Report on Group Activities

London Demo - 12th May 2004

Once again plans were made for our trip (Linda and myself) south to the “Big Smoke”. Unfortunately, there was no time for any sightseeing or shopping, although we did manage to see the great “gherkin in the sky”!

Bizarrely, all went well with our flights, with no hold-ups or delays at the airport. However it was a very early start, around 6.30am leaving Troon, and we did not get back until 10.30pm so it was a very long and tiring day!!

We arrived at Richmond House at around 11.30 am to begin lobbying. It was good to see everyone there with their banners and petitions.

I was starting to feel the strain, when suddenly it was time to go across to Downing Street with the small number of delegates (including CAME, TYMES Trust, BRAME, RiME and the MEA), who had been picked to make representation to the Prime Minister and to hand over the petitions, information packs etc. I was taken to Downing Street by former speedway driver Gary Frankum as my personal carer – Gary has also sufferer from ME for 11 years.

The BBC took some pictures and we had some other media persons asking questions and carrying out short interviews. After some more photos, we all left hoping that our information packs and petitions would eventually find their way into the hands of Tony Blair.

Eventually we arrived at Parliament and settled into the Committee Room that had been set aside for us for an hour or so. We waited and waited and then we waited some more! After what seemed like an eternity, Tony Wright, MP, turned up. He is the Chairman of the Cross Party Group on ME (APPG).

The Countess of Mar was also there to answer questions. She is a person whom I personally really respect, as she is willing to speak the truth and does not worry about towing party political lines.  And of course we had our own dear Dr Betty Dowsett there on the day, who has worked so hard on behalf of ME sufferers for the past 30+ years. It was great to see her supporting the cause and assisting in our campaign for Government money to be put aside for biological research.

All in all, it was a good and very worthwhile day and we as a Group wish to thank Trevor Wainwright from CAME, who organised the event in a very professional way. Let’s hope all our efforts are rewarded (this time) by funds at last being invested in the biological research studies that are so urgently required in order to find a cure for ME.