Factor 9 - pledge now to take this play to the Edinburgh Fringe

I am writing this post to ask for your help with the attempt to get an incredible piece of work shown at this year's Edinburgh Fringe Festival.  

A playwright called Hamish MacDonald has written a play called Factor 9 based on the contaminated blood tragedy whereby thousands of haemophiliacs and those with other bleeding disorders were infected with contaminated blood products.  The work is inspired by my friend Bruce Norval, a haemophiliac contaminated with hepatitis C, as I was.  The play premiered in Sweden in March and has so far toured Scandinavia and Wales.  

Below is feedback from an audience member:
"Two actors in front of a smart and really stylish set deliver a tumultuous story... They take us under the skin of two afflicted individuals. And their hunt for answers soon develops into a heartrending sort of crime story... Above all, Factor 9 deals with the intricate connection between cold medical research and economics that in the end reflects how we as society view our sick. And it is an horrific mirror image."   

There is a Kickstarter campaign to fund putting the play on at the Edinburgh Fringe, and it has until the morning of Friday 9 May to raise £16,000 in pledges to take the play to the festival and get it and our campaign vital publicity.  As of today a total of £13,865 has been pledged with 11 days to go and as we are so close to reaching the goal, I am appealing to you to help with the final push.

This link will give you more information and is where you pledge:

Kickstarter - Factor 9

As you know the contaminated blood campaign has been on-going for many years with various anti-climactic moments along the way.  The Penrose Inquiry is currently preparing to report: this is a Scottish government funded inquiry which has considered the subject from a Scottish perspective.  A lot of our hopes are riding on this as a way to shame the UK government into acting - dependent on the results of course.  The inquiry cannot unfortunately assign blame, nor can it enforce action but we are hoping that the evidence it has uncovered will go a long way to helping us achieve a final resolution.  We wait and see.  

Factor 9 was recently featured on Scottish TV News:

STV News Aberdeen

Getting the play performed at Edinburgh will mean mainstream press coverage and raised awareness and this is perfect timing given the imminent Penrose Inquiry report.  Any money you are able to pledge will not be collected until the total is reached.  I have donated what I can and I am asking if you have any spare funds to help towards getting this play into the public eye, and you feel it is a worthy cause, please make a pledge asap. There is a minimum pledge of £1 and, as the saying goes, every little helps.  

I personally would love to see this play, especially if it is on such a world stage as the Fringe.

Thank you to those who have already pledged. 

Do ask, if you have any questions...

In the words of Gloria Gaynor ...

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand's disease
I have less than 3% Von Willebrand's factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it's safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70's and early 80's
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

Meeting with Anne Milton, Health Minister, October 24th

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London.  My MP, Mark Garnier, managed to get me on the list of attendees.  I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today.  We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made.  Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease.  People within the Stage 1 group are ill, but not through liver damage. 

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure.  We believe that none of these objectives were met.  Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help.  Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.  We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness.  We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. 

Some of us belong to the various contaminated blood campaign groups.  I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions.  We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

 

Betrayal and Lies -- Please Share

This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.

It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.

Please take the time to watch and share it where possible.

Thank you x

Letter to the Health Minister regarding the Contaminated Blood Announcement

I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.

I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care.  I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it.  I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure.

I am really sorry to say that upon listening to your announcement I was bitterly disappointed.  Not only did it not offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise.  We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.

The results of the review and the ensuing support you have proposed will not offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.

Some points based on my own experience may help you to understand why I make the statement above.  I have a severe bleeding disorder, von Willebrand’s disease.  I received blood products from the NHS from the age of six months old.  I have been infected with Hepatitis C and exposed to vCJD.  In terms of what your announcement will provide me:

• ·         Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?

• ·         Free counselling – I recently underwent counselling from my GPs.  I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions.  We had barely stroked the surface.  I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support.  You are providing 6000 hours counselling over the next three years.  This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers.  I do not consider this to be a comprehensive solution.  Why impose such a limit?

