Jenny was due to start a new medicine in January but quickly found out that it did not react well with one of the tablets that she was already on (Clonazepam, which she takes as a sleeping tablet). Also, they both prevent each other from working. So it was decided that Jenny was going [...]]]> March 2012

Jenny was due to start a new medicine in January but quickly found out that it did not react well with one of the tablets that she was already on (Clonazepam, which she takes as a sleeping tablet). Also, they both prevent each other from working. So it was decided that Jenny was going to gradually come off the Clonazepam (which is a long and agonizing process that doctors say is worse than coming off heroine) so that she could then start the new medicine.

She is now in the second month of a sixth month process of gradually reducing the Clonazepam dosage. She hasn’t slept at all since January (the Clonazepam was giving her two broken hours of sleep a night before she started to reduce the dose). This complete sleep deprivation, plus the many horrendous withdrawal symptoms, are completely doing her in. She’s determined to keep going though so she can start the new treatment in several months time. She has to be extremely careful as previous attempts at coming off the Clonazepam too quickly have caused seizure-like episodes and increased heart muscle stiffness. Please keep her in your thoughts.

She can sometimes go onto twitter on her iPod but just wants to keep it for light-hearted matters and not talk about her health. Please don’t be offended if she’s unable to reply to you.

The M.E community are asking people to sign an e-petition which will release  and make freely available all information which is currently embargoed relating to M.E held at the National Archives.

The petition asks  for full disclosure of all documents, including correspondence with the medical profession,  relating to [...]]]> ~ This post is by Ian Rowbory (Jenny’s father):

The M.E community are asking people to sign an e-petition which will release  and make freely available all information which is currently embargoed relating to M.E held at the National Archives.

The petition asks  for full disclosure of all documents, including correspondence with the medical profession,  relating to M.E. And C.F.S. held in the National Archives at Kew,UK with particular reference to ref BN 141/1. It is a closed document not available for public access until 2072.
You can sign by going  to http://epetitions.direct.gov.uk/petitions/14242

You must be a citizen or normally resident in the United Kingdom to sign the e-petition.

The petition states that such revelations may yield clues to a better understanding of a physical cause or underlying disease process of a discrete neurological illness, Myalagic Encephalomyelitis, unjustifiably bundled within the collective diagnosis CFS or taken to be synonymous with it. This might, in turn, lead to effective treatment and hopefully a cure or significant recovery for this dreadfully debilitating illness, which affects millions world.

The target is 100,000 signatures which would make the petition  eligible for debate in the House of Commons. The closing date is 23rd of February 2012.

I  am Jenny’s Mum and I went to a talk given by Dr Ian Gibson on Saturday December 3rd 2011 in Lexden, Colchester, Essex, UK. Dr Gibson had been invited to speak by the Colchester M.E. Self Help Group and he spoke on ‘The Science of M.E. [...]]]> ‘The Science of M.E. (Myalgic  Encephalomyelitis) and Medical Politics.’

I  am Jenny’s Mum and I went to a talk given by Dr Ian Gibson on Saturday December 3rd 2011 in Lexden, Colchester, Essex, UK. Dr Gibson had been invited to speak by the Colchester M.E. Self Help Group and he spoke on ‘The Science of M.E. (Myalgic  Encephalomyelitis) and Medical Politics.’

Dr Gibson is not a G.P. He is retired from medical  research and from being an Member of Parliament for Norwich, Norfolk,UK where he still lives. One of his interests is M.E. The talk started with a little resume of the premiere of the film ‘Voices from the Shadows’ which he and about 100 others saw the previous night in Norwich. ‘Voices from the Shadows’ is a film giving a voice to the many severe M.E. sufferers  and their families and carers in the UK. When the film finished, he said, you could have heard a pin drop. The premiere in London is this Tuesday 6th December 2011. There is a lovely coffee table type book called ‘Lost Voices’ which accompanies the film and is available from the charity Invest in M.E. However, despite the good turn-out, he said, there were many people invited who did not come – a sign of how the illness is currently viewed by many as mainly psychological.

Dr Gibson has faith in science. He believes that science is the way forward – proper scientific medical research into the causes of M.E.  should be the priority. He touched on his previous work with breast cancer, saying how crucial research had been into this condition and how outcomes had favourably altered due to the research done. He hoped the same could be done for M.E. To this end, Dr Gibson is working with Invest in M.E. and the university in Norwich to try to set up a Centre of Excellence for M.E. The target figure required for this is £100,000. They have raised £25,000 so far. There is a virologist and an immunologist prepared to give their time and names to this, as well as a consultant who will travel from London once a month to see patients. It is envisaged that the cohort of patients would be from the local area which was previously covered by the consultant Dr Mitchell.

Being an ex-M.P., Dr Gibson is well-used to and known in UK political life and he is also acquainted with the medical politics of M.E.  Dr Gibson joked that until M.E. is given a spot on Eastenders or a similiar ‘soap’, the illness would remain largely misunderstood! He acknowledged the disappointing state of current relationships between scientists regarding M.E. and again stressed that it will only be through thorough and technologically advanced scientific research that a breakthrough will happen. He acknowledged that the XMRV research looked ‘off the table’ as it had not been replicated. He is really hoping that the University of East Anglia will be at the forefront of new research and that it would put East Anglia ‘on the map’ internationally as far as M.E. is concerned. He is full of hope that science will come through for M.E. in the same way it has for cancer.

I’m glad I went to the talk. Dr Gibson seems genuinely concerned for people suffering from M.E. and the impact it has on families and communities. I hope he and others succeed to set up this Centre and in years to come maybe East Anglia will be a centre of M.E. medical effort for the quarter of a million sufferers with the condition here in the UK.

