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 control.
Now your heals are really hurting from the pressure on them.
Your calf muscles are beginning to burn with a hotter sensation of pain, but inside that, they are feeling weird and weak, empty.
Numbness is spreading deeper and wider over your whole body.
Your back muscles are beginning to go into spasm.
The pain is starting to scream at you as your muscles feel like they are crashing and dissolving, breaking down from solid to fragmented strings and fractured cells.
You need to move.
You need to lie down, but your head is hurting and there is nothing you can do to help yourself, except stay calm and try to think.
Thinking though is becoming harder.
You feel as if you have been pushed away from the outside world, like you are disappearing inside a deep inner chasm.
You are losing your ability to focus.
Your eyes are staring.
Your sight is kind of black and patchy.
You feel like you are dissolving into nothing.
Your thoughts are harder to find.
You want to talk, you want to say something, but by now your mouth is stuck shut, your lips tight together, your jaw is clenched tight.
You cannot speak a word.
You know what you want to say.
There are so many things you need and want to say right now, but the thoughts though clear are now disappearing from view.
The pathway to speak has been mysteriously withdrawn.
You cannot ask for the drink you need.
You cannot say you need food or medicine or any of the things that might help you.
If you are alone, you cannot call for help.
If you are not alone, you cannot tell the person what you want.
You might manage a grunt or some prearranged sound, but even this may be too much.
No energy to breathe?
No strength in the muscles?
The pain is sneaking more intensely up your body.
Your diaphragm is struggling.
Your chest muscles are burning with pain.
Your face is hurting.
Your eyes are throbbing and dry and may have shut and refused to open, despite all commands you can internally send them.
You are really struggling now.
If you are lucky you may be able to fall to the side and lie down.
You may break out of it a moment at best and move a limb or tip yourself sideways.
Or your body may just give way so you fall over.
But that is it.
Your breathing, shallow, sounds and feels as if you have gone to sleep.
But you haven't!
You are still conscious and awake inside your mind.
But nothing is working.
Everything is impossible and your bladder is getting desperate now.
But no, you cannot bear to be touched or moved.
Even if you have a wheelchair, you cannot move to get it.
You cannot tolerate being lifted.
You cannot bear motion or movement.
You cannot sit upright.
You cannot be helped in that moment, no matter how great the need.
You cannot go to the toilet, even though you are desperate.
There is no strength in you.
Your muscles will not comply, cannot hold you up, cannot perform the simplest task to help yourself.
Your tongue is numb.
Your lips are numb.
You cannot lick them or open them still, to speak and say what you need.
This is the place you repeatedly return to, with noise or the other triggers of paralysis.
This is the invisible, empty, dark place you inhabit, waiting for the shift to come once more and movement gradually to come back to you, ever so slowly and gradually.
It never leaves.
It always lurks.
Weakness dominates internally.
Numbness and pain define your boundary or disappear your edges so that proprioception is lost. Your face may feel as if it has no definition at all.
Your muscles may tremor or shake going in or coming out of it.
The spasms can be strong, violent, repeated, uncontrollable.
This is your life.
This is your body, though it no longer responds to you and you feel trapped inside it, floating in suspended animation.
Hours, day, weeks, decades go by and you are still following the same rhythm paralysis sets out for you.
One minute you may be able to move, one minute it may be gone.
One moment you may suddenly have lost your hand or arm, your fingers, your feet, your whole left side or your mouth, your eyes, everything.
That is the horror of periodic repeat paralysis, never knowing when it will come, but never quite leaving you either......
Stop what you are doing right now and be prepared to lose all possibility, all plans, all intention, all the things you take for granted.
It is hard to imagine or be able to stay that still, unless you have this.
But if you just stop and reflect upon it, for even a few minutes, you might start to become aware of how shattering it might be to experience it, to imagine all the things you would have lost out on, all the dashed hopes, all the lost connections and activities, how uncomfortable, painful, agonising, it must be, how dependent it would make you on others, how inaccessible the simplest thing you take for granted would be, like scratching your head or reading a book, making a drink, answering the phone, speaking to anyone, getting something to eat, even sitting upright.
And what is worse, it is utterly beyond your control.
For this is an absolutely life changing reality!
And it never goes away.
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 be a failure! (Matthees et al 2016). Behind that story, which surely should be headlines in every major newspaper, lies a David and Goliath story, such as the world has never known. It proves that a lie cannot remain hidden even behind the awful might of corporate power.
