United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

[JemPD]

I'm finding your posts on this thread encouraging @Jonathan Edwards
I also wonder..

I think people are unaware of just how good a research project has to be to warrant MRC funding.

Like PACE?

Or was that of a high enough standard in the protocol? before they dropped the objective outcome measures & lowered the thresholds?

I am not sure scientists are listening carefully enough to the patients to read the symptoms right.

I feel personally certain that this is part of the problem. I cant tell you how frustrating i find it that even sympathetic doctors generally don't really listen closely enough to hear whats actually being said rather than what they think/expect is being said. It's like they have a certain number of pigeon holes to put patient's accounts of their symptoms into & so they put the patient account into the pigeon hole that most closely fits what they're familiar with hearing. But ISTM that ME needs a completely new pigeon hole.
Even with things like the vocabulary used to describe PEM, or to describe the cognitive issues, they'll write things like 'poor concentration', but to me it's not "poor concentration"... poor concentration is where you cant keep your mind on what you're doing, like when you're stressed & easily distracted & you read a page of a book & you know you've read every word but you've no idea what it said, & have to read it again. Whereas what i experience during bad PEM is that when i look at a paragraph of text it's like looking at a foreign language - where i recognise/understand a couple of words but the rest is opaque.
And the problems with decision making - they think I'm saying i cant make my mind up - like being depressed or a ditherer - they simply aren't able to hear that what i experience is a total drop out in the understanding of how a decision is made, I don't understand how i would compare a cup of coffee to a glass of water. It's like developing a severe learning disability overnight.
I know thats a bit of a tangent to the thread but symptoms being assumed to be one thing while they are actually something quite different is something that's driven me mad since i became ill.

It should not be necessary to deliberately induce PEM. You just have a bank of patient volunteers who can ring the lab when they have PEM and a dedicated and thorough doctoral student who can come in at weekends to do the measurements.

Indeed. And it wouldnt necesssarily have to be from one area. If it were necessary I wouldn't be at all surprised if you could recruit a person from several different areas of the country who was qualified to take blood (nurse etc), who would volunteer to go out & take blood from participants in their local area prompted by a phone call letting them know the participant was in PEM, & then post off the sample. I'm pretty sure lots of friends/family of the severely affected are so desperate to find answers they'd be more than willing to pop out on a sat afternoon/evening to somewhere close to them to draw a quick sample. They'd maybe need travel expenses but...
Just a thought.

 

[Jonathan Edwards]

Like PACE?

Or was that of a high enough standard in the protocol? before they dropped the objective outcome measures & lowered the thresholds?

This is a good point but what I think it demonstrates is that standards of peer review in psychiatry are way out of line with those in other branches of medicine.

It also appears to show that the MRC is not immune to political interference. An MRC representative during the preliminary discussions before PACE said it fitted well into 'the strategy'. What strategy? The strategy of interest to others was getting people off benefits. The MRC had previously got involved in work related issues like chronic back pain. Projects with that flavour seemed to have different bars to jump over.

 

[Jonathan Edwards]

Biomedical applications in respect of CFS/ME known to have been rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London.

Sorry, but this happens in all areas of research. The Dundee group have been working on ME for twenty five years and produced some intriguing findings on vasoactive responses but they seem to have moved on to other things recently. If there was a robust finding somebody ought to have found a way to document it by now.

As indicated in my last post, I agree that thresholds for funding can be skewed at MRC but I am not sure that has anything special to do with ME.

 

[Jonathan Edwards]

To my, perhaps wonky, logical thinking, while this is welcome news, if they won't fund systematic work what is the point?

My point was that they fund stuff once researchers have demonstrated that they have a clear idea what they are trying to achieve and show that they have a track record for good quality control and perseverance. The strategies set out by LSHTM and MEGA look competitive. Up until now use of the resource base has not looked optimal. I think that may now shake down properly.

 

[Jonathan Edwards]

I want millions for research as much as anyone but getting people's hopes up by throwing out words like dementia and platform, is wild speculation.

It reminds me of corporate statements where buzzwords are thrown around that dont actually mean anything, but sound impressive to those who don't know any better.

I agree that the blurb put out looks like just that - blurb. Platform is a silly word. My reasons for being optimistic come from other quarters.

 

[adambeyoncelowe]

I don't think this is realistic Adam. What 'proper treatments' did they get? I don't know of any positive trials. I don't know about scans but the biopsies fizzled out because nobody could reproduce the findings. I am afraid I think it was all over-enthusiasm. We are now in a situation where genuine science is being applied. Most of the findings are negative, but at least the quality control is there.

