UK Parliamentary debate today - Thursday 24th January 2019

I think he was referring to the Applied Knowledge Test Content Guide in which 'chronic fatigue syndrome' is listed on p.30 under heading 'neurological problems', subheading 'specific conditions'.

https://www.rcgp.org.uk/training-exams/mrcgp-exams-overview/mrcgp-applied-knowledge-test-akt.aspx

 

I watched two things on Parliament TV this week: the ME debate, and a friend of mine who was giving evidence to one of the select committees. Whilst I am sure that the ME debate was another positive step towards achieving our objectives, I was also struck by the difference in the quality of the evidence being presented by expert witnesses to the select committee and that being presented by the MPs in the House of Commons. This is not a criticism of the MPs – with the exception of Brine, I thought they did an excellent job in the very limited time they were given. But they are not experts, and nor can they ever be expected to be.

Now that we appear to have convinced MPs of our arguments, I wonder if the the next step should be to push for an inquiry by the Health Committee. I know these are very, very hard to get – my proposal was rejected last year, and I know the Countess of Mar’s was before that. But now that we have so much Parliamentary support, I wonder if this should be the next step. If so, I think it would need to be a coordinated effort with all the charities and patient organisations working together with MPs and others.

Interestingly, Simon Wessely has said he thinks there should be an inquiry too:
https://twitter.com/user/status/1007501178727534592


My feeling is that it would need to be much wider that just PACE – including all the issues discussed in the debate, plus MUS, IAPT etc. I was also told by the chair of the HC and others in Parliament that the broader the remit, the greater the chance of getting it accepted.

I know that PACE has been raised in the Science and Technology committee inquiry into research integrity but I am doubtful that that will be able to probe deeply enough. (Does anyone know more about this, and whether there is any likelihood of expert witnesses being called to give evidence on PACE? I’m assuming that would have happened by now if it was going to.)

Mystic Trish!

There is some irony in the fact that we are told that the problem is the lack of high quality research proposals when low quality did not seem to be any barrier to funding PACE or any of the other BPS studies.

I agree that Governments should not usually interfere with the decision processes of independent bodies such as NICE and MRC. However, these organisations are accountable to the Government, as that is where they get their money from, and, when they are seen to have failed, I believe it is right and necessary for the Government to intervene. How else are they to be held to account?

In the case of ME, the argument that NICE and the MRC have failed people with ME would seem to be clear. It may be true (and I believe it is) that one of the problems is a lack of high-quality research proposals. But after 30 years, the questions must be asked: Why is that? And who and/or what is responsible for this catastrophic failure?

The point I made to my MP (about twenty years ago) is that the US didn’t put a man on the moon because of the sudden increase in high quality research proposals from the scientific community. It happened because there was a political will to do it, and funding was made available. The UK Government has ring-fenced huge sums for dementia and brain cancer research, and it has not provided a single valid reason why it should not do the same for ME. If money is set aside and not enough high quality research proposals are forthcoming, carry it over to the next year’s budget. I know there are arguments about this not being the best way to attract the best quality research but I am running out of time and I don’t see any better options on the table.

 

Further to my post above, I see that the Science and Tech committee inquiry into research integrity is now complete: https://www.parliament.uk/business/...ies/parliament-2017/research-integrity-17-19/

This is MP from the STC that Jonathan and David met:
https://twitter.com/user/status/1088808562938253312

 

I feel like I should be reading all that stuff and making notes. At the same time, I am certain that I do not want to.

We need a group of people working full time on this.... but the only institutions paying people to work full time on it are those looking to downplay the problems!

We had an opportunity to pitch ideas for the committee to look at but the deadline has now passed and I'm not aware of anyone submitting anything: https://www.parliament.uk/business/...ament-2017/my-science-inquiry-evidence-17-19/

 

Thanks for making that submission.

I suspect that we will face more prejudices & cultural problems in 'health' than in 'science'. I actually expect that an independent inquiry would have gone against us up until very recently, when maybe there has been a shift in consensus. I've always been a bit wary of any sort of independent inquiry that's a part of the UK state, partly out of fear that it could be used to cover-up problems. IMO we need to be pushing for as much openness as possible and the involvement of real outsiders (which might be hard to achieve given how well connected the PACE lot are).

 

Exactly RCT means two different things. In the case of PACE, it means randomised comparison trial.

 

This is not true. It is the in power of the government to set research priorities with ringfenced funding with the express goal of building research capacity. It happens in Australia (albeit not for ME), so why not the UK?

ME is exceptional in terms of lack of funding compared to societal disease burden and simply stating there is a lack of high quality applications is at best a tautology and at worst, a lie (systematic bias against funding ME research in review committees). The government needs to ask why there is a lack of high quality applications and tackle that directly.

 

Nice to see MERUK speaking out on funding. Since trying to collaborate with the MRC they seemed to go quiet on it.

 

I think that is a good point. House debates are for publicity.The real work of self-correcting democracy needs something more like a court of with experts giving testimony.

