UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

Tweet from Javid.

"I met with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) experts alongside @LucyChappell2 to discuss what needs to be done to better understand the condition. Those affected have been neglected for too long. I am committed to more research & a cross-govt plan."

 

ME Association twitter this morning (10/6/2022)
https://twitter.com/user/status/1535183083284086786



https://twitter.com/user/status/1535183175135141888



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It would be helpful to know who the experts/researchers and others at this meeting were.

Lucy Chappell was at the meeting as the (since 2021) Chief Scientific Advisor (CSA) and National Institute for Health Research (NIHR) lead for the Department of Health and Social Care (DHSC).

 

We definitely need a change of research funding priorities at the NIHR, which has been a major conduit for funding psychosocial 'CFS' and 'Fatigue-lets-call-it-CFS' research (causing ongoing harm to us) and to my knowledge still is funding that waste of space research.

Has there been any sign of a change at the NIHR under Lucy Chappell? Will there be now that Sajid Javid is on the case ?

 

What I really mean in my post above (#189) is will the NIHR now Stop it's funding of psychosocial research that purports to be about ME, or about 'CFS', or fatigue/chronic fatigue but applied to 'CFS'. That research is not just a waste of space - it is actively harmful to us and has helped create a new generation of psychosocial 'CFS' researchers.

 

I think it would be hard for us to be able to answer those questions without some specific public announcement that would tell us one way or the other. My guess would be that this initiative from Javid might be the only way to bring about the change but it would require quite a system wide change in how the psychosocial 'idea' is actually implemented in research.

 

This question of 'who at the NIHR in the past' has been allowing so many of these BPS projects funding is something I'm really interested in. I don't know where the power structures lie e.g. whether it is delegated in various ways down to different people or sections or is part of a strategy at the top. Because then I might have some sense about who I'm comparing with who, and what would look like a 'sign of change for the better' etc.

 

Here's the horrible bit about ME and how it has been 'played': exertion makes it worse, ergo others being inconsiderate and lack of adjustments means that people can't survive or keep themselves within their baseline to keep their health from getting worse (and the little bit of energy being hogged by something and basically being in PEM until the next time that happens).

So these ambiguous terms - particularly in the way the individuals who claim them to be their area use them - such as psychosocial, support, the trend towards using the coverall of 'mental health' to include where people are just being unkind to someone - are very problematic. Lots of OH basic practical things get lumped under 'help them help themselves' support that lumps under mental health.

I think that clarity of terms is needed as a special condition for ME. SO that exertion e.g. increasing heart rate and causing PEM meaning that adjustments to reduce exertion are needed is not twisted into 'training that tells people to do what they already know but the world makes impossible and they just don't tackle as part of their course' (the best the NHS seems to currently intend to do). We currently have the equivalent of if someone in a wheelchair needed ramps in an area (e.g. workplace or facility they need to access) instead of these getting sent to a clinic where a non-wheelchair user patronises them on how their condition means they should only go places where there are ramps. The issue isn't research into whether someone needs ramps, or the impact of not having them, it is were it comes from ideologies that twist methodology or what they read into results into models suggesting its down to the disabled person's gift to sort it themselves.

I don't know what we want to term that but we do need to clarify and have programmes of research covering certain key aspects that have very well-specified terminology that can't incorporate or be twisted into covering these angles. If we are goign to change the attitude and approach that has become default and is problematic.

Currently I think we absolutely need most of the funding to go towards biomedical - but at some point that dilemma will lurk and it's worth defining for when the question crops up?

 

Yup. Can't change away from disaster without doing a proper audit on it. If no one is willing to criticize that 1) there was massive systemic failure that 2) lead to disastrous outcomes and 3) there are people and organizations directly responsible for this who need to be held accountable, nothing will change.

There never was any possibility of a future that acknowledged the harm of smoking that had the tobacco companies at the table, setting or even influencing the agenda. They were there to shut up and pay up. The only rational scenarios had them bear the full blame for what happened and this is the same thing.

