I have to admit, I’ve wondered why it was so important to continue to challenge the Pace trial as it has been discredited, “so lets move” on were my thoughts!

But, if David can influence future scientific studies of our illness, then I can now see why it is important to challenge the trial.We do need as patients, as David suggests, for the scientific community to have integrity. To be open to challenge and to be prepared to answer those challenges in a mature and indefensible way! Their job is to provide a pathway to lead towards a cure for ill health, not to get themselves celebrity status in important medical journals. And as I am writing this, I am actually feeling quite passionate about thus subject!

The money used for the PACE trial was provided by the UK tax payer via the DWP. So, we do have a right to question the efficacy of the scientists results. And, if found, as in this case, their methods have been proven to be questionable (dodgy) then there does need to be an investigation. I wish I had got more involved now with the petition of Dr Sarah MyHill!

But it has only been recently that I’ve become more involved in the understanding of this side to my illness.
I have finally decided to stop looking for a cure, stop going to my private ‘specialist’ because frankly I am deteriorating instead of improving, and I think his knowledge into this illness is less than mine!

And private treatment is hugely expensive!

So, after 9 years of being ill, I have decided to put what energy I have into advocacy and raising awareness. (I’m still at the beginning of this particular journey!), and reading and acting upon articles like this!

I think, unfortunately, so many patients with ME are either too ill to help bring about change or just unaware of the politics surrounding this illness. As with myself, they are mainly focused on their own symptoms and treatment!

So, not only do we need to bring awareness to the public and fight the medical bodies responsible for the lack of correct treatment, but we must also ensure that the ME community and their carers continue to rise up as it has done of late, and become more involved (as able) to promote good science and good treatment!

This was a very interesting and thought provoking read! Thank you!