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Showing posts from January, 2015

The Way I See Things

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Stonebird
Linda Crowhurst
The way I see things :

Myalgic Encephalomyelitis is being completely ignored.
Chronic Fatigue (CF) is the focus to such an extent that there is now :no body of experienceno centre of excellenceno well experienced medical consultants (with rare exception)no one knowledgeable to turn tono sufficient treatment protocol availableno consistent universal information informing doctors about Myalgic Encephalomyelitis, its epidemic and individual nature, its WHO classification as a neurological,disease, its inflammatory natureno one consistently exploring possible anti- viral treatment.ME is misrepresented, not investigated and certainly not medically treated, it is widely portrayed  as  if its underlying cause  has ceased to exist,as if there is none, as if  it is not a serious disease, as if it is going to resolve by itself and that we all got sick because we felt like it.
ME  has been buried deep within inaccurate, unhelpful, misdirecting terminology : Chronic Fatigue,…

If you do one thing today

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If you do one thing today, let it be to make the resolve to speak up that there are currently no appropriate biomedical clinics for Myalgic  encephalomyelitis and decide that today you will determine to get a better service for your self for your  serious and severe disease.

I do not want to die from this disease . I do not want anyone else to die from this disease or to  kill themselves from despair and neglect.

 Let us say enough is enough. Let us say no more CFS. 

Let us call for accurate ME diagnosis.

Let us call for ME consultants and ME  clinics and ME tests and investigations   and  biomedical treatment. 

Let us call for no more fatigue.

 It is a misrepresentation and misinterpretation of our illness.

I want a proper medical service for ME . I want to be safe. Don't you?

Day Release : One Man's Experience of Severe ME

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It is very rare to read an accurate description of Severe M.E.;  it is even rarer to read a man's experience. I am deeply moved that Malcolm has chosen to publish his account  through Stonebird.

My wife, Linda who has Very Severe M.E. comments :

"Malcolm's piece is extremely moving. It highlights simply yet starkly the ongoing onslaught of a pain filled life and the profound isolation experienced as a consequence. Mostly , this suffering is invisible from the outside yet harrowing moment by moment when lived from the inside.

Anyone who reads this piece, who has Severe ME will be saying YES, YES, YES with every line. Anyone who does not have ME might gain a glimpse into the inner tortured reality and perhaps find new understanding and compassion."

(Day Release can also be downloaded as a PDF from Stonebird :
http://www.stonebird.co.uk/dr.pdf)

DAY RELEASE by Malcolm
My eyes open; there is pain. Like barbed wire squeezing every nerve, a tireless scream. As usual no sleep – ju…

Morally Indefensible

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Rightly outraged.

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25% Group/Stonebird response to “Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial”
Greg Crowhurst, Simon Lawrence
People with Severe ME are rightly outraged by the latest in a long line of misrepresentative articles suggesting that their disease is a fatigue condition.
People are suffering and have been suffering for decades as a result of the misdirection of ME away from a WHO defined neurological disease.(Hooper et al 2007) It is surely time for this to end.
The so-called "psychiatric lobby" have for many years perpetuated the untruth that ME is a "non disease", a somatoform disorder, maintained by abnormal or unhelpful illness beliefs, condemning patients to decades of neglect, abuse, misunderstanding and mistreatment. It is time that Myalgic Encephalomyelitis is recognised as the serious neurological disease it is and separated once and for all from a sea of ill-defined, vague, misrepresentative fatigue, un…

Beyond Words

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It has hit me hard today , the scale, breadth and seriousness
of my wife's cognitive dysfunction. Also sitting beside her this evening, noticing how she tries to ease her massive, crippling pain, now and again with numb, aching fingers.

 There is nothing else she can do. No one has properly investigated her illness. It has been non stop suffering for over 21 years.

 Today I drafted an initial response to last week's paper, widely reported, spreading even more misinformation, about "activity", that has been disproved so many times, it is boring- except that it helps condemn my wife and tens of thousands of others to who knows how many more years of suffering.

 The scale of the injustice being done to people with ME and our relative powerlessness , chokes me. I wish I had the language to express it !

 My worry for my beloved defies description. I sit here today reflecting upon the video, Falling into Severe ME, that I recently posted. Some have said the music is too …

Falling into Very Severe ME

What makes a good GP ?