And since people will say that it's too antagonistic: the last 30 years were extremely antagonistic against us. The antagonism is the current default, and there is no pushing back against bullies without making them furious about it. We are currently in a state of overt bullying, to move away from it will require to be direct and firm, or it will just keep failing behind the scenes.

 

Indeed. The NIHR funding decision making process does seem to be shrouded in obscurity and unaccountability. And NIHR seem to be a Byzantine organisation.

 

There is some recognition within the NHS and NIHR that it needs to change - a 2017 document pdf = 12 Actions to Support and Apply Research in the NHS from which:

"Engaging with patients and charities, we will articulate more clearly what are the NHS’s national and local research priorities. There is a clear mutual benefit. The NHS wants answers to the most important researchable questions, both operational as well as strategic. The research community wants its findings to be as useful as possible to NHS clinicians, managers, and patients, thus boosting the likelihood of widespread adoption. Wherever possible, policy and practice should be informed by the timely production of sound and actionable evidence."

The head of the NIHR is the Chief Scientific Adviser (CSA) at the the Department of Health and Social Care - Prof Lucy Chappell (as mentioned multiply above in this thread) was a new appointment in 2021, Professor Lucy Chappell appointed as Chief Scientific Adviser replacing Prof Sue Hill, who had been in post since 2002 ! so Chappell has the potential to be a "new broom". The NHS page on the CSA still gives Hill as post holder: Chief Scientific Officer (CSO)

I doubt there is much value now in doing a postmortem on past NIHR funding decisions, the time for asking those questions is probably now past for any useful purpose, unless of course the NIHR is seen to be 'flogging the CBT/GET dead horse' with further large funding allocations in which case the history will be relevant and need to be challenged. For now positive engagement via Javid's involvement is probably the best strategy and though it may stick in the throat - forgiving past sins being the way forward.

When I was going through the NIHR docs for the figures in this thread: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747 I came across an NIHR page that irritatingly I didn't bookmark and now can not find - it included a list of 'grant advisors' most of whom were NIHR insiders, one name that stood out was Trudie Chalder - a subsequent page recorded Chalder as having left that role (IIRC) in 2019. One can see how there may have been a lot of 'divvying up' of grant allocations via the various specialisms represented by the advisors - so everybody got a bit of the cake, with quality of research not necessarily the main driver. But with a new regime in play I don't see any value in digging into that.

Edit to add: NIHR Open Research - Advisory Board Members

 

Wonder if you are able to enlarge on this. Who attended and the form and general purpose of the meeting. Was it seen to be the first of many primarily to obtain funding?

 

Good to hear. The PSP priorities are a very good hammer to use here whenever some BPS gets talked about: literally not even on the list of priorities, so move on or get out. There are so many angles and arguments that can be made, always steering things in the familiar direction of systemic failure. Especially so much fake sincerity, "we just mean to help".

F that. Not. On. The List. Not even a priority. Hammer smash!

 

You made my day

Its great that you were there Adrian, its a relief to know someone i really trust was involved & am encouraged by your assessment of things particularly of the change in tone.

As you say it doesnt mean anything will come of it, but its at least a step in right direction. Lets hope Javid can stay in post long enough to get some momentum going & make a difference in practice, rather than in initial discussion.

 

Is it NIHR projects where the primary outcomes were getting switched after recruitment, sometimes seemingly happening rather a lot?

I do not understand how a project can be allocated funding on one basis and then significant changes can be made to the extent some of these changes represented afterwards - given you might 'tick all the boxes for funding' in the first proposal then change it to something pretty different afterwards (and that is aside from ethical issues for those already recruited). But I haven't been keeping up with which funders these projects are under that this happens etc

 

The post PACE NIHR funded ME/CFS studies are listed in this thread: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747 I don't know if any have been subject to outcome switching. PACE of course was notable for OS, PACE was part funded by NIHR, MRC and the Dept of Work and Pensions.

 

Crawley (post PACE) has received the largest total amount of NIHR ME/CFS funding (£2,832,750.28), however SMILE itself wasn't supported with NIHR funds.