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In honour of those who have passed on

In honour of Lili, Sophia, Lynn, Emily, Alison, Tom......and so many other beautiful, brave souls, who have passed on.
Let us renew our efforts to spread the truth of ME, a deadly physical disease.
 Armed with the truth, let us do everything in our power to put an end to the psychiatric lies, spin and deceit, that condemn people with Severe ME to a life of living hell, neglect and profound isolation, until they die.
Shame on psychiatry, shame on the medical profession.

Terribly Sad News

It is with great sadness that we announce the death of a very special young woman with Very Severe ME,  the founder of Severe Myalgic Encephalomyelitis Understanding and Remembrance Day. We knew her as Lili. She was a deeply private person.

 The suffering she endured is beyond description and the sweetness of knowing her equally so. It is, we have to say, beyond heartbreaking, to know of even a hint of the agony Lili endured. Paralysis and extreme pain were only a part of the severe experience she had to bear every day: paralysis not just triggered by noise, but also by any effort at all, whether eating or speaking and often accompanied by unconsciousness.

We all, with Severe ME, owe a huge debt to her; it was her unique idea to propose the special day that we all now share on August 8th; it was also her suggestion that the day be recognised on Sophia Mirza's birthday, to remember those who have died with Severe ME and  those that are still living with it.  On that day, we hold them all in our hearts and light a candle in their remembrance, hoping that the  light shining with radiance,  brings awareness of the true nature of the neurological disease Myalgic Encephalomyelitis.

No one can truly know the depth of torment that such profound suffering without relief brings, yet Lili bore it all with dignity, gentleness and a focus on love and spirit.

We are touched beyond words that she would consider us her friends, despite the impossibility of communication in most moments.

We have our own candle alight, in her memory and hope that her life will always be remembered with kindness and thanksgiving. We are certain that her sweet presence has blessed the world in untold ways.

We hold her Mum also in our hearts at this time of great sadness and loss.

Remember us, remember them, remember Lili.

Linda Crowhurst

Living on the edge of existence

Living with Very Severe ME
is like living on the edge
of existence.
You cannot plan,
You cannot predict,
You cannot control
your experience,
thoughts or actions.
You live there, in a strange surreal state,
Unknown to most,
Not knowing how or when
You might leave.
Others live here with you
Strangely visible to us
Even from a great distance,
Yet oddly invisible to the rest of the world.
Some leave painfully quickly and young,
Whilst others cannot endure the uncertainty, the isolation, the negation,
nor the multi- layered pain
And choose the moment of their parting,
To silently, let go,
Whilst we look on, helpless
to know how to help
each other
Or even ourselves.
And yet we, remaining, still hope,
For better moments
For healing to somehow magically occur,
Despite the odds.
We hold each others virtual hands
And send out love across the universe
Into the abyss of not knowing,
Praying for miracles
to save us all.

September 25th 2015

Elizabeth D'Angelo : an incredibly talented artist

Elizabeth D'Angelo is an incredibly talented artist who has a very severe form of ME, making
painting her beautiful pictures a massive achievement.

Hearing how she experiences profound and life threatening transient paralysis, a symptom so ignored and underrepresented as part of ME, Linda and I were deeply moved by her plight and need to fund treatment and care.

I have built a special Stonebird page to highlight her work . Please visit it to find out more about Elizabeth's magical pieces and how you can help her raise much needed funds through her art shop.

Severe ME on a summer's day

Showing the horror and isolation of Very Severe ME, through the contrast between a beautiful late summer's day and the darkened bedroom where my wife lies paralysed in utter agony, as she has done for the last two decades.

Are the sick, housebound and carers part of Labour ?

Jeremy Corbyn and the Labour Party are accused this morning of "being a party without a point, led by a leader without a cause".

Jeremy Corbyn is 30 years out of date, say the Guardian. He needs new ideas.

They are right ! As I have commented here before, Labour has, to our disgust, these last two decades,  completely brought into the "nonsense" that is austerity, with disastrous results, especially for the sick and disabled.

