The experience of Severe ME
This website seeks to share some of the experience of living with Severe ME, both from a carer's perspective and from the perspective of having it. It offers insight into the physical reality, yet also seeks to place this in a creative context; however stark :
The Stone Bird- Archive
Boxing Day
Christmas wishes
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ME Spring -
The cold eats into me Chilling my bones And sending nerve pain screaming round my battered body...
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Moments -
The moments tick by So slowly Yet time is still running out Days slowly drip by And in the centre I sit....
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Advent Reflections - Every day of December, until Christmas , Stonebird will be posting an Advent Reflection on the reality of living with Very Severe ME.
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Stonebird : How to Care for Someone with Severe ME - Communication , an extract from our forthcoming book : How to care for Someone with Severe ME
- Stonebird : How to Care for Someone with Severe ME
- Partnership , an extract from our forthcoming book : How to care for Someone with Severe ME
- Stonebird : How to Care for Someone with Severe ME
- The MOMENT approach, an extract from our forthcoming book : How to care for Someone with Severe ME
- Stonebird : How to Care for Someone with Severe ME
- Coming Soon : our Carer-to-Carer Guide.
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Broken Lips - Do you know what it is like to be an irritation to the one you love ?
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Film Review: Voices From The Shadows
- by Simon Overton (editor of "Missed Diagnoses" & Author of "Charcots Bad Idea")
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Tenth Anniversary of the Breakthrough Prayer - We pray for the success of Voices From the Shadows
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Voices From The Shadows - International Premiere at The Mill Valley Film Festival, USA
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Naked ME - The horror of Severe ME.
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Stonebird Autumn Art Exhibition 2011 - Stonebird announces the launch of its online 2011 Autumn Art Exhibition , featuring works by Eva Caball and Greg and Linda Crowhurst, in order to raise awareness of the atrocious hidden suffering of Severe ME and Multiple Chemical Sensitivity
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M.E. AND FIBROMYALGIA INTERNATIONAL CONFERENCE 2011 - The Academy of Nutritional Medicine in association with The Midlands Fibromyalgia Support Group, are delighted to announce their International Conference to be held in Tullamore Ireland on October 9th.
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Stonebird : How Do You Help Someone with Severe ME ? - First and foremost you have to remember that the person with Severe ME does not react to the environment in the same way that you, a person without ME, does.
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17 years ago, my wife spoke the truth that she is ill. - Stonebird : Build a Matrix of Truth
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Our letter to our MP urging him not to back the NHS Reform Bill - PLEASE do all you can to defend our much loved NHS !
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There seems to be a line
that most people will not cross
friends, neighbours, family, health professionals even,
government officials. - They accept I am ill to a degree but simply do not want to know or understand
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It's too horrible to show; this picture, with its bloody teeth. I wasn't going to - It's just my outrage fulminates , steams so.
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12 year old girl with ME, locked up in a psychiatric ward in Spain !! - Please, please do what you can to help.
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Slow Caring
- I have become aware of a "Slow Movement", born out of a need for connection, which is taking root around the world
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This is a picture
- This is a picture of Severe ME
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Still Defiant !
- Caring : it will easily break you, or it will take you places and teach you things you never thought possible.
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Myalgic Encephalomyelitis:
International Consensus Criteria. - The significance of this game-changer cannot be overemphasized; please click here to read our response.
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Despair - A poem about the invisibility of the severity and the isolation of having a completely misunderstood, misinterpreted illness. It is about the hidden torment of any interaction and the separation of my reality from everybody else; their normality.
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An Appeal from Emily - Severe ME is utterly devastating. It is time for proper research and proper care. That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
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25% Group and Stonebird DSMV Submission - The inappropriate involvement of psychiatry, particularly the Wessely School, in ME in the UK, promoting a psychosocial agenda and even denying the definition and existence of ME as a neurological disease, would make it wrong for the DSM to validate CSSD and SSSD.
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Bodies of Evidence :Injustices and Opportunities in Central Sensitivity Syndromes by Clara Valverde and Equipo Aquoan . - Stonebird is privileged to publish this truly ground-breaking article on Central Sensitivity Syndromes (CSS) , by Clara Valverde and Equipo Aquoan, which powerfully highlights the social injustices and inequalities that affect people with conditions such as Fibromyalgia , ME and Multiple Chemical Sensitivity . Brilliant.