• ·         Access to a discretionary fund – I have had two courses of treatment for Hepatitis C.  Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards.  Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C.  I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved.  However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain.  The idea that for any financial need I have to come begging to get even a modicum of help is not good enough.  Will this fund replace my lost earnings?  Will it compensate for not being able to get a mortgage or being unable to get sickness insurances?  Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore?  Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home?  I would like to know the remit for this discretionary funding as soon as possible.

What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum.  This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products.  However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.

I would like to also point out a number of other inadequacies that your new scheme will put in place.

• ·         You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing.  This is long overdue.  In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments.  Why is it necessary to have a cut off date at all?  Surely if someone is eligible it doesn’t matter when they apply?  Or is this an attempt to limit the number of applications and therefore the cost?  You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application.  By the end of March 2011 this will be nigh on impossible.

• ·         You are providing support to those who meet stage 2 of the Skipton Fund criteria.  This immediately divides the infected community to those infected and suffering, and those dying.  Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy.  I presume those annual payments cease once the person dies?

• ·         When HIV support was announced, whilst it was a flawed scheme, it at least paid out to all those infected, a decision you have chosen not to take for HCV infected.  I know when those payments were made, the prognosis for HIV infectees was bleak.  Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life.  However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.

• ·         The proportion of our affected community that will receive the ex gratia payments is roughly 15%.  I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.

• ·         I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed.  I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not.  I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help.  But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.

• ·         For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans.  You say it is up to them when and if they administer the same arrangements.  I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.

It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority.  You asserted a number of times that this was not due to cost but how else can one view these measures?

For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness.  Even then what we will be offered will be too little to be of much use and at a time which is too late.  That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children.  I’m not talking about a few exceptions within that 4000, I’m talking about most of us.  It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.

I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since.

I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different.  Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability?  Would you please explain how you think the High Court ruling does not apply?

Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion.  From the estimation I received from Anne Milton:

• ·         You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.

• ·         You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000.  This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million.

• ·         Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.

My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products.  It would also include payments of £750,000 to widows or families of those within the 4,700 who have died.  That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have included carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.

We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring.  And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.

You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:

• ·         A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion.  Or £467,200,000 per annum for three years.

• ·         An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.

• ·         The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on.  You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.

• ·         In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.

This illustration is my own and does not represent the views of anyone else.  Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.

In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest.  The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.

Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.



Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society.  Not holding my breath for replies...

Government Announce Results of their Contaminated Blood Review

I'm really upset. The government are doing the least amount they can for those who meet the stage 2 Skipton Fund criteria and widows who can prove that their partners met that criteria. This is a small minority of our community and an inadequate, difficult to fulfil criteria. It is so minimal I'm bloody crying. 

What about the majority of us affected by this, as Andrew Lansley the Health Minister himself said, great tragedy. Nothing. Actually not nothing, free prescriptions and counselling. Well thanks, that makes up for me being too ill to work, being unable to have children, being a sham of a person and having a totally uncertain future. Nice one. 

I intend to blog more fully about the Government's announcement and their arguments against doing anything more meaningful over the next week.

In the mean time - happy new year.

Contaminated Blood House of Commons Debate - 14.10.10

Around 100 of us crowded into the public gallery in the House of Commons last Thursday to hear a historic back bench debate on contaminated blood products.  Haemophiliacs and von Willebrands, infected and affected, wives and husbands, families of those too sick to be there and widows and children of those who have died.

We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness.  A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.

It started with a worrying turn of events.  The government tried to amend the original debate motion.  Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...".  The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved.  In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.

We were shocked and dismayed by this attempt to wreck our motion.  However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.

Hooray we thought.  There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate.  The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.

MPs paid tribute to members of our community who have died and to those who are still waiting and dying.  Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year.  Where was the respect there?

It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to.  It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted.  To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit.

What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure.  Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.

As one of our campaigners recently said:

'You can't give us back our health, but you can give us back our dignity'.

The greatest despair though, came with the government's apparent inability to work out simple maths.  The question was how did the government arrive at the figure of £3 billion that was in their amendment, and that was their estimated cost of putting in place a similar compensation scheme.  The calculations were apparently accurate but were not able to be produced during the debate.  We are still waiting to see them.  We believe the costs to be far lower. 

