Search This Blog

Breakthrough Prayer 9pm GMT Saturday 30th April 2011

April 30th 2011
Today we choose to focus on giving thanks and praise for all the small triumphs and graces that help us get through each day.
For this is how we can survive the great onslaught of physical symptoms and the gross injustice and neglect we experience in the world; for our neurological disease, ME.

When we turn to God, He can bring us through the hardest of places, when we focus inwardly we can miraculously find some sense of peace and goodness within immense suffering; not of the world.

When we focus outwardly and seek union spiritually with others, we can build on hope and strength. Our prayers , joined together , transcend all difficulties and immerse us in the Kingdom of Love; God's kingdon here with us.


Lord we turn to You
and place our hearts
and minds in love.
We give thanks and praise
for all good
things that you have given us.
May we always find beauty in
each day. Amen

Empirical polarization.

"Everyone is entitled to his own opinion, but not his own facts."
Daniel Patrick Moynihan


I first heard that quote last night, in the shower. I thought, wow,  this it so appropriate for what is going on in the ME Community.


My wife's agony-filled  life is dominated not by scientific fact, but by the groundless opinion of  a small group of psychiatrists. Official policy towards ME is based not on the medical  literature but upon  wild speculation. What we are a long-time victim of, in the ME world, is  I think,succinctly summed up by Eugene Robinson in his blog today : " I'm talking about a lack of agreement on what is provably, objectively true and what is not. Political polarization is old hat. Empirical polarization is something new......The vast majority of scientists look dispassionately at the data and conclude that atmospheric warming and climate change are real. Deniers don't produce data of their own, they just say no, no, no......http://azstarnet.com/news/opinion/article_0995344c-45c3-5362-9cb7-87ea211f9786.html


..and yet the deniers that ME is real,  are listened to,   have the worshiping  ear of the media, dictate the NICE guideline on ME, are  showered with  millions of pounds; while I -  well,  I was reaching out at 3am last night , trying to hold my wife where it hurts, trying to take away the pain....


Where vested interests dominate, it seems there is increasingly little room for facts.

Where are the Strong Voices ? by Greg & Linda Crowhurst

photo by Nutdanai Apikhomboonwaroot

 


"Why are the UK patients’ support charities not 
vigorously refuting the false reasoning of the 
Wessely School about ME/CFS on every possible 
occasion instead of colluding with it?"

Margaret Williams Grey Information about ME/CFS 
Help ME Circle 28th April 2011

Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?

Where are the strong voices standing up for the separation of ME and CFS ?

Where ate the strong voices condemning the psychosocial clinics ?

Where are the strong voices suing the psychiatrists for misrepresentation , misinformation and academic misconduct ?

Where are the strong voices speaking out against euthanasia ?

Where are the strong voices condemning the CDC criteria and the CFS label ?

Can you find one Charity doing all these things ?

Can you find one Charity that makes  people feel and believe that  they  are actually representing the truth of ME  ?

It's one thing to live in the virtual world of the online ME community,  but how many Charities  are breaching the interface between the virtual world and the real world and how many Charities are actually making  an impact upon policy  ?

Whenever one conducts social research on any topic - benefits, politics, one rarely finds an article or an analysis by an ME Charity - it's the Scope's the MENCAP's, the MIND's that are speaking out

Anyone who really has ME knows they are being abused by the system . They know that none of  the Charities are effectively speaking up and bringing about  radical change . 

They know there is too much complicity and compromise, not enough focus on the real suffering and the radical change that is needed.

They know there is very little understanding  of the suffering of severe NE and how it could be alleviated .

Where are the articles in the newspapers and the journals that count ?

Where are the headlines? 

Who cares ? Very few in reality . Activisim is so much more than being ill and speaking up; it is an ongoing battle of exhausting immensity that takes everything from you in the fight to try and gain a shred of truth out there in the real world.

A whole community may be speaking to itself but is hardly having an impact
There are not enough people saying the right things, doing the right things, challenging the institutions effectively enough holding seats of power to make a real difference

Perhaps what us needed is  anew grass roots me movement really driven by people with me , not by people who do not even have ME  speaking on their behalf .maybe no movement at all.

Perhaps the only way to be effective us to be an individual who dares to speak up and act .

Once you are enmeshed in a group you are compromised .
Does anyone have a clear vision of how to really make change happen ?

How many more decades do we have to be abused and compromised away ?

