About 100 people attended the showing of the documentary film ‘ Voices from the Shadows’ held at The Forum in Norwich on Friday 2nd December. This moving film told the stories of  severe ME sufferers and their carers and obviously as Jenny’s father it was both upsetting but also a call to [...]]]> Voices from the Shadows

About 100 people attended the showing of the documentary film ‘ Voices from the Shadows’ held at The Forum in Norwich on Friday 2^nd December. This moving film told the stories of  severe ME sufferers and their carers and obviously as Jenny’s father it was both upsetting but also a call to action. The stories showed how many live Jenny’s life of hell, abandoned and ignored by health services. It certainly should be  shown on national television. Unless you could live our lives, you would not believe that ME patients are so badly treated. On the film, some had died and that too will amaze people who are unaware that people do and can die. In the film, we went through the pain of their deaths and the anguish of the families. One of the most upsetting moments was a young woman, totally bed-bound, who lived in a darkened room and was sensitive to any sound. The authorities decided to section her under the Mental Health Act as a psychiatrist had persuaded social workers that the illness was all in her mind. What happened next I would have thought impossible in modern Britain but nothing surprises me any more. The police smashed down her front door, letting in the psychiatrist and the social worker. They turned on the light and obviously it was noisy. The authorities were unaware that the conversations  were recorded by the ME patient. Seeing they came to ‘ section her’ the conversations showed that she was intellectually their superior and far more articulate. This counted for nothing and she was taken into a mental hospital and locked alone in a room. It took solicitors a week to get her out but the damage was irreversible and she died.

What the film showed was abuse at the hands of professionals and a catalogue of inhuman treatment and the disinterest of politicians and media in the lives of 250,000 in the UK whose lives are turned upside down by this disease. ME patients have to endure their doctors blaming them for not getting well and this rang true especially after Jenny’s treatment at the hands of  the Norfolk and Norwich Hospital.

Everyone felt sombre at the end and the Lord Mayor of Norwich was visibly affected. It was a shame that none of the Norfolk MPs who were invited could attend. The event was put on by Invest in ME, a charity which campaigns for biomedical research into ME. Invest in ME is mounting a campaign called ‘Lets do it for ME’ and this was discussed during the evening. This is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research and treatment at the University of East Anglia. The centre aims to translate biomedical research findings to appropriate treatment for patients with ME, as rapidly as possible. We were also encouraged to write to The Chief Executive at Norfolk and Norwich about the offer to provide and fund an ME consultant from a London Hospital which the Chief Executive has not responded to.

The evening was a call to action and there was a  real sense that we should be angry and no longer let those whom we love, to suffer in the shadows. Dr Leonard Jason, Director at the Centre for Community Research at DePaul University,  wrote (talking of ME patients)

‘ by their grace we have entered a new terrain, one filled with the miraculous- the capacity to endure pain and the refusal to be stigmatized by a Kafkaesque, Orwellian health care system. Their courage and life-affirming stories challenge us to act. These ‘ voices from the shadows’ force us to recognise the needs of children and adults with ME and join their fight for a cure.’

Further information can be found at

www.investinme.org

http://voicesfromtheshadowsfilm.co.uk/

 plus a trailer for the film at http://vimeo.com/24683179

Review & interview by Clare Dudman, award-winning British novelist:

http://keeperofthesnails.blogspot.com/2010/01/sunday-salon-rainbows-in-my-eyes-by-jk.html

Review by Wayne Jacobsen, author, speaker, publisher of ‘The Shack’:

http://lifestream.org/blog/2010/07/19/words-of-life-in-a-world-of-pain/

Review by the Church Times:

http://www.churchtimes.co.uk/content.asp?id=99038

Amazon Customer Reviews:

http://bit.ly/kL7he7

Jenny welcomes all reviews. So if you’ve read ‘Rainbows in my eyes’, we would love you to write a review either on Amazon or your [...]]]> All the reviews of ‘Rainbows in my eyes’

Review & interview by Clare Dudman, award-winning British novelist:

http://keeperofthesnails.blogspot.com/2010/01/sunday-salon-rainbows-in-my-eyes-by-jk.html

Review by Wayne Jacobsen, author, speaker, publisher of ‘The Shack’:

http://lifestream.org/blog/2010/07/19/words-of-life-in-a-world-of-pain/

Review by the Church Times:

http://www.churchtimes.co.uk/content.asp?id=99038

Amazon Customer Reviews:

http://bit.ly/kL7he7

Jenny welcomes all reviews. So if you’ve read ‘Rainbows in my eyes’, we would love you to write a review either on Amazon or your blog or if you write for a magazine/newspaper.