We are well aware as a community that the timing on this is far from ideal however it is important to note that the reason we were infected by these devastating viruses was not least because the government diverted money away from developing self-sufficiency within the UK blood products production.  Money was not made available then, over thirty years ago and on many occasions since then when finances were there, administration after administration has ducked responsibility.  We haven't just turned up wanting a hand out.  For years successive governments have ignored the issue. It's not about party politics, it's about doing the right thing and it's about time that the victims of this disaster are given what they deserve - justice.

This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again. 

However the vote was lost.  Why was this?  Because the government had produced a three line whip.  This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang.  It also meant that my own MP spoke passionately for us, but voted against us.

We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible.  However what about getting your sums right before trying to write us off?

We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS.  All we want is to not have to fight for justice anymore and to have our losses recognised.  It wasn't right then, it isn't right now and we won't be going anywhere.

What we came away with is the promise to review the situation by Christmas.  The present government have the opportunity to put this right and they need to know that we will never give up.

Fairness, Mr Cameron?  Mr Clegg?  Let's see some at last.

Ichabod is itchy ...

... and so, the blinking heck, am I!!  

This time of night is a particularly pleasant time for me.  Every night is the same; though it is worse if I am more tired.  Basically I formicate.  Every night.  And it isn't fun.  It's ... hang on a mo ... that is not what I said ... scrape yourself out of the gutter and pay attention ... formicate, I said formicate.  

Here an itch, there an itch - everywhere an itch itch

Formication, according to the wordly-wise wonder that is Wikipedia, is derived from formica, the Latin word for ant.  Formication is the medical term for a sensation that resembles that of insects crawling on (or under) the skin.  Formication is a well-documented symptom that has numerous possible causes. 

She itches here ... she itches there ...

For me, my formication habit began when I had my interferon treatment for Hepatitis C, back in 1999.  It was one of a glut of delightful side effects which still lingers long after that original year of treatment.  The definition - which I only had from my CFS specialist this last year - is uncannily accurate.  If you will: imagine hundreds of ants crawling just underneath your skin (horror movie stylee).  However, they are not just in one spot.  Imagine those subdermal ants crawling on the top of your right foot, for a couple of seconds, then on the inside of your left ear lobe, then on the back of your right index finger, then across your stomach, then your left shoulder blade, then just under your eyes.  Uncomfortable yet??

The Itchy and Scratchy Ros

This pretty much describes the sensations I get when I'm in bed every night trying to go to sleep.  As you can imagine I'm kind of a whirling dervish underneath the duvet, rubbing here, itching there, eee ooo aaa, can't reach the scratchy little devils!!  And no, there are no bedbugs or other actual nibbly, crawly creatures - it is, quite literally all in my head .. and all over my body.  Nice.  I've got so used to them now that I've affectionately and somewhat derangedly dubbed them my "itchy buggers".

To Itchycoo Park that's where I've been.

What did you do there?

I got high
What did you feel there?
Well I cried
But why the tears there?
I'll tell you why
It's all too beautiful

It's all too annoying

It's all too itchying

It is peculiar that I never really get visitations from the itchy buggers during the day.  I often scratch my face to shreds because I have the sensation of an eyelash or a strand of hair on my skin and no matter how hard I try I can't get rid of it, but that's because there's nothing there.  I think that sensation is probly related, but it is only at night that the formication fun really begins.

You scratch my back, I'll scratch my back and leg and neck and toe...

I've spoken to my GP as to why it is I might be getting formicated and they didn't have many suggestions as to what the cause could be, but they did say that it was a common side effect of drug withdrawal.  Hmmm.  The CFS occupational therapist who took my symptom, one I hardly thought worth mentioning, and gave it a name - told me that it might be liver related but also wondered if it could be caused by something in the blood products I constantly inject.  The former was also the opinion of the Chinese acupuncturist that I saw earlier in the year - she saw the crawling as a sign of a toxic liver.  This made sense to me given the Hep C, the interferon and ribaviron I've had over the years.  However when asking the liver doctors they say my liver results are not too bad and my biopsy 10 years ago showed only mild inflamation.  All good but no suggestions of why I might have this problem or what I could do to solve it.

