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Saturday

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.

My BJN article : a long journey

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 supremely professional and enlightened journal : for a nurse there is no better achievement, for an ME activist it is a testament to the power of never  giving up, and for the ME (UK)  nursing community,  it is a stark plea : please wake up !

Hard to believe

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:
    1.    
    2. The epidemic characteristics
    3.    
    4. The known incubation period
    5.    
    6. The acute onset
    7.    
    8. The associated organ pathology, particularly cardiac.
    9.    
    10. Infrequent deaths with pathological central nervous system (CNS) changes.
    11.    
    12. Neurological signs in the acute and sometimes chronic phases.
    13.    
    14. The specific involvement of the autonomic nervous system.
    15.    
    16. The frequent subnormal patient temperature.
    17.    
    18. The fact that chronic fatigue is not an essential characteristic of the chronic phase of ME.
       
  • To clarify the numerous physiological and biochemical abnormalities found in ME.
  • To clarify  that only a very small percentage of patients are likely to see full recovery or remission (according to US statistics provided by the Centre for Disease Control, only 4% of patients had full remission (not recovery) at 24 months.)
  • To clarify that recovery from severe ME is extremely rare, about 6-10%.
  • To clarify that many ME patients actually have more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients.
  • To clarify that although there is no single diagnostic test there is an abundance of research which shows that ME is an organic illness which can have profound effects on many bodily systems.
  • To clarify that that ME is a life-long disability . Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and, sometimes ME is fatal.
  • To clarify  that the "belief that exercise is damaging" is an extremely valid one for the severe ME suffer.
  • To clarify  that the Oxford Criteria  has attracted much international criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise to be diagnosed as ME.
  • To clarify  that the incidence of ME is rising;  no other disease surpasses the rate of increase.
  • To clarify  that all auto-immune disorders have a female preponderance due to hormonal influences.
  • To clarify  that Cognitive Behaviour therapy (CBT)  is harmful/unhelpful to a high proportion of ME sufferers.
  • To provide a true description of the level of disability experienced by the severely affected.
  • To acknowledge that there are serious cardiac issues in ME.
  • To provide any description of the multiple and complex personal care and mobility needs of the severely affected.
  • To acknowledge that the severely affected require care 24/7.
  • To acknowledge that the person with severe ME spends their day in great suffering.
  • To acknowledge that people are so physically impaired that they need physical facilitation, emotional support and enabling in order to survive on a daily basis.



..and even all this bears very  little relationship to the full force of suffering  that I witness every day. There are depths to Severe ME that have not even begun to be researched;of that I am certain.

You do not have ME !

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 I am filled with a rage so profound that I don't know what to do.

When I calm down,  I find it spurs me on  . Such a profound evil .