There may be a few voices speaking out,  but it still feels as if we are getting nowhere, because we cannot break through the power-hold of the psychiatric  lobby.

Which Charity  is  digging deep , to find the fundamental root cause of the inertia , the  deliberate negation. and stagnation and change it  ? Unless you get to the bottom you are never going to heal it.

All the time we compromise we dilute the outcomes and water down truth and hope.

It's uncomfortable to ask yourself  :

Are you compromising  ?

Are you challenging ?

Are you acting ? 

....and if you are not, who have you given your power to to speak up on your behalf ?

 Just because they are an ME Charity , it does not mean they are speaking up for you.

It's not enough to ask for an ME consultant, it is not enough to push for research, it is not enough to push for a clinic, it is not enough to hold a conference , unless you identify clearly who you are speaking for . All those things can be compromised away while seeming to be doing something.

The consultant's hands are tied if the systems and structures are not there to back him, if tests and treatments cannot be agreed or implemented.


Research can be compromised if you do not use the clinical criteria that will identify ME alone .

A clinic can be compromised  if it is treating the wrong symptoms.

A conference can  be compromised if you do not clarify the difference between ME and CFS..

It is not  enough to say you represent ME if you are not addressing the needs symptoms and experience of the severe ME sufferer;  that is how easy it is to compromise away the truth while creating the illusion you are doing something.

The time to honour ME is long overdue. Who can say they are ?

Revolting Cruelty : a Response to Michael Sharpe

Revolting Cruelty : a Response to Michael Sharpe
Greg Crowhurst 26th April 2011


Professor Michael Sharpe must be very fond of George Bernard Shaw; his infamous quote that people with ME are the "undeserving sick" , he claimed was from Pygmalion and here he is at it again,  in his latest article,(Sharpe 2011)  quoting Shaw   :" George Bernard Shaw teasingly referred to America and England as two countries separated by a common language, psychiatry and neurology increasingly appear as two specialities separated by different perspectives on what is in fact a common organ; the brain."


Indeed ! If only Sharpe  had expanded !! Is he, I wonder,  referring to how psychiatry has become far  too driven by ideology (and vested interests) ; rather than structural neuropathology ( Sabshin, M. (1990) ? What's  changed, I would like to know ,  since Ferenczi,'s  , although never having seen a patient with Tourette syndrome, suggestion in 1921  that the disease  was the symbolic expression of masturbation caused by sexual repression (Kushner 2000) and McEvedy and Beard's assertion in 1970 , without seeing a patient,   that ME is a case of "mass hysteria " ? As Compston (1978)  points out  : "McEvedy and Beard’s conclusions (of mass hysteria) ignore the objective findings of the staff of the hospital of fever, lymphadenopathy, cranial nerve palsies and abnormal signs in the limbs...Objective evidence of brain stem and spinal cord involvement was observed” 


Oh, Sharpe  could have gone on, couldn't he ? About how the typical psychiatric explanation for depression was narcissism, rather than Limbic-cortical dysregulation about how psychiatrists put    Obsessive Compulsive Disorder down to poor parenting rather than frontal-subcortical circuitry, right caudate activity, Schizophrenia to Narcissictic escapism rather than NMDA receptor activation in the human prefrontal cortex, Visual hallucination
to Narcissism rather than retinogeniculocalcarine tract, ascending brainstem modulatory structures, Auditory hallucination, again  to Narcissism, rather than frontotemporal functional connectivity, Eating Disorder - again- put down to Narcissism, rather than Atypical serotonin system, right frontal and temporal lobe damage and Bipolar Disorder - once gain, wouldn't you know it, put down  to ol' Narcissism, rather than Prefrontal cortex and hippocampus, anterior cingulate, amygdala. (Wikipedia) 

Mind you, Neurologists by all accounts struggle - here's a revealing  post by a young doctor -"tx", by the way ,  is a medical abbreviation,  for "no treatment " :

"the brain is a fascinating organ and many neurological disorders provide insight into some of its structure and function. i was interested in neurology for many years but that interest died during my third year rotation. people say there are things you can do in neurology to make their patients better. i say neurology probably does the least out of any specialty out there. out of the things that the poster above me listed:

dementia - no tx, just delay inevitable
headache - sometimes chronic headaches can't be treated, for the others, who cares, it's a headache
epilepsy - moderately successful
parkinson's - temporary tx only
stroke - no tx except for the 1-2% of patients who get tPa
huntington's - no tx
ms - no tx
chronic pain - no tx
brain tumor - send to neurosurgeons

these are the bread and butter cases, the core of most of your practice. other than epilepsy, the neurologist really doesn't have a huge impact on these main diseases. that to me is unsatisfactory. there are some rarer diseases that neurology can impact, but i can't rely on those to keep me going.
http://forums.studentdoctor.net/showthread.php?t=262444