I got it bad, scratch fever

I'd be interested to know if anyone else with CFS or Hep C has this ant-astic issue.  I'm sure it's related to the treatment or the Hep C but I have no absolute proof or concrete evidence to back this wild claim up.

Well fate can be cruel
Life may be a bitch
But that's not an excuse
For my eleven-year itch

Treatment-wise I am now on a sedative type of drug - Phenegran - to help me sleep and this sometimes keeps the itchiness down to a more tolerable level.  However, having had my dose earlier this evening and having already taken my pain-killers for tonight, the itchy buggers have been fairly active during my writing this post.  Inspiring little blighters.


(Mis-quotes all my own)

For ME

Happy International ME/CFS and Fibromyalgia Awareness Day everyone!!

Today, 12 May, is a day for raising awareness of ME / CFS and Fibromyalgia internationally. (Ok - so it's clearly not the 12th any more but that is when I started writing this piece.)

In honour of this I would like to make the subject of my post today me. Or rather ME.


This blog was created to chronicle my bleeding condition - von Willebrand's disorder. This is a rare disorder which means my blood doesn't clot very well. It is a little like haemophilia and has caused me to have an interesting a blood soaked life, since diagnosis at 6 months old.

I'm now 36 and whilst I am a happy little bleeder generally - who finds handling a long term chronic disorder, within my capabilities - the last few years have been a bit tougher. (If you would like to find out more about the von Willies please do peruse my previous posts - preferably with a cup of tea and slice of summat to keep your energy up.)

Something I have blogged less about is my experience of having CFS or ME.

Why is that?

I know my von Willies well. I was born with it. It is who I am. I am a bleeder. I am able to live in that knowledge and with the challenges that presents in a fairly confident, capable and good humoured way.

The von Willebrand's is treated with clotting factors. Which are made from blood products. From these blood products I contracted Hepatitis C way back when they were shooting clotting factor into my little girl's veins.

The Hepatitis C stuck with me, infecting my blood and messing with my liver, until I had the second of two lots of treatment, which managed to eradicate the virus from my blood.

Good news right?

But wait...

I really struggled with the treatment - Interferon and then Pegalated Interferon and Ribavirin.
And I mean really struggled.
It wiped me out.
Beat me up.
Wrang me out.
Shook me up.
Drained me out.
Chewed me up.
And spat me out.
It felt like being in a washing machine for 12 months.

Ever since the second lot of treatment in 2003 I have had recurring CFS or ME.

I still felt I was on the treatment six months later, 12 months later, 2 years later and still now 7 years later. Unable to work. Unable to live the way I used to. Existing. Waiting.

Don't get me wrong I have had periods of being well - being able to work, to live a full life, to fit everything in I wanted to and more....

However the reality now is not so good. My natural outlook is a sunny one. I see my CFS as a grey cloud that contains me and is not always easy to shine through.

The tricky thing is that to the untrained eye I look well. You look at me and don't see the cloud. Or the fog or the mist that clogs up my mind and body.

I used to find it hard to acknowledge the CFS. My mum once gave me a leaflet on ME and said - this sounds much like what you've got. Oh no, said I, that's not me - I'm just getting over the Hep C treatment. I'll be fine in a bit.

Even now if people ask me how I am - I'm fine! Or if not fine - I'm a bit tired.

A bit tired!! Understatement city :)

It is difficult to write how hard things can be. Equally it is difficult to talk about how hard things can be.

That is a problem.

How can I expect people who do not have, have never had ME or CFS to understand what it is like if I don't let it out.

You may be looking at the picture above and saying to yourself - she looks right enough. That is understandable.

If you see me looking well - which I do when I'm in public, most of the time;
or see me getting to the supermarket - which I do some of the time;
or if you have a conversation with me and I'm upbeat - which I try damn hard to be all of the time;
you cannot be expected to understand the reality.

