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

Is it possible to diagnose ME/CFS ?
(Source : ME/cvs Vereniging Nederland,

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 almost stop moving or move less well.
  • The resulting ventilation reduction is quite spectacular and clearly present. The recuperation after minimal effort can be badly affected – taking some people a week to recover from walking 100 yards – not something you find in normal people.
  • Neurological abnormalities – with studies showing the grey substance or brain substance is reduced. 
  • Disorders such as malfunctioning of short term memory, the recalling of words can be severely disturbed – patients thinking they have Alzheimer's.
  • Increased sensitivity to stress, disturbance in the hypothalamic -pituitary-adrenal axis, resulting in reduced cortisol (patients with depression have raised cortisol). 
  • Various muscle abnormalities, malfunction at the molecular level of the ionic channels.

Is ME and/or CFS a disease?

(Source : ME/cvs Vereniging Nederland,

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

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 
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 during which time she literally dragged herself to doctors and hospital appointments to undergo tests and consultations (which were sometimes more like inquisitions from paid torturers).  Although Lili was severely affected and completely housebound from day one, she forced herself to go because she so desperately wanted to know what was wrong with her so that she could have treatment and get on with her life again.  However each visit and test pushed her body beyond its limits.  She was gradually deteriorating.  Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results.  Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted.  Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk'.  

Lili collapsed after her last hospital visit.  She passed out with a seizure, her body violently shook, and paralysis spread throughout her body.  It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down.  She never recovered.  My beautiful daughter is totally bedbound.  She has a diversity of symptoms that seem endless.  (Most of the very severely affected have between 60+ and 100+ symptoms).  The worst thing of all is the relentless, agonising pain.  Widespread pain in every muscle, joint, and organ possible.  She has not had one day free from headache since the illness began. 

 Her whole life now is lived from her bed.  Not her choice for she is a talented artist and photographer and she dreams of walking in summer meadows photographing the bees and butterflies dancing upon colourful flowers.   She dreams of completing her geology degree.  She dreams of paddling in the sea with her nephew.  She dreams of putting on a pretty dress with her hair all beautified.  Such simple dreams.  Her dream of having children has been snatched from her by this awful disease that others misunderstand by thinking it's just about feeling tired or attention-seeking.  The above are some of Lili's dreams but in reality, she would just love to be able to do some of the everyday things that others take for granted.  Lili longs for simple pleasures such as having a bath, cleaning her own teeth, reading a book, eating solid foods, cuddling her nephew, having a conversation, stroking her cat, looking out the window in daylight, going to the toilet rather than using a slipper-pan, and having a hug. When I hear people moaning about standing in a queue, I think 'my daughter would love to do that'.  To be able to get up, get dressed, walk, travel, shop, have a conversation, and stand are such blessings that people forget they have.  And to be able to do all this without unimaginable pain is a further blessing.

My amazing daughter has such a positive view of life.  I'm stunned that she's not depressed or angry.  Although she sometimes has her low days, her courage and inner strength are immeasurable. Not a day passes without seeing one of her magical smiles which sometimes just breaks my heart.  

Her days are spent in a darkened room and in as much silence as the outside environment will allow.  She is hypersensitive to light, noise, odour, vibration, touch, movement, chemicals, some foodstuffs, and medicinal drugs.  She can hear a vacuum cleaner five houses down the road, smell the fabric softener on people's clothes and feel the vibration of a humming fridge.  All these things can send her body into a crash at any time.  

She is unable to sit or stand due to being moribund with pain, orthostatic intolerance, paralysis, blackouts and much more and so her bed is her companion twenty-four hours a day.  She is unable to chew and has swallowing difficulties.  She can only wear light, soft stretchy pyjamas which have minimal contact with her skin.  Her skin is always 'on fire' like it's been grated with a cheese grater.  Her description. I have to cut her pyjama tops off (when she can tolerate a change of tops) because any movement causes her indescribable pain.  She has difficulty speaking sometimes and so asks me to be her voice.  She calls me her gatekeeper.  I do my best to protect her from well-meaning visitors and the noise, light, odour, vibration etc within the house to minimise the damage to her health.  However, I am limited to protecting her from the outside world.  Aircraft, motorbikes, fireworks, DIY, sunshine, heat, barking dogs, roadworks, lawnmowers, parties, environmental smells...the list is endless.

Another thing that I try to protect her from is people's attitudes towards her illness and therefore, towards her personally.  Sometimes these misunderstandings and judgemental opinions come knocking at your door. 

Last year we had to move house.  There was no choice.   Lili and I knew that it would be a huge cost to her health and in the back of our minds, we knew (but didn't verbalise), it could have taken her life too.  It didn't but it came very close.  With a move comes new doctors.  I registered us both at the local surgery straight away and booked a home visit.  I won't go into details but the GP was an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out.  I remained polite but firm.  The next time I called the surgery I requested a different GP.  She came as if she had already prejudged us.  I asked for oxygen for Lili.  The doctor refused.  I asked for morphine.  Another refusal.  However, the doctor was very keen for Lili to do GET.  Not again, we thought! We had already spent three years re-educating Lili's previous GP who also suggested GET as did  the Consultant who diagnosed her.  Was there no getting away from this torturous damaging 'treatment'! 