It is nakedly obvious that Labour  needs new ideas !!

I hope they are developed, but not, anymore by Destructive Vested Corporate Interests.

I hope they emerge, like fire, out of yesterday's 40 000 questions: from the ones who know best.

Jeremy Corbyn has inspired me to join the Labour Party.

Today I received my first invitation to a meeting.

Of course, I cannot go - as a full time carer.

I have told them why.

I have asked them to find ways to  include me, plus the sick, the disabled, the marginalized, all of us who are so invisible on the edge out here.

That's  a big idea, for starters.

Will Labour respond to my request ? I will let you know.

This video could save your life !

My heart goes out to anyone newly diagnosed with "ME", Myalgic Encephalomyelitis, for you are instantly thrown into a wilderness; a barren, terrifying land populated by rogues, charlatans, scoundrels and  tricksters, who will do you enormous harm, if you let them.

Their clamoring nonsense,  to exercise, to take brisk walks, to push yourself through the illness and so on, or pay for their great "cure"  are almost guaranteed to make you much worse, they could even confine you to bed , with multiple symptoms, for decades.

To save you from disaster, you need  wise advice and quickly. I can think of no better resource than Sally Burch's excellent video presentation; it could, literally save your life.

As Sally explains, the advice that you need, right here, right now,  is most likely to come from fellow patients, rather than from the medical profession.

I have been caring for my wife with very Severe ME, for more than two decades. I have to say that it took me at least eight years to even begin to unravel the hostile situation we found ourselves in. If only we had had access to Sally's presentation back then : but that was in the days  before the internet existed.

It takes great discipline, maturity and enormous focus, not just to rant, but to convey the reality of ME in a professional, balanced, intelligent way; one that will speak as much to professionals as it will to patients; Sally's video achieves that on all counts - it is extraordinarily clear and so easy to follow.

As she writes on her blog : it is as if people with ME "have been swept into some dark corner labelled "Beyond Help"!! In a bold, innovative and confident way Sally Burch has done a great deal in this video to highlight the role of patients as a much needed resource.

If I was elected Labour leader today...

The UK "Welfare System" stinks : nearly 90 people a month are dying after being declared "fit for work", while seriously ill patients, like my wife, who has very Severe ME, are just being left to "rot" in agony for decades, with no investigation, help or treatment  !

If I was elected Labour leader today, I would like to know:

  • Why are all public services being re-engineered for the benefit of private capital ? (Monbiot 2015)
  • Why has "Big Society" become  "nothing but  a cover for privatization of public services … a money-spinner for the city and the private care providers" ? (syzygysue 2011)
  • Why are there such significant links between the British government and the American healthcare insurance business ? Why   has a philosophy of disability denial has been thoroughly  adopted by the DWP ? (Stewart)
  • Why is  the welfare state"being dismantled and rebuilt as a machine to manage and discipline the workforce into accepting precarious labour, low pay and no social safety net."? (Penny 2015)
  • Why for more than two decades there has been  a coerced smear campaign designed specifically to abuse and ridicule M.E patients ? (Lewis Gabrielle 2012)
  • How many more people will be pushed, by M.E.,  an despised, awful,   ignored, untreated, disease, to kill themselves ? Where is the hope ?
  • Why is "recovery" defined  so loosely in ME that in the PACE Trial, which is currently used as the "Gold Standard"to influence NICE and the medical profession,   patients could get sicker over the course of the study and were still said to have recovered ? (Rehmeyer 2015)
  • Why for over two decades have   Wessely School psychiatrists been allowed to " tirelessly influence Government Ministers and Departments of State and the medical insurance industry.... about what they term "medically unexplained" disorders, notably ME/CFS and Gulf War Syndrome, both of which they assert do not exist." ?(Williams 2007)
  • Why is ME misrepresented, not investigated and not medically treated ? Why is  it  widely portrayed  as  if its underlying cause  has ceased to exist,as if there is none, as if  it is not a serious disease, as if it is going to resolve by itself and that patients become seriously physically  ill because they  think the wrong thoughts ?
Finally, if I was elected Labour leader today I would issue an  apology  for the deliberate and consistent degradation of ME , the psychiatric mistreatment and misinformation , the rampant  medical neglect, the lack of respect for the many who have died from ME without proper medical understanding or appropriate treatment, or even proper acknowledgement  on their death certificates.