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Dancing -
Everything is dancing around me And I feel stretched beyond my limits
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Linda's response to the BMJ article : "Medical Research : Dangers of research into chronic fatigue syndrome
Nigel Hawkes" - Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue.
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Carer Times June 24 - Why Symptom Control is not enough
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ME Symptom Tool - Another first. Use our ME Symptom tool, to help you print out a list of your Symptoms
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ME Symptom Map - For the first time ever ! A graphic new way to map out the physical symptoms of ME.
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Two poems by Theresa - In the pain and desolation of illness, love triumphs. Every life is sacred, precious and of infinite value.
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The Carer Times June 6 2011 - One of the greatest barriers that people with ME face are the lack of Randomised Control Trials (RCT's) to back up whatever treatment a Consultant might recommend.
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Voices From the Shadows - The Trailer is now released. Watch, weep and speak-up !!
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The Carer Times June 2011 - What people with ME need and have always wanted , is a biomedical service based upon clear , fundamental values that validate the physical disease and multisystem dysfunction. They have never wanted a therapy-led, psychosocial service.
How do you survive ?- The recent death of our dog, our comrade this last eleven years , has stripped bare the isolation we endure. How will we cope ?
Amos RIP- How hard it was to get up this morning and know that our beloved Amos is dead.
May 14th 2011- Today we continue to pray the Breakthough Prayer for all those who are struggling.
My World
by Theresa
"Fallen Leaves in the Grate", photo by Piomar-
Into the fug and snugness of my human habitat, you came racing in, flinging open an exotic window to the Great Outdoors.
Stonebird ME Awareness Week Video 2011
Strong Voices
Photo : Stop Hand Gesture by Nutdanai Apikhomboonwaroot- Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
St Mark's Fly
Photo : www.copyright-free-pictures.org.uk- The discovery that the tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.
Good Friday
- The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.
One Pixel
- Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?
Fight the Cuts to Disability benefit !!
- The Hardest Hit have launched an excellent online form, which you can fill in.
Saying No ! can be positive.
- The Grace Charity have just updated their excellent document . It supports M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country.
ME Attack
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I do not want my ME to define me So I try to define it to clarify it to demistify it to explain it so others understand...
It is not "reassurance " that is required, but proper respect and treatment !!
- There is simply nothing more devastating than for a sufferer to be shoddily dismissed by a Neurologist...
Friday afternoon
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I am screaming My body is screaming at me. Throbbing intolerably many sensations assault my sense of time and place....
You decide....
- "She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....." Click here for a response to this comment, left on our YouTube site.
Rear window By Eva Caball
- Stonebird is proud to publish Eva's incredibly powerful new article about toxins and multiple chemical sensitivity
How Outrageous !!!- Kevin Short outlines how NICE have decided not to change their Clinical Guideline on ME. This injustice must be vigorously challenged !!
We pray for Pauline- We have just heard the very sad news that Pauline, co-author of The Breakthrough Prayer , a deeply spiritual person , full of love , who endured a dreaful amount of suffering with ME , Cancer and Diabetes, died this morning. In Theresa's words, " A great spirit is gone" We pray tonight at 9pm, especially for Steve , her beloved husband , " one of the saints" says Theresa, and for the daughter and three sons that she leaves behind.
Utterly Broken- The breaks in connection are complex and many layered
Stonebird - UK Government : ME is not "CFS/ME" !! picture : www.copyright-free-pictures.org.uk
Stonebird - Pace Trial : the facts at a glance .
The 25% Severe ME Group and Stonebird -
Neither Reasonable Nor Fair :
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), on behalf of people with Severe ME. - The 25% Severe ME Group and Stonebird
- DLA Reforms : Severe ME Form Letter.
- Stonebird
- DLA Reforms : What the disability community can learn from the experience of people with ME
- Stonebird
- DLA Reforms at a Glance
Stonebird : Briefing Document- DLA Reforms
Now is the time - NHS Consultation : a must-read Severe ME Response
- As Rous concludes : "A dark side to medicine exists." Indeed it does : it's called the PACE trial.
- My World
by Theresa
"Fallen Leaves in the Grate", photo by Piomar -
Into the fug and snugness of my human habitat, you came racing in, flinging open an exotic window to the Great Outdoors.