 Given  the   vast amount of biomedical literature (some 5000 papers) going back to 1934 ;  given  the fact that ME  was classified as a neurological illness by the WHO (ICD-10 G93.3) in  1969 ;   given  that ME was recognised as a specific disease entity by The Royal Society of Medicine in 1978 ; given  that ME  was recognised as an organic disease by the Department of Health in November 1987; given  that on  25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, admitted  that ME is "a very real and debilitating neurological  condition";  given that on 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:“I want first to put on the record that we accept the World Health Organisation’s classification of ME as a neurological condition of unknown cause.";  given that on 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer:“The Department’s view is that it is important to recognise that CFS/ME is a genuine and disabling neurological illness and health professionals must recognise it as such”;  given that on  11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the noble Earl ,  the Parliamentary Under Secretary of State for Health, (Earl Howe) whether the coalition accepts that CFS/ME is a neurological condition and he replied that the " Government accepts that it is a neurological condition”;  given that on  19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:“I would like to assure you that the Department recognises CFS/ME as a neurological disease”; and given that on Feb 2nd 2011 Paul Burstow,  Minister of State, Department of Health, in response to Ian Swales MP,  confirmed that there is :"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem " ...... it is a "revolting cruelty" for Michael Sharpe to keep stirring up things in this way. 

My wife continues to suffer appallingly, without treatment, after 18 years,  as a result of these psychiatrist's influence.

FINE failed dismally, as did PACE. 

Sharpe failed to mention how unscientific the PACE trail was, how it used no objective measurements, how it took no biomedical measurements, how modest the "improvements " were  : 20 steps at a cost to the UK taxpayer of £5 million, how not one  participant got  even near to their previous levels of health.

He fails to mention the Association of British Neurologists response to the NICE Guideline : “(The Guideline Development Group) is tactically promoting Oxford criteria over the more widely used and recognised international CDC criteria – again, a clear evidence of psychiatrists’ influence on this group”.


Referring to a paragraph in the draft Guideline:  “This paragraph deals with a publication (Wessely et al, Lancet 1999) which was published as a HYPOTHESIS and which remains to be proven. However, the GDG seems to have taken it as a matter of fact. Please refer to the criticisms of this article in the Lancet.  Being only a hypothesis, (it) is totally irrelevant for the purpose of a dedicated guideline on CFS/ME”.

“The GDG should also be criticised for its total lack of reference to the neurological aspect of fatigue and its overemphasis and over-reliance on the psychiatric literature from a group of psychiatrists”.

“With the possible exception of some psychiatrists, most specialists prefer the international criteria to diagnose CFS/ME”.

“Clearly there is very little compelling evidence at present that these patients benefit from CBT and GET”.

“There is selective omission of research literature on reproducible neuroendocrine tests, with an overemphasis on research data from certain psychiatrists”.(Williams 2007) 


Myalgic Encephalomyelitis , is a serious biomedical disorder; only those in the final stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years, often decades on end .There is simply  nothing more devastating than  for a sufferer  to be shoddily dismissed by a Neurologist . 


I am so angry that Sharpe so lightly embraces the fact that most UK Neurologists do not accept ME. Patients do not have be told that !! My wife was dismissed 5 years of agony ago as just "requiring reassurance " .  I know the depths of despair that this rejection  engenders.


 Sharpe does not stress that  any Neurologist who dismisses ME as a psychiatric condition ,  is potentially in  breach of the GMC regulations, concerning  the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmcuk.org/guidance/good_medical_practice/duties_of_a_doctor.asp). Hooper 2010


Given the impact of Sharpe et al - and the hopeless Neurologists -  if  an ME patient or carer was going to quote George Bernard Shaw I fancy, like MJ Higgins, that  this is the quote they'd favor  -the one  from The Doctor's Dilemma  :

"I must reply that the medical profession has not a high character: it has an infamous character. I do not know a single thoughtful and well-informed person who does not feel that the tragedy of illness at present is that it delivers you helplessly into the hands of a profession which you deeply mistrust, because it not only advocates and practises the most revolting cruelties in the pursuit of knowledge, and justifies them on grounds which would equally justify practising the same cruelties on yourself or your children, or burning down London to test a patent fire extinguisher, but, when it has shocked the public, tries to reassure it with lies of breath- bereaving brazenness. "