First of all, she would like you all to read the post she wrote for M.E. Awareness Week, called ‘Why care about M.E.?’: http://www.jkrowbory.co.uk/2011/05/why-care-about-m-e-m-e-awareness-week-2011/ Please [...]]]> Jenny is extremely ill, as you all know. She has just about been able to convey to us a few thoughts for today, International M.E. Awareness Day, for us to type up.

First of all, she would like you all to read the post she wrote for M.E. Awareness Week, called ‘Why care about M.E.?’: http://www.jkrowbory.co.uk/2011/05/why-care-about-m-e-m-e-awareness-week-2011/
Please share this above link with all the people you are able to, both online and offline. This is very important to her.

There was a song Jenny heard when she was little called ‘I will speak out’. She didn’t know what exactly she wanted to do with her life back then, but she said that whatever she did, she wanted to do what the song lyrics described. Even though she is so ill, we believe she is achieving just that by raising awareness for M.E – speaking out for those who have no voices. Here are the song lyrics:

I will speak out for those who have no voices
I will stand up for the rights of all the oppressed
I will speak truth and justice
I’ll defend the poor and the needy
I will lift up the weak in Jesus’ name

I will speak out for those who have no choices
I will cry out for those who live without love
I will show God’s compassion
To the crushed and broken in spirit
I will lift up the weak in Jesus’ name

Jenny also conveyed that she wanted to share three verses from a poem called ‘Invictus’ by W.E.Henley for anyone who is going through tough times/feeling particularly battered by life:

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

I am bed-bound, unable to sit up and unable to talk. It is extremely difficult for me to eat, I have to have bedbaths and in order to go to toilet, I have to slide onto [...]]]> “Justice will not be served until those who are unaffected are as outraged as those who are.” ~ Benjamin Franklin

I am bed-bound, unable to sit up and unable to talk. It is extremely difficult for me to eat, I have to have bedbaths and in order to go to toilet, I have to slide onto a commode beside my bed.

I’m sure that there are many, many people in the same situation throughout the world as a result of various diseases or tragic accidents. They are treated with respect and compassion by doctors. Unfortunately, the disease that has caused my predicament is Myalgic Encephalomyelitis (M.E.). Despite the severity of my symptoms and 24/7 intense suffering, I am treated like dirt by doctors. They have been dismissive, arrogant, rude, abusive and neglectful. I like to believe the best of people, so I put their behaviour down to their ignorance of M.E. They are simply following their out-of-date knowledge and training.

As far as I understand, NICE (National Institute of Clinical Excellence) guidelines prevent doctors on the NHS from treating M.E. patients in a biomedical manner, despite evidence of abnormal test results. Professor Anthony Komaroff (of Harvard Medical School) confirms “There are over 4,000 papers on the biomedical nature of ME/CFS…spanning over 60 years.” So it beggars belief that most doctors still believe that this is a psychological disorder. But it is not surprising since the psychiatrists who have the government’s ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption in The House of Lords: http://www.meassociation.org.uk/?p=582 

The UK and NICE are on record as not acknowledging the World Health Organisation’s classification of M.E. as a neurological disease (disease of the brain, spinal cord and nerves). Unfortunately this all means that the NHS’s treatment approach is based on the should-be-void psychosomatic model of M.E./CFS. These treatments, e.g. GET, are actually very harmful and dangerous for M.E. patients. 

As a consequence of the belief that M.E. is a psychosomatic disorder, next to no money has been spent on biomedical research into M.E. in the U.K. Even hayfever gets more research funding than M.E.  So M.E. patients are left without a cure, waiting for privately funded research to bring us one. Some patients have been waiting for decades. Those severely affected are in a living death, invisible to the world, only slightly alive.

I really cannot implore you enough to take the time to read these shocking and horrific accounts of M.E. patients who have been abused by doctors. These are just a few of the ones I have heard about:

Sophia: http://www.sophiaandme.org.uk/

Lynn: http://samedifference1.com/2011/04/18/a-review-of-one-last-goodbye/

Eilidh: http://www.meassociation.org.uk/?p=2748

Theda: http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html

To a lesser extent, me: http://www.jkrowbory.co.uk/2011/04/jennys-hospital-report/

Are you outraged? “Justice will not be served until those who are unaffected are as outraged as those who are.”

_______________________________

More info:

[For my story of severe M.E. and me, see: http://www.jkrowbory.co.uk/severe-me-and-me-–-my-story/  and a 1 year later update here: http://www.jkrowbory.co.uk/2010/10/message-from-jenny-update-19th-october/ ]

[About ME: It is an infectious neurological disease that occurs in both epidemic and sporadic forms.
Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.” The severity of the illness varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.]

