Joint CFS/ME meeting on 8 October 2008.

Countess of Mar

 

Welcome.

The trigger for my suggesting this meeting was my growing concern that very few MP’s attend the APPG meetings.

At the last one, as you know, by the end of the meeting   there were only your Chairman and myself – preaching to the converted?

Until the message you want to convey is heard loud and clear by legislators and government your objectives will never be achieved.

I have been in the House of Lords for very nearly 33 years. I have taken an active role in some successful campaigns and have watched the progress of other winners. What comes to my mind immediately is that they have always been supported by a united, informed and determined base of people who want to win.

One of my husband’s favourite sayings is “emotion clouds reason”. I fully appreciate that ME is a physically and mentally sapping illness and that a failure to achieve can lead to emotional stress, dissent and division in the ranks. Over the years I have been made very aware of disagreements between the various representative organisations that, even when they are minor in fact, they are fairly major in effect. If I know about them then others who make the vital decisions at central and local level do so also. A difference of opinion – professional or lay, is a wonderful excuse for others to do nothing and doing nothing while going through the motions of construction is precisely what has been happening. I think of the CMO’s Report, the NICE Guidelines and all the advice emanating from the DoH and the DWP, for example.

I know that there are a lot of people with many brilliant ideas beavering away in their local communities. I have enormous respect and admiration for them. They are severely hampered by a lack of funds. Even if funds are made available, they are not powerful enough on their own to evade the bureaucratic sponges that soon mop up the cash.  

Similarly, there are groups who collect money for research. They find scientists who, very often, will have a connection with ME and will conduct a small scale research project on a shoe-string. I cannot help but think that we could build upon the successes of MERUK, Professor Kerr and others if funds were pooled and the ME organisations were in position to demand that government match funding. This would lead to the provision of proper research facilities; would produce scientifically credible results, and would lead to acceptance of the reality of the disease by the professionals who have been so sceptical and have done so much damage.

I do hope that all of us here today will develop a strategy for bringing together all those who suffer from ME or are supporters and that we can then move on to transform the ME scene. Time is short so let’s go.