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Showing posts from February, 2013

The physio-pathological abnormalities, which distinguish a patient with ME from other diseases

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Is it possible to diagnose ME/CFS ?
(Source : ME/cvs Vereniging Nederland, www.me-cvsvereniging.nl)

This is such an important presentation - to show to anyone who doubts that ME is real !

Professor  K. De Meirleir succiently  outlines some of the physio-pathological abnormalities – which distinguish a patient with ME from other diseases :

Dysfunctional immune system - chronic infections which hardly ever occur in normal people .Underlying intestine disorders– dysbiosis, gut permeability.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 . Exercise capacity very important – in early stages little reduction in exercise capacity, but as years progress exercise capacity decreases quickly- much faster than in normal ageing.Diaphragm starts to function less well- will …

Is ME and/or CFS a disease?

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(Source : ME/cvs Vereniging Nederland, www.me-cvsvereniging.nl)

This is a very impressive presentation.

Dr de Meirleir gives a concise overview of ME as defined by Ramsay, outlines the damage that the word "fatigue" has done, emphasises the pressing need to move away from "CFS" and use "ME", and describes  the growing use of the ICC Criteria - showing how the psychiatric lobby is gradually becoming isolated - although there is still a long way to go.

In the shadows of other people's lives

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I live in the shadows 
Of other people's lives
Bounced like a ping pong ball
From room to room
By other people's noise
The do-gooders pass by my door 
Scurrying on their busy way 
To feel good about themselves
In someone else's life
Not mine 
Whilst I,
I am invisible
I am made to feel a Pariah 
Overlooked
Unseen 
Yet living but a few feet away 
Obscured from view 
And negated 
By deliberate ignorance.

DO NO HARM, DO NO BETRAYAL

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By Diane 
I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly. 

 It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis. 

To cut a long story short, it took a year to get a diagnosis during which time she literally dr…

The Barriers between the person with Severe ME and the world

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This is how Linda describes the agony she is in, right now, No words can express the suffering she is going through.

The new Voices from the Shadows Trailer

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Voices from the Shadows which can now be bought now in nine languages is NEVER more needed than now!

Thirty two thousand angels

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A video made with love for all who have Severe ME.




You may think I am alone all by myself You might think I don't care I am on the shelf You might think I am standing all alone But you're wrong I've got thirty two thousand angels round my head. You might think I am talking to myself You might think I am poor I have got no wealth You may think I am just talking to the wall But you're wrong I've got thirty two thousand angels round my head. You may think I am just crazy in my head You may think I am just lying here in bed You may think that all I do and say is odd But you're wrong I've got thirty two thousand angels round my head.

Lying Thieving Bastard

All my anger about the way the government treats those on benefits, the deepening injustice and oppression, especially towards people with ME, is expressed in this song; please note it is very loud.





Oh my love
You are in such pain
another day of illness
with no relief again
The insurance companies
say it has got to be this way
their lies and deceptions
determine your day.

Lying, thieving bastard
that's what they say

Oh my love
What can we do,
all that we fought for
is broken in two
The government
says it's  the poor who must pay
their lies and deceptions
determine your day.

Lying, thieving bastard
that's what they say

Lying, thieving bastard
that's what they call you

Oh my love
How many must die
their lies taken
for a corporate lie
The newspapers
say that is the way it must be
their lies and deceptions
determine your day.

Lying, thieving bastard
that's what they say

Lying, thieving bastard
that's what they call you

When I am 64 and other false positives : The PACE Trial.

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Greg Crowhurst6th February 2013
“Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being so “ Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html
Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis,  according to Nelson and  Simonsohn (2011). 

Their frightening  paper “False-Positive Psychology,” shows  how  “undisclosed flexibility in data collection and analysis allows presenting anything as significant,” . In fact Nelson and Simonshon statistically “prove” that listening to “When I am 64” by the Beatles can  make you a couple of years younger !

http://pss.sagepub.com/content/22/11/1359.full.pdf+html
The bad news, for people with ME,  as Nature points out, …