Members of the Forward – ME Group marked the 10th Anniversary of its foundation at a lunch at the House of Lords on 23rd October 2018. Those attended wished to thank the founder and moving force behind the Group for all her efforts on behalf of those affected by ME/CFS. The dedication and work of the Countess of Mar in creating and leading the Group cannot be overstated and, with the end of the All Party Parliamentary Group on ME/CFS, Forward-ME’s role in political circles is of vital importance.
Thanks to the Countess of Mar’s parliamentary questions and contributions to debates, the profile of ME/CFS has been raised considerably amongst legislators. Having such an influential Chairman has also meant that many important decision-makers (from the DWP, NHS etc.) have accepted invitations to speak to the Group and through the questions raised leave the meetings more informed about the realities of the illness.
ME Research UK’s Vice-Chair and Secretary – Mrs Sue Waddle and Jonathan Davies – joined other Group members in thanking the Countess of Mar for her work and looking forward to the next 10 years of action.
It was on 8 October 2008 that the first meeting of the Group was held and, in fact, Christine & Tanya Harrison, Bill & Janice Kent, Sue Waddle and Dr Charles Shepherd were at this inaugural meeting.
It is worth noting The Countess’s Opening statement from a decade ago –
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 ME Research UK, 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.”
Details of Forward-ME group and Minutes can be found on the Group’s website.