Also see Lockerbie Conference Presentation as part of ME Awareness

London Demo 2004

12^th May 2004

Once again plans were made for our trip (Linda and myself), south to the “Big Smoke”. Actually, it is not such a bad place to visit, well for a short period and providing you can avoid rush hour! Unfortunately, there was no time for any sightseeing or shopping, although we did manage to see the great “gherkin in the sky”!! 

We had decided to fly to London this year instead of going by “trusty” British Rail as in previous years. I had not flown since I became ill, so it was a big decision, but since we planned to return to Scotland on the same day, this was the obvious mode of transport. 

Bizarrely, all went well, 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 Stanstead around 9.30am. Following an airport breakfast (I thought the “full English” was very tasty, or maybe it was just extreme hunger that made it seem so good), a 40 minute train journey, and then a taxi ride around London, we eventually arrived at Richmond House at around 11.30 am to begin lobbying. It was a good sight to see everyone standing there (some obviously sitting in wheelchairs) as we arrived. 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 suffered from ME for 11 years! 

The BBC took some pictures and we had some other media persons asking questions and carrying out short interviews. At this point, I was struggling to remember my name as my pain levels were shooting through the roof. “Ah yes, we need money to be put into biological research in order to find the cause of ME and help those already suffering from ME.” This sentence seemed to roll off the tongue – automatic pilot style! 

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. 

We then headed back to Richmond House in order to begin the procession to the Houses of Parliament.  

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). (On a personal level, I was beginning to become quite annoyed by the lack of response from MPs. 119 MPs form the APPG, but only one decided to come along on the day. After listening to what Tony Wright had to say, I was personally very disappointed and felt that I had wasted my time, because it was so obvious that he was towing the party line when it came to ME!) 

I would however point out that Tony is generally a very sincere man who has many dealings with a constituent with severe ME (namely, Tanya Harrison of BRAME), but he does seem to be a man who has been influenced by AfME and Chris Clark. He seemed to be very confused about why we were so upset by the present state of offerings regarding the PACE/CBT/GET trials and he believes it is necessary to co-operate and accept these proposals as a “starting point”. I wonder how long we are going to be at this point:- 5, 10, 20 years? (Also we are very fearful, given the nature of the “starting point”, just exactly where the “finishing line” will be and if anyone will actually ever be in a position to cross it!!) 

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. She is someone who speaks from the heart and from experience and someone who shows amazing commitment and dedication when fighting for the rights of ME sufferers. 

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. 

We just wonder when “society” will really begin to take the problems caused by severe ME seriously? 

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. 

If you look below you will find some photos of the day in question. Hope you enjoy them!

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