Does the Hippocratic Oath to do no harm now state 'except for all those with myalgic encephalomyelitis?'  A couple of months later there was a knock at the door.  It was a social worker.  One of the doctors (who wished to remain anonymous) made an allegation of abuse/neglect.  I was in a state of shock and felt sick to my stomach.  To hear the words 'suspected of abusing your daughter' is something that will haunt me for the rest of my days.  The accusing doctor said that Lili was 'being kept in the dark', 'not allowed to speak', 'nursed in bed for 24hrs for 2 years', 'denied hospital appointments'.   The film, Whatever happened to Baby Jane?' springs to mind doesn't it!  The case is still ongoing.

To all those who care for their severe M.E. loved ones, my advise is find a supportive GP.  S/he is your biggest ally...or enemy.  Having their support is important because they will approve benefits and fight your corner.  They don't have to be clued up on severe M.E. as they can learn on the job so to speak.  They only need to have an open mind. 

 Next, read as much information as you can about M.E., especially severe and very severe M.E.  Read books and papers by Ramsay, Dowsett, Hyde, Hooper and so on.  Join true M.E. groups, such as 25% ME Group.  Learn about the latest biomedical research.  

Regularly visit real M.E. websites such as Stonebird, Hummingbird, Invest in ME, Dr Speedy's NICE blog, Tymes Trust, ME Action UK and so on to keep up-to-date.  Print out some of the information and keep it in a file so you have evidential papers at hand should you need them.  Read Greg Crowhurst's book, Care for Someone with Severe Myalgic Encephalomyelitis as this is packed with information which can help you protect your severe M.E. loved one and yourself from ignorant tribal thinking. 

 Knowledge is power.  You don't have to worry about being politically wordy.  Just speak from your heart.  Talk about what you know.  Your experience is knowledge.  Only you and your loved one knows the truth about the how myalgic encephalomyelitis affects your life.

Beautiful blessings to you all!

* My heartfelt thanks to Greg and Linda Crowhurst, Criona Wilson, and Christine and Tanya Harrison (BRAME) for your support, love and advice. 

The Barriers between the person with Severe ME and the world

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

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

Thirty two thousand angels

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

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

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

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.

Greg Crowhurst
6th 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

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 !

The bad news, for people with ME,  as Nature points out, is how  : Positive results in psychology can behave like rumours: easy to release but hard to dispel.

Compounding the problem  “  is the pathetic state of science reporting: the problem of how unacceptably easy it is to publish total fictions about science, and falsely claim relevance to real everyday life.” In  the ME community we know more than most  the devastating impact of that.

Science has the potential to do so much good - imagine if for the last 20 years the emphasis had been upon biomedical research in ME ! Instead we have all  suffered grievously  from psychiatry  acting in the interests of massive vested interests, determined to deny the physical reality of ME. Ultimately that  is terribly damaging for science.

Disturbingly it has been found that   the odds of reporting a positive result are  around "five times higher among papers in the disciplines of psychology and psychiatry and economics and business compared with space science". We would have done far better, it seems , if ME had been  ascribed  to aliens !!

The situation is not improving. In 1959, statistician Theodore Sterling found that 97% of the studies in four major psychology journals had reported statistically significant positive results.  When he repeated the analysis in 1995, nothing had changed. 

This is especially remarkable , given that the DSM currently lists 297 official mental disorders,  yet  there is no lab test for any of those 297 disorders. As Jon Rapport comments : If psychiatry were nothing more than an intellectual game in a vacuum, it wouldn’t matter.

 Oh, but it matters ! It matters very much to my wife and I, given she has suffered twenty untreated years of absolute  agony, while ME funding, in its millions, has been wholly diverted to psychiatry.

The evidence is overwhelming that CBT – designed to change "negative thinking" and GET are devastating for people with ME, making them worse – this is shown in study after study. So, if I was a psychiatrist, how might I manipulate the inevitable disappointing  research figures ?
There are any number of ways :

  • Write  your own version of the  London Criteria , so that they are virtually  identical to the Oxford Criteria.

  • Make sure there is  absolutely no data whatsoever in your  paper on what most people would regard as objective markers of recovery; this data was simply ignored.

  • Do not define or objectively measure "fatigue". Just as  the meaning of  "ME " is shifted to "CFS", shift the meaning of "recovery" to not mean physical recovery, nor to mean loss of symptoms - only the removal of a fatigue that you have not defined in the first place, or measured in any objective way.

  • Make sure that your definition of recovery is not relative to a healthy person’s score by using the English population mean ( which includes elderly and disabled people) -  rather than the working age mean .

The PACE Trial,   surely , is  a  watershed.  No matter how much they try and veil the results in smoke and mirrors or spin it  to the hilt,  the Pace Trial  confirms  how redundant psychiatry has always been in the treatment of  ME; the serious  neurological disease that is  destroying  our lives.