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Showing posts from August, 2018

AN APOLOGY IS NOT NEARLY GOOD ENOUGH

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What do you say, in the morning, when your inadvertently making a noise or your sudden movement, or  your touching her at the wrong time has utterly destroyed, has broken beyond repair any hope of this not being yet another hideous day of unbearable torture for your wife ? What do you say, all the day long, as every single noise, from you, from the neighbours, from the environment continues to plunge her ever deeper into unimaginably awful illness? What do you say, in the dead of night, when your wife’s body is in too much agony to go to sleep, when her head is exploding in pain and there is not a speck of comfort for her, no possibility of relief, anywhere? What do you say at 2 am in the morning, when with empty hands, you are digging as deep into your ragged, screaming spirit as you possibly can for answers? What can you say, after 26 years of non-stop suffering, like this? Knowing that the reason why we are stranded in this hell
is precisely because the big ME Charity’s have collude…

ME : The Fatigue Cover-Up

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ME IS A MULTI-SYSTEM disease with many organ and bodily systems affected, producing a myriad of symptoms; it  was the  documented biochemical abnormalities in ME patients that led to
the WHO classification of ME as a neurological illness.

Before the onset of ME many people enjoy a healthy lifestyle, however an infectious process caused by a virus, or a bacteria could trigger the disease especially if the person’s neurologicalor immune system has been compromised. (Carruthers et al 2012 )

The complex range of symptoms in ME include :

●Dysfunctional immune system. The illness starts with an acute, infectious-like episode in many people.
●Underlying intestine disorders– dysbiosis, gut permeability, reflux.
●Problems of oxidative stress leading to DNA impairment, impaired proteins and structures.
●Faulty mitochondria – shortage of oxygen and energy supply in body.
●Cardiac abnormalities, heat defects, heart not being filled completely, too little blood volume, poor blood circulation.
●Ne…

A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH GUIDE FOR ME/CFS

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Stonebird :
A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH
GUIDE FOR ME/CFS
Dr Charles Shepherd and Dr Abhijit Chaudhuri

The MEA recently kindly sent me their "Purple Book" for review. It is so good that my well-thumbed copy now occupies a privileged, permanent place beside my computer. I have only had it two days and cannot live without it!

If you have ME then this is a profoundly useful overview of the disease.

If you want to research into or know more about ME, then you will want this treasure trove of information with its stunning coverage of Terminology, Epidemiology and co-morbidity, Medical Research, Management including pharmacological and non-pharmacological treatments, Prognosis, just to name a few of the areas .

The famous Purple Book is a gripping read!
Are you confused about the possible role of Epstein-Barr virus/glandular fever, Parovirus, Post-Poliomyelitis, Giardia, HHV6 in ME ? Here these complex issues are laid out for you in a b…

Paintings by John Ashenfelter

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There are only a couple of ME Charities that we fully respect and totally support. One of them is the incredible Grace Charity, which has a new Art Gallery! You can check out the web page here: https://www.thegracecharityforme.org/projects/art-gallery/…/ The paintings are done by John Ashenfelter, an accomplished artist. His work is both innovative and intuitive, using gentle colours; blues, yellows, greens, pinks and purples predominantly. John’s intention is very much to bring healing energy to all who see them. The proceeds from any art sales are for the benefit of this wonderful ME Charity. We wish them luck and many blessings.


WE REFUSE TO GIVE IN

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WE REFUSE TO GIVE IN We are a forgotten people.
Such suffering to be so repeatedly
Ignored,
Misunderstood,
Negated.
How can this be?
The world has grown hard hearted.
The truth has blown away on the wind.
Yet here we stand
Against the storm,
Like broken,
Battered masts,
That refuse
To fall
And disappear
Completely
From existence,
To be swallowed up
By the ocean of ME
That tries to
Consume
Us.
We stay.
We love.
We care.
We share.
We speak.
We know.
We remain
As long as we can,
In defiance
Of the ignorance.
In defiance of
The denial.
In defiance of
The cruelty.
In defiance of
The arrogance.
In defiance of
The neglect.
We are tormented,
Agonised,
Tortured
Yet down-played
By the world.
We demand
That we are recognised.
We deserve that our lives
Be treated
With respect
We deserve that our bodies
Be healed
We deserve that the injustice
Is made right.
We deserve so much more than we get.
The wave of true change
Must surely come?
Until that day
We tie our broken masts
Together
And refuse to give in. Linda Crowhurst (c) 2018

WHAT IS ME : A PROVISIONAL LIST OF SYMPTOMS

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WHAT IS ME : A PROVISIONAL LIST OF SYMPTOMS I asked  “What is ME” on Facebook. Here is a provisional list of the symptoms that were identified. Some of the main symptoms such as Pain, Cognitive Dysfunction, Sleep have been broken down into more detail, based on people’s different experience - to give a bigger picture. It is staggering what so many are experiencing while their awful reality is ignored, dismissed as “Fatigue”. Paralysis:
Total
Partial
Heavy limbs
Muscle weakness
Pain:
chronic nerve pain
Muscle pain
Joint pain
Jolts of pain
Painful feet
Glandular pain
Sore throat
Hoarseness
Swollen glands
TMJ
Trigeminal neuralgia
Occipital neuralgia
Chest pain
Costrochondritis (inflamed chest wall)
Skin crawling sensations
Burning
Itching
Stabbing pain
Sharp pain
Aching
Skin pain
Vein pain
Inflammation
Menstrual issues
Swelling
Inflammation
Headaches
Migraine
Head pain
Neck pain
Tinnitus
Feeling of toxicity
Breathing difficulty
Air hunger
PENE / PEM
Cramps
Pins and needles
Tingling
Peripheral neuropathy
Tremor
Muscle spasms ( shaki…