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

http://think-left.org/2011/08/04/welfare-reform-and-mecfs/

Don’t be put off by the title. It covers everything from the phone hacking scandal, the Big Society, Evidence-based Medicine, privatization of the NHS, welfare reform, M.E., Simon Wessely and private insurance companies. I wish that everyone [...]]]> Whatever you think of the content, this is an incredible interview; it’s very compelling and relevant to everyone:

http://think-left.org/2011/08/04/welfare-reform-and-mecfs/

Don’t be put off by the title. It covers everything from the phone hacking scandal, the Big Society, Evidence-based Medicine, privatization of the NHS, welfare reform, M.E., Simon Wessely and private insurance companies. I wish that everyone in the world would read it. Please read and share! It’s a lot more interesting than I’ve made it sound! An essential read.

What I [...]]]> Everyone is currently talking about Terry Pratchett’s programme on assisted dying. I didn’t get to watch it as it was scheduled too late for me (I have Lights Out very early because I’m so ill). Other people’s choices are none of my business, so I have no comment or judgement on the issue.

What I can say is that I’m very very glad that I exist! However, I have a worse quality of life and suffer far more significantly than most people who commit suicide or who go to Dignitas. My condition is constantly deteriorating and every day there is the threat that I might die. Every day I don’t know if this will be the day that one of my organs might finally completely fail. Would others consider that my life is not worth living? I’m bed-bound, unable to sit up, unable to speak; a nurse bedbaths me, someone has to hold a straw to my mouth for me to drink my liquid food. My current condition is unbearable. The severe symptoms, 24/7 physical distress and agony is intolerable. And yet, I’m still alive. I see the minutes moving by on my clock and I’m still here. My will to live, to survive, has never been stronger. I don’t want to die. In fact, I never want to die. As I said, I’m very very happy that I’m alive!

People say “You must be so brave. I could never cope with what you’re going through.” Brave? No. I’m absolutely terrified most of the time. Besides, bravery implies a choice. I have no choice. You don’t choose to be ill. Illness strikes anyone: the brave and the cowardly. And I’m one of the cowards. But the minutes go by one by one and I have to live with it, live in the hell. I’m completely helpless to change my situation. Doctors can’t get me better. I’m desperate to get better though. I try treatment after treatment. I take tablets and supplements. I don’t know if I believe they will get me better anymore. I used to get so excited before starting each new treatment regime/medicine, thinking ‘this will be the one; this will be the thing to get me well.’ After so many attempts and failures, my hope is dead. But I keep on trying. I am so desperate to be healthy once more. If a medicine is going to work, it’s going to work. It either does or it doesn’t – it doesn’t need my hope or belief to work. It hurts too much to hope.

It’s like God – he either exists or he doesn’t. Hope or belief doesn’t change whether he exists or not. Some days I believe in God, some days I don’t. My headaches are so severe that I can’t formulate thoughts or pray. On the days that I am able to think, it hurts too much to bring myself before God or to think of him – of the fact that he has the power to heal me, but doesn’t. But why would he choose to heal me above anyone else? I don’t know what makes him save one person over another. I don’t know what makes him intervene in some cases and not in others. And no amount of praying, of crying out to him in desperation, it seems, can make him change his mind. God is going to do what God is going to do. And there’s nothing we can do about it. He’s God and we’re not. Sometimes I think that I love God – how can you tell if you love him? But I think that I hate him sometimes too. I don’t like that I feel like this, but it is the truth. I guess that’s what a relationship is like – sometimes you love, sometimes you hate. But I figure, if God does exist, he can handle it. And he understands.

I can’t help but feel like I’m living at the very crux of the matter. At the choice we have to make: whether we ourselves want to be God, thinking we know best, wanting our own way, wanting him to do what we want in the way we want, for him to do what we feel is good and right, wanting him to be who we want him to be – the God who rescues us, who always intervenes in the way we want OR whether we surrender, whether we decide to trust him to do whatever the hell it is that he’s doing and that somehow, however unlikely it seems or feels, however little we understand why he could let all the awful things in the world happen, seemingly with no good purpose, that somehow he is working it all out for the best, for our good.

All I know is that it sucks not to be the person God chooses to heal. The phrase ‘God does not give us more than we can handle’ is codswallop (and also, not in the Bible anyway). I can’t handle this suffering. People always say that God will pull through when you’re in the greatest need, that he is faithful. Well I have found him to be spectacularly absent. I don’t know what I expected – maybe my expectations were wrong, or maybe I have the spiritual discernment of a marshmallow – but I thought I would get more help than this, thought he’d be more of a comfort, give me more support, give me more strength to cope than this.

I don’t mind admitting that i’m terrified of dying. I’m terrified that God doesn’t exist and that oblivion awaits. I’m not exactly the best advert for God! My favourite verse of the Bible was always ‘God is love. And those who live in love, live in God and God lives in them.’ I think that verse is what I believe in most. The one thing I know for sure is that I completely and utterly love my Mum, my Dad and my brothers more than anything. So I think that I do believe that I live in God and that God lives in me (even if I’m not aware of it), otherwise I wouldn’t be able to love (since God is love).

So today I do believe that God exists. I don’t understand him or his ways of doing things. I’m just looking for the truth. I’m looking to find how he can be real to me during this time. At this point I can’t find his reality or his kingdom in this place of torture that I’m in. Has anyone got a working pair of God-antennae? Some God-lenses to fit into my glasses? No? I guess i’ll just have to muddle on then.

[This was written over a long period of time, sentence by sentence, on Jenny's iPod]

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/ ]

[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.