The odds of victory appeared insurmountable, due to the nature of the disease itself; if ever any patient group is spectacularly ill equipped to mount a fight-back it must be the ME Community. The hideous nature of the neurological disease, in its most severe form, leaves you paralysed in a darkened room unable to bear light, touch, sound, movement, in unbearable pain.
You can’t take to the streets, march, hold up a banner, lobby, write, think even most of the time. How then can you possibly challenge those who have the money and the power to define you as a victim of “maladaptive thinking”, an object of “disgust”, who just needs to change their thoughts and get well; who label you an “unhinged crusader “? (Rehmeyer 2016)
So you are left to suffer, horribly alone, with nothing and often no one to help.
The great tragedy? The countless medical professionals, who should have known better than to believe in a psychiatric cult (Williams 2016) that could not possibly have been right, the family members, the neighbours, the churches, the many institutions, all those who have stood by and done nothing to help or who long ago, washed their hands and walked away, leaving us the carers and patients to cope alone, in unspeakable circumstances for many, many decades.
The PACE Trial was recently compared to a ship, a “thing of beauty” (Wessely 2015). Now the truth has been exposed, perhaps a more appropriate nautical analogy would be a stinking prison ship, a tank of a thing that could never possibly have left port, but still manages to enslave and drown thousands in the filthy contamination it pumped out - and is still pumping out unceasingly. A pollution that will take many years, if ever, to clear up.
The damage and the harm that has been done to people with ME, goes way beyond holding those responsible for the PACE Trial and the charities that collaborated with them to account for their actions.
How is the UK ME Research Collaborative going to respond? Effectively and strongly, we hope.
The PACE Trial, however, was never about ME, as the lead investigator was forced to confirm. (Hooper 2011).
“CFS” is the psychiatric lobby’s most dangerous and chilling legacy because it focuses away from a single disease and misdirects towards general fatigue. More than thirty years that could have been devoted to biomedical research and clinical understanding of Myalgic Encephalomyelitis, a WHO classified neurological disease, with a real possibility of developing appropriate medical tests and treatments, has been wasted because of it; the human cost is incalculable.
All we have is endless questionnaires, poorly worded, supposed to identify this profoundly disabling disease but still no universal biomedical pathway, diagnostic test or valid safe treatment options.
Progress will not be made all the time research remains “fatigue” focused, ignoring the most ill. People with Severe ME do not primarily complain of fatigue! No wonder they have been ignored.
The world needs to understand that “CFS” is not a single entity, because of the mish -mash of different criteria used to define the illness.Rigorous physiological testing is not generally carried out. There is no way of knowing who has what disease.
The whole picture needs to be looked at again with each patient individually tested for what disease they actually may have. But in order to do this we need keen, interested, practitioners with integrity, sending out a strong statement that ME is not a fatigue condition, needing fatigue management. It is a serious neurological disease requiring serious clinical input.
Ultimately the only safe way to ensure people have the disease ME, will depend upon proper diagnostic markers being found. But that will only happen with consistent criteria for research , based upon the actual disease experience of the most severely affected.
We need to break free of petrified opinions !! A new pathway needs to be set up, not the old pathway reinvented to accommodate all those who have leaned on a fatigue interpretation for decades.
We need new. We need better. We do not need psychiatric involvement or interpretation. This should surely be evident when you look at the real results of the PACE trial.
Greg Crowhurst September 2016
Hooper M (2011) Initial response by Professor Malcolm Hooper to an undated letter sent by Professor Peter White to Dr Richard Horton, Editor-in-Chief of The Lancet
Matthees A, Kindlon T, Maryhew C, Stark P, Levin B.(2016) A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf
Rehmeyer J (2016) Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
Williams M (2016) PROOF POSITIVE ? (REVISITED) http://www.angliameaction.org.uk/docs/Proof-Positive-Revisited-September-2016.pdf
Wessely S (2015) The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage http://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/
How can treatment advances be made when so many care givers still have this 'caveman' status where nothing is happening except fire gazing?
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 input
- no 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 biomedical “ME/CFS” literature, which predominantly focuses upon fatigue.
She has paid for and received advice that has varied greatly in quality from useful to downright dangerous. She has been greatly harmed by clinicians not listening to her, but following their own preconceived, set agendas. It is virtually impossible, unless you pay and even that door seems to be shutting, to receive advice in the first place; very, very few clinicians seem at all interested in ME, especially Severe ME..