The Stonebird (informal) Definition of Severe ME

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 hurt you.
  • Severe ME is being neglected by the Health Service.
  • Severe ME is having to regularly have to prove you are ill, just to get your benefits.
  • Severe ME is being always in constant pain.
  • Severe ME is finding that everything you try to do hurts you  on some level somewhere.
  • Severe ME is feeling dizzy and disorientated most of the time.
  • Severe ME is spending your  life predominantly sitting in a chair unable to move or function , or in bed, paralysed.
  • Severe ME is being not  properly medically tested.
  • Severe ME is being unable to  find any clothes that don't itch you.
  • Severe ME is being unable to go to the shops to buy clothes.
  • Severe ME is finding that any  noise irritates you  to distraction.
  • Severe ME means that your mind lives in a sea of fog and emptiness.
  • Severe ME is finding that everything normal is out of reach.
  • Severe ME is being unable to  manage without help, all day long.
  • Severe ME is having  no energy.
  • Severe ME is living  in poverty.
  • Severe ME is being unable to  decorate because you are  chemically sensitive and  the paint would make you  more ill.
  • Severe ME is being unable to tidy away the things on your  desk or sort anything out because it's too complex functionally for you to do.
  • Severe ME is being unable to carry things.
  • Severe ME is finding that  everything in your world is hurting you , both inside  and outside you.
  • Severe ME is being unable to travel without torment.
  • Severe ME is finding that motion makes you  ill.
  • Severe ME is having  no real choices , apart from not to despair.
  • Severe ME is a torture and a nightmare.
  • Severe ME is constantly feeling as if you are screaming with agony inside.
  • Severe ME is being  more sick than an AIDS patient two months before death.
  • Severe ME is noticing that people  with terminal cancer have a better quality of life than you,  until they die.
  • Severe ME is being sick of not being understood.
  • Severe ME is being sick of the denial of your reality.
  • Severe ME is weeping  everyday with the sheer physical pain of your life.
  • Severe ME is having all  the things you  love  taken away  from you.
  • Severe ME is being unable to bear being  touched because of the pain and irritation that it causes.
  • Severe ME is your  body going dead and numb regularly, awake and asleep.
  • Severe ME is having  skin that crawls with intolerable sensations.
  • Severe ME is being  cognitively disabled.
  • Severe ME is finding that anything you do will lead to worsening pain, paralysis and numbness.
  • Severe ME is feeling like you are  dying.
  • Severe ME is having your  illness misrepresented and negated by a powerful psychiatric lobby that denies the physical reality of your neurological disease.
  • Severe ME is finding that  there is no one with any power or authority doing anything to change it.
  • Severe ME is being enraged by the untruths that exist about ME , that are accepted by professionals and society.
  • Severe ME is finding that your  hypersensitivity is increasing.
  • Severe ME is being persecuted because you are disabled and ill.
  • Severe ME is having to buy  own nutritional medicine and organic products; you cannot live cheaply as a disabled person.
  • Severe ME is never going on holiday
  • Severe ME is never going to social or family events.
  • Severe ME is having  to fight for everything that you should be entitled to.
  • Severe ME is a desperate thirst that is unquenched.
  • Severe ME is an extreme head ache that goes on and on, throbbing unceasingly, day after day, and all night without relent.
  • Severe ME is where thinking is so painful you can't do it.
  • Severe ME is going to sleep and waking up worse.
  • Severe ME is having no energy to start with.
  • Severe ME is struggling to breathe.
  • Severe ME is struggling to eat because chewing is exhausting and swallowing is dangerous.
  • Severe ME is struggling to live.
  • Severe ME is numb eyeballs and itchy, burning eye pain and scratchy dry eyes.
  • Severe ME is not being able to read because the letters are dancing in and out and up and down and there seems to be two of everything.
  • Severe ME is where words lose their meaning and comprehension disappears and is replaced by tormenting pain in your head and worsening pain in your body instead.
  • Severe ME is emptiness in your mind where colour and thought once existed.
  • Severe ME is sleeping all morning and awake all night.
  • Severe ME is needing the toilet again and again.
  • Severe ME is a bizarre world where nothing seems as it is and every reaction is opposite to what you would expect.
  • Severe ME is where no one tells you what is going on in your body,  to make sense of all the symptoms .
  • Severe ME is where you have to work it all out for yourself.




Linda Crowhurst

15th July 2010

A crying shame

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...

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!", please excuse the language.

Now that point seems to have been reached on the British Medical Journal site, where Attorney Justin Riley has bluntly demanded that the BMJ: " Please Remove Defamation of ME Patients"

Laurence Swift's response is equally powerful, in its critique of the medical establishment and their inexcusable attitude towards ME patients. The " synthetic term CFS, must be retracted" he says.

The "F..off!" moment, is when you raise your head up and you shout " NO MORE ! " , and it is long overdue . It will really happen when not just the BMJ, but all people with ME, around the world finally sever all associations with that awful " synthetic" term "CFS".

CFS has nothing to do with ME but everything to do with the ongoing lack of treatment for my wife and the countless others this day who face hour upon hour of relentless, never-ending suffering , completely wrecked lives and this ongoing persecution.

No More !

Not over yet : the CDC & the negative XMRV study

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 participants according to the Canadian Definition. Oh but that's been criticised as "too inclusive" apparently !!

It's the hoary old moving of the goalposts , that's what this study is, the same hoary old moving of the goalposts that has characterised the CDC's involvement n ME all along .

You shake your head, you shake your head....

Turns out they used the wrong test tubes to collect the blood.

Yep.

The CDC apparently is unwilling - what the hell..? to use test tubes laced with Sodium Heparin, you know , the ones the WPI use. Where they really interested in finding the virus at all, asks Dr Vernon.

It really doesn't look like it, does it ??

Hold on to your hat :

Plasma was collected from 18 participant in Georgia : using tubes not suitable for plasma collection !

I'm telling you....

Dr Vernon writes :

"the explanation for not finding XMRV in these studies is simple - this was a study designed not to detect XMRV using a hodge-podge sample set." Yes to that.

If the researchers had to live with the all-embracing agony Linda my wife has to live with day after day, for decades on end, oh yes, I bet they would have made very sure they were studying ME patients, especially the severely affected.

