Submissions and Comments from Invest in ME Research
Below is a timeline of submissions and comments from the charity in order to follow the
flow of involvement from the charity in the UK Clinical Research Collaboration (UKCRC) ME/CFS Research Working Group.
In May 2022 a statement was made by the then Secretary of State for Health Sajid Javid that he would set up a meeting to "drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this
field" – following his disclosure of a relative with ME .
Invest in ME Research were not invited to any of the preliminary discussions or meetings and only received an invitation to join an already created working group on 1stSeptember 2022.
The following timeline shows the input to the UKCRC from the charity.
After learning of the announcement by Sajid Javid in May and gaining information from the internet then we composed this article in June 2022 posing the question of whether this is really something new, or yet another initiative that spawns no actions.
We also commented that what had been developed in Norwich Research Park with a promising Centre of Excellence should not be ignored, but embraced as the foundations for future development.
August 2022: Centre of Excellence for ME Executive Summary Document Update
An update to our Centre of Excellence for ME Status document for MPs.
Also containing our proposals for avoiding reinvention of what already exists.
We submitted a document that we have input to the recent UK Clinical Research Collaboration
ME/CFS Research Working Group initiative, to which were invited to participate some time after
it had begun, and after documentation on its objectives had already been decided.
Some of the activity in the research working group in the first half of 2023
Due to illness and other engagements (such as preparing for the International
ME Conference Week 2023) that conflicted with meeting dates we have missed meetings
in 2023. However, we have remained engaged and continued
to input comments and our original comments from 2022 remain.
We have had to trust minutes from meetings when not present.