[A documentary about ME and the epidemics of ME that have occurred:   http://mecfs-mystory.blogspot.com/2010/11/i-remember-me-documentary-about-mecfs.html ]

M.E. Awareness Week = 8th-14th May 2011
International M.E. Awareness Day = 12th May 2011
Please feel free to link to this post on Twitter or Facebook etc.

In order to be able to write this post, Jenny wrote it bit by bit on her iPod – a few sentences every day for several months. It took a lot out of her to do so.

Jenny was in a very vulnerable [...]]]> Jenny came out of hospital on Thursday 14th April.  She had originally  been admitted by her doctor as an emergency admission into the Acute  Medical Unit on 7th April. She has come out of hospital in an even  worse condition than she went in. We hope the damage isn’t permanent.

Jenny was in a very vulnerable position as she was barely able to  talk. The many doctors she saw were bullying and abusive and (even  admitted) that they didn’t know anything about M.E. They told her to get up and exercise and that there was nothing wrong with her. However, there was 1 doctor on the Acute Medical Unit who was nice to Jenny (who saw Jenny’s body’s reaction when they made her sit up for the chest X-ray – Jenny blacked out and her body went into convulsions).

She was then moved to Guist Ward for the weekend, where they were  measuring her fluid input and output, taking blood tests etc. None of the nurses or doctors really understood M.E. and she had to try to educate them. The noise and constant activity of people coming into the room and making Jenny do things has completely physically decimated her body. There were one or two kind nurses and doctors, but they were few and far between. It was not nice for Jenny to hear doctors and nurses whispering things about her outside her door.

She was then moved to Dunston Ward on 11th April, where they would be able to perform the gruelling test for diabetes insipidus (nothing to do with normal diabetes or blood sugar). 1 (newly qualified) doctor on the ward apologised to Jenny for the way another doctor had spoken to her who had told Jenny to get out of bed and exercise. The nurse who supervised the test was kind and had to do the 12 hours all by herself as her normal co-worker couldn’t be present. 2 doctors took it in turns to stay with Jenny as  suitable heart monitoring equipment was not available.

We so hoped that this would be a turning point for the better but the way the health system works is that you are referred by the GP for a particular test and when that test is completed in that hospital department, you are referred back to GP care, even if there are other outstanding or pressing health concerns still which would warrant investigation. So although diabetes insipidus has now been ruled out, we don’t know if the GP will pursue the Postural Orthostatic Tachycardia Syndrome (POTS) again or not.

Jenny had not slept at all since the 13th March and when she went into hospital they put her back onto Clonazepam, which gives her 2 broken hours a night. As you can imagine, the sleep deprivation is hell for her. Her heart symptoms continue to be unbearable. She is utterly wiped out. It is difficult now for her to even open her eyes.

Thank you again for thinking of Jenny. 

What is it?   We would like everyone who has ever known Jenny to write her a letter in which you recount your memories of her/what she meant to you/how she’s touched your life. It would be great if you could reminisce about things you did together or things you remember her saying or doing or [...]]]> The ‘Dear Jenny’ Project

What is it?   We would like everyone who has ever known Jenny to write her a letter in which you recount your memories of her/what she meant to you/how she’s touched your life. It would be great if you could reminisce about things you did together or things you remember her saying or doing or if she was particularly kind to you. You could tell her what you remember of her character/who she is/what you thought of her. If you’ve read her poetry book, you could say which poems you liked/if they’ve helped you through a rough time/inspired you.

Deadline: We need to have received your letters by the 29th April (her birthday), when we will present your letters to her. So we’ve given you plenty of notice!

Our purpose: Jenny is bed-bound, unable to sit up, unable to talk and has to be bedbathed by a nurse. There are so many things that are wrong with her body, doctors don’t know how to fix it. She lives in a place of agony and suffering every minute of every day – she doesn’t ever get a break or holiday from it. Jenny is a fighter, but we would really like to give her a boost with this project. We would like to reach into the darkness and show her some light. Jenny treats everyone she meets as the most special person in the world, so even if you think that you haven’t been significant in her life, you have. And we would REALLY like you to write to her. If you’ve received this message, that means you’ve meant something to her.

Length: The letter can be as short or as long as you like. It can be a few lines or several pages. It depends how much you remember of her. Nothing is insignificant – we would like to present her with as many letters as possible. We want to remind her how many lives she has touched. Anyone who has ever gone through a major illness will tell you about the lack of confidence you go through and the feeling of a loss of identity. We want you all to remind her who she is.

