In the 25 years that I have been working with people with ME the one wish that unites them all is that they should be listened to and believed.
At last, the tide seems to be turning. Real money is being invested in biomedical research here in the UK and in the USA. This is being conducted by people who earnestly want to find cause and cure for this awful disease. Since I founded Forward-ME in 2008 with a core group
of the major ME charities and individuals who have a particular interest and influence in the ME world we have been able to show that people with ME are able to work together amicably to achieve their goals. Our main objective has been the redrafting of the 2007 NICE Guideline for CFS/ME. The draft, published in November 2020, was a huge step forward. We had anticipated that there might be a backlash from those with an interest in maintaining the current guideline. With the leadership of the new Chair of Forward-ME, Andrew Morris, we are aware of the need for an alternative influential view.
I am truly heartened by the formation of Doctors with ME. Their appearance has been like a dream come true for me. They have the understanding and drive to take ME into the world of real medicine based on the foundation of their personal experiences, knowledge, and ability to communicate. Thanks to them, I am sure that very soon people with ME will feel as positive as I do about their own future. It may take a while to complete the transformation, as entrenched views need to be countered, but it will happen.
(Countess of Mar)
3 July 2021