Stonebird

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 ...

(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.

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.

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 durin...

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

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

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.

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

Greg Crowhurst 6 th 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 young...