Please click here to download Now is the time in Word format
Please Click Here for Instructions on how to take part before Monday Jan 17th
- Strong Voices
Photo : Stop Hand Gesture by Nutdanai Apikhomboonwaroot - Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
- St Mark's Fly
Photo : www.copyright-free-pictures.org.uk - The discovery that the tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.
- Good Friday
- The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.
- One Pixel
- Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?
- Fight the Cuts to Disability benefit !!
- The Hardest Hit have launched an excellent online form, which you can fill in.
- Saying No ! can be positive.
- The Grace Charity have just updated their excellent document . It supports M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country.
- ME Attack
-
I do not want my ME to define me So I try to define it to clarify it to demistify it to explain it so others understand...
- It is not "reassurance " that is required, but proper respect and treatment !!
- There is simply nothing more devastating than for a sufferer to be shoddily dismissed by a Neurologist...
- Friday afternoon
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I am screaming My body is screaming at me. Throbbing intolerably many sensations assault my sense of time and place....
- You decide....
- "She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....." Click here for a response to this comment, left on our YouTube site.
- Rear window By Eva Caballé
- Stonebird is proud to publish Eva's incredibly powerful new article about toxins and multiple chemical sensitivity
- How Outrageous !!!
- Kevin Short outlines how NICE have decided not to change their Clinical Guideline on ME. This injustice must be vigorously challenged !!
- We pray for Pauline
- We have just heard the very sad news that Pauline, co-author of The Breakthrough Prayer , a deeply spiritual person , full of love , who endured a dreaful amount of suffering with ME , Cancer and Diabetes, died this morning. In Theresa's words, " A great spirit is gone" We pray tonight at 9pm, especially for Steve , her beloved husband , " one of the saints" says Theresa, and for the daughter and three sons that she leaves behind.
- Utterly Broken
- The breaks in connection are complex and many layered
- Stonebird
- UK Government : ME is not "CFS/ME" !! picture : www.copyright-free-pictures.org.uk
- Stonebird
- Pace Trial : the facts at a glance .
- The 25% Severe ME Group and Stonebird
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Neither Reasonable Nor Fair :
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), on behalf of people with Severe ME. - The 25% Severe ME Group and Stonebird
- DLA Reforms : Severe ME Form Letter.
- Stonebird
- DLA Reforms : What the disability community can learn from the experience of people with ME
- Stonebird
- DLA Reforms at a Glance
- Stonebird : Briefing Document
- DLA Reforms
- Now is the time
- NHS Consultation : a must-read Severe ME Response
- As Rous concludes : "A dark side to medicine exists." Indeed it does : it's called the PACE trial.
Breakthrough Prayer New Year's day 2011- We pray at this time especially that the year will bring new understanding about the physical reality of ME as a neurological disease.
2011 : a wish-list- By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 :
A Poem from Emily Collinridge, author of The Essential Severe ME Handbook
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I am being beaten, my side kicked...
From 6 to 30:
A life with ME by Emily Collinridge, author of The Essential Severe ME Handbook
- I loved school and my boyfriend; I could spend hours in a swimming pool and always wanted to climb everything in sight; I couldn't wait to have a proper bike without stabilisers. Life was out there and I was going to live it to the full.
A Christmas Message from Emily Collinridge, author of The Essential Severe ME Handbook
- Christmas is such a happy, fun time for most people. Hearing what it is like for those with severe ME is likely to make a huge impact on those who've never been in that position (even those with mild or moderate ME) and being reminded of such things will touch the hearts of those who've recovered. So let's use Christmas to get more help and support for people with severe ME.
Breakthrough Prayer, 9pm BST, Saturday , Dec 11
- Tonight we pray the Breakthrough Prayer especially for all those who are severely ill, untreated, dying from neglect and a lack of respect for their physical illness.
Stakeholder Response to NICE
- I am greatly concerned that Clinical Area 1, case definition, concludes that "no conclusive evidence was identified that would invalidate current guideline recommendations. " that Clinical Area 3, management, concludes that : "There is currently no new published evidence that would invalidate current guideline recommendations ."
"Rehabilitation is not synonymous with Recovery...."
- Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge, in Time magazine and going "Wow", for it was liking stumbling across the meaning of the mysteries, then shortly afterwards lying with my wife on the bed; it's early afternoon and we aren't going anywhere.
Stonebird : a Response to the Nov 1 London Demo
- Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in ?
