Does the new ME/CFS research of BPS proponents affect anything much now?

This post has been copied and following posts moved from this thread:
Possibility of ME or PVFS after COVID-19, Long Covid

I agree with Andy that this is bonkers, irrespective of who is involved in what.

Crawley's research does not actually do that much harm, I suspect. It is a symptom of a way of approaching ME/CFS, not a cause. If she left the field overnight the remaining clinicians would carry on as before. The research itself actually goes nowhere. Nobody outside the circle of followers takes any notice of it at all. I certainly don't and would not have done if still practicing. The clinical practice is bad because a field of medicine where nobody knows what to do gets populated by people who have no idea what they are doing.

On the other hand Decode ME will give us a powerful piece of information about the genetic component of ME, whatever the result. It cannot fail to give a hugely useful piece of information - the sort of piece that people like myself have leveraged to build a viable disease model. If specific genes come up they will point clearly to specific mechanisms. if they do not that equally points away from mechanisms, which is in many ways more powerful.

The MRC asked me to advise on what was worth funding, together with two US researchers. Of the suggestions on offer the GWAS seemed clearly the one thing worth doing. And it has been funded.

In science you have to forget the political infighting around you and get on with what is worth doing. Most of the money goes to garbage, with results churned out on what might as well be toilet paper. Forget it. It falls under the same heading as merchandising T-shirts sold by sportswear companies. It has no long term impact. Finding a gene does.

 

"Crawley's research does not actually do that much harm, I suspect." I disagree there.

"If she left the field overnight the remaining clinicians would carry on as before." - Maybe if she left in a way that let her act as if she was moving on to better things, but if she stopped getting funding as part of a recognition that ME/CFS patients deserved better than researchers like her, that would be important. More than just her research, her funding helps her maintain her position, and can be viewed as a continued sign that she is the sort of researcher ME/CFS patients deserve. I think that is important, particularly in the UK where she is entangled with various parts of the Establishment and where she has important and influential colleagues who continue to promote her spin, but seemingly internationally to, eg her role in the Lightning Process trial in Norway where she was promoted partly on the basis of the amount of funding she receives.

DecodeME looks worth doing, but it might not make much of a difference to patients, particularly not anytime soon.

 

Not necessarily. You don't expect intellectual consistency, do you? It might be pragmatic to distinguish between Covid and Me

I think we also have to consider the spurious legitimacy that this body of "research", approved and funded by official bodies, may give her in any cases in which she is called as an expert witness. All that is shrouded in secrecy.

 

The fact that none of the people who have been hailed as experts on "CFS" have been referred as such in the context of Long Covid shows that they are not actually considered experts by anyone, they are merely convenient tools to perpetuate a failed ideology. Hell even they pretend to be mostly ignorant when it comes to specifics. I recall a tweet by Gerada where she was feigning ignorance about ME, saying something like she "thinks" it's diagnosed after 6 months. She has presented herself as an expert on the topic for decades, to a point but nonetheless having featured in medical education on the matter is supposed to mean something.

Their opinion gets asked, as we see with Wessely, but in interviews quoting him they never refer to his work with ME or to him as an expert on the topic or how it applies to LC, even he doesn't dare pretend he is an expert in a field in which he has been a recognized expert and awarded for it, knighted for it, celebrated for it. This whole thing is for show, people pretend but they know it's crap, they just like what it says, mostly out of tradition.

There are millions of ways to fail, only a handful, at best, to succeed. The day there is a breakthrough all of this BPS-ME crap will be dropped as if it never existed, mocked as harshly as we are currently mocked. Meanwhile the charlatans will continue to BS but they are not considered experts after decades of wasteful nonsense on ME, it's very doubtful they would ever be considered that with Long Covid, things will move much too fast to do the usual strategy of building up quantity-with-no-quality over years and point at it as the only thing around.

 

But that is my point. Crawley is funded because she produces what people want to hear. She is a symptom of a general malaise.

And I don't think her research has actually affected anything. The LP study is recognised to be the rubbish it is. Her attempts at epidemiology and biology are underwhelming. The other trials don't really provide evidence for anything.

Sure it is a pity that money is going to poor research, but that is a different issue. Sure, the Bristol clinical practice may encourage others to do likewise, but the research I don't see as having impact.

 

I agree with the above but unfortunately people also use her work to prove that what they want to believe is scientifically proven. It is a vicious circle.

It may be that in some quarters things are changing but out in the wild - schools, GP surgeries & social services - she gives them all that is needed to make life as difficult as possible.

 

Largely because of Cochrane, NICE and other aggregators failing to do their job, adding the NHS and other medical authorities who just do their own secret evidence and procedures but that evidence is locked up tight away from peering eyes. I've rarely seen any of the papers produced by these people being cited other than by their like-minded peers, it's always systematic reviews cherry-picking a few papers.

Even PACE doesn't really have much influence by itself anymore, frankly the only bits of evidence I ever see linked to are the Cochrane review and places like Mayo or UpToDate, which depend largely on Cochrane and mostly point to there being a general support for their model but specific papers have little to no impact. It's a game of pick-and-choose-your-cherries, nobody really seems convinced by any of it, are simply satisfied that the traditional conclusions are upheld.

