Presentation of a portfolio of Lyme sufferers testimonies at number 10 Downing Street on 4th November 2004.

The testimonies were collected by Wendy Fox, from people diagnosed with Lyme. Her story can be found on here

She made the following statement, before her trip, describing the content of the presentation and the reasons for doing it:

"The portfolio is of 64 testimonies from mostly Eurolyme members. There are 10 serology positives included. Most of the stories are from the UK, but there are a few from abroad. I have not just addressed the ME and CFS, patients, as some of us have been only diagnosed with Lyme, but most of the testimonies are from people that were previously diagnosed with these conditions. I have concentrated on the UK case histories because it is treatment & diagnosis in the UK that I am addressing. As well as testimonies, I have included abstracts from medical papers describing case histories that concern the fatal effects of Lyme & those that cause disability such as my own. I have also included information as to why serology tests are inadequate & mostly useless, the lack of GP understanding etc etc. The portfolio has a covering letter asking for efforts to be made to address all the problems of diagnosis, testing & treatment. Craig has also written a brilliant letter highlighting what has happened to me & Katrina & again addressing all the problems we face.

The purpose of handing the portfolio in to number 10 is to make a gesture. If people as ill & disabled as me & my companions are prepared to make the journey & effort to create a portfolio then it must be important. The portfolio is intended for John Reid etc but by going to number 10 I hope to get media interest too which raises further awareness. As I said before, we can only do our best. This is all that I can manage for now but I hope one day, when I recover enough, I will be able to do much more for our cause.

By delivering this portfolio we are saying that this issue is important enough for us to do this but what would say much more is if others would invest a little & be there for us. To have a crowd at the gates of Downing Street waving banners of support is news worthy indeed. We all keep saying that changes need to happen. This is your chance to show your commitment. I know you are sick. We all are. I know that you have commitments. We all do. I know that some of you are afraid of being known. We all have been there! Nothing is going to change unless we change it & we can only do that by uniting. I beg all of you that have any possibility of being there to come & support us. If you cannot go then maybe friends or family can be there instead? "

The trip to number 10

Following her trip to London, Wendy described her experience.

"I knew that there was never going to be a chance of meeting Tony Blair but after much communication with the assistant to the Secretary of state I had been promised that they would do their best to organise for him to meet with me. On Tuesday I was told that diary commitments were such that he could not be there but he was handing the matter to health minister Stephen Ladyman. During the time that I made the appointment I was told exactly what would happen when I met with the Health minister and that only the 6 of us could enter and only one spokes person would speak. Late on Wednesday I had further communication to say that Stephen Ladyman had cancelled the appointment after urgent business had arisen. They apologised for causing disappointment but I was assured that he would be collecting the portfolio at the earliest opportunity and he would give careful consideration to the issues that I had raised. He would then write to me in due course. .

We entered Downing Street itself and were searched and then told to proceed to number 10. After photographs were taken we were told to knock on the door. A member of security opened the door and asked if we were there to submit a petition so I said yes. He then took the portfolio and accompanying appendix that I had spent so long creating and said thank you for coming shook my hand and that was it! We questioned why we could not go in and were told that petition presentations did not get to go in. I have to admit that I was stunned and much deflated as I am sure that my companions were. When we did eventually return to the hotel I read and re-read the letter cancelling my appointment with Stephen Ladyman and it said that he would collect the portfolio from Downing Street after I presented it. I now realise that once that meeting was cancelled it then became a simple presentation and therefore we would not have gone in.

The press had also got more important business come up even after all Angela's hard work and my phone call from the BBC saying that they would do their best. With Arafat, a country sports demonstration and Iraqi demonstrations I am afraid that our issue did not stand a chance.

The upside is that thanks to some of our members, 100 leaflets were handed out and we I did have one press interview but to a Chinese paper. The reporter was very interested and has taken lots of information. She said that the paper covers the Chinese community in the UK and Europe and so with the cases of tick bites increasing and there being a large Chinese population over Europe the issue was very relevant to them. She also said that among the Chinese community there are many non-English speaking who would never get to know about this issue.

I felt very down yesterday but on reflection, I am confident that with the contents of the portfolio and the appendix that accompanied it, I have conveyed the inadequacy of our testing and treatment methods perfectly. I have covered every possible argument that could be made with carefully selected medical papers and combined with the heart breaking stories it would take a heart of stone not to question the attitude to Borreliosis. I also feel that through the trip to Downing Street we have had more media coverage than we would possibly have got without it. I have had calls from the BBC asking my permission to give my details to people that have contacted them so we have reached people that do not use the internet. We have set people asking questions and I have already had messages from 2 papers wanting to talk to me again about the trip. We would not have achieved this without something that they consider news worthy.

I have decided to give Stephen Ladyman time to reply (even if it is to say that he has recieved the documents) and if I have heard nothing, then I will write again. Can I ask people not to e-mail the Minister, at least not now? I do not wish to get his back up in any way because we NEED him to work with us and if people start writing in complaint he may get irritated. I have no idea what diary commitments he has or had so feel that we should tread carefully just now. If after that we still hear nothing, then I think it is reasonable that we start writing individual letters / e-mails. I have no right to instruct anyone what to do or not to do but because I have opened a line of communication, I really want the door not to be shut in my face so please can we wait a while on this one?

I want to say a massive thank you to all those who supported me. Angie Howard has worked like a trooper to access media coverage & so far I have done the TV interview, Radio and 3 newspapers in the North. Craig and Katrina have supported me right from the word go on this and I could not have managed without them. Katrina braved the TV too and got Newspaper coverage. Aimee has also braved the spotlight and been covered in two papers. Anne Green found me essential information when I was frantically busy and made things much easier for me as well as offering to be main contact for everyone who came to support us. To everyone who came, I cannot thank you enough for your support."