Invest in ME - Guest Gallery of Stories and comments for 2007

Guestbook Gallery 2007

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Lee-Anne	6 December 2007 08:18
Up until November 2005 I was a normal, happy twenty something. I had recently been to Africa with a local charity where we has refurbished a primary school. Life was good, I had even got engaged. Then it struck, I had my first drop attack in my classroom I simply thought I was too hot and had fainted. When I dropped a few more times I decided to go to the doctors. There I was told it was all due to stress. Six months later I still did not have a firm diagnosis. I knew however there was something seriously wrong. I has lost all energy in my legs, it felt like I was trying to walk through treacle. My concentration and levels of patience diminished and still doctors told me it was stress. It was only this April (2007) that I was finally diagnosed with CFS/ME. To be honest life for the last 2 years 1 month has been really hard, my husband struggles to cope and I feel as if any independence I have is being stripped away every day. I have tried several treatments but I know it will be time alone that will be the healer.
Vickie	19 November 2007 13:23
I have been severely effected by ME now for two years. Despite being largely housebound by the illness I have so far not been able to secure DLA benefit. We have had to sell our house and move to a ground floor flat. I had to give up work and my husband has taken early retirement to look after me. We have also spent almost three thousand pounds on alternative therapies and purchased a mobility scooter. Despite all this the DLA are insisting that I do not have enough MEDICAL evidence. I would love their decision makers to have the illness for just ONE DAY and I'm sure that there would be a dramatic change in their attitude. How much longer is this prejudice going to be allowed to continue?
Paul	22 September 2007
I've had M.E. for 3 years after a virus and assault. I have been ignored and neglected in that time, ending up in a psychiatric institute for 3 months where I was humiliated by a social worker when I explained how shattered I felt. I could not take any more. I have tried to kill myself twice through M.E. I have lost family friends and my job and been alienated. I have never known how such an illness can be so debilitating and so destructive yet virtually ignored by so many people. It is awful. I hope one day to be free of the ignorance. Paul

Caroline	25 August 2007
Dear IiME, Thank you very much for all the time and effort that the IiME team generously gives, voluntarily, to the ME community. This great effort has ensured that the 2007 Conference was a great success. It is so encouraging and reassuring to know that IiME is standing firm and campaigning for biomedical research into ME. Having watched the Conference DVD I was amazed at:- The groundbreaking science presented by the researchers/scientists. The level of knowledge of ME by the doctors/physicians. The empathy from other speakers who understood ME from all angles. (Health, Financial, Social etc.) The quiet confidence amongst all the speakers that biomedical science will break the chains of the psycho-social model of ME. The fact that many of the speakers understood that assessment, management and treatments offered to ME sufferers are, unfairly, weighted in the psychiatrists favour. (A few speakers vocally expressed their opinions and well done to them for doing so. They spoke truthfully.) Without the work of IiME this second biomedical conference would have never have taken place. IiME have given the true ME Experts a platform on which to showcase their vital groundbreaking work. With best wishes from Caroline

Rosie	22 August 2007
On 22nd August, the day on which the appalling NICE Guidelines have been published, I just want to congratulate all at Invest in ME for the excellent DVD of the recent Conference. If only the representatives of NICE had bothered to attend and take note, if only the nay sayers who extol the psychosocial paradigm could have the integrity to listen to a much more persuasive argument, then we as sufferers of many years or many decades standing, might be experiencing a much happier and healthier state of affairs now. Let's hope that the call to arms opined by many of the speakers who gave their time and wealth of knowledge at the Conference can now be realised in terms of pressure from those who truly understand this illness to ensure a volte-face by those who pretend they do yet are blinkered by their own egos' and self satisfied aggrandisement. Rosie

Sarah	12 August 2007
I have lived with severe M.E, and a lot of ignorance and prejudice, for 13 years. On many occasions I have been told that there is nothing wrong with me, I am just trying to get attention, or that I am too lazy to do anything. My response is, that if I was going to "fake" being ill then I wouldn't choose an illness where I was going to be disbelieved, ignored, treated badly by most people, loose all of my friends and have my family reject me!

Amanda	09 May 2007
hi there I just wanted to say what a fantastic resource your site is. I developed CFS last January and was really ill for most of last year. I have been lucky to make a good recovery pretty quickly, although I am still not back to full health. I am however working part time and enjoying my life again! Keep up the good work! Amanda x

Natalie	09 May 2007
Thank you so much for the enormous undertaking you have embarked on. I shall be doing all I can to support you all. Natalie.

Maggie	03 May 2007
My daughter is an ME sufferer. She is 24. I think it is one of the loneliest positions to be in for her and for us as parents. I once phoned an ME help line but broke down as soon as a kind voice spoke to me. I never called back. Sometimes I find myself questioning the illness and wondering if there is something else - hopefully treatable - causing these symptoms. Sometimes I cant believe this has happened to our beautiful bright daughter and feel very desperate. There is a lack of support for parents/carers - someone in the same situation to talk to - and no interest/help/support from GP and PCT. Maggie

Gill	Apr 2007
We're so aware of how the years are passing since our son and daughter were diagnosed with ME and how cruel it is for all the children with ME that they have missed out on their childhood as well as suffering enormous pain. We live for the day that someone like Jonathan Kerr will say that there is something that can be done to help, if not cure, all those who suffer from these terrible illnesses. I would like to thank everyone at Invest in ME for all your hard work in organising the Conference for us all. I fully appreciate just how much it takes to do something like this, especially as you are parents of children with ME and carers, it must be a huge amount of work and time that you all put in to it. On behalf of all the ME sufferers and carers who are going, could I say a big thank you to you all.