 Where to send the letters:

 If you have our home address, please send your letter straight here. 

If not, you can e-mail it to: books@jkrowbory.co.uk and we’ll print all the letters out.

NB if sending it by post, please mark your letters with a little  circle in the bottom left hand corner of the envelope so we know it’s  not just normal post.

http://mecfs-mystory.blogspot.com/2010/11/i-remember-me-documentary-about-mecfs.html

Jenny’s health continues to deteriorate. As most of you know, she is bed-bound and unable to sit up. Symptoms of cardiac insufficiency are present at rest and discomfort is increased with any slight physical activity. She is lucky if she manages to wash once a week and it is very difficult for her to [...]]]> Health Update

Jenny’s health continues to deteriorate. As most of you know, she is bed-bound and unable to sit up. Symptoms of cardiac insufficiency are present at rest and discomfort is increased with any slight physical activity. She is lucky if she manages to wash once a week and it is very difficult for her to talk and eating is also very difficult for her (and the exertion of doing so gets her worse).

People ask how Jenny is. The best way I can answer that is listing her main symptoms:

- Even at rest she has shortness of breath, her heart strains to pump (a constant 24/7 uncomfortable pounding; feels like it’s beating wrongly/stiffly)

- Stabbing chest pain, left arm pain

- Heart often misses beats, sometimes is fluttery/trickly

- She experiences both tachycardia & bradycardia (obviously not at the same time!)

- Swollen hands, especially at the end of the day

- All the above symptoms increase with any slight physical exertion. Her heart misses more beats, increased chest pain/crushing pain in middle of chest, left arm pain and shortness of breath.

- Insomnia: she gets approx 2 hours broken sleep per 24hours

- Low grade fever

- Sore throat

- Vertigo

- Low blood pressure.

- Chronic constipation

- Exhaustion and muscle pain

- Severe headaches (hurts to move her head)

- Painful lymph nodes/glands in neck – sometimes swollen

- Cough

- Muscle spasms/twitches/tremor

- Noise and light sensitivity

Doctor News:

After moving to Norwich, Jenny has not had good experiences with GPs. The first two she tried were rude, bordering on abusive, and didn’t believe in M.E. as a biomedical condition. The third one currently seems to be ignoring her, despite her telling him of the worsening situation. All she wants is for them to help her with her increasingly restricted capabilities.

Treatment news:

Jenny has been on Dr Chia’s Equilibrant (Oxymatrine) tablets for 3weeks, though they could take a year to work. We’ll see.

Jenny was on the waiting list of a top M.E. doctor in the U.S. and although she has enough money in the Medical Fund Society to see him and get treatment, there is not enough for an air ambulance there and back (~£90,000 more)

Poetry News:

- Jenny’s Doctor Who poem called ‘The end of the tenth Doctor’ came runner-up in a competition judged by Adrian Plass and Authentic Media: http://bit.ly/be6lWy (4th poem down)

- Links to all the reviews of my poetry book ‘Rainbows in my eyes’ are here: http://www.twitter.com/JKRowbory

Thank you to:

- Christine, Rachel, Alex, Laura, Victoria and George for keeping in touch when you can. Jenny finds it frustrating/upsetting that she cannot reply when you send a message or letter. She has so much to tell you all, but is unable to. She hopes you understand and that you keep sending her messages when you can. She thinks of you often but understands it’s hard for you to keep in touch with a person who can’t reply.

- Mum, Dad, Simon & Keith. Likewise, she finds it upsetting that she has things to say and tell them, but has no strength to talk.

- People on Twitter. Jenny goes on Twitter on her iPod touch. She is extremely ill whenever she writes a tweet and feels guilty that she can’t reply to everyone. She asks that you don’t ask ‘how are you?’ – she knows that it’s only very well intentioned and because you care, but she doesn’t like to keep telling people bad news! Also, she likes to use her limited tweeting capabilities for fun things/her interests.

‘How does Jenny spend her day?’: People are still asking this question, although Jenny answers it on the website:

Her life involves just about managing to prop herself up enough to eat, getting to the mini portaloo in her room, shuffling to the bathroom once a week/fortnight to wash in the bath. All these “activities” cause her symptoms to get even more severe and she has to lie still in between them in order to be able to do them. Her treats involve watching a bit of television from her bed (though audio and visual stimuli are also exhausting) and going on Twitter on her iPod whilst lying flat. She can sometimes manage a few tweets a day, but that takes a lot out of her too.

In conclusion:

I think Jenny is holding her body together with sheer will power and determination. She is fighting for her life with all the strength she has and still hopes and believes that she will return to health. Please keep praying and praying and praying (if you are of that inclination).