The recent statement made by 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 – has led some to believe that a new dawn is breaking for ME .
It is, of course, completely understandable that some may feel that we suddenly have a dramatic change for ME. As much as anyone IiMER wish to see huge investment in a sound strategy of biomedical research into ME, and adequate and relevant services from educated and informed clinicians - things we have consistently campaigned for since we were formed.
But words are cheap.
It is all well to have another new initiative come along every few years, claiming to herald a new approach, yet ending up nowhere and wasting more lives of people with ME.
As with the NICE guidelines of 2021 the reality is that all of this could have been done properly a decade or more ago – and was not.
So now we perhaps have a little more publicity – thanks mainly to the number of people falling to long covid and the urgency (and funding) given to the pandemic, and a health secretary who has a relative with ME.
But is this a sea change?
Will things change – and quickly?
At the time of writing little transparency had been shown in informing of the make-up of these working groups. But we can already see that having some of the same players involved who have, in our opinion, been part of the problem over the years does not engender optimism.
One can have views either way on these announcements and only time will tell if anything really changes due to this latest pronouncement.
Yet the history of ME has shown how precarious such hopes for progress have been over the last decades and ought to teach people with ME and their families to be somewhat circumspect in believing more words and giving their immediate support to anything coming from any of the same people or organisations who have been involved in everything for the last decade or two, and which has brought us so little.
We well remember the so-called expert panels that were set up by the MRC representatives all those years ago that were an abject
failure and achieved absolutely nothing – except to waste a few more years of lives.
We also know for certain that high-quality biomedical applications that later received funding from elsewhere were rejected by the MRC at the time.
The only major recent award for funding has been to a project in which the MRC were embedded in the group making the application. If only every research team could award themselves public funding.
The planned working groups being set up (even if they are allowed to contain participants who can think differently and want to make progress) are unlikely to achieve more than we already could do with existing ideas – but they will take time to produce whatever documents they make.
It could be years before likely concrete proposals or specific projects might be funded and implemented.
Obviously, any scheme will result in calls for research to be funded.
Yet that is the case now.
What is coming down the line with almost a cast-iron guarantee will be continued doubts about the government, with ministers potentially coming or going, an election, a cost of living crisis that makes all new projects suspect and leading to research funding being even scarcer.
What is also pertinent though is to realise that Mr Javid has stated that no new funding will be available for research into ME – as there apparently exist existing pathways to access funds already. Mr Javid has also recently said the NHS does not need more money. So it poses the question of what is new with this new initiative?
One only has to look at the current state of the health service – where waiting times for hospital appointments has reached epic proportions and difficulties in seeing dwindling numbers of GPs is creating real issues. This relates also to what to expect from any announcement by Javid.
Worryingly, the NHS and NIHR may well need to adapt to new Covid variants or flu-load. An enormous amount has already been spent on Covid research so can one expect more being available for ME? If so then why could this not have been provided in the past?
So ME will still compete for funding and attention – and Javid says that applications for funding will be covered by existing streams (which are likely to be outside of any EU funding possibilities also).
We only hope that this will not turn out to become another failure that might string this along for years, announce a little bit of funding for diverse projects and make it look like something is happening and progress is being made.
We do not need another merry go round where it appears that things are changing but where we end up in the same place.
Continuing Need for Invest in ME Research
For our part, although not invited to be involved in any of this, we will continue to do what we are doing.
Secretary of State Javid surely knows what IiMER has been involved in and initiated and facilitated - he knows what we have done, and are doing - and what is already present. As do the others who seem to be deciding who is involved and how this transpires.
What is needed is a fresh start that will fund what we have already developed. It would be quite easy to come up with a plan already that would work as the necessary working relationships with others already exist.
There is already established a foundation in Norwich Research Park to build upon and develop that would save years of new discussions. We have a base of research, funded researchers and projects underway, a clinical trial being started with additional research being added, European and international collaboration, a network of European researchers and clinicians, interaction with an international family of researchers and national agencies such as NIH and CDC.
So, there is a really good foundation already in place that has a centre for ME where we have the basic components and fundamental research taking place – a great model and base for the future. This could and should just be built on.
It would be foolish to ignore what has been established already in Norwich Research Park, with Quadram and UEA and university hospital and with a supporting
ME clinic - we have those components and internal support.
There will be no justification for not including them in any discussions.
Rather than making noise and wasting scarce funds on repeating what we already have, or reinventing what has already occurred, one could take the initiative and build on what we have.
Yet it would not surprise us that some will avoid recognising the potential that we have already in place – and will likely
just try to reinvent everything in a location of their choosing.
What ought to be stated at every meeting of any working group is that this matter is urgent and does not need endless meetings spanning years which ultimately lead to little real progress. We should not be pumping egos and allowing organisations to look important just to continue to exist.
Importantly though, there is no new funding for anything – which makes it incredible that nobody is seeing what has been set up in Norwich Research Park.
Despite this announcement from Mr Javid we feel that we need to keep on doing what we are doing to facilitate the research and fund it as much as we can, and make progress with developing the main centre for ME research in the UK – because we have a centre with all the components – and hopefully the clinical trial can make more aware of the possibilities.
The charity will continue to work with the researchers and hope to have news of new research being planned and initiated soon – on
top of the UK clinical trial RESTORE-ME that will be restarting soon.
Nothing will diminish the efforts of the charity and its supporters to continue to bring urgent attention to ME and facilitate rapid research according to its strategy of biomedical research amongst European and international collaboration.
We hope to hold a webinar once the RESTORE_ME trial has a restart date.
So whatever happens then we are still developing the centre and it will be researching for the next few years at least – with or without establishment support.
The recent press release from Quadram regarding investment from BBSRC  just underlines the importance and increased acceptance of the centre.