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What makes a good GP for a person with Severe ME?
One who is :
Medically aware.Knows ME is a neurological disease.Willing to listen.Willing to support.Willing to visit at home.Respectful of hypersensitivity issues, taking them into account, for example noise sensitivity, light sensitivity,touch sensitivity, drug sensitivity.Flexible.Willing to try and proactively find out what is really going on in your body.Aware of the psychiatric misrepresentation and misinterpretation of ME and therefore is not wrongly influenced by inaccurate, misrepresentative reports from unaware practitioners.Understanding.Kind.Attentive.Genuinely concerned.

No Way to Live !

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Unable to move, in intolerable increased pain, even dim light too bright to tolerate, tortured by sound.

No way to live.

We need Biomedical answers. 

We need serious Biomedical investigation. 

We need a new pathway creating for the most severely affected, based on respecting our physical dysfunction and a genuine intention to understand first - then aim to help.

No Help Here !

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You have to figure it out yourselves how to get by moment by moment, if you care for someone with Very Severe ME.

This is a no man's land of medical neglect and isolation where the potential to do harm is multiplied beyond imagination !

Surely the separation of ME from CFS is not too much to ask for ?

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Surely it is time for a biomedical pathway, serious investigation, biomedical treatment biomedical respect and proper research ? 

People with Severe and Very Severe ME should not have the nothing that they get, should have to not live in fear of misinterpretation and mistreatment, at continuous risk of serious harm by ignorance, whether genuine or deliberate.

Surely that  is not too much to ask?

It is not going to happen, though,  until ME is separated from CFS.

Although they are used synonymously  "ME" and "CFS" are not equivalent terms. Myalgic Encephalomyeltis is a neurological disease, Chronic Fatigue Syndrome is a made-up term that encompasses a wide range of fatigue conditions.

Currently some people use the term synonymously to mean ME and CFS are both mental health conditions, some interpret it as neurological; doctors and health and social service practitioners can chose which interpretation they use. This is unacceptable and dangerous for all.

ME does not exist …

Noise-Free Zone

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..I cannot believe that anyone who has not experienced or witnessed it can possibly have a clue about the seriousness of noise sensitivity in Severe ME or even begin to imagine the awful devastation it causes.

Labour, the Coalition and the Biopsychosocial Model

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In this election year it is good to remember that before the Coalition came to power seriously ill and disabled people , found fit for work under the last Government and denied Employment Support Allowance , 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.)
That 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.
Yet introducing ESA and the WCA in 2007, Peter Hain, Labour, described them as “A new, progressive vision for our welfare system .”
As Debbie Jolly points out, up until then campaigners, protesters, advocates, activists and Centres for Independent Living (CILs) had managed to achieve :The Independent Living Fund (ILF)Disability Living Allowance (DLA)Incapacity BenefitAccess to WorkDirect Payme…

Only those who suffer grasp the full reality and horror

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Care for the Carer

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The traditional image of carers is that they are tired worn down - living an unimaginably dull overloaded life; the imagery often used online and in the media  seems to back this up. Caring is hard, it is exhausting, it can be isolating – that is true, however it has much to teach ; I have found it to be an extraordinarily fulfilling pathway to truth, an adventure in love on all possible levels.
As I wrote a few years ago, as a carer : "You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your lifeand how to be empowered."

http://www.meassociation.org.uk/2010/02/me-perspectives-no-4-20-facts-about-being-a-carer-for-someone-with-me/
There are many times however I find myself hanging on by the slenderest of threads , not knowing how to bear another second. But we always come through !!
I am alive, growing, learning, learning more and more how to be real.
This is what I have learned :
Look after yourselfBe ki…

The time to be referred to as being "chronically fatigued" is OVER !

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"..we have been treated as criminals and vagrants. This must end RIGHT NOW! Again, I say "NO MAS!" (Thomas Hennessy)
There are over 5000 reasons to treat ME as a complex , multisystem, metabolic-inflammatory disease, involving profound dysregulation of the central nervous system, cardiovascular abnormalities and autonomic nervous system dysfunction and  ZERO, nada, nil, reasons to treat it as a psychiatric condition.

So:

Why are there  no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis? Why is there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas an…

Severe ME : empty, no thought

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My New Year Wish

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Indescribably illBody unable to moveFeeling disappeared from so many parts of myself:My hands, my feet, my side, my arm, my legs, my lips,my face.Yet pain, fine and constant continues to bite at me and burn meTo throb and scream and resound within me.My life is tediously slow and empty Of virtually everythingAnd everyone.I long for interactionFor movementFor fun