I forget the context of PACE being raise in Science and Technology. Walport (who I think is the government science quality tsar) had to answer a question but managed simply to read out some briefing he had without needing to know anything about PACE. About a year ago I suggested to various people (and probably on here) that if Walport could be called as expert to adjudicate on the probity and quality of PACE he would be forced to condemn it - puecrhaas mattes most to Walport is his intellectual self-respect. He could not be seen to be making a fool of himself. The only problem is that he might find it more convenient to side step in some way or other.

I agree that it would be worth exploring with sympathetic MPs some sort of enquiry but we may not be quite there yet. What worries me is that the worst conclusion that an enquiry may be able to come up with is that the UK psychiatry establishment is run by incompetent fools. The question then is what you do about that.

In other words proving bad faith or unethical practice for any of these questions is a pretty tough ask.

The reason why PACE got through is I suspect because MRC has to have a psychiatry, or mental health, section and that is going to have completely different standards from the rest because they have no idea of science. It also involved politicos at the top. The bar for getting funding purely on scientific merit for a project has always been very very high for MRC. I never ever got MRC funding and did not even try most of the time. So yes, maybe it is all about the politics being right beforehand. But shifting political viewpoints has never been an easy task. Maybe this weeks debate is some progress in that direction.

As I have said before, one answer, and probably the most important one, is that following research in the 1980s drawing a complete blank on muscle abnormalities, microbiology and immunology in ME nobody has had any sensible ideas about how on earth you find a lead to follow. Despite flurries of enthusiasm I think we are back to baseline on all of those - no leads. There may be some hints of blocks in metabolic pathways now but I find it hard to see what they would explain. It is just bloody difficult. Plans are afoot for new projects but they are still essentially fishing exercises.

 

I think this is simplistic. There will be constant pressure on government to ring fence funding for everything. What probably happens is that the science community flag up to government that they think funding a particular field would pay dividends because of new technology or ideas. The big push in molecular biology for cancer would be an example. New technology in neuroscience would be another. The government then claims the credit for ring fencing funding for that area.

The problem for ME is that nobody in the science community has been able to make the case for now being the right time to invest in ME research on the basis of likely pay off. Holgate persuaded MRC that it was at least trying some ring fencing and that was done in 2012. But the projects submitted were mediocre. There is another initiative now but no announcement for ring fencing. I don't know the inside politics but that may be sensible. An announcement for 'easy money' will attract vultures within hours if nobody has a hard proposal already prepared to fill the slot.

 

@Trish

#MEAction article here: https://www.meaction.net/2019/01/25/historic-parliamentary-debate-shaped-by-people-with-me/

 

We all need to be treated fairly as human beings but to develope worthwhile research proposals IMHO researchers need to distinguish subgroups.

Those of the 25% group who are bedbound suffering bone loss are suffering in a way which can be distinguished from the suffering of those with immune dysfunction and recurring virus whose illness is distinct from those with post viral illness without pronounced immune dysfunction whose syndrome is distinct from those with post physical brain trauma CFS and those with Gulf War Syndrome etc etc.

I think these conditions are probably all related in as much as they cause disabling lack of vitality and are not understood but that does not make them the same illness. Some types may be similar and part of a spectrum of the same kind of illness but some may not. Research needs a foundation of clinical diagnosis so that each subtype can be studied and characterised. By mixing them all together it becomes impossible to resolve any one type.

One problem with this is that as a political movement, division is weakness. This stems from our social instincts which can be seen exemplified in David Attenborough's observations of chimps in Dynasties. Identifying subgroups can attract interpretations based on tribal instincts but we have to be better than this. We have to accept subtypes in the ME community and still work together as a united lobby to make sure we all get research funding enough for all subtypes to be understood and treated effectively. An example is Klimas' work with GWS.

The need to characterise subtypes clinically has been obfuscated by the misuse of stereotypes in the media and by mercenary academics serving interests with financial priorities which obstruct scientific progress.

ME research needs to get down to brass tacks by identifying subtypes and not be pushed off course by pundits whose purpose is to entertain by controversy and vested interests whose only purpose is to push ME research off course because it suits them better financially in the short term if noone knows what is going on and we all get treated as if we are mentally ill.

 

Very important points, couldn't agree more!

 

Political will is everything, Robert - I agree, and I say again and again it is political will that is going to get research moving in the ME world.

 

Those exciting findings won't happen without research. Yossarian is stuck performing endless missions while Orr is planning his escape, but no one listens...

Yes there will be vultures, but they don't have to be the ones who are funded. It is not about easy money. But the goal is to build capacity, like the NIH funding specifically for research centres.

But there is one exciting physiological finding worth building upon and the results do not contradict the handful prior muscular studies conducted in the late 80s/early 90s (these studies simply used different methodology which was not appropriate to demonstrate the dysfunction in patients. Specifically repeated aerobic activity and hence earlier conclusions that there was no muscle damage or that exercise is save because strength was similar is inappropriate given more recent research on healthy people and the effect on VO2 vs DOMS or muscle strength).

