DHSC My full reality: the interim delivery plan on ME/CFS
Observations on DHSC Interim Consultation document
This document carries comment from UK charity Invest in ME Research (IiMER) on the Draft Interim Delivery Plan on ME/CFS recently published by DHSC.
The full response is available here -
Summary
- A year has passed with nothing yet achieved that can be termed a change for people with ME
- The only tangible output seems to be the DHSC Interim Delivery Plan report
- The report contains little, if anything, that was not already known
- Some actions contained in the report will be welcomed, if actually enacted with a sense of urgency
- Many actions contained in this report still seem nebulous for the most part with intent and suggestion being portrayed as concrete decisions
- A survey has been added to the report that seeks views on the interim set of actions
- Urgency is not a priority overall
- No funding has been promised for research
- The existing research centre in Norwich Research Park has not been recognised and its potential for rapid progress in research is therefore lost, with further delays to progress
- There is much doubt about what will definitely be implemented, what the content of planned education and information will include, and no definite research strategy
Invest in ME Research also submitted a reply to the survey requested in the consultation process.
Making a Rapid Start to Change
We repeat here earlier suggestions that we need to make use of what exists already rather than building an extensive list of funding requirements that will likely not be funded
What is already present, supported and functioning should be considered for further investment rather than reinvention or using up more time to delay progress.
Using the ideas already mentioned [3] then a start can be made already to augment foundations in place.
Nothing will happen without adequate funding.
Adequate public funding for research needs to be made available already
to enable the most rapid progress as possible to be made.
References
- Invest in ME Research's Adaptation of UK Government Department of Health and Social Care Description of ME
- Input to 1st September UKCRC Working Group meeting
- Input to UKCRC ME Research Working Group - Our View on a Different Approach
- RESTORE_ME Clinical Trial
- European Research Collaboration
- Dutch research agenda
- Colloquiums and conferences
- PhDs in Europe
- UK Centre of Excellence for ME
- Thinking the Future - Young/Early Career Investigators Workshops
- Our proposal in the UK parliamentary debate 2019 to provide funding for research into ME year for five years
- #InvestinMEresearch2022