But I won't be elected. As a full-time carer for someone with Severe ME, I could not be more invisible.

Greg Crowhurst

References :

Monbiot G (2015) Britain’s Mafia State ://

Lewis G (2012)

Penny L(2015) The art of cruelty: why the Conservative attack on disabled people harms us all

Rehmeyer J (2015) Epistemically Challenged: Julie Rehmeyer

 Stewart M From the British Welfare State to Just Another American State

syzygysue 2015 Welfare Reform and ME/CFS

Williams M (2007)  Psychiatrists Paid by Outside Interests

A vicious attack.

Recently I was subjected to a vicious attack from a close family member, for my commitment to Linda.
I have lived from necessity, in almost total isolation, for more than two decades.
Cruelly, that can be misinterpreted as not caring about my family and relations.
If ONLY I could visit, attend funerals, weddings, meet up, go for a drink, go on holiday !!! How it hurts, that I can't.
This is my wife's response , it barely touches upon the fullness of her symptom experience :
“When will people get what it means to have profound noise sensitivity, how its not just a nuisance or an irritation or an inconvenience, but life threatening, terrifying, horrendous and uncontrollable ?
When will they realise that a sound, any sound, loud or small, has the power and the potential to harm me, not just for a moment, but fundamentally ?
When will they understand that noise tortures me literally, not occasionally or sporadically but every single day I am paralysed by it ?
Let me spell it out for you what it means to be paralysed by noise:
It means that the noise triggers some physiological reaction in your body and like a domino affect your whole body collapses into total inability to feel or function. Your toes will not move. Your feet get stuck to the floor if you are sitting, your whole body gets suffused with the bed if you are lying down. Your body might break down into intolerable, painful, shaking spasms that wrack your whole body.
Your head shakes wildly, your arms get thrown about even your legs twitch and shake and kick. Your gut goes into unbearable tremor that resounds throughout your whole body too small and fine to be seen externally but indescribably horrible in its sensation. Then you paralyse.
Your stomach swells hugely, it doesn't work, you feel nauseous, your head throbs inside, it burns outside and is unbearable to contact, so pressure is intolerable and indescribably agonising. Your face paralyses and your lips clench shut and will not move no matter how much you want them to, so you cannot speak or swallow or suck a straw to drink or chew.
Your throat and tongue have gone numb and paralysed anyway. Swallowing wouldn't work even if you could get food in your mouth. Your eyes stare either open and unable to focus or your eyelids close and will not open at all.
Your left arm and hand and side and foot and leg and face, burn twice as painfully as your right side, which is always in pain that never leaves. Not one millimetre of my body has been pain free for over two decades, but the paralysis worsens it.
Your back muscles collapse and the sensation is screaming, burning,throbbing, rippling pain as the muscles collapse and refuse to hold you up and your whole body feels like it is breaking up from the inside out. Your mind blanks out and your breathing slows down.
Your chest muscles hurt and won't work. Your diaphragm is blocked by the swollen paralysed stomach pushing against it.
Breathing becomes difficult. You overheat and sweat and shiver at the same time. Your nose goes ice cold and your hands and feet are empty. They feel insubstantial like jelly or candy floss.
You sit unmoving and hunched over like a squashed statue in massive agony. If the noise continues to assault you it breaks inside you repeatedly tormenting you. If it comes at intervals it will repeat the pattern again and again, just as you are struggling to get out of it you are thrown into paralysis even deeper and worse than the previous one and it lasts for hours and hours, with you, trapped inside and unable to communicate.
And how do you consider, you people, who ignore my reality and my symptoms, that I live in a house with a compassionate husband trying to care for me in such a terrible state of hypersensitivity ?
Do you think we just have a jolly all day long and there is nothing much to fuss about?
Well, you tell me, how do you cope with a phone ringing, for a single second, if one shrill noise will harm you ?
How do you tolerate other people's conversation, speaking anywhere in the house or even outside it, if you hear it through the floor boards or the walls or in the same room, when every single syllable is hurting you all over, not just your ears or your head but in your guts, your back, you limbs, everywhere? And will make you even more ill and physically weak?
How do you think food is prepared, when every single knife cut or bang slices into you, when the electric kettle and the sound of the oven, tortures you, how do you think your husband moves round the house when even trying to be quiet as a mouse, his footsteps are kicking you all over with their noise?
How do you think life is lived, moment by moment in these absolutely horrendous physical circumstances?
Why would you think I can be left alone for hours on end to manage when I simply cannot move or think or function, repeatedly all day long? Or tolerate one moment's agonising noise without dire, impossible to deal with or bear consequences?
When are you going to open your minds to the true reality of very Severe ME and the unpleasant, inconvenient, unfortunate fact that the wrong environment, the wrong experience, the slightest wrong sound can lead to frightening unbearable deterioration of symptom and a complete inability to get my needs met, can lead terrifying intensifying of pain, paralysis, numbness, swallowing difficulties, cognitive dysfunction, even to life threatening experiences?
Just when are you going to try and comprehend the massive stress any carer lives with, trying to move around the house, live a life of love and meaning, meet the caring obligations and not despair for the ignorance and cruelty and abuse of others, who should know better, yet who simply negate, deny, minimise and dismiss the true reality.
Very Severe ME: the most horrendous illness to live with - and from virtually everyone who cannot be bothered to try and comprehend it : persecution and ignorance ! "

