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Showing posts from December, 2012

Don't be a "f...r" in 2013

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10 Requests

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1 Respect  my reality, don't undermine it.
2 Listen accurately to me
3 Don't try and fit me into a theory that negates my experience
4 Never forget there is a post-exertional autonomic reaction in genuine ME and always take it in to account.
5 Look for the  underlying physical dysfunctions in ME and name them accurately.
6 Write  accurate validating helpful medical  reports
7 Do not use the term CFS to mean ME or use any other variation that incorporates CFS in it.
8 Work  in genuine partnership with me if you want to help me.
9 Never dismiss my physical reality  just because you cannot  understand it or misinterpret it through ignorance.
10 Offer genuine support, based on equality of person-hood; anything else is game playing and leads to disconnection.

A Legend :the story of Sir Fool'em

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Once upon a time, Sir Fool'em , one of the Knights who say : “ME is real..no, not really, ME is real, no not really..” came riding through the forest ,his bottom wobbling rather painfully, astride a bold  fence.
Although the children rudely laughed, booed and made fun of him, a fat cat ran up : “Come quickly Sir Knight, my mistress needs you.”, he pleaded.
“Fear not, I have brought my magic gold standard with me, from Oxford. I do not even have to see the poor woman. Go immediately and throw your mistress in a swimming pool, that should cure her !.”
At that the entire village clapped their hands in amazement and the Knight's fame spread far and wide , over hill and dale and throughout the whole land .
And the fat cat  lived happily ever after.


Dec 24 th Christians Eve

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We live in a strange out cast world.
I cannot engage with normality.
Even the simplest thing
is beyond my control.
Each year , our world reduces.
It has come to be normal
To live in a bizarre way.
My life diminished to living,
in a single room ,
darkened by heavy
Noise reducing curtains
That attempt to block out
my tormentors,
Whilst in effect blocking me out
further too
from ordinary reality
It makes sense from here.
It is essential ,
Within the circle of never ending agony
And noise sensitivity,
Living in a shifting hostile
Environment
Where every demand
Is too much
And every sound an unbearable irritation
And torment.
But from the outside
The view must be starkly different
Oddly perceived
Little understood
Easily misinterpreted
Too painful to comprehend
And leaves us
Feeling neglected
Isolated
And  pariahs
In a community
That should have been
Loving and enriching
Yet which is strangely
Silent
And absent
In its support
And understanding.
Too ill
Too odd
Too unavailable
To engage
We live in total isolation
Here
In this supposedly
hol…

Transfiguration : Christmas Eve

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It is the moments when we touch the light within us , that flows from the Heart of Love that transfigures who we are. 

In these moments we can see most clearly who we are and know most truly what is True.

When light pours in it illuminates all within and without you so that you can see all from a clear perspective - and that perspective is Love. Not complacency or nicety, not romantic or placatory.

 This Love is Powerful , Awesome in Nature, it sweeps away all untruth and conditions.

 It brings Truth. Not always comfortable , sometimes challenging, but at its centre there also lies a Peace not of the world and a certainty of direction, a deep and profound knowledge that will sweep away all injustice and wrongness and guide you always towards goodness.

Transfigurative moments  bring hope and wisdom, Joy and confirmation that the awesome power of God lives with us and works through us, if we can only open , with acceptance and honesty to this most wonderful Truth.

 He is with us. Alleluia ...…

On the Edge

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We live on the edge of reality, living in the moment , because nothing can be planned and everything needs flexibility. All hopes, expectations , dreams , need to be tentative here and undemanding in any specific time frame. 

This unfortunately is not the way people  live generally and it is not the way the world functions.

Thus we try to cling on to tenuous connections with other people , that are hard to  - whilst they continue to have no concept of  our reality and place unreasonable   demands and expectations upon us.

 Celebrations are painful. We cannot do them. We cannot engage with them in any real way; we cannot see or engage with people at all.  People, then,  are disappointed or disengage from us.

We are left, if we are not careful , with guilt that we have not made more effort, that we have not done the expected. That we have let everyone else down. Of course,  this is some sort of introverted projection : it is  actually the world, society, systems, institutions and other peop…

Leadership

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Who is speaking the truth of ME, so vital if we are  to get a proper  biomedical medical service, offering proper  ME tests and treatments? 

Leadership is required, but we have  to ask where are the true leaders?

Not where they should be it seems.

See the new 25% Group  magazine to discover what happened in Scotland :

"the vote went resoundingly in favour of ME. Just four votes were cast in favour of the "spectrum of fatiguing conditions" option....

Sad to say that neither of the two major national ME charities supported the ME option at the meeting, choosing to abstain on the vote. Neither did MERUK stand up for ME."