I have tried to be a bit more explicit, but when I mention how exhausted I am - you might say, oh yes I'm tired too.
When I say it's hard to get things done - you might think, oh but you're lucky you don't work, you have plenty of time.
When I explain how hard it is to sleep - you might suggest, perhaps if you did more in the day you'd be more tired and sleep better?
When I say how much my body aches - you might sympathise, maybe if you got out more you would be fitter and be less stiff?

Often I don't have the energy to respond.

To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day - that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast...

To explain that it is hard to get things done because my brain doesn't work properly any more. You know how you feel when you're hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you're talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet. I can't expect you to understand that some days I struggle to fit in getting up and dressed and doing some tidying and making the tea. Let alone cleaning and ironing and paying the bills and having people drop in to see me. The washing machine beep sends me demented. Running out of cat food is a constant worry because it means having to go out to get some.

To elaborate that I can't sleep because I'm so tired it hurts. That my joints ache and my muscles twitch and I can't be still for longer than a couple of minutes without twisting and turning and writhing trying to find a comfortable spot. That I feel things crawling on me - on my arm, then on my foot, then on my back, then my leg, then my face. There's nothing there, it's just a symptom of the CFS, Crawling Effing Sods. That if I do get to sleep I often wake in the small hours and then it starts all over again - the pain and the aching and the crawling and then the mind chimes in telling me that I need to sleep, I need to sleep, I need to sleeeeeeeeeep!!

To tell you that the aches and pains are such that I can't sit still for more than a few minutes without stretching and flexing my legs, arms, fingers. Next time you have the flu and you feel so sore and drained you can't move out of bed or off the sofa - that it how it feels on a bad day with CFS. It feels like my bones are rotting and my muscles are aching and twitching in an endeavour to get out of this body.


Is it better for me to acknowledge the CFS? Does it help to let it out? Or does that just remind me how much fun it isn't??

I know fighting the condition doesn't work - that the energy used constantly battling to overcome the lack of energy and limitations of your body aggravates the condition exponentially.

So do I need to accept ME in order to get better? Embrace my little grey cloud and let it hug me back. Take care of myself rather than push myself to the limit? Listen to my body rather than shout at it? Allow my body to recuperate rather than expect it to continue at an unsustainable pace? Give my mind space to rest and restore rather than shower it with anxiety and pressure and stress?

Love and cherish not berate and frustrate.

Worth a try, right?

Contamination Narration

I found out that I had contracted Hepatitis C from contaminated blood products inadvertently.

I am a 33 year old woman and have Type III von Willebrands disorder (vWd). This is von Willebrands in its most severe form. I was diagnosed when I was 8 months old and since that moment I have needed at least 1 injection per month of initially cryo-precipitate in the 70’s and 80’s, and then 8Y and Haemate P factor VIII in the 80’s and 90’s to control my bleeding. Due to the severity of my bleeding I have also needed a number of blood transfusions over the past 33 years. Initially my mum and dad had to take me 24 miles to hospital and back every time I needed treatment. When I was a teenager I learned how to inject myself and began home treatment.

Having clotting factor blood products available on the NHS was life saving. No-one ever told us of any risks associated with using blood products or having blood transfusions, we accepted that they were the solution to a severe condition – one that would enable me to achieve a quality of life impossible for a severe bleeder, prior to the introduction of clotting factor products.

My mum remembers me having non-A, non-B hepatitis on my notes when I was only a few years old but this was neither explained then, nor when the virus was re-named Hepatitis C.

When I was 19 I was sent to St Thomas’s Hospital in London for an operation on my ankle. While I was being prepped for the operation the consultant, let’s call him Dr S, asked me about my having Hepatitis C. I did not know what he was talking about. I had no idea at that time that I had contracted Hepatitis C. It was obviously in my notes but none of my doctors in Manchester had ever mentioned it to me. This was how the news was broken. I was sitting on the ward, surrounded by nurses doing their jobs and other patients - I felt frozen in time. Dr S may have tried to explain more seeing my shock but I don’t remember anything else he said.