Walking Away

 Severe ME :

It seems too complicated,  too much effort,  too bizarre.

It is unbelievable, it is not possible to comprehend, empathise with or even recognise the degree of suffering because it is so vastly out of reach of the ordinary person's experience or interest even.

How do you stay in touch meaningfully with a person who cannot bear your physical presence or converse in two way conversation, who is allergic to your perfume on your body and your clothes, who cannot tolerate physical contact because of touch, pressure sensitivity and intense indescribable levels of pain?

Who lives in darkened spaces, wears dark glasses indoors and cannot bear the ordinary light of day?

How do you convey your inner reality, the complete emptiness of your thought,your inability to answer questions because you simply cannot find the words or the images in your mind?

How do you explain that the simplest noise, a cough, a laugh too loud, a certain tone of voice, a phone ringing or a movement or quick gesture might trigger total body paralysis, feet, legs, arms, hands, fingers, back muscles, face, mouth, eyes, increase numbness, cause partial or total shaking muscle spasms and a host of other worsening invisible symptoms that go on long after the person has gone away ?

How do people know you still care, you are still interested, you think of them every day, perhaps, but you simply have no safe way of engaging with their presence?

How do they keep caring?

 How do they keep interested in your empty tortured life?

How do they keep in touch?

How much easier it is to walk away or get angry or blame or not understand? How sad that they cannot or will not make the necessary changes, the effort needed, will not convey they want to really know or at least try to comprehend the nightmare reality of living with very Severe ME.

They will not try in the right moment, in the right way, to engage or reach out in love.

Because it is not enough to just be ordinary, in the face of such suffering. They have to engage more fully in the how to relate. Ordinary conversation, communication, interaction is unrealistic and dangerous. But how impossibly difficult is that to convey?

How terribly sad it is, that with such need to protect the immediate environment, for the person to remain safe, so few comprehend the danger they pose and are willing to give the utmost commitment to maintain it.

How much easier it is to ignore the truth or just think you are being difficult or exaggerating or even playing some kind of game?

How lonely that feels.

How terrible that the most ill are left in this state of blame or ignored or misinterpreted or just simply excluded and forgotten in the decades of suffering.

Their unrecognised, untreated, unsupported, clinically dismissed, abandoned physical disease renders them  completely invisible and alienated from the people they once knew and the life they once lived by.

Living in torment with no real idea of what to do or how to cope moment by moment by moment.