(Helen Brownlie Scotland : Holyrood Update pg 13 The Quarterly Winter 2012)

 Read Linda's feature  article on CFS in the same issue -  be determined to seek better leadership in 2013 !

Movement

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The FDA have just  rejected Ampligen,Norway's Rituximab study is on hold, ESME are disbanding, here in the UK  Simon Wessely is awarded a major prize for his contribution to science.

When are  patients going to stand up in force, united by the truth of ME , finally jettison the CFS label, and demand   the confusion of their serious disease with poor criteria and  mental health is stopped ?

The only movement forward is the move away from psychiatry, finally, once and for all.

Discernment - Advent

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It is so essential to have the gift of discernment  in order to follow a safe and true path through life. 

When the way ahead is not obvious and the choices you have to make are difficult, it helps if you can discern, with wisdom , what to do.

In out lives hindsight is always clearer than foresight.  But it is never easy to know what to do in any given moment; and the outcomes are never guaranteed, especially when you have ME, though some are safer than others.

Life then is always a bit of a gamble with  the need for hope , trust  and discernment  to guide you truly.

Discernment  was never more  needed than when you live with  Very Severe ME, for there are so many false paths  and traps ,to end up in ,to your detriment.

It is so important to take control of your life if possible and not rely on others ,which can  unfortunately lead you falsely and unsafely down pathways that lead to harm, whether intentional or not.

 If you know what is true in your heart this will be a good guide and a lig…

Healing - Advent

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There is so much healing needed in ME that it is hard to know where to start, so many systems damaged, so many misinterpretations, so many misrepresentations, so many emotional harms done , even in ignorance, so much cruelty from denial , negation , neglect and isolation, worse so many mistreatments or no treatment at all.

The healing required then is multi layered. There is physical damage, cognitive dysfunction, emotional hurt , spiritual  loss.

How can we hope for healing, if not   in confidence and trust  that God's grace will manifest in  our lives in some profound way that will bring about change and a path towards hope of wellness, if not a miracle, which has been known.......and can  never be ruled out....

Truth

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Few people it seems want to know the truth of ME. 

Why? 

It seems incredible that so much harm can be done by deliberate ignorance, denial and negation yet that is what has happened with ME- institutional abuse , neglect and denial.

With so many people seriouly  ill, it seems hard to believe that such a tactic can work yet seemingly it has, to the detriment of peoples lives.

If people look with honesty and integrity in their hearts and see the Truth shining there so obviously borne out by the most severely affected, how can they carry on living their lives without shame and embarrassment at their core?

We simply do not understand it. So many people complicit in denial, whether institutions, doctors, nurses, social workers, friends, family, associates.

Is the reality so frightening, so challenging or just too much to bear? What are the gains of covering over the truth and burying it in a sea of fatigue, whilst ignoring its true neurological nature?

Can anyone say? 

Because we surely do not und…

Energy

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What can be said of energy? There is profoundly little available with Very Severe ME.

 Energy is so precious but so elusive.

A thought can be as hard if not harder to make than a movement.

People can drain your energy or uplift you without realising.

Every single moment is a moment where there is not enough energy. 

Hard to imagine if you have it and take it for granted.

Terrible when you feel it draining from you literally, hurting you as it leaves.

In these circumstances any energy to function at all seems to be a grace.

It is so important then to not get caught up in the negative draining energy of others and to  remain always  in hope that there will be enough energy to live.

Fruit -Advent

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What are the fruits of a life of extreme suffering? Not much one might imagine; but  it is how we look at our lives that frames them in a context of hope or negation.

We choose to look at the fruits of our lives with joy and hope. 

We appreciate the small things that others would not even notice.  The comfort  of the sunshine , the joy of  feeding a robin, the delight if seeing a ladybird sheltering  on a twig, the beauty if a flower grown specially from seed.

We survive in extreme circumstances that few would be able to tolerate or bear and yet we still live in love.

 This is the greatest fruit of all : to have  stayed  and grown in love. And that love brings forth fruit every day in the gift of service we give to others , through the web site, the book on Severe ME, the spiritual books , the countless  hours spent on fighting for  proper biomedical services, the articles, comments, letters written, participating in Lost Voices and the film Voices from the Shadows.

All these things are fr…

Bounty - Advent

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It is not always easy to see the bounty that we have been given through the year. Looking back, it has been so hard in so many desperate ways, yet still, there is bounty, if we look with eyes of love.

There have been kindnesses through out the year, kind words, unforeseen gifts, achievements beyond expectation, support from unexpected places, hope in the darkness, sweet memories of our beloved dog; that  has been our bounty and our comfort through the year.

 Far better to focus on that than to remember the disappointments, negation , abuse  and losses that we are trying to get over.

Freedom-Advent

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What can we say of freedom , when in every way it seems so severely restricted ?

 If only there was the freedom of a proper health service for ME.