I never confronted my own specialists as to why I had not been told I had contracted this life threatening virus. When I asked for more information on my return home, I was not told about the effect Hepatitis C could have and the prospects for liver damage, cirrhosis and liver cancer. I was only told that it was a virus that could take in excess of 20 years to cause any problems - irrespective of the fact that I could have contracted this anytime after my first injection 19 years ago, a fact I was unaware of at the time. I was advised that I should be careful not to drink too much. Not advised to avoid alcohol, only to drink a bit less with no real guidance as to how much was a bit. I was not told anything about the risk to sexual partners; luckily I had none at that time…

For the next 5 years I continued living my life – finishing university, figuring out what job I wanted, moving into a shared house with other young professionals – activities typical of a young person with a positive future. My Hepatitis C positive status was my only symptom of the virus and I chose to ignore it rather than face up to my uncertain future.

The way I did find about the realities of the virus - the prospects for liver damage, cirrhosis and liver cancer and the measures I should take to protect myself and others was from a support group that I became involved with - the Manor House group. This had been set up to campaign for help for those with Hep C but was a wonderful support and education network for someone like myself.

Due to what I learned I was unable to forget the virus all together. I had to ensure that no-one shared anything of mine. I often have gum bleeds due to the vWd and had to tell everyone I lived with not to use my toothbrush or share my glass or food. I found sexual relationships impossible. If I started to date someone I had not only to tell them about the vWd – a complicated and rare condition but one I lived with – but also felt obliged to make them aware I had HCV. How could I expect someone to start a relationship on an emotional or physical level without warning them? Not only the risk to themselves but the fact that I had an uncertain future due to a potentially terminal virus.

When I was 24 I was advised to take 12 months interferon treatment. I was working as an Events Manager at a large department store at the time. My employers knew about the vWd and the HCV and were happy for me to go ahead with the treatment even though I had explained the possible side effects. I had been told that I’d be injecting three times a week and would possibly feel a little fluey the day after the injection. I’d discussed this with work and they’d agreed if that was the case I could reduce my hours and work on the days in between when I felt better.

The worse thing about starting the interferon was it forced me to acknowledge that I had this life threatening virus in my blood. At that point my future was impossible to contemplate and I found myself thinking what music I would like at my funeral. That’s how it made me feel. I always felt I was a strong individual and that I could handle anything vWd threw at me. This was something else, far beyond my control and it loomed over me blocking out the light.

This course of treatment worked for me while I was on it – the PCR test was negative, but the virus came back immediately I stopped. I had horrendous continuous side effects – leadening fatigue, flu-like shivers and hot flushes, pain like my bones were rotting, furious brief but intense rages, itchy sensations on my skin at night, headaches, forgetfulness and more - I was unable to work after a couple of months of treatment. My company held my job for me for a while but after a few months terminated me because I was unable to guarantee when I would be fit enough to return to work. It took me over 6 months to get back to normal-ish after the 12 months of treatment and my hospital said they would not recommend I do the treatment again because it had affected me so badly.

When I felt well enough to go back to work I had no job and I still had the virus. I decided to retrain in order that I could maybe work from home if I ever did have to take more treatment or was too ill with the virus to get to work. I took out a career development loan and did a computing course.

About this time I met a man through a friend of mine from university. He was a farmer from Worcestershire and was totally unfazed when I told him what I was going through. I explained about my bleeding condition, the virus which had just reared its ugly head again, why I was not working at the time and he asked lots of questions and still wanted to see more of me.

After another year I'd moved to Worcestershire to live with this man, Adrian, I was working in IT and got a new hospital, the QE in Birmingham. They wanted me to go on a 6 month pegylated interferon and ribavirin trial. They said it had a good chance of success as I had genotype 2 and was a fairly young woman.

I was not keen after the last time without really knowing the state of my liver. I asked for a biopsy and even though I was a bleeder they agreed to do it. Unfortunately the biopsy was not monitored carefully and I had an internal bleed into my liver. I ended up in intensive care having had an operation to drain the blood from my liver, to try to control the bleeding and received six pints of blood. I was in and out of hospital for 3 months but at the end they told me my liver was showing only mild scarring - amazing after what I had not been told was probably 25+ years with the virus.

