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UK Parliamentary debate today - Thursday 24th January 2019
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Tom Kindlon
Senior Member (Voting Rights)
Is this the Leeds unit, does anyone know?
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Tom Kindlon
Senior Member (Voting Rights)
JemPD
Senior Member (Voting Rights)
Been following this as much as i can, not too good atm.
I thought the MPs did very well considering & i'd like to thank them & everyone involved in preparing them & contacting them etc. Well done everyone.
One thing that struck me in the few mins i was able to watch, is that there was a lot of calling for more services/funding.
Great but it's not actually 'more', it's different and more.
One MP was lamenting the fact that they had closed the specialist unit in the north east & asking for it to be reopened. Well honestly i wish they'd close my local service, at least then i wouldnt have to live in continuous fear that my new gp will put me in a position of having to either go there & be harmed (or at the very least have to go through the ordeal of resisting their well meaning gaslighting), OR refusing to go & being seen as someone who doesn't want to get better - with all that involves (threat to benefits etc)
So the very last thing we need is more 'specialist services' of the like we have now, for pitys sake one of the service leads was just replaced by a psych with specialism in eating disorders!
I appreciate that was rather deep & complex for this debate but something to make clear for next time perhaps?
I thought the MPs did very well considering & i'd like to thank them & everyone involved in preparing them & contacting them etc. Well done everyone.
One thing that struck me in the few mins i was able to watch, is that there was a lot of calling for more services/funding.
Great but it's not actually 'more', it's different and more.
One MP was lamenting the fact that they had closed the specialist unit in the north east & asking for it to be reopened. Well honestly i wish they'd close my local service, at least then i wouldnt have to live in continuous fear that my new gp will put me in a position of having to either go there & be harmed (or at the very least have to go through the ordeal of resisting their well meaning gaslighting), OR refusing to go & being seen as someone who doesn't want to get better - with all that involves (threat to benefits etc)
So the very last thing we need is more 'specialist services' of the like we have now, for pitys sake one of the service leads was just replaced by a psych with specialism in eating disorders!
I appreciate that was rather deep & complex for this debate but something to make clear for next time perhaps?
Barry
Senior Member (Voting Rights)
Is this it ...
https://www.meaction.net/2018/10/12...ses-report-on-national-survey-of-me-patients/
A statement such as that is very ambiguous in isolation of course, as many non-ME but sedentary people (me for instance) might state the same; my symptoms would not persist though. Presumably if the survey is dug into it will clarify better, and hopefully Carol Monaghan did this.
This is the latest comment from Darren Jones MP - see below (who's my MP and who I and a couple of others have been liaising with to explore how he can help). My question is - do we have any breakdown of recent biomedical research funding applications to MRC/NIHR that have been turned down (@Jonathan Edwards - or anyone else). If we have a breakdown I'll pass this on to Darren. We are consistently being told that the MRC are open to funding applications that meet their standards and they have a priority notice on ME research - so I think it would be good to get some sort of enquiry into why it is easier for funding requests for research of a psychosocial nature to meet those standards and also whether certain institutions are being favoured in research funding applications. I'm thinking that this is possibly something that the Science and Technology Committee could explore (or a group of interested MPs generally). I've seen a breakdown of refused funding appliations from 1996-2012 but wonder if there is anything more recent floating around.
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IMO the responsibility for the lack of scientific research into ME lies squarely on the shoulders of the MRC. It has failed to ensure robust scientific and clinical research into ME. It cannot claim to be a mere passive recipient of funding applications and blame the lack of research on lack of good applications when it funded the PACE trial which tested a pseudoscientific hypothesis. If there is a lack of good applications, the MRC should take steps to remedy this, not fund bad applications instead.
It was warned by many patients that funding the PACE trial would prove to be a waste of money. Failures by NICE, MRC, the GMC and other medical institutions could have been avoided by listening to patients, making a case for the democratisation of medical governance.
A good starting point for research right now would be to make some good out of a bad decision by asking why, in the PACE trial, were the results so bad. Why did the step test after graded exercise therapy show less improvement in ME patients than a similar study in patients with heart failure? This observation should have been a big wake-up call that there is a major physical impairment in ME patients that needs investigating.