 If only ME were set free from its wrongful association with Chronic Fatigue,

 If only  people were free to see  a full range of adequately knowledgeable biomedical  consultants for their neurological disease,.

If only we were all free from the taint of psychiatry, which downgrades and demotes the serious physical illness we actually have.

Freedom then is not freely available, in so many ways, for us -  but we have the freedom to wish, to hope, to pray, to speak up for a proper medical service, to demand that  our needs are  heard and met.

This then is the freedom we  actually have. Let us use it wisely and freely.

Trust - advent

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Trust is so vital to living without fear, yet Trust, in ME world, is so easily violated, damaged, broken, lost.

It is essential to know who you can Trust and that is not easy or obvious unfortunately.

 Trust can be so easily misplaced in a world where nothing is what it seems and everything is skewed by psychiatric misrepresentation.

Who then can we Trust? We must Trust in our selves, in our own knowledge and experience in order to stand firm against the wave of fatigue denial flooding us.

Trust comes from deep within and is ultimately rooted in faith, belief, grounded in overarching principles that keep us safe and keep us sane  and focussed on what is true and right in a world  of denial and potential harm.

This deep inner Trust is a strength and a wonder.

Denial - Advent

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Denial has a powerful affect. It can either destroy you or it can confirm the truth to you.

The denial of ME in the face of the sheer hellish reality of living with it makes us strong, makes us speak out, makes us fight harder for Truth. Because ultimately denial can never win, because it comes from untruth and it must ultimately be exposed.

This is what keeps us going - our knowledge of the true reality of ME , the suffering caused by it, which cannot be  hidden away or falsified, negated , downplayed, negated, ignored, denied forever.

The Truth ultimately must stand firm because it is so. There is nothing that can deny that - that is where integrity and  true power flow from. The Truth  must and will  be heard in the end.

Understanding (2) - Advent

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When finally you understand the  political and medical negation of ME -  in a fabricated sea of fatigue and vague definition, what can you  be left with other than anger?

It is hard enough  to cope with  the severity and  torment of symptoms, but when you then experience denial, mistreatment, lack of proper testing, misinterpretation - a negation of the physical reality and most serious neurological symptoms,  leaving people vulnerable, damaged, mistreated or not treated you have to ask what is this all about?

You have to understand what is going on in order to survive , because you simply fall off the equality ladder and into a sea of relative views and   personal opinions.

 You lose respect and you become interpreted in a variety  of incomplete and  limiting terms that mean nothing to you and have nothing to do with the serious severe illness and system dysfunction that you actually have.

This is the understanding you need, if you are to avoid abuse and harm. But even with it, it become…

Grounded - Advent

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With ME there is so much confusion, misinformation, misrepresentation around, that to survive you need to be grounded in truth to survive.

This takes time and effort, especially because very few people really know the truth of ME.

You have to learn who to trust and when to trust, how to determine who is coming from the truth, who will will not harm you, who it is safe to see.

The wrong person can do so much harm.

The wrong treatment can be devastating and dangerous.

The wrong interpretation can be utterly damaging.

It is not only important that you are grounded in truth, it is important that the person you see is grounded in the same truth  .

A matrix of truth is so important to keep a person with ME safe. The importance of a grounding in truth cannot be overemphasised.

Transcendence : Advent

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It is essential to be able to transcend the daily, moment by moment assaults of the physical body, if you are to be able to find meaning, hope, light in the darkness of Severe ME; without this ability the physical reality can be overwhelming and bleak.

Transcendence enables peace to flow, hope to prevail, comfort to be found, even joy to be experienced, even in an utterly tormented body with no  physical relief from pain .
 For it comes from Grace not of the world .

 It comes from God Himself.

Absolute - Advent 8

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Living with ME you experience the absolute reality of the physical suffering, so often denied, downplayed, side tracked and over- looked. 

It is this absolute truth which provides the strength to keep speaking up, to keep pushing for proper medical services that meet need, to keep showing what severe ME is really like when you are incapacitated by daily , neurological symptoms , that most people cannot begin to imagine the experience of.

 It shows you who knows what is real, what is true, what is right. It gives you an absolute clarity about all that is wrong , all that is misinterpreted and misrepresented.

 It gives you the absolute certainty you need to keep on going against the tide.

Understanding : Advent 7

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It is so important to have understanding of our situation in order to take stock and make effective situations. Without understanding there is little clarity and often confusion or stuckness.

Understanding is the key to living, the key to choice and right decision. Without it we flounder, whether it concerns our own situation or another's behaviour, whether it concerns information we need or knowledge  we do not  yet have.

Understanding leads to awareness and awareness leads to possibility, new vision, hope and a way forward. Understanding can bring change and when that understanding is filled with the  awesome energy of love and prayer, spirit and power, miracles can happen and new ways can be discerned. 

