From IiMER:

The European ME Research Group (EMERG) worked with the NIH to form a working group for outcome measures following the #BRMEC10 Colloquium held in 2021.
This work is ongoing.

As Professor Carding writes above the RESTORE_ME clinical trial will use objective measures and collaboration has been set up with other departments and disciplines in Norwich Research Park to effect and analyse these measures.
A good basis is therefore becoming available for future research.

from IiMER

Use of standardised criteria is long overdue in research into ME.
Any research into ME that receives public funding ought to have as a pre-requisite that standard and consistent criteria have been used for stratification [5] .

For the RESTORE_ME clinical trial the research criteria being used are the ICC criteria.

from IiMER

The charity has often stated that severely affected patients should not be excluded from research into ME where practical.
Despite limited resources this has been evident from early on in the first research project funded by Invest in ME Research the research team were involving severely affected, sometimes even travelling for a day to reach patients who would not otherwise have been included.
Some comments from the IIMEC8 international conference in 2013 .

from IiMER

This was one of the reasons for forming the European ME Research Group (EMERG) where experienced research teams can collaborate across disciplines as well as across sites and more funding could be attained due to the increased capacity offered.

from IiMER

In fact the MRC record over the decades has been extremely poor, bordering on the inept. Despite communicating several times to Sir John Savill - CEO of the MRC [6] . [7] . - and being assured that this was in hand nothing tangible has been done.

There have been no worthwhile champions for ME in the agencies dispensing public funding in the UK. One can look back as far as 2003 and 2011 [8] . to see words, but no actions.

This is another reason for recommending further development of the Centre of Excellence for ME in Norwich Research Park that the charity has been proposing and facilitating since 2010.

Imagine what could have been achieved if the MRC had invested in our proposal instead of spending years of ineffective sideshows and funding of the wrong type of research? [9] .

from IiMER

Invest in ME Research has had this view since our 2nd International ME Conference in 2007. Since 2011 the charity has been organising annual international research Colloquiums bringing international researchers together [10] and has been working with European partners in the European ME Alliance (EMEA) and initiating the European ME Research Group (EMERG) and Clinicians Group (EMECC), with joint research projects being developed [11] .

We have been talking to our Dutch colleagues over the past years and seeing them develop their research agenda and this could easily be harmonised as we have links already established [12] .

We have suggested already to the UKCRC working group that the research agenda created in the Netherlands should be considered [3] as there is no need for reinvention and a possibility could be created to create synergy between the projects and share funding costs with a European collaborative venture.

We also suggest that the model already established and underway in the Netherlands should be considered.

from IiMER

This is true and only the pandemic and lock downs have paused this and forced us to use online meetings.
Our international ME research Colloquiums and public conferences have brought together researchers and clinicians and allowed patients to interact [13] .
We return to in-person meetings in 2023.

We have already created a family of international researchers and this group has been growing in number.

from IiMER

One such centre in Norwich Research Park has been established [16] with researchers at the institute performing projects related to ME, working with other disciplines, collaborating with university, clinical trials unit, university hospital and a local ME clinic that has a couple of thousand people with ME - and collaborations with European researchers.
The research team at Quadram is already doing this and has the experience and capability to expand this.
We already see the overlap between disciplines and research teams in Norwich Research Park and this has enhanced the research being performed - in the clinical trial, in development of objective outcome measures, in raising awareness of ME.
So the model is proven - it just needs more investment to augment what Invest in ME Research has been able to fund so far. [20]
The charity continues to facilitate collaboration with other European hubs.

from IiMER

We suggested to the UKCRC working group that a statement should be issued to the health minister that funding for research should be established and made available up front - already before any plan is established.
If capacity is required to be increased in the research community and if interest and awareness is required to be gained then funding is a pre-requisite.
Otherwise, the end result will just be more documentation that will be left on the shelf.

None of the above will be possible without required funding.

It was a flawed decision in the statement from the Secretary of State for Health that no new funding would be available. Existing methods of applying for funding for research into ME have obviously been failures and attracted little interest or any long lasting changes for people with ME.

This has to change.
Consideration ought to be made to the IiMER proposal to demand funding for the steps outlined above to be performed.

Regarding targeting young/early career investigators - Invest in ME Research had already started this process with our Thinking the Future Young/ECR workshops that were attached to our research Colloquium events [17] .

We collaborated with the NIH to create three workshops in 2018 and 2019, and only paused due to the pandemic situation.