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This is Severe ME

"This is Severe ME" ..an Art Installation from Stonebird :
http://www.stonebird.co.uk/thisME/slideshow/fade.html

Prayers

Linda has never known such pain, has not eaten all day, dreadfully ill. Anyone else you'd get a doctor out but with Severe ME, it is so risky -  a strange on-call doctor and possible hospital admission could kill her.

Please pray for Linda.  We just need to get through the night.


Dr Peter White to the DWP 10th November 1993

This is Dr White's argument why ME and CFS should not be treated separately :

"From my own work, as well as my reading of the world literature, I would not agree there is a consensus that ME and the Chronic Fatigue Syndrome are separate conditions. Because of my research and clinical experience of helping to reduce disability in the chronic fatigue syndrome, I suggest that separating the two conditions may enhance disability. The reason for this is that those who believe in the separate existence of “ME” believe this is a totally physical condition , probably related to immune dysfunction or persistent viral infection for which no treatment is available. On the contrary I think the present evidence suggests that the chronic fatigue syndrome is a genuine discrete syndrome and treatments and rehabilitation programmes are available which address both the physical and psychological factors which maintain this syndrome."

Dr Peter White to the DWP 10th November 1993  
(from the National Archive NB141-1)

meanwhile :


1993

“The performance of the CFIDS patients was sevenfold times worse than either the control or the depressed group.  These results indicated the memory deficit in CFIDS patients was more severe than assumed by CDC criteria.  A pattern emerged …supporting neurological compromise in CFIDS”
(Curt Sandman, Professor of Psychiatry and Human Behaviour, University of California School of Medicine: Memory deficits associated with chronic fatigue immune dysfunction syndrome:  Biol Psych 1993:33:618-623)



....doesn't it  just prove Professor Hooper's point ?

"
For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on “medically unexplained fatigue” whilst ignoring cardinal symptoms of ME is a travesty of medical science."

Professor Hooper to Sir Michael Rawlins 2010 http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm


Carer learning is so important

(I posted this on the Carer support site Carewell this morning : http://carewelluk.org/)

Look up “Carer Learning on the web” –the results are SO boring !!! Why ??? The traditional image of carers is that they are tired worn down - living an unimaginably dull overloaded life; the imagery often used seems to back this up. Caring is hard, it is exhausting, it can be isolating – that is true, however I am still me . I want to be seen for who I am – for me ongoing learning is essential on all levels : for my head, my body, my survival, my spirit. Words cannot begin to explain my passion for carer learning – so , using all the skills I have learned (!) - I've built a special web page for this article : 

http://www.stonebird.co.uk/carerlearning/carertimesbig.html

 I've spent the last 19 years caring full time for my wife, who has Very Severe ME – every single second has been one of agony and struggle. In the spaces in between though, in snatched moments , I have achieved an MA , two Counselling Certificates and a Diploma in Advanced Web Design. I have just spent the last year studying Animation skills - and I FEEL GOOD !! I'm buzzing.... The discipline of learning, the sense of achievement is good for self-esteem, confidence – all the things that being a full-time “lowly” carer can so easily knock out of you.

 Practically I have been able to help my wife so much more by having the confidence the MA has given me, to advocate, to argue for a proper biomedical service, to publish academic peer-reviewed articles – to back-up my case, to build and run Stonebird, my campaigning website, which reaches out people with ME right around the world. Next year my aim is to study to be a Life Coach – if I can get the funding that is; I pray I can. 

Being a full-time Carer is to live in poverty; that is just how it is in the UK. Where I live I can apply for up to £200 a year. It helps – but for serious learning, I desperately want to do a PhD – it's hopeless . Why should motivated carers like myself be blocked from those learning routes ? I have basic webskills under my belt now , I live and breathe CSS3 and HTML5 – yet I want to learn so much more – frustratingly the professional -level course fees in Graphic Design are way out of reach for someone , like me, struggling on Carer Allowance. 