A graded CPET is very unique as it provides external feedback to verify whether a persons effort perception is accurate or not and the short term reduction of the ventilation threshold has not been found in other groups except those who have done severe amounts of exercise (athletes who are severely fatigued after severe endurance training). Unlike the VO2peak, the ventilatory threshold is highly repeatable, since there is no effect due to motivation or due to differences in power ramping (see the "VO2 slow component" - or the inability of people to maintain constant power at their VO2Max). I truly believe there are lots of clues out there in exercise physiology research to drive old-fashioned hypothesis driven research in ME. I challenge anyone who is interested in understanding ME or CFS to dive into this research!

 

Besides the 1.5 minutes from BBC... is this story being censored? Has there been any serious coverage yet? The context is one of the biggest scandals in the history of medicine, yet there is near complete silence in reporting it.

This is very hard to reconcile with the fact that the SMC quickly jumps into action whenever something benefits the psychosocial narrative. Why is their PR strategy entirely one-sided for the benefit of the psychosocial researchers at the total exclusion of patients testifying to systemic harm and social injustice stemming from violation of basic human rights? The SMC is specifically supposed to be a neutral communications charity dedicated to the public welfare.

And as we know, the SMC boasts of basically benefiting from most of UK media outsourcing their science reporting to them, meaning they are singularly responsible for the media silence. I think we all know the answer to that and in hindsight it will look incredibly bad, but for now this is something worth highlighting, if only there were anyone interested in listening without losing interest once the SMC assures them it's all a misunderstanding and that we "have a history" of being unhinged militants, or whatever.

 

The fact that most GPs know next to nothing, and most of it misleading or flat out wrong, reveals that to be either a naked lie or such massive incompetence that a total clean-up of everyone involved would be necessary. The MRC also claims that it is a research priority yet have only allocated a few pennies per patient over the last several decades. Why are they allowed to bullshit like that?

This is also the response I get from health officials in Canada. It's always a priority despite absolutely nothing being done, no funding being allocated and absolutely no progress of any kind to report. The lies. THE LIES!

 

And yet millions of pounds were spent on the nth iteration of "is CBT/GET the right treatment for CFS (with the implication it also applies to ME but whatever we'll just get random people with fatigue)?" of the lowest possible quality tier. Small compared to disease burden but they did find millions in funding and low quality was not a problem, research quality doesn't get any lower than what the psychosocial crowd produces.

It would have been small and slow, but had the psychosocial money been spent on actual research, there would have been some progress. It isn't just that funding wasn't allocated, some of it was, but it was wasted on pseudoscience, which makes it so much worse. It's indefensible to say that the quality of proposals plays a factor here.

 

In my view The time to invest in research was years ago. We knew the severity years ago, Parliament was discussing it years ago and people have died tragically or lived wasted lives whilst we wait, it’s not a case of people still living but with an inconvenient ailment. There weren’t many leads but research generates leads, and relying on charities who in the 90s were only going to get donations from largely out of work sufferers could not work and didn’t. The decision not to invest in biomedical research I assume was also partly because Simon Wessely et al were saying they could get us better on the cheap and because people in positions of power were on his side.

When there was a sort of parliamentary investigation a decade or so back, the Gibson report, it concluded that the biomedical research side hadn’t been fairly funded and needed substantial investment, MRC ignored it. When MRC ring fence funds they often do so until the field is established, they refused to do that on ME despite all charities at the time arguing (quietly) that they should. That wasn’t fair. It wasn’t fair when the cmo report published quite seriously on ME that Colin Blakemore was allowed have a role to channel funds according to his own prejudices and panel members could exhibit bias so only behaviour research got funded .

That’s not to say it’s probably unlikely the field is enticing to researchers, why would you want to study CFS? that’s where offering money can help, either that or fund a massive narrative changing campaign across the medical profession, but that isn’t happening. Don’t just say to us well there’s not researchers,so just suck up the s*** situation. How about putting ME on their actionable to do list for a change. The minister offered nothing on research which I don’t see how they can be accepted or spun positively.

Whilst the MRC is supposed to be independent of government despite being given tax payers money to distribute, so less independent than a private business or charity, i think that it is Wrong to suggest they should never be ,”interfered”with. The word interfere which, many have used is a loaded term, I would prefer intervene, which is stepping in in exceptional circumstances where significant complaints have been raised and reasons for concern there. We don’t want the state to interfere with our lives, we do want them to intervene in lives or business if there’s a serious issue. The alternative to intervening seems to be to let the medical profession self correct but that strategy has already taken decades, some of us can’t afford more.

Regarding funding it looks like the things on the horizon for the MRC are KM mitochondria etc research funds and MEGA funding. For people like me slipping in a bit of money on acceptable to them projects whilst still not really trying to stimulate the field wouldn’t be enough and I also would like to see acknowledgement of failure to address the issues in ME. I don’t want any significant disabling illness languishing without progress, especially one serious enough to lay waste, and the MRC IMO shoukd have it as part of their job to ensure that doesn’t happen. Rather than tell us about the stigma and research disinterest which we already know or blame a few harassers I’m only interested in what they will do about it. It has to be recognised the harm to the community by the BPS narrative the medical establishment all lapped up and there has to be meaningful, time framed attempt to get us some forms of treatment on the table.