It was warned by many patients that funding the PACE trial would prove to be a waste of money. Failures by NICE, MRC, the GMC and other medical institutions could have been avoided by listening to patients, making a case for the democratisation of medical governance.
A good starting point for research right now would be to make some good out of a bad decision by asking why, in the PACE trial, were the results so bad. Why did the step test after graded exercise therapy show less improvement in ME patients than a similar study in patients with heart failure? This observation should have been a big wake-up call that there is a major physical impairment in ME patients that needs investigating.
Sly Saint
Senior Member (Voting Rights)
some info here
https://www.s4me.info/threads/funding-on-me-cfs-research-in-the-uk.2533/
https://www.s4me.info/threads/mrc-i...c-encephalomyelitis-aug-2017.1194/#post-20179
https://www.s4me.info/threads/watt-from-mrc-defends-pace-in-letter-to-times.5491/page-6#post-99524
eta: see also
http://www.meresearch.org.uk/information/publications/mrc-case-to-answer/
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Thank you @Sly Saint. I've seen the list of MRC/NIHR funded applications - I'm just wondering if there is a list anywhere of funding applications that were refused? It would be good to compare the list of funded applications to refused applications. Do you think that the MRC/DOH would have to supply details of refused applications under FOI - I'm thinking probably not.
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Jonathan Edwards
Senior Member (Voting Rights)
I completely agree that funding has been dismal but I think there is a danger in chasing unicorns here.
I strongly suspect that almost no applications have gone in to MRC since the ring fenced biomedical funding of 2012. I would probably have heard of them. I am not aware of any application to MRC that I think should have been funded and was not. The only thing I can think of is Julia Newton's work that WAS funded. I am not sure that any psychological stuff has been funded by MRC since then - although I may well be wrong. Peter White may have continued to get funding.
The answer to why it was easier for psychosocial funding requests to get funded is simply that the experts thought they were better value. They were wrong but if you have experts you have to listen to them. Why were these experts in charge, or why were they wrong? - because in the long run even scientists can be pretty dumb much of the time. And the system is full of empire-builders. As my old boss said 'the system stinks'. We all know that.
It is a bit like asking why Mr Trump is president. That seems to be the way democracy works. To get him unpresidented requires careful attention to evidence. I think we would do much better getting MPs up to speed on the precise arguments about evidence rather than crying over spilt milk in the past.
If a committee set about trying to prove that MRC funding was biased it would never ever get anywhere because it is not something you can prove. The MRC can for ever say that at the time that was the opinion of the experts. What a committee could do is enquire into why trials like PACE that could never produce a useful result were funded. It sounds as if focus on PACE alone would be too narrow. It would be reasonable to widen that to all these studies of therapist-delivered treatments and to bring in NIHR, which is probably much more to blame than MRC. But then you are opening a Pandora's Box about incompetence in liaison psychiatry as a whole. That should probably be done but it is not a simple thing to undertake. It is not going to catch on until we get past the idea that 'CBT is good for some people but maybe not for everyone with ME so you need to ask first'.
The frustrating thing about meeting these MPs is that you get six minutes to discuss a topic that would take two days to get them up to speed on. Carol Monaghan seems to know how to play the system but following through may require MPs having a deeper understanding. Continued pressure on research funding is important but raking over meaningless lists of failed projects I think wastes time.
Thank you @Jonathan Edwards, that's really useful. The Science and Technology committee are currently doing an inquiry into 'Balance and effectiveness of research and innovation spending' though it seems to have only 2 sittings and I'm not sure that it will be of any relevance. I agree it's very hard to get much time in front of an MP. David Tuller is meeting again with Darren Jones' assistant this week. We'll try to keep bringing Darren Jones up to speed as he seems keen to do more.
What I don't understand because I'm new to all this is: have the research projects that have been funded by me research uk and iime, first not tried to get funding from MRC/NIHR? And been refused ?
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rvallee
Senior Member (Voting Rights)
I would like to know more about this. I've waited a bit to see if new details would emerge. Is this confirmed to be real? Certainly doesn't seem surprising, it's not even that many considering the timeline involved.
rvallee
Senior Member (Voting Rights)
Those numbers are also in line with a recent Australian survey. This is good independent replication. The data may not be precise but they are correct. This is something that needs to be highlighted more: the exact same issues are raised independently with similar numbers. There are many discussions happening independently of one another when it is in fact one large issue.