The message from the medical establishment is that their illness is :
- not that serious,
- something they will get better from for no reason or from thinking positively along with graded exercise
- something they are exaggerating with no real reason or underlying cause
- something they are mysteriously to blame for
- something they are not trying hard enough to get better from
- not a real disease.
The initial test developed for ME`was the VP1 test (Williams 2011), an enterovirus test, not specific to an individual enterovirus, but at least a help identifying that there is a persistent enteroviral infection and as a consequence, who has actually got ME.
Why was it abandoned, leaving no biomedical test in its place, leaving the door wide open to psychiatric misdirection primarily towards fatigue and psychosocial management, as exemplified in the PACE Trial, which is all set to be repeated, this time among children ?(Colby 2016)
Natalie Boulton (2016) warns : “CFS and ME, (the names are used indiscriminately), is being established as a common condition. As a consequence, when it comes to treatment, management approaches are used that may be of some limited benefit to some fatigued children, but they are likely to be utterly disastrous for the minority with ME.”
It is devastating to be given the vague diagnosis of “ME/CFS”. An ME/CFS diagnosis helps no one, because it does not specify which disease a person actually has.
Until enteroviral testing and interpretation are brought back and focused upon for ME, those with Myalgic Encephalomyelitis will continue to be overlooked and endangered in a sea of other misdiagnosed, misunderstood and poorly treated illnesses.
How tragic that just like the PACE Trial investigators, the medical establishment has :
- Diminished ME to a vague fatigue syndrome.
- Mixed together numerous taxonomically different disorders.
- Excluded those who are severely affected.
- Studied “CFS” not Myalgic Encephalomyelitis
- Made it impossible to separate out the various illnesses within the ME/CFS umbrella label by not having proper tests and protocols in place.
As a consequence the most severely ill in particular, languish in a nightmare of agony and physical distress. Many die, we personally know ten who have lost the dreadful battle for survival. We see little hope of change all the time clinicians conflate a whole range of vague fatigue illnesses to mean Myalgic Encephalomyelitis.
ME is not necessarily CFS, but neither is it ME/CFS or CFS/ME, because not every one equates ME and CFS using the same diagnostic criteria. With such endemic confusion you cannot just add names together and mean the same disease.
Neither can you use a wide variety of different criteria, to identify ME, while ignoring most of the more severe symptoms. Without a universal agreed criteria, people with very different diseases, requiring very different approaches to treatment will continue to be lumped together and confined to the current medical dead end that is “ME/CFS”.
ME and CFS are not interchangeable names, they hold wildly different meaning for different practitioners depending upon their particular field of interest or concern; there is no constancy and consistency of definition.
This is completely unacceptable. It leaves no one with a safe understanding of why they are so ill.
If someone has Diabetes, there will be a consistent recognition of the symptoms, disease and an understanding of what is required. It does not have :
- interchangeable names
- unsafe treatment protocols
- no support,
- no tests or treatments.
Diabetes has a clinical pathway, it has monitoring, support and respect. What a different world that is!
The PACE Trial has all but collapsed (Tuller 2015), but how can anyone make a convincing case for a post-PACE world when it is not clear what exactly is meant by fundamental terms?
Patients need :
- to know what disease they have
- a physiological explanation for their symptom
- a genuine recognition of the seriousness of their illness and the incurred level of disability
- to feel safe
- much better information about their disease based not just on the few who can get to clinics, who may be primarily lacking in energy and appear on the surface to be fatigued, yet who can still function enough to interact even at high cost.
There needs to be a return to first principles. ME used to mean a neurological disease initiated by an enterovirus, according to Dowsett (2001). Now the term CFS incorporates poorly identified people with Lyme, Allergy, MCS, Unidentified Piituitary damage and Addinson's, Hypothyroidism, rare diseases such as Periodic paralysis etc and any number of other untested for diseases.
It is a travesty that the diagnosis of ME no longer focuses on enteroviral infection as the main specific trigger. In fact if you talk about enterovirus it almost feels as if you have said a dirty word.
A first step would be to at least bring back the VP1 test and use it as a starting point to separate enteroviral ME from the many other illnesses lumped in the messy CFS/ME, CFS and ME/CFS categories currently used.
Better provision, better identifying procedures, tests and a separation of other identifiable disease, especially Lyme, are required to provide better treatment protocols for all and a separation from ME altogether.