Understanding then is the key to opening up our lives and our  future.

When will there be a Public Inquiry into ME ?

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When is the neglect, abuse denial negation and downplaying of ME by wrongfulpsychiatric involvement and interpretation going to stop?
 How many more people have to die?
 How many more people who are tormented and physically suffering , in agony for years, to decades, will have to endure the misdiagnosis, misinterpretation by doctors and others and the misrepresentation in the NHS and the media ?
When will sense, honesty, integrity, genuine concern ,compassion and scientific research with proper, specific ME criteria, win through?
It is devastating to have an incurable disease, but to have one that is disregarded and negated, knowing you are left on the edge of survival and society because a group of powerful people representing vested interests chose to spread confusion and untruth about this serious physical disease , chose to complicate the illness and bury it in a sea of generalised fatigue conditions is not only shocking and unfathomable to the sufferer, it is way beyond unacceptable.

A Video for the FDA

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Advent 6 : Temptation

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There is a temptation, when life is a struggle, to get bogged down in resentment, blame, oppression, negativity. 

There is a temptation to give up fighting, to give up speaking out, to feel so ill and exhausted, so stressed and preoccupied with living, that we lose sight of hope, light, vision, truth, justice.

It is a hard path :  to not give into the temptation to blame others for our circumstances, to feel victims of persecution, to feel helpless and hopeless, to feel diminished.

Prayer leads us back to the presence of goodness and a greater force for good in the world. Prayer strengthens us and brings the whole universe to  our aid ;  it opens up new possibilities where none seemed possible.

Rejoicing

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We rejoice  today that  the Countess of Mar has spoken up so powerfully for those who have no voice, for those who are so isolated and who can barely get through each day. We rejoice especially when we hear the truth of ME being represented ; sadly it is  a rare event and to be rejoiced over.

We find as our lives become smaller and smaller so the things we rejoice for become clearer and more visible ,the smallest things, insignificant to most , can bless our day and make the difference between  happiness and despair.

Advent Day 4 : Transformation

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Perhaps Christ's greatest agony was the total experience of abandonment on the Cross. So too, it is ours.

Almost two decades of deep suffering have led us to this place - where there is only pain  , the agony of helplessness , never-ceasing torment.

Only those who suffer deeply know this place.

Is transformation possible then ?

Perhaps it is only by the grace of God that anything good can come from here.

Reframing : Advent Day 3

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You might think that there is no greater example of reframing than the way ME has been reframed  to be CFS. 

This was done by vested interests and its impact damages the Truth and seriousness of ME. Framing can be used  in a variety of ways to see what is true or to limit truth.

Frames are powerful things. How we frame our lives, the stories we tell ourselves and others, the impact we have can be small and narrow, limiting, stuck or huge and vast and open to possibility.

If we focus on the glass half empty it will always appear so no matter how full of potential the other half is.

The frame we put round our reality can so limit us : if we do not see outside our own  narrow frame of interest, if we do not  see our own power and our own goodness and our own ability to change things and focus on our capacity to love and create.

 We don't necessarily see our own  goodness and our own wonderment and our own power.

Today then, this moment  in fact  , is a moment where we can dare to look and …

Power : Advent Day 2

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What is important about Power is to believe in your own Power in any one moment, to bring about change, to break a chain, to set people free, to free your self. 

Equally important, in any one moment , is to not give your power away to any ideology,  to other people's opinion,  to any person or system, or authority.

True Power  does not come from status , wealth ,authority . It comes from integrity - and a humble encounter in truth, that has nothing to do with playing games, with puffing up ones ego, with coming from fear.

It has everything to do  with love and genuine freedom. 

Power is the fruit of Truth, which cuts  through hypocrisy, arrogance, self importance, power playing and abuse with a  blade of light ,which when wielded wisely brings inner peace , harmony, healing, abundance, justice. 

Goodness is at its heart. It lifts, inspires, guides, aids; through the Power of Grace.

Advent : Day 1

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Without God my life is barren, extreme, bleak and horrendous. I cannot exist without the truth of God , the energy of love, the brightness of hope to shine in the cracks between moments of tormented agony.

For me hope is a fundamental aspect of living. It is not some fanciful idea or some achievement yet to manifest, it is the hope in the very essence of being that is utterly radiant, utterly beautiful, utterly whole and complete , brimming with energy that can and will heal the moment, just by coming aware of it and feeling the goodness of it.

Without hope life is grim, desperate, desolate, lacking in vision, lacking in truth, lacking in beauty and there is nothing to console you. It is the antithesis of life and it must be wrong. 

Yet it is where so many people  live.

Hope binds us to truth, brings comfort and consolation  , blesses the whole world. It lifts us into life itself and renews us when everything else fails.

You can place hope in possessions but that is short lived, you can pl…