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Showing posts from October, 2012

Riding the Wave; still ( Part 1)

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There are many it seems ,still flipping their lid,  over   those who have insisted on using the name ME , as opposed to ME/CFS in Scotland ; their argument goes something like this : ME is not taken seriously by the medical establishment, Scottish MP's  advise  that their support can  only realistically be maintained if both ME and CFS are acknowledged- and given the context : a heady mix  of politicking  baggage and "background"; this initiative is not just jerking people around, it is a "serious risk" to all that has been achieved .

Indeed, on Oct 24 it was announced that  the Cross Party Group now no longer exists.

I imagine that, like me,  those of us outside the situation find the details difficult to fully get a grip on  ; what we do know is that passions are running high; it is  the most extraordinary situation. You'd expect flags , bagpipes and dancing in the streets, not the place to be in an uproar - with resignations, confusion and  very public con…

Voices From the Shadows in Hexham

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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.

For more information on the Hexham Screening , please see :
http://www.stonebird.co.uk/greg/bootstrap/hexham.html



The agony of living with Very Severe Me

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Here is my list :
1 The agony of knowing that I have not had proper , full, intelligent medical investigation of my disease or even proper medical recognition and explanation of what is going wrong with my body after 2 decades of being massively physically and cognitively disabled and very severely ill.
2 The agony of the denial that exists in the medical profession and its wrongful collusion with psychiatry which harms every body tainted with the diagnosis of ME .
3 The agony of denial of responsibility by the government for its fatigue policies which harm people with ME and its continued misuse of the term CFS as equivalent to ME.
4 The agony of having to trust people who do not ultimately have a clue how very ill and frail I am , who can harm me and damage me and not take responsibility for it, hiding behind wrong assumptions, misinterpretation, and personal ignorance or arrogance , ego and self- justification.
5 The agony of knowing that I have been abused by systems and people…

The Agony of Caring for Someone with Very Severe ME

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There is an agony in caring for someone as ill as my wife, who has Very Severe ME ; I have made a list :
1. The agony of my presence, my voice, my thinking even, my attempts to try and be quiet, increasingly being too much for her to bear.
2. The agony of her total pain, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The agony of the immensity of the illness, in its face we are only a dot - at least that is what came to me in a reflective drawing recently...although a  powerful dot of fire, that will never give up.
4. The agony of the hours spent coping, my wife never comfortable, never finding any relief anywhere, moving from lying to sitting, always being pulled back into paralysis and exacerbation of symptoms.
5. The agony of feeling less and less confident, hopeful, certain of a cure one day.
6. The agony of getting older, it's been almost 20 years now, realising my body is slowing, is not as strong as it used to be, to help.
7. The agon…

The Great UK PACE Trial Scandal

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Pragmatism : Why the ME Leadership is so wrong

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There's an argument that goes something like this :
“In the real world almost all ME/CFS research is carried out on people with Fukuda CFS ...the only way to sort out the ME/CFS mess is to identify clinical and pathological sub-groups under the ME/CFS umbrella. ”

We could identify it as the pragmatic argument.
Except, what has " pragmatism" ever done for us ?
In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their  scraps. As Fishoutofwater comments :
What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act.


"Pragmatic" Democrats ..sold our health care out to insurance companies. Health…

Please support Jessica

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This young woman, Jessica, with Severe ME, has been taken into hospital in much pain - do watch her brave, heart breaking, powerful video - and please  send messages of support, if you can :



ME, CFS, ME/CFS: Importance of Accuracy and Consistency in Terminology, Definitions, Diagnoses etc.

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CFSAC Testimony - Jill McLaughlin - October 3, 2012My name is Jill Mclaughlin. I have been involved in advocacy for 15 years and have attended many conferences and meetings. Once we realized that our daughter had ME, not CFS, I became an ME advocate.

For the last CFSAC meeting, registration required an "organizational affiliation." The vast majority of patients do not belong to these groups. By the time it was corrected, all of the spots were filled - by these ME/CFS groups. This hardly gives a fair, unbiased representation.

CFSAC

The CFSAC website states that the purpose is to advise "on issues related to Myalgic Encephalomyelitis and
CFS (ME/CFS)."

It is unclear as to what this means. A name change? The purpose of a name change has always been to eliminate  the trivializing and demeaning CFS, which this will not do. We do not need 2 names.

There is no WHO recognition or ICD codes for ME/CFS. The CFSAC Charter and by-laws specify CFS, not ME or ME/CFS. An advisory commi…

I just don't get it !

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Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.
To me its a life and death matter. If you don't wake up and open your eyes to what is going on in the UK, we will never get proper medical treatment and health respect for people with Myalgic Encephalomyelitis (ME). 
 People will continue to take their own lives from sheer medical neglect and people will continue to deteriorate and die from wrong or no treatment.
It seems to me that there is almost total confusion surrounding the illness ME because of the use of the term CFS. Some people may have been diagnosed as CFS, others as CFS/ME, others as ME or ME/CFS. 
Some will have self -diagnosed themselves, others will have seen a GP, some will have gone to a CFS clinic and some if they have been ill long enough may have seen one of the few knowledgeable , who, I would term as 'old school ' ME consultants who knew or knew of Ramsay and hopefully have been proper…

The Pseudo ME Sufferer Movement

Mike left a great comment today on my blog post - The Hourglass Model :


"If you remove the disease from the "fatigue", which is what CFS has become (was arguably intended for), then yes, of course it's psychiatric. There's no such thing as a disease without any evidence/signs of disease process. Simple! No coincidence all the signs and evidence of ME have been struck from the CFS definition by the "international CFS study group" (mostly psychs who believed ME was hysteria) and their mates.

Before the CFS travesty came along, this was always known to doctors, and diagnosing "fatigue" as if was an would have been seen as madness. As a result we have a bogus illness which is just basically a misdiagnosis and get-out-of-jail card for psychiatrists, lazy doctors and insurers/state welfare gatekeepers. 

It very much helps to perpetuate the status quo, as no research findings in a dustbin diagnosis can ever be officially "significant" with re…