VÅRD AV PERSONER MED SVÅR ME

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I am delighted to announce that our 25% Group/Stonebird Care Guide has just been published in Swedish. Thank you so much to Magdalena and Karin for this. We really hope it helps! http://stonebird.co.uk/CN1.pdf Here is the English tradition : http://stonebird.co.uk/CN.pdf

ME AND FATIGUE

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ME AND FATIGUE ME is currently being misrepresented and misinterpreted as CFS, a fatigue condition with treatable sleep, pain and fatigue,  for example in the latest NICE Scope document. This does not represent the reality of ME, especially that of the most severely affected, who experience severe multi-system dysfunction and neurological symptoms. ME is characterised by Post-Exertional Nueroimmune Exhaustion (PENE), unlike normal fatigue, proportional to the intensity and duration of the person’s activity, PENE is
characterised by a pathological low threshold of physical and mental fatigability, exhaustion, pain and an abnormal exacerbation of symptoms, involving a profound dysfunction of the regulatory control network. ((Carruthers et al 2012) Profound fatigue is common in neurological diseases such as Parkinson’s disease, multiple sclerosis, post – polio syndrome. ME fatigue, however, is actually worse than post-cancer fatigue.(Meeus et al 2009) Fatigue and severe disability are ac…

THE CRUSHING PHYSICAL BURDEN OF ME

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There is clear evidence that ME is not the same as depression or any other psychiatric disorder. In 2015, the influential USA Institute of Medicine, stressed that ME is a medical, not a psychiatric or psychological illness.(IOM 2015) Neuroinflammation has been found to be widespread in the brain areas of the patients with ME and is associated with the severity of their neuropsychological symptoms, (Nakatomi 2018). There are over 9000 articles in peer-reviewed medical journals showing frank biological pathology in ME. Evidence of ME as a chronic physical illness has been growing for decades; there is now irrefutable evidence of ME as a complex multi-system illness with neurological, immune, endocrine and cardiovascular dysfunction. Many diseases have been linked to selected channelopathies including diabetes mellitus, dilated cardiomyopathy and cystic fibrosis. (Phoenix Rising 2012) Every ME case definition concludes that Post Exertional Malaise is an essential feature of ME; a small …

WHO CARES FOR ME?

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STONEBIRD
A NEW FREE CARE GUIDE  WHO CARES FOR ME?
A universal care approach to Myalgic Encephalomyelitis ( ME) Out statement on Stonebird that ‘you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters’, underpins our approach to caring: Provide the best care possible, in the best possible way, at the best possible moment.... Download our new guide here:
http://stonebird.co.uk/WHO.pdf

PARALYSIS CITY

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My world is full of colour, Linda's is black and white; that is the difference. Every day there are numerous opportunities for me to express, enjoy myself, think about things, write songs, play guitar, listen to music, write books, curl up and read, run with the dog, walk, cycle, dig, paint, bake, soar, fly free, jump in the car, pump up the stereo. For Linda none of this is available. Her reality, way, way below normal experience, where "nothing is possible" is far too unbearable to contemplate:

And here I am again
Trapped in ME world
In paralysis city,
Where every noise
Loud or small
Negates me.
All hopes, dreams,
Possibilities
Are not real.
I have to face that fact.
The gap between me and them
Is vast
And unquantifiable.
The emptiness of the void
Between my reality and yours
Is endless
And unimaginable to you
Yet tangible
With form and shape
To me,
Solid as rock.
The wall between us
Is invisible as glass,
The difference in life
Is hard as iron
The strength of its endurance
Is strong as an o…

REMEMBER US, REMEMBER THEM, REMEMBER ME

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Severe ME Day, Aug 8th 2018 We carry them with us
Every day,
In our hearts
And our memories.
They are never forgotten.
Each one has their own special place.
They inspire all that we do.
Each time we speak up,
We cannot forget the injustice,
The unquenchable pain,
The intense, yet mostly hidden, suffering
That led to their deaths.
Each one is precious.
Each person touched our lives
Inspired us,
Helped us,
Were friends with us
Reached out to us.
Each loss is harder to grieve each year.
Each dear soul lost
Is a pain that burns deep
Pushes us forward
When the going is tough.
We remember them
With love.
We remember them
With tenderness.
We remember them with joy.
We remember them
And weep.
We remember them,
Their own sweet lights adding together
To shine a path of inspiration
And clarity for us.
We must never forget their passing
Their pain
Their reality
Their severe level of illness.
Their loveliness.
It must never be denied.
It must remain as a beacon
Till justice and progress prevail.
Their light is a call
To keep going
To keep …