Perhaps I should have said 'better treatment'. But patients today get only the most basic of blood tests. There are no MRIs to rule out MS, CSF leaks, or other brain problems. There are suggested tests in the ICC Primer, for instance, but to ask for any of those would be met with scepticism. Sure, muscle biopsies haven't been reliably followed up on/confirmed, but it's almost like there's no curiosity at all right now. Doctors don't want to investigate. The NICE status quo actively discourages further investigations.

And because of PACE, many patients struggle to even get symptomatic relief (which is what I understand some of our older friends in the community received previously). It's CBT, GET, sleep hygiene and antidepressants or nothing. Yet in America, clinicians are willing to experiment: https://batemanhornecenter.org/consensus-driven-cfs-clinician-coalition-takes-shape.

It's hard for me to be certain, obviously, as I was only born in 1985, but the stories I hear from people like Nasim Jafry and a few of the more vocal activists (not a reliable sample, I know), was that things were taken more seriously and that they were at least listened to.

There is indeed lots of stronger science coming out now, but there's definitely still a lack of widespread or mainstream awareness of it. We've not yet managed to do what the Science Media Centre does--which is to blow the horn of every BPS researcher out there at every available opportunity. And there's a stubborn attitude, if you read between the lines from NICE, that UK research, especially the kind with big budgets, takes a priority over US research . . . which again means most of the good research is ignored.

NICE's own published summary of research only really included one useful study (Keith Geraghty's on GET), and the rest were dross. So how do we get them to recognise the good stuff? Meanwhile, you can bet they're going to look at Harrison's, given the funding it's received.

 

[Jonathan Edwards]

There are no MRIs to rule out MS, CSF leaks, or other brain problems.

There were no MRIs twenty years ago and to be honest they are not necessary for the vast majority of cases. Unless there are localising neurological symptoms and signs MRI is not indicated.

I am not sure what symptomatic relief people had in the past that they do not get now.

I suspect that @Nasim Marie Jafry was rather unusual in being under the care of doctors at the Royal Free. The vast majority of people at that time would have had no diagnosis and no treatment. I agree that the BPS approach has had a negative impact but I don't think there were ever any good old days of science and great care.

And there's a stubborn attitude, if you read between the lines from NICE, that UK research, especially the kind with big budgets, takes a priority over US research . . . which again means most of the good research is ignored.

I think there has been gullibility on the part of NICE because they have been advised by the BPS people themselves. But there is no 'good research' from the US that should influence what NICE might advise. There is no evidence for any other type of treatment that is being ignored. There are several groups in the US doing biomedical studies but so are there in the UK and most of the results to date have proved negative so they do not impact patient care.

The way to get NICE to recognise what is good is to insist on quality of evidence. And as I keep saying part of that is accepting that the evidence for all sorts of treatments used elsewhere and all sorts of theories in the past is just as bad as for CBT and GET. Otherwise our argument is built on sand.

 

[JemPD]

This is a good point but what I think it demonstrates is that standards of peer review in psychiatry are way out of line with those in other branches of medicine.

yes ah ok i see, in broader terms what can be done about this do you think? I mean by us (pwme/advocates etc), - is there any way for us to affect change is that area? It feels like that' might be a possibly more effective strategy than merely trying to go after PACE itself for retraction, since it seems that all the principle BPSer's research suffers the same methodological flaws. I think you've been saying something like this for a while now, I'm beginning to cotton on what can we do about it Jonathan? anything?

It also appears to show that the MRC is not immune to political interference. An MRC representative during the preliminary discussions before PACE said it fitted well into 'the strategy'. What strategy? The strategy of interest to others was getting people off benefits. The MRC had previously got involved in work related issues like chronic back pain. Projects with that flavour seemed to have different bars to jump over.

ok, so it may be that the MRC has appeared to favour psych rather than biomed proposals, but that could be simply that the psych review process is poor in addition to the poorness of it being overlooked because it fit in with overall drive towards the politically convenient repainting of all illness in BPS terms, while the biomed proposals were held to the usual standards. Rather than a predetermined decision to favour psych over biomed proposals?

Am i understanding you correctly?

 

[JemPD]

The way to get NICE to recognise what is good is to insist on quality of evidence. And as I keep saying part of that is accepting that the evidence for all sorts of treatments used elsewhere and all sorts of theories in the past is just as bad as for CBT and GET. Otherwise our argument is built on sand

my bold
yeah I think i'm getting it, so people going on to NICE and to anywhere else about other options for treatment is actually likely counterproductive? We can point out the other evidence suggestive of possible organic pathology but we need to steer clear of talking about any evidence for alternative treatments because the evidence for them is just as poor as for CBT/GET & we cant have it both ways?

