimately, we win.

The Apprentice : ME Carer Style

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 'n' roll and I'm Elvis Presley" : I will never cease, even after decades, to try and think to ways to ease your pain, to bring you some comfort, to search for a things that might help you get through another day.
  • "For me caring  is about hard-work, attention to detail, being willing to make mistakes and learning from these mistakes." : I will get it wrong, often, because you are so sound sensitive, so touch, so light sensitive, so tormented, so close to screaming in agony, even so  I will try and learn the best way to flow with your tiny scrap of energy.
  • "I knew I would be selected, not to sound big-headed... I've succeeded in the companies I've worked for because I work hard and I'm honest." : I will use  all my life experience, professionalism, learning , every ounce of creativity, every single talent I possess, to deal with , to cope with, to help you get through, second by  second , the unspeakable , never-ending torment that you are in.
  • "I'm at the top of my game." : I love you more than ever, I have grown immeasurably as a person, I have come to learn what is truly important, I live now in six-figure moments.


The Undeserving Poor

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 Severe ME sufferer, for one day, never mind 17 years, as my wife has done,  Mr Cameron,  to know there's plenty wrong with the system; how the biomedical truth about ME , is continually distorted and twisted by powerful vested interests, how people with ME are portrayed as some kind of inadequate nut case and are left for decades upon end in incalculable suffering. 

 The  Big Society and Fairness.......it's not the reasonable tax payer on his sofa is it ? It's the unbridled  big business, the unbridled  millionaire, the unbridled  Medical Insurance Company , that is setting the agenda, that is insisting  that the poor shoulder five times the burden of paying back the deficit than the rich, that is insisting that people with ME  are denied proper medical care, that is insisting upon ethically cleansing the inner cities of the poor, the sick, the vulnerable, that is insisting upon  labeling people on benefits  as the "undeserving poor."

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. Who began by putting to death who, in their tens of thousands ? 

The sick and disabled .


These are terrifying times.














Praying the Breakthrough Prayer

"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."

Together we "threw", we pushed, I punched, I heaved, I grasped the oppression, the deceipt, the lies by the scruff of their neck and we shouted out most powerfully, two voices, one prayer : and we were not alone last night   :

"May the mountain of ME be removed and thrown into the sea. "

Amen !

Glory be to the Father
to the Son
to the Holy Spirit.


we prayed, so close, together and I laughed and laughed; a laugh of great power and joy.

I cannot thank Theresa and Pauline and dear "...." enough, for the light.