The medical establishment must start taking all patient symptoms seriously, seeking for rare and known diseases that have specific protocols in place, if only they are identified. There has to be a willingness to better identify the difference between patients and find any pathogen underlying their illness so that they can be labeled with the correct disease and treated accordingly.
The driving focus, right now, is fatigue, but that is only to look only at the tip of the iceberg.
A Post-PACE World
What is required in a post-PACE world is a biomedical focus, using common specific criteria to safely identify a single illness, meaning Myalgic Encephalomyelitis, that focuses not upon on generalised fatigue, but all symptom experience and system dysfunction .
There has to be a commitment to working with the most severely ill that takes into account their physical disability and the way the disease impacts upon them, so that harm and deterioration does not ensue. People with Severe ME must no longer be excluded from research and treatment but neither must they be continue to be harmed by :
- wrong testing,
- wrong treatment protocols,
- wrong interactions,
- wrong understanding
- unaware physical contact
- invasive intolerable tests
nor their experience be ignored in terms of looking at and understanding the illness they have.
Centres of Excellence, teams of clinicians working together holistically, not just looking at individual symptoms or organs, but at the whole picture and the whole impact, aiming to comprehend how the disease affects the whole body in individual ways are urgently required.
Clinicians must be trained to really listen and take note of what they are told and comprehend what the patient is describing, what they are actually experiencing, not just what the practitioner assumes is going on or wants to focus upon. This is essential so that harm does not follow. With ME the after affect must always be taken into account.
Clinicians who have deep and wide clinical knowledge of system malfunctions and a real interest in Myalgic Encephalomyelitis and access to serious testing facilities are required, plus an ME-aware domiciliary service for people with Severe ME who are far too ill to attend hospital or clinic appointments, one that is able to take into account the numerous hypersensitivities and a great need for flexibility.
Patients need to know what is wrong, they need help not harm.
No more compromise! No more conflicting definitions.
The key to a post-PACE world is ME, not CFS consciousness.
(c) Greg Crowhurst September 2016
Boulton N(2016) A Parent’s Perspective; ‘Lost Voices’ as the years past. A talk given by Natalie Boulton at the ‘Hope 4 ME and Fibro’ conference in Belfast on June 6th 2016. http://voicesfromtheshadowsfilm.co.uk/2016/presentation-for-belfast-6th-june-2016/
Colby J (2016) The Young ME Sufferers Trust (Tymes Trust) joins call for independent analysis of PACE Trial data | 15 February 2016 http://www.meassociation.org.uk/2016/02/the-young-me-sufferers-trust-tymes-trust-joins-call-for-independent-analysis-of-pace-trial-data-15-february-2016/
Dowsett EG(2001) THE LATE EFFECTS OF ME Can they be distinguished from the Post-polio syndrome? http://www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/dowsett/lateeffectsme.html
Tuller D(2016) TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study http://www.virology.ws/2015/10/21/trial-by-error-i/
Whiting J (2013) Doctor’s Dilemma, Stonebird, http://www.stonebird.co.uk/doctors%20dilemma%20ebook.pdf
Williams M (2011) “Grey” Information about ME/CFS http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm
Ability to listen to instruction and follow it accurately.
An understanding of how to be with someone with profound Light, Touch, Movement, Noise
& Chemical Sensitivity without triggering a reaction.
Ability to flow gently, quietly and gracefully with the person’s energy, so as not to
Skillful contact appropriate to the person’s
Honest self reflection, awareness and understanding.
Skilful timing, knowing when and when not to act.
For much more information please see : Severe ME, Notes for Carers
Stonebird response to the AHRQ Addendum.
It is a welcome change, to see common sense finally prevailing in the U.S. Agency for Healthcare Research and Quality (AHRQ)’s ground breaking addendum to its 2014 ME/CFS evidence, downgrading the effectiveness of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in the treatment of ME, as well as highlighting the inappropriateness of the Oxford Criteria to identify patients safely or at all.
It is also hugely encouraging to hear that the Information Commissioner has just ordered that the PACE Trail data be released.
These two game changers must be viewed in the context of what has been happening to people with Myalgic Encephalomyelitis for the last 30 years, who have been excluded from proper medical and clinical input, appropriate to the seriousness of their physiological symptoms.
The term ME has been so misused for so long now, that there is little clarity about who has what illness.