I did the 6 months of pegylated interferon and ribavirin. I struggled with the side effects again during and for 8 months after the treatment and was diagnosed with depression because I was so ill - even with my canny move into computing I was unable to work for the entire time, at home or otherwise. However this time the treatment worked. The virus was negative during the treatment and at the six month test afterwards. I was given the six month result just before Adrian and my wedding day. The virus is still negative, it is no longer in my blood although it has not gone altogether from my body – the doctors are not able to say it is a complete cure. At my last test in November 2006, 3 years post treatment, I was still clear – thank god!

So how is life now I'm virus free?

Since the second lot of treatment I have been left with long term after effects. I'm not complaining because I'm so pleased to be HCV negative but I am concerned by the chronic post-viral fatigue I've been experiencing and how long it has been going on.

I remember feeling appalling a few months after the treatment and convincing myself that the HCV had come back - luckily I was wrong. I constantly expect it to have reappeared from somewhere because of how awful I feel but it hasn't yet, so that's good.

I was diagnosed with post-viral fatigue (chronic fatigue) by my GP due to the time it took me to get over my treatment. After I did get back to work - 10 months after the second lot of treatment, I found that I had a low physical limit beyond which I'd get horrendous fatigue, pains in my bones and joints, headaches, hot head flushes - exactly how I felt on the treatment. It would last for days or sometimes weeks. Mostly it was triggered by getting some kind of viral infection which would somehow set me right back, but could also be just overdoing things and not by any normal standards.

Since the second lot of treatment I have had a number of days and weeks off sick. Before the treatment I had worked my way up into IT consultancy and was really enjoying my job. After the treatment I found an IT position locally which was less stressful but with a lower salary because I didn’t feel capable of working at my previous level. Shortly after I started this job I got pharyngitis and this led to a sudden descent into 7 months of horrendous chronic fatigue and depression caused by feeling so awful so long after my treatment. I was very lucky again and my employer kept my job open for me and enabled me to return part-time and then full-time back at the beginning of 2006.

I was so happy to be back at work and feeling practically normal, only 3 years after clearing HCV. However I was not doing anything outside work because I was exhausted by the time I got home. Too tired to cook or hold a conversation with my husband. Also my memory and concentration have never recovered to the level that they were at before the treatment.

After a whole year of feeling much better and working really hard, I have been off since another throat virus in January of this 2007 until now. Again with the exact same problems – incapacitating fatigue - such that I find it hard to hold a conversation if I’ve done too much, my memory and concentration are really bad, I cannot sleep because of the pains in my legs and the itchy sensations – recently diagnosed as formication, I feel hot flushes in my head and often have headaches.

My GP now says it can't be post-viral (as in HCV) fatigue because it is too long after I cleared the virus and had the treatment, which was 2003. I'm convinced it's still connected but as the docs have no long term evidence to go on I feel like a malingerer.

I'm sure it is the treatment or the HCV which has left me with this chronic / post-viral / call it what you will fatigue problem. I'm managing it and learning to adjust my life to suit. It looks as if I will have to re-think my career again because I cannot continue the job I was doing at the rate I was doing it. I cannot afford to retrain again; we cannot really afford for me to take a pay cut but may have to. My husband is working himself ragged with the constant worry that I may be like this for some time.

My haematologist has suggested I have a ‘tendency’ for this fatigue but I never ever had this problem before the treatment. As a bleeder I’ve always lived my life to the very best of my ability and I resent the implication that I am in some way allowing myself to wallow in this state.

I'm currently off work still. I have improved slightly over the last few months but I'm still having headaches, painful joints, horribly aching legs at night, itchy crawly sensations, raging moments, hot head flushes, huge forgetfulness, incoherence (can't hold a conversation after 8pm), that's all I can think of for now...

I no longer have the Hepatitis C running around my blood but I worry constantly if having it dormant in my body still is causing these problems. I cannot have recombinant treatment because I need the vW factor, as well as the factor VIII, that is present in heat treated factor VIII but not in recombinant. I worry every time I inject myself that I could be, or could already have been, exposed to other viruses. But what choice do I have?