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Showing posts from September, 2016

They use our name but they do not treat our disease.

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The use of the nonsense term "ME/CFS", tragically is epidemic.

What exactly does it mean ? To us "ME/CFS"  means "ME/not-ME"......

If you use the term ME/CFS  you are all over the place, because you couldn't  possibly have a clue who or what you mean.

This is because “ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions. 

Myalgic Encephalomyeltis,on the other hand,  is a complex multisystemic metabolic-inflammatory disorder, involving profound dysregulation of the central nervous system , immune system dysfunction, cardiovascular abnormalities, autonomic nervous system dysfunction, formally classified as a neurological disorder,  in the International Classification of Diseases (ICD10:G 93.3; WHO 1992).

 Very few patients in the UK, however, receive any physical investigation or treatment, especially the most severely affected. This is because of decades of denial…

End Carer Poverty !!!

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Unpaid  carers, like myself, save the UK  £132 billion a year.

Yet  those of us who care 24/7 are paid just 0.37p an hour !

Hidden away, isolated,  abused by the community,    trying to cope under the most  intense  emotional and physical pressure : millions of us are outrageously forced to live  in POVERTY.

CAN YOU POSSIBLY  IMAGINE WHAT THAT  IS LIKE ?

In addition, if my wife died tomorrow I would be thrown , exausted after almost 25 years of care, literally onto the scrapheap.

Why  is our contribution to society so devalued ?

Why does the UK Government so disrespect us ?

Why are carers, like myself,  at least not paid the minimum wage ?

References :

Aldridge H, Huges C (2016) Informal Carers, Poverty and Work
http://npi.org.uk/files/8314/6410/7016/Informal_Carers_Poverty_and_Work_-_Summary.pdf

 Carers UK (2016) Evidence for the Carers Strategy

http://www.carersuk.org/for-professionals/policy/policy-library/submission-to-the-carers-strategy

Official UK Policy towards ME ?

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Severe ME : contemplate paralysis if you can

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Stop what you are doing, right this moment. 

That means you cannot move any part of you. 

Your feet are stuck to the ground. 

Your thighs and your bottom are stuck to the seat, whatever your position was, when the noise struck you. 

You cannot change to a more comfortable position, not even an inch. 

Your toes are immobile, your hands are useless, your fingers too will not move a fraction.

You have an itch on your face, another coming to your head.
But, you cannot move to scratch them. 

They are irritating, but impossible.

So however itchy or demanding the itches become, you still cannot move to scratch them. 

Of course you want to. It is a simple enough gesture, quick as a flash in the normal moving world. But no, you cannot move your finger, lift your arm, find your face, move your head, even a degree from where it currently is.

None of these movements are possible, all removed from possibility in one bizarre instant, caused. by one loud, unintentional noise in your environment, beyond your c…

Breaking Chains ! The failure of the PACE Trial

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Before ME took every possible thing you can think of from us, I used to run a nationwide training company, its motto was a Mark Twain quote : “Loyalty to petrified opinion never yet broke a chain or freed a human soul”, I have never stopped trying to live that outlook.
I can’t, for my wife reminds me of it often, it inspired her so much; it is one of the reasons, I know, why we got married!
That same outlook, an unstoppable determination to break free from the chains of untruth, I have found in spades, down all these years, in the ME Community, so aware and outraged are they at their oppression and mistreatment at the bloodied hands of psychiatry, so horrified are they at the forced removal from her family and subsequent death of Sophia Mirza, the forced imprisonment of Karina Hansen and all the countless lives wasted, including their own, laid to waste by a barbaric ideology; the psychosocial movement.
The PACE Trial, purported to be gold standard research, has been finally exposed to …

Stop the MAGENTA Trial !

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The MAGENTA Trial must be stopped. Please sign this petition.

https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs

ME Consciousness in a post-PACE world

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 How can treatment advances be made when so many care givers still have this  'caveman' status where nothing is happening except fire gazing?Dr John Whiting
Rather than being willingly listened to and investigated people with ME have been dumped in a medical desert and left to rot there for decades with :no biomedical treatment pathway or clinical inputno hope or respect nor adequate understanding of the physiological issues involved in their continued suffering. Instead of the clinical clarity one would expect and deserve for a serious disease with severe multi-system dysfunction and long term physical disability, people with ME encounter a cauldron of disbelief, vagueness, confusion, misinterpretation, misrepresentation, mistreatment, physical neglect and denial.
My wife, for example, who has suffered from Very Severe ME for almost 25 years, still has no explanation for her symptoms, the most severe of which, like paralysis, are still barely mentioned in the …