Compston N. (1978 Postgraduate Medical Journal) http://pmj.bmj.com/content/54/637/722.abstract


Kushner H (2000) A Cursing Brain, Harvard University Press.
Sabshin, M. (1990). Turning points in twentieth-century American psychiatry. American Journal of Psychiatry, 147(10),1267-1274.
Sharpe M (2011) Chronic fatigue syndrome: Neurological, mental or both.Journal of Psychosomatic Research http://www.sciencedirect.com/scidirimg/clear.gifdoi:10.1016/j.jpsychores.2011.03.003 
Wikipedia http://en.wikipedia.org/wiki/Neuropsychiatry#The_case_for_the_rapprochement_of_neurology_and_psychiatry


Williams M (2007) Comments on the NICE Guideline on “CFS/ME” www.meactionuk.org.uk/Comments_on_the_NICE_Guidelines.htm

St Mark's Fly

The discovery that the  tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly  painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.

St Mark ,  who was probably called John, came from a socially elite family and possibly  the holiest home in the world, for it could well be his  house where the  Last Supper and Pentecost took place; yet   it's how   Mark  spent his life accompanying Peter and recording what he said , that I so identify with this Easter morning.

 I am not so much a "carer", as someone who accompanies Linda, my wife, on her lengthy, decades-long  journey  deep into the dry , crucified wasteland of Severe ME. How I have tried - yet to my endless frustration I cannot find the words to express the agony and torment that makes up EVERY SINGLE MOMENT of her life. I am the one who sees her wake up into agony, go to bed in agony and struggle through each day in agonizing moments,  unable to know what to do to cope.

This woman,  that I am so privileged to know, is a volcano  of determination, guts and courage; that is how she not only survives, but inspires  through her glowing  faith - I wrote in my journal yesterday what a mystic, a saint, as a matter of fact,  that she is . One day people will read her writings and notes in wonder. Right now, they ignore her.

Truly hers is the no-holds barred, naked, stripped faith of  St  Mark , Peter , John and such like. It has nothing to do with "religion" .Like them,  it has everything to do with encounter on her journey.

This woman is the reason why so many in the ME world : that world of egos and ineffectiveness,   have stopped speaking to us, for she will not compromise on the truth. She will not accommodate, for a second,  any   half measures , anything to do with the CDC criteria - shame on those that do - any naive bargaining  with vested interests, anything  to do with empty promises or death-making.  Her experience, her  powerful intellect and screaming body have`learned from bitter experience that time and time again, people with Severe ME are being let down, especially by those that should know better.

Not in her name !

Nothing less than a total and genuine commitment to the needs of people with Severe ME, which , let's face it,  is not widely shared, will do for Linda. It really pisses people off.

Increasingly isolated, we journey daily further and further into this  unbearable, stark, wanting  hinterland, her and me. Except we can't walk. I try and find us some shade in the shadow of a baking hot rock, while the horizon seems to  retreat ever further away. Scientists, medics, are celebrated ;  we hang on their every word and quote them faithfully; but what do they know of this place ?

The silence of the patient and carer  voice on ME conference platforms still remains as  deafening as ever, a testament to condemnable  priorities. No wonder we are going round in circles.


Linda , a fly called St Mark and me.....


Founding the African Church was the last straw, they stoned the old man, threw him,  St Mark ,  into prison, burned his body , they hated him so much.  Prophets,  sufferers; they  are always the outcast.

Breakthrough Prayer 9pm GMT Saturday 23rd April 2011

April 23rd 2011
When we think about Easter , we cannot forget the Cross of Good Friday; the pathway that leads to the joy of the resurrection.
Sometimes when we look at the Cross all we can see or think of, is pain and suffering . And we cannot always bear it. We cannot sometimes even look. However the Cross is so much more than the physical experience we see.

If we look closely perhaps we can also see the humility and love of Jesus: his immense compassion and desire to heal the whole world, not just for then or for now, but for all time. We can feel his longing to help every single person who has ever lived , and all those yet to come .
When we look at the Cross, let us ask to see the light , the truth, the wisdom and the power of God ,shining forth from this ultimate healing moment for all mankind. Let us ask to see and feel the wonder of Mercy , silently flowing out to touch us all, remembering that God’s Mercy flows forever and ever.