So, there we have it : more delay. Endless f...... delay. Of course, of course...

Just get on with it you two , you holding your wife, just get on with it

I had reason to be reading Randy Shilt's "And the Band Played On" yesterday, that terribly beautiful book about the AIDS struggle : so awfully similar to ours.

If I could just paraphrase, Larry Kramer :

If this CDC study doesn't scare the shit out of you we're in real trouble. If this study doesn't rouse you to anger, fury, rage and action, people with ME may have no future on this earth. Their continued existence depends on just how angry you can get.. (cf March 7 New York City, pg 244 , Larry Kramer.)

Is my wife dying ? It sure felt like it yesterday - and the year before, and the decade before that....

The shameful history of the AIDS struggle, same old, same old, was once described by Cleve Jones as the "story of bigotry and what it can do to a nation." Change that to "corporate interests" for ME and there you have it in a nutshell.

Hit the BANKERS, not ME !

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 this money.". How ironic !

Only today , out of desperation, I posted this comment in relation to the Coalition's welfare policy : " All I can see are the Lib-Dem's nodding heads ; as what little of my sanity that is left, starts to crumble. God knows how we are going to cope ."

With little protest , the previous Government's Welfare to Work programme,a mere walk in the park, surely, compared to what the Coalition are currently considering, found seriously ill people, people with debilitating conditions and serious disabilities , even those with Severe ME, illegible for Employment and Support Allowance (ESA), the benefit that replaced Incapacity Benefit in October 2008.
This is because they had been subjected to the notorious Work Capability Assessment (WCA) which took little account of variable symptoms, generalized pain, exhaustion or the underlying seriousness of a person's condition.

The WCA

" contains a series of questions, called "descriptors", that relate to physical and mental functions, and from which claimants score points. The test fails to include questions relating to energy, stamina, illness and malaise. Instead, it focuses on specific physical functions, such as reaching, bending and continence. "
writes Melissa Viney

According to a Citizens Advice Bureau report , those seriously ill and disabled people , found fit for work under the last Government and denied ESA , were subsequently written off, just left to cope with greatly reduced benefits on Job Seekers Allowance and little support. (Source : Not Working . CAB Evidence on the WCA.)

Yet introducing ESA and the WCA in 2007, Peter Hain, described them as "A new, progressive vision for our welfare system ."

This extraordinary counter-intuitive reasoning has its roots, says Jonathan Rutherford in the American right's philosophy that the poor are the cause of their own poverty because they fail to take advantage of the opportunities "available" to them..

This all began in 1994 the Conservative Government brought in UNUM, the giant American Medical insurance Comoany, to advise them on welfare reform, a member of that group was Mansel Aylward, who in 1999, as Chief Medical Officer at the DWP, devised the new Personal Capability Assessment (PCA), contracted out to the American Corporation Atos Origin, where the " emphasis was no longer on entitlement, but on what a person is capable of doing."

The intellectual basis behind the PCA was UNUM's "The Scientific and Conceptual Basis of Incapacity Benefits ", written by Mansel Aylward, which is based upon the biopsychosocial model of illness, designed to "liberate" the disabled from the " medical model" . According to the biopsychosocial model, under which untold tens of thousands with ME have suffered grievously, " Disease is the only objective, medically diagnosable pathology. Sickness is a temporary phenomenon. Illness is a behavior...a social phenomenon rather than a health problem. The solution is not to cure the sick, but a "fundamental transformation in the way society deals with sickness and disabilities. "

The transformation was this : " Sickness is a social and cultural phenomenon rather than a health problem. The solution is not to cure the sick, but to transform the culture of welfare. No one who is ill should have a straightforward right to receive benefit.", the " extreme agenda " which has been adopted by former banker David Freud, now Parliamentary Under Secretary of State at the Department for Work and Pensions.

Pushing the neoliberal agenda to triumphant heights, the new Government says the "only" way to save money is to slash welfare spending. It wants to wants to cut incapacity benefit , the employment and support allowance, cap housing benefit and subject all those on disability living allowance (DLA) to strict medical examinations. Effectively as many claimants as possible must be bumped off benefits.

To prepare the ground, the Disabled have been thoroughly demonized; labeled even by the Prime Minister as "Scroungers"; and the need to reduce " welfare dependency" is being shouted out , as loud as possible, to all who can hear.