I suspect that @Nasim Marie Jafry was rather unusual in being under the care of doctors at the Royal Free.

If she sees this i'm sure she'll correct one or both of us, but i think @Nasim Marie Jafry was under Prof Behan in Glasgow not the royal free?

 

[Jonathan Edwards]

what can we do about it Jonathan? anything?

Call out the psychs for their poor standards. That needs high profile input from academic medicine and the media. Some of us are working on that but it is certainly a big project!

 

[Jonathan Edwards]

If she sees this i'm sure she'll correct one or both of us, but i think @Nasim Marie Jafry was under Prof Behan in Glasgow not the royal free?

You are probably right - Behan was the other big enthusiast after Ramsay.

 

[Cinders66]

yes ah ok i see, in broader terms what can be done about this do you think? I mean by us (pwme/advocates etc), - is there any way for us to affect change is that area? It feels like that' might be a possibly more effective strategy than merely trying to go after PACE itself for retraction, since it seems that all the principle BPSer's research suffers the same methodological flaws. I think you've been saying something like this for a while now, I'm beginning to cotton on what can we do about it Jonathan? anything?


ok, so it may be that the MRC has appeared to favour psych rather than biomed proposals, but that could be simply that the psych review process is poor in addition to the poorness of it being overlooked because it fit in with overall drive towards the politically convenient repainting of all illness in BPS terms, while the biomed proposals were held to the usual standards. Rather than a predetermined decision to favour psych over biomed proposals?

Am i understanding you correctly?

The MRC around 2004 had a meeting where they decided we didn't need to understand CFSME to be able to treat it, AFAICs there was utter faith in the behavioural model. There's minutes of those meetings I think. That explains why so much money was thrown at pace & FINE, to prove finally what they thought they already knew

Also despite the CMO report 2002, prof blakemore who
Headed MRC thought psychological approaches better for us I think. I can't remember where I get that from.

 

[Sasha]

Call out the psychs for their poor standards. That needs high profile input from academic medicine and the media. Some of us are working on that but it is certainly a big project!

Thanks so much for your work on this. This is what we've needed for decades - high profile input from heavy-duty medics - and it has been missing.

Is there anything that patients can do to support you?

 

[adambeyoncelowe]

I think it depends on which criteria we use, but ME criteria (rather than CFS ones) usually insist on at least some neurological signs (including CCC, ICC, London revised, Nightingale/Hyde, original Ramsay definitions). Given the significant overlap with MS symptoms, I personally would think those scans would be prudent, even if just to rule out MS. I don't think that's currently happening, though.

If we use CFS criteria . . . well, then I think we're dealing with long-term fatigue, which we know has any number of causes (and so detailed testing is probably even more important). I know that statistically any one individual probably doesn't need x, y or z, but at the group level it all adds up. We know that misdiagnosis does happen.

I agree weak evidence shouldn't be included. But NICE is already including the likes of FITNET, while ignoring studies that contradict the BPS model, so it is including weak evidence whether we like it or not. Given that most of the evidence is weak, they're likely to argue (as they have done already) that it's the best data they have.

And then there's the reluctance of clinicians to offer nothing. That was evident at the workshop, where the fatigue clinic 'specialists' would rather offer bad treatments (CBT) than none at all. Fighting with science is a good approach, but there's also politics at work here, and I don't think logic or scientific reasoning is behind most of the bad decisions that have been made to date by NICE and others.

NICE will continue to use weak evidence, because they defer to authority rather than good science. Yet there's evidence that contradicts things like FITNET and PACE (say, studies into CPET and exercise testing) that they're roundly ignoring. Yes, FITNET and PACE are flawed in themselves, which should invalidate them, but NICE don't really seem to be engaging with that, and seem to want to accept studies at face value only.

 

[Jonathan Edwards]

The MRC around 2004 had a meeting where they decided we didn't need to understand CFSME to be able to treat it, AFAICs there was utter faith in the behavioural model. There's minutes of those meetings I think. That explains why so much money was thrown at pace & FINE, to prove finally what they thought they already knew

Also despite the CMO report 2002, prof blakemore who
Headed MRC thought psychological approaches better for us I think. I can't remember where I get that from.

I quite believe that. A link to Colin Blakemore's input would be useful for some documentation we are doing. If you or anyone e else can remember where to find it!