When we look at Jesus with his arms open wide to receive and redeem all the hurt of the world, we need to use our spiritual eyes to look beyond the earth bound situation . For he is not alone . As Jesus, the Son of God, reaches out to embrace us all, so his heavenly Father, with his ultimate Love for his Son, is embracing him also. When Jesus calls out in agony , the Father calls with him ; when Jesus cries, so does the Father
.
When we call out , we too are heard, because we are held in that loving compassionate embrace of the Father and the Son. When our tears fall, they are made holy , for we are held by the Father and the Son, forever, in that moment , in the Heart of Love.

Let us then look with new eyes on the Cross this Easter. Let us find hope and healing, mingled with our pain and tears. And let us thank God for the ultimate gift of Life that flows from this outpouring of love.

Perhaps the prayer circle this week 
could especially remember  people with 
Severe ME and carers , who feel isolated
 and alone within the illness,
 especially at Easter.

Good Friday

Good Friday by Linda Crowhurst
The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.
We hold onto Love at the centre.
All is stripped away from us by the circumstances and experience of this illness; Severe ME. The pain of the Cross is very real. The sacrifice of the one who loves is immense; the carer who loves and stays despite the pain and torment he both sees and feels, is ravaged daily by the storms of the Cross.

The love, the open-heart of the carer for the beloved is a wound that brings forth the greatest compassion and untold wisdom in the world of suffering. It brings clear sight of injustice and calls for the need for Truth and Integrity on the path ahead.

The sufferer too lies pinioned in pain on the Cross with Christ. Each throb of pain is an onslaught and a torture.

Each moment of inability, of incapacitating paralysis, breathlessness, is a moment of shared anguish with the Lord.

Each second of spreading numbness, pushes the sufferer further away from the world and closer to heaven. Each exquisite level of torture played out on the person with Severe ME is a part of the suffering Christ on the Cross. There is no separation from the hurt of the world, for the Lord, the carer, the sufferer; all are bound in agony by their experience and by their love for each other.
God loves us. Of this be certain. God knows all our pain. Of this be certain too.

We are all bound to the Cross in His intimacy of suffering.

Few remain with us.

Few remain, yet all are loved. We hold to the Cross. We cling to each other and spiritually our need is great. Our hearts are all open. For whom can we turn to in such suffering other than to God ?
.
Even if it feels like He has abandoned us, this not so. We cannot always bear nor understand the level of distress and pain we suffer, yet we can hold fast to the truth.

We can bear our suffering with love at the centre. We can know in all certainty that even if we know not how we will cope yet still we will cope, and more than this, great gifts of goodness, great spiritual blessings, will flow from our steadfastness to love.

And that is all we must focus on. The Heart of Love, feeling our pain, becoming our pain, being all pain. And finally the Heart of Love healing all pain.

We may not feel healed. We may not feel God's presence, even in the darkest depths of suffering, yet truly the Light of the World is with us and He bears all hurt for all time and as we enter too into this mystery with Him, so we are all saved.

For Love, though it appears to fail on the Cross of Good friday will ultimately triumph and leads us always on to the Glory of God, to Light, to Healing, to Hope, to Mercy.

Thus we can say with all certainty, Come Lord Jesus Come. Take my suffering, take my heart and use it for Love's greater purpose. May we save as you save, to be a beacon of light to the world and if by chance our suffering can ease your burden in even the smallest of ways Lord, let it be so. Amen.

One pixel

Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here,  most people : I mean, friends, church,  neighbours, charities, fellow activists, literally,  stop speaking or give-up trying to reach out  to you?

How little they understand of  how tiny our life is.

This picture is 200 pixels; our life,  I declare, feels like one, at best maybe a handful of pixels, compared to the millions of billions  of pixels that make up normal living. There is not much we can do in reality to help. Get to know us and  you too, most likely,  will be disappointed I think.

These beautiful , warm, scented,  Spring days . My wife sits beside me shaking in pain , with  far too many  mind-bogglingly complex and evolving symptoms ,  for me  to try and comprehend.

Here's me;   feeling  like the man  in the Zen story,  chased over the edge of the cliff by the tiger, hanging by both hands,  over the  sheer drop,  onto the  strawberry plant, unable to bear my weight.

In the story the Zen master plucks and savors a strawberry. Best not to let fear, anger, despair, get to you.