And this is not just happening the UK . As Naomi Klein points out the G20 : "Faced with the effects of a crisis created by the world's wealthiest and most privileged strata, they (the G20) decided to stick the poorest and most vulnerable people in their countries with the bill."

Dan Tanzey asks : " How much more will the poor and powerless be expected to pay for a crisis created by the rich and powerful?"

Klien comments : "Already, workers, pensioners and students have taken to the streets against austerity measures in Italy, Germany, France, Spain and Greece, often marching under the slogan: "We won't pay for your crisis." Mothers in Romania and pensioners have taken to the street to demonstrate against Benefit cuts, a " a diverse mix of union members and community activists, parents and children and people of all ages have been out protesting in New Jersey against budget cuts."

As Klein argues, why should any of us take orders from the G20, an " ad hoc institution with none of the legitimacy of the United Nations" ? Right across the world it is the poor who are being made to pay for the banking crisis. In Spain , a striking civil servant asked " Why should hard-working people like us pay for the mistakes of bankers?" As the Daily Mirror asks " Do we just sit there and nod politely as we’re told that nearly one in eight public sector jobs will be axed over the next five years?

Since when did taking 725,000 people off the wage bill to toss onto the benefits bill make any kind of economic sense? Soaring unemployment will destroy ­families and communities, but it won’t help fill the economic hole we’re in."

As Fred Shipman points out : " It needs to be emphasised that it is not the public sector which has caused the deficit but the irresponsible activities of the bankers and speculators of the private sector."

It is certainly not people with Severe ME who have caused the Economic Crisis and they should not have to be lying this day, as many are, in fear and trembling.

Bishop Tutu once said " I am not interested in picking up crumbs of compassion thrown from the table of someone who considers himself my master. I want the full menu of rights. " . Denied even the basic right of proper medical care for decades , under the biospcyhosocial regime that has now gone global, people with ME know more than most, how evil that regime is. Are they just going to sit there and nod politely while even what little they have left, their benefits are stripped away from them ? Sadly, judging from from the deafening lack of response by all the main ME Charities to the proposed welfare cuts , that is exactly what is going to happen.

References:

  • Twisted Witch : New Statesman May 2008
    http://www.newstatesman.com/politics/2008/05/work-benefit-claimants-reform
  • Greg Crowhurst Joe Public Blog , The Guardian, June 30 2010
    http://www.guardian.co.uk/society/joepublic/2010/jun/30/incapacity-benefits-reform-scared
  • Melissa Viney, Bending the Rules, Guardian , October 28 2010
    http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits
  • Citizens Advice , Not Working , 2010
    http://www.citizensadvice.org.uk/not_working

  • Peter Hain, Labour & the Sick Note, New Statesman, 27 Nov 2007
    http://www.newstatesman.com/politics/2007/11/work-benefit-welfare-tories

  • Jonathan Rutherford, E pluribus Unum, The Guardian 17 March 2008
    http://www.guardian.co.uk/commentisfree/2008/mar/17/epluribusunum
  • Jonathan Rutherford, The welfare reform bill’s hour of need, The Guardian 22 June 2009
    http://www.guardian.co.uk/commentisfree/2009/jun/22/welfare-reform-bill-mental-health
  • Naomi Klein , Let’s take no orders to slash and burn from this G20 Club, The Guardian 29 June 2010
    http://www.guardian.co.uk/commentisfree/2009/jun/22/welfare-reform-bill-mental-health
  • Dan Tanzey, Letters, Work, Welfare and Budget cuts, The Guardian
    http://www.guardian.co.uk/business/2010/jun/30/work-welfare-and-budget-cuts
  • Romania’s Mums protest against Budget Cuts, Euronews, 1 July 2010
    http://www.euronews.net/2010/05/18/romania-s-mums-protest-against-benefit-cuts/
  • Financial Times http://www.ft.com/cms/s/0/2e2fe6f6-633a-11df-99a5-00144feab49a.html
  • BRUCE SHIPKOWSKI Thousands Rally In NJ Against Budget Cut My Fox, New York,
    http://www.myfoxny.com/dpp/news/local_news/new_jersey/Thousands-Rally-In-NJ-Against-Budget-Cut-20100522-apx
  • Fred Shipman, The Poor should not have to pay bankers’ gambling debts, 17 June 2010
    The Argus , http://www.theargus.co.uk/yourargus/letters/8225652.The_poor_should_not_have_to_pay_bankers__gambling_debts/


www.stonebird.co.uk : The Lived Experience of Severe ME