 

[adambeyoncelowe]

I meant to add, too, that NICE is supposed to consider clinical anecdote and patient testimony equally alongside trials. Again, there's bias there, so it's largely a small segment of (BPS) clinicians who are listened to, and patients hardly ever. This, too, frustrates attempts to solely argue against the current regime based on good science. It's like they formed their guidelines with the express intention of ignoring/promoting whatever they wanted to right from the beginning . . .

 

[Cinders66]

This is the MRC page where they highlight that understanding mechanisms not essential or high priority

https://www.mrc.ac.uk/funding/science-areas/population-systems-
medicine/cfsme/



2003 research strategy
In 2003 we set up an advisory group, made up of independent scientists and patient representatives, to develop a research strategy. The advisory group made a number of recommendations, and in particular that in the short term the research community should be encouraged to develop high quality research proposals addressing case definition, understanding of the symptoms of CFS/ME, and new approaches to disease management.

The group believed that significant advances that could impact on the health and quality of life of those with CFS/ME could be made without the need to fully understand underlying causes or triggers.

• Research strategy for CFS/ME – full report (PDF, 400KB)
• Research strategy for CFS/ME – summary report (PDF, 44KB)

In response to the advisory group’s recommendations we issued a notice highlighting CFS/ME as a strategic priority.


From the long document

1. In view of the probable multiplicity of potential causal factors and the widely disparate findings so far reported, the MRC CFS/ME Research Advisory Group considers that studies investigating causal pathways and mechanisms, whilst having merit, would not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients. This is not say that such studies should be abandoned, rather that it is not an essential prerequisite to identify triggers and causal pathways in order to undertake research on CFS/ME.
   

***(Highlighting CFS/me as a research priority is all the MRCs continued approach- it hadn't worked )



But they do still talk about what could be done following the 2002 cmo report.
I can't read much today but just skimming through the 2003 MRC in depth report where they discuss ideas for possible research I'm basically galled that PET Scans to assess microglia is raised as an option to assess brain inflammation- immune activation. I'd not realised this technology went so far back and it's sickening to me that it still has not been done properly and none in the uk . Theres lots of ideas there that could have been followed if people brought in, money put in.

 

[Sasha]

I quite believe that. A link to Colin Blakemore's input would be useful for some documentation we are doing. If you or anyone e else can remember where to find it!

I did a search on 'Blakemore' on PR (an excellent depository of all sorts of stuff) and found these posts, which might be helpful:

http://forums.phoenixrising.me/inde...a-times-uk-needs-responses.11624/#post-200599

http://forums.phoenixrising.me/inde...a-times-uk-needs-responses.11624/#post-200598

And also a link to this, provided by @Dolphin:

http://www.meassociation.org.uk/201...r-colin-blakemore-in-the-times-2-august-2011/

I don't know if that's the kind of thing you're looking for.

On Malcolm Hooper's site, this page has quite a few references to Blakemore: http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

And the home page includes a search box via which you might be able to find more.

Sorry I'm not able to filter the contents for you - I don't read large amounts of text well these days. Perhaps others can help narrow things down.

 

[Skycloud]

But patients now do not get anything but the most basic of blood tests.

That's not the situation for us all in the UK, and I think we should be careful to not say it is. It would be very useful to have reliable evidence for what care/investigations patients actually do receive, I wonder if there is any. I've had various forms of investigations in the last 12 + years in response to reported symptoms which I'd be happy to list if I didn't think it was off topic. I know others are much much less fortunate, but I'm really not the only one.

I think part of the problem for patients is that some clinicians become brain dead (some willfully so) when faced with an ME patient, even beyond all the faults with the NICE guidelines.

edit - change to "I think part of the problem for patients'

 

[Cinders66]

I quite believe that. A link to Colin Blakemore's input would be useful for some documentation we are doing. If you or anyone e else can remember where to find it!

http://forums.phoenixrising.me/index.php?threads/horrifying-article-in-sunday-times.23050/

There's a quote in this newspaper article copied in full , near the bottom. I can't copy it but he says he made recommendations to the MRC on CFS funding that it was best for the bulk of the money to be spent on psychological treatments. He then is indignant that patients didn't like that. He says he had an unpleasant encounterm accosted by an angry activist, he suggests it was almost as bad as being bombed. The whole article is awful.

"After concluding that the bulk of cash would be most profitably spent investigating Psychological treatments, there was outrage from the community"

That might mean he chose pace fine , rather than let's go psychological but his writing always suggests that leaning.