The misinterpretation, the lack of clinical respect and knowledge, the focus on fatigue, the compromises, the misdirection, the mistreatment and misinformation has negated the relatively small group of people with Myalgic Encephalomyelitis, who remain hidden under a wide CFS umbrella, is a travesty.
It is a direct result of the denial, negation and downplaying of ME as a neurological disease, by psychiatry, for decades using the Oxford criteria, to misdirect and focus attention on general and chronic fatigue.
The list of those dying in horrendous circumstances from the disease directly and indirectly through suicide, due to the hopelessness of their situation, the unbelievable torment of their suffering and the denial of basic health respect, grows shockingly long.
The UK psychosocial fatigue clinics set up for Chronic Fatigue, passing as clinics for ME, ineffectively and inappropriately offering management techniques such as CBT and GET, promoted in large by the PACE trial, continues to fail the ME community.
A chronic lack of understanding promoted by research using poor criteria that ignores the most severely affected plus the complete confusion over diagnosis and various different names used, has made it very unsafe for people with ME trying to navigate health care systems around the world.
The prevailing psychosocial paradigm is almost certain to cause harm to people with ME.
A generalised fatigue focus, that ignores severe and serious symptoms such as paralysis, muscle tremor, gut issues, gastroparesis, intense indescribable whole body pain, hyperacusis, MCS and photophobia, to mention only some, leaves those suffering from them, without clinical input, recognition or understanding or any means of moving forward toward hopeful treatment.
This is psychiatry’s legacy: lost generations of people, suffering intensely, hidden, off the map in terms of of clinical input and appropriate health care, ignored, misrepresented and left without help or hope.
A hugely influential fatigue lobby that commands enormous power and influence still continues to do great harm, resulting in:
- lost services and lost lives
- confused research, not researching ME specifically yet purporting to, by the use of confused or wide criteria and different name labels
- the countless numbers of housebound and bed bound people, living in a limbo land of agony
- the chronic lack of understanding of the physical illness
- the proscribing in the UK of tests that might help identify health issues
- the lost VP1 test to identify Enterovirus involvement
How many more people have to suffer and die from this disease?
How many more people who are tormented and physically suffering, left in agony for years, spilling into decades, will have to endure the ongoing misdiagnosis, misinterpretation by doctors, the lack of appropriate care and understanding or investigation and the misrepresentation of ME in health service provision ?
When will sense, integrity, genuine concern, compassion, win through? Perhaps it is just beginning?
When will scientific research with proper, specific ME criteria, for the actual disease, be the standard?
There is an uplifting sense and a hope that, at last, after decades of struggle, we are entering the end game. However, we still see little hope for the future, all the time that fatigue remains the primary focus, whether physical or psychological and the severely affected remain side- lined, ignored, isolated because of the nature of their illness and the difficulties they have in engaging with people and services.
Even if psychiatric involvement is seriously undermined and recognised as inappropriate and, as is necessary, deposed from its seat of power and control, the damage has already been done.
Far too many compromises have been made; the original focus on Myalgic Encephalomyelitis as a neurological disease initiated by an enterovirus has almost been lost in history.
We fear that a biomedical fatigue focus will still neglect the most severely ill and the real illness, ME, itself, unless a new ME pathway is set up, based on the work of the great pioneers, Ramsay, Richardson, Dowsett, all sadly no longer with us.
The separation of ME from CFS is a battle still to be won. This will be accomplished through the universal acceptance of a proper clinical definition, such as the ICC criteria, not compromising with the outdated, middle of the road, Canadian Criteria.
A proper biomedical treatment pathway with appropriate clinical input for the homebound has to be created, based on in-depth knowledge and comprehension of the complex health issues people with Myalgic encephalomyelitis experience together with an understanding of how to provide a safe service that accommodates the massive difficulties they experience in face to face interaction and investigation.
The AHRQ Addendum is a profoundly important development, for most important of all is the recognition, at last, of the harm and the danger to health of misdiagnosis and wrong interventions.
A new biomedical care pathway is essential for all, but where are the clinicians to fill the gap? Are they there?
Greg & Linda Crowhurst
AHRQ (2014/2016) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome : https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf
ME Association (2016) Tribunal orders release of PACE Trial data (courtesy of Valerie Eliot Smith) | 16 August 2016 http://www.meassociation.org.uk/2016/08/tribunal-orders-release-of-pace-trial-data-courtesy-of-valerie-eliot-smith-16-august-2016/