Some countries borrowed from one another. In some cases the same people advised different governments. Others did their own implementation. EVERYWHERE the outcome is the same: massive and total failure. This is important. The debate over one country's failure should not be raised without this larger context that there is multiple independent confirmation of the same problems.
JemPD
Senior Member (Voting Rights)
I would agree that this is a priority, there are LOTs of people (just generally) that don't understand the subjective vs objective in non blinded trials, and no doubt many of our sympathetic MPs are included in that. And unless they thoroughly grasp that it will be difficult to counter much of the 'scientific' whitewash.
And if any of you succinct scientific people feel like it.... while we're at it, i'd love to have access to a concise summary of the reason you cant have subjective endpoints in unblinded trials.... I mean i know it's the case & I understand that they are not reliable, but 'knowing & understanding' in my own head, & being able to explain it succinctly & convincingly to someone else, especially one who thinks 'well the opinion of a patient in whether they feel any better or not should be the highest form of evidence, as that's what really matters'.
I'd love something a few sentences long that i could literally learn by rote & quote to people instead of my dithering, rambling useless attempts!
Jonathan Edwards
Senior Member (Voting Rights)
The answer is pretty simple. The problem is role playing. The bias comes from the patient knowing what 'they are supposed to say' and playing the role of the grateful patient.
Think yourself as the patient in the study - 'oh, maybe I had better say I am a bit better ... Susie is so kind and helpful....she deserves to get a good result from her trial'. Listen to Graham's excellent videos. It is so easy to look at things just a bit differently when you know what you are 'supposed to think'.
Knowing what you are 'supposed to say' means knowing whether you are on the treatment that is supposed to be best or the rubbish ordinary treatment (or no treatment) - i.e. it means the study is unblinded.
If the endpoint is objective - i.e. you cannot bend it one way or another - blinding is not needed, obviously. So if the end point is a blood test, no problem. If the end point is you can read the bottom line of the eye chart, no problem (if you can read it right you must be able to read it).
It is true of all science, not just trials. I remember learning the lesson in a physics class aged 12 or so. We were measuring the length of spring when we put weights on. I found that my results did not quite fit a straight line, so I just helped them along a bit to fit exactly on the line. My wise teacher said that we have to learn in science that results are not always what 'they are supposed to be' and that real results never quite fall on the line.
It is true that subjective endpoints for things like pain and fatigue are the most important, but if you cannot blind the trial you just cannot use them on their own. But that does NOT mean you have to use something else instead. We do not do that for rheumatoid arthritis. What we do is respect the subjective score, but we require that to be backed up as well by some objective sign that confirms that the subjective score is likely to be a true reflection of what you want to change. You still just have one measure of outcome, but it is a belt and braces measure.
So for ME it could be at least a 20% improvement in how easy you find it to go upstairs plus an actometer reading showing a 20% reduction in the time it takes you to go upstairs to confirm the subjective report reflects reality.
JemPD
Senior Member (Voting Rights)
thanks @Jonathan Edwards. Unfortunately everyone i have spoken to to try to explain this says that "well i wouldnt say what i was supposed to say, i would say how it really is". They don't seem to understand that their perception of 'how it really is' can be unconsciously influenced by how they are told it's supposed to be.
People seem to have a remarkable resistance to accepting that they are in any way susceptible to suggestion.
I will try to focus on the not subjective on it's own part next time i try it, perhaps that will help.
thanks for taking the time Jonathan
People seem to have a remarkable resistance to accepting that they are in any way susceptible to suggestion.
I will try to focus on the not subjective on it's own part next time i try it, perhaps that will help.
thanks for taking the time Jonathan
Dolphin
Senior Member (Voting Rights)
A problem is that the largest or second largest ME patient organisation, Action for ME, wrote a letter in support of the PACE Trial grant application and also were on an ongoing committee associated with the trial.
Esther12
Senior Member (Voting Rights)
If the MRC wants to attract more high quality researchers it would be helpful if we could move on from the reputation ME/CFS still has as an antagonistic quack-fest, and that would require them to acknowledge and apologise for their past mistakes. So long as they try to ignore the problems with their funding and oversight of the PACE trial there are going to be problems.