 I 'm hungry for learning –but I need much more than the “Look after yourself for Carers” fare – which is what you tend to get when you look up carer learning. Come on you Carer Organizations : wake up !! Learning has given me so much ; self esteem, interest, a channel for my energy and passion, excitement, interest, validation, usable skills, qualifications.

 It has been more than a life line... It is empowering me !

Like the Morning

This week has been particularly horrific, with excruciating noise sensitivity making life beyond impossible.

In the video below, I explain how each day is a new beginning - full of hope....that is one of the ways I survive, as a carer.

A long slow torture unto death


Who am I?
I am head pain raw and hurting
Hammering deep inside
Where nothing can touch me.
Who am I?
I am never-ending paralysis
Numbing, invading, constricting
Taking all thought and action whenever I choose
Who am I?
I am pins and needles
Vast unimaginably bold and painful
Flowing screaming irritating through inert immobile limbs
Who am I?
I am brain fog
Blank, demented nothing
Blanketing out memory, imagination, feeling, thought, emptying life
Who am I?
I am noise sensitivity
Piercing ears, torturing mind, shaking body
Powerfully Summoning paralysis
I bring isolation and desolation
Who am  I ?
I am Light sensitivity
Painfully bright, piercing and sharp
Shutting down beauty and all things visible
Who am I?
I am pain
Burning throbbing itching hurting
Remorselessly assaulting constantly  and unremittingly
Who am I ?
I am muscle fatigue
Collapsing, irritating, unreliable, pain filled weakness
I cause failure to function , falls and  immobility
Who am I?
I am sleep disturbance
I bring  torment with nightmares, sleeplessness then sleep-fulness
So deep you cannot escape me
Who am I?
I am gut pain,
burning, swelling, irritable,
I hurt and distress at my whim, impacting  everything even your breathing
Who am I ?
I am food sensitivity
I deny you pleasure and choice even to the point of starvation and death
Who am I?
I am Multiple chemical sensitivity
Poisoning, nauseating, tormenting
Denying you access to normality
Who am I?
I am  numbness
Stealing sensation, ordinary feeling and reaction,
Dulling the world , creating danger to heat and touch as I go
Who am I?
I am Spasm
I shake at my own will in my own way at my  own pleasure
Rendering body and mind unable to function
Who am I ?
I am Post - exertional fatigue
Causing deterioration hours and days after you have exerted yourself innocently
I  damage, exhaust, stop you in your tracks, make you more ill like on a roller coaster ride
Who am I ?
I am malaise
You will never escape me for I lurk within you constantly undermining you
Forcing you into bed, forcing you into  isolation and inability
Who am I ?
My name is Myalgic encephalomyelitis
Though I have been hidden in a sea of denial, downplay and negation
Presented as fatigue , laziness, malingering , fear of work and wrong thought
Who am I?
I am your worst nightmare
Waiting round the corner to assault you and steal your life  too,
Only then will you realise and it will be too late to do anything
That I am so much more than tiredness
I am a long slow torture unto death.

We have fallen

We have fallen
Into a nightmare
Abyss
Of agony
Torture
And despair
Invisible
To most people
There are no answers
There is little help
Just agony
Noise abuse
Chemical assault
Without
And within
Our boundaries
No support
No solutions
No tolerance
No understanding
No way to tolerate it
Or stop it
Our life
Is indescribably
Bleak
And we are free falling
To seemingly
Nowhere.
Meanwhile
People with
Severe ME
Kill themselves
Or die from neglect.

F..the MRC


I was thinking of setting up a new ME Group called :

Fostering Understanding, Competence,  Knowledge, Truth , Hope, Equality , Medical Research and Care.

..trouble is , look at what you get when you put all the first letters together !

What a coincidence.


25% Group and Stonebird : Do Not Mess with Severe ME

The 25% ME Group &  Stonebird announce the publication of :

Do Not Mess with Severe ME - provide a proper medical service

The document can be downloaded from :