UKCRC
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 [1].
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.
Click below to select year range
June 2022: Déjà vu?
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.
Read MoreAugust 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.
September 2022: A summary of our input to the September 1 meeting
A summary of the input that we gave to the UKCRC ahead of the 1 September 2022 Working Group meeting.
Read MoreOctober 2022: Input to the following meeting of UKCRC working group on 14 October 2022
Professor Simon Carding has provided input to the 14th October meeting of the UKCRC working group meeting.
Read MoreJune 2023: Overview of activity in 2023
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 some
of the few meetings arranged in the first half of
in 2023. However, we have remained engaged and continued
to input comments, emphasising again that our original comments from September 2022
were our view on the best pathway.
We have had to trust sparse minutes from meetings when not present.
September 2023: Department of Health and Social Care/UKCRC Interim Plan for ME/CFS Report
IiMER supplied observations on the DHSC Interim Delivery Plan for ME/CFS Report and also returned comments on the DHSC Interim Survey which had been created and distributed for the public to return.
Read MoreNovember 2023: Input to the meeting of UKCRC working group on 24 November 2022
IiMER participated in the November 2023 meeting. Our comments are here.
Read MoreJan-Apr 2024: Overview of activity in 2024
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 some
of the few meetings arranged in the first half of
in 2023. However, we have remained engaged and continued
to input comments, emphasising again that our original comments from September 2022
were our view on the best pathway.
We have had to trust sparse minutes from meetings when not present.
May 2024: Final Meeting and Conclusion of Project
Observations from and following the final meeting of the Research Working Group
Read MoreReference: UKCRC Document
Input to UKCRC ME Research Working Group Click here