November 1st 2010, Protest, Department of Health,
Whitehall , London
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The DOH wrote to the MEA to say that people with ME would be excluded from giving blood to "protect the donors health".Let's tell them what we think of that !
For more details please visit the : official demonstration website ,or click here to download a flyer. There is also a poster that is more suitable for people to use at home in windows and cars etc if they are unable to attend the demo. Feel free to download it here.
Breakthrough Prayer, 9pm BST, Saturday , Oct 23
- We come to tonight's Breakthrough Prayer circle meeting with more news of injustice for people with ME; the ludicrous reason given by the UK Blood Transfusion service for the ban on people with ME giving blood ...alongside the disclosure of the PACE and FINE Trial manuals, which show a blatant disregard for the biomedical truth of ME .
What the Bleep is "ME/CFS "???As part of our ongoing campaign, to get rid of the shameful"CFS" label, this is a very short "Tooltips" essay.
Just move your cursor over the photo and this sentence.
(Note :Those using a screenreader or who do not have javascript enabled , should still be able to access the content.)
People used the term "ME/CFS" when the Canadian definition was published, thinking that would be adopted, but we can say that this did not happen.
Never use any term to describe the illness apart from the correct one, which is Myalgic Encephalomyelitis (ME). Abandon the forward slash CFS (/CFS) ; if you have to refer to "CFS" then clearly state the truth :" ME , wrongly called 'CFS'.
Greg Crowhurst
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Stonebird : a Response to the UK Comprehensive Spending Review
- The back to work ethic that denies the reality of sickness, as a valid state and the covert message that if you are sick your are scrounging., started by Labour , is carried to unprecedented new levels of denial, by the CSR.
Please click here to download Now is the time in Word format
Please Click Here for Instructions on how to take part before Monday Jan 17th
Christmas Day 2010
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And in this decaying world, the worst is to be spineless and to have no personality.
WITHOUT A MASK By Eva Caballé
(Photo :Lightning Strike by Mark Coldren)
Attack over the Lightening Process
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Ten Rules for an ME Activist
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"I have repeatedly said we should never compromise with falsehood and wickedness." Ghandi
The Apprentice : Severe ME Carer Style
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I wonder what the show might be like from a Severe ME Carer perspective ?
The Formation of a Breakthrough Prayer Circle
- The Breakthrough Prayer Circle, for anyone who wants to join in, is on Saturday 9th October at 9pm BST.
Stonebird : Briefing notes on the CDC Empirical Case Definition for CFS :
- I spent a lot of time recently searching for a concise overview of the CDC Criteria and couldn’t find one – here’s what I was trying to find out :
Pseudo Science in the UK :
- A Stonebird response to : Peter White's Psychiatric misdiagnoses in patients with chronic fatigue syndrome.
The Dance !
- Greg Crowhurst has written a children's book : The Dance, part one of the LightNet Trilogy, which is currently doing the rounds.
Hold on , we are doing our best
- I have read many of your mails and some have made me so sad .
Joy
- Psychological Assault : a response to AfME's stance on the proposed Bristol Lightning Process Trial.
- As it did over the NICE guidelines Action for ME has chosen again to take a lone controversial stand on ME, one not supported by the majority of UK ME Charities.
Nobody knows how hard it is with ME
A Stick Picture exhibition about Severe ME by Linda Crowhurst Part 2 - They represent the starkness of my situation and how this paralysing illness has taken away so much of me.
Dust Everywhere I look is dust Letters pile up go unanswered
The Stonebird (informal) Definition of Severe ME - Severe ME is a hellish experience that you live and endure without treatment, cure or respect.
Hit the Bankers, not ME ! - Right across Europe it's the sick, the poor, the vulnerable, who are being made to pay for the sins of the bankers.
I am still me 
ME : Your Worse Nightmare - ...I want you to think of the worst illness you have ever had
The Essential Severe ME Book - "After many years of being housebound and bedbound with ME, Emily Collingridge has put her heart and soul into this book, which should prove an invaluable resource for other people in a similar position" Simon Lawrence, 25% ME Group
Stonebird is proud to publish the latest article by Eva Caballé , author of "Missing: A life broken by Multiple Chemical Sensitivity."
Arms on Fire - There has probably never been a better description of the pain of Severe ME than this extraordinary article by Joss.