I assume they keep producing in large part to influence NICE and Cochrane, then will move on strictly to FND and/or MUS if it fails. Without those the whole thing unravels quickly, perhaps relegated to whatever the hell is happening in Norway about functional this and Fink that. If Cochrane actually manages to do the right thing, it's largely game over, at best on borrowed time. No amount of garbage quality papers will change that. Probably the NHS will continue it for a while, largely in secret, but there's probably already a critical mass of Long Covid physicians who will have personal motivations to not be affected by it.

 

Does a poor research culture produce researchers like Crawley or do researchers like Crawley produce a poor research culture? Seems we've got a self-perpetuating cycle.

I think that you're too optimistic here. People may not be willing to try to defend work like SMILE to you, but what bodies have recognised SMILE for the rubbish it is? Who is the most powerful individual who has been willing to speak out on this? SMILE seems to have generated further funding for more LP research from Crawley and a likely new trial in Norway. [edit: though I wonder if the problems with Wyller's CBT/Music trial could cause some second thoughts with that?] And it was not even well disguised rubbish. It seems more harmful stuff is due.

I think that her research is important but I expect that even more worrying for patients is the role she can play behind the scenes and as a symbol of how one should behave to attract funding as a CFS researcher.

 

I think in the case of paediatrics it is much worse than that @rvallee.

Schools and children services won't be reading up on Cochrane. No they'll be talking to the likes of Crawley and her sidekick Phil Hammond.

Child services won't bother or see the need to defend their judgements to anyone. Crawley is the expert, they've covered themselves professional by seeking expert advice and that's that.

The parents don't like it - well, they're probably part of the problem. The powers that be will certain try to paint them as such.

 

This

 

It has started happening in Sweden too I've only seen it mentioned a couple of times in the long covid Facebook groups so far, but apparently the social services sometimes get involved when children become "longhaulers". The parents are blamed and judged etc, in the same way that some parents of children with ME are

Edited to clarify (this post was moved by a moderator, it was originally in a covid related thread) : This is not a new problem for parents of children with ME in Sweden. What I was referring to as new was that is now happening to parents of children with long covid too.

 

In this particular case, knowing EC well, I can be pretty sure it is the former. She is a follower, not an innovator.

I do appreciate the current impact of the received wisdom and that Crawley is feeding in to the narrative.

On the other hand it may be in the long run that all the publicity that Crawley has attracted and the writing of such poor papers exposes the nonsense in a way that otherwise would have gone under everyone's radar. I very much doubt LP will be recommended by NICE, despite some cheerleading for that from southern England medical schools.

 

see
Developing the Paediatric Researchers of the future - Bristol, course organisers- Esther Crawley, Robin Marlow
https://www.s4me.info/threads/devel...organisers-esther-crawley-robin-marlow.16091/

then there is also Jo Daniels and Maria Loades following in her footsteps..

 

I suspect the BPS research is fairly harmful because it influences how society reacts to ME/CFS.

If enough people don't believe that an illness is serious then this creates a situation where it's very difficult to make progress and avoid bad outcomes.

The BPS message is that it's serious but you can also recover by not paying attention to your symptoms and doing some exercise which makes a mockery of claims of serious illness. In effect BPS views have trivialized this illness and positioned it as something that is not truly a medical problem. A lack of research and funding would be the expected outcome which is what we're seeing.

But I can see that it's hard to separate cause and effect here. In some way the BPS research is also done to satify the demand by the community for evidence that CFS is psychosocial problem. If BPS people had a moral compass and a spine, they would refuse to play the role they're playing in this.

 

You have to remember that NIHR was invented in order to bypass ethical and quality concerns in the first place. We had the MRC but it seemed a bit picky for some with political agendas so NIHR was set up to allow people to prove what was convenient to prove. NIHR is not going to change its spots. What might happen is that a new political wave decides that looking after the chronically sick is a waste of public money and that psychological therapies can be dispensed with. General Practice may also collapse, in which case the advantage of palming people off by referral to therapists is less attractive.

 

I think NICE in the past has specified that pharmacological interventions are not recommended so there seems to be a precedent. It would certainly make sense to apply the same principle to therapist-delivered treatments.

 

I think eventually this will happen. Projects like DecodeME, even if they don't provide the clues we need to come up with effective treatments immediately, will pave the path for this lady and her ilk to be hoist by their own petard.

 

I think when you go down the path of specifying exclusions then there's a risk of creating more loopholes.

There a fundamental problem in the system whereby practitioners can claim they must follow guidelines & NICE can claim the practitioner should use their own judgement. When the patient gets hurt then everyone points at everyone and no one takes responsibility.

On the flip side, I have had a very helpful medication stopped because NICE don't approve it for ME patients - even though that's not why it was prescribed in the first place. Despite a warning on my notes that suddenly stopping this treatment could prove dangerous, that's exactly what they did. Again, potential harm to the patient & nobody takes responsibility.

There is a missing feedback loop between patients and the people who make the decisions. If a doctor doesn't listen then patients should have other simple and straightforward means of recording that a treatment is causing an issue. The buck should have an obvious and accessible place to stop.