Link to videos of talks from the CMRC conference

[slysaint]

Cher does an impression of EC.........stunning

eta: for comparison purposes

 

[Esther12]

Holgates talk was depressing, he basically part admitted the CMRC hasn't achieved much, Newton and parry are leaving CMRC, MRC lady is leaving (some replacements mentioned) and MEGA was NOT funded but they're still pursuing it. He, when ending, said worldwide research had been interesting but I think UK is limping behind now with the unhelpul, inaccurate way CFS is framed and regarded in UK medical world and the lack of central direction/intervention to get things properly recognised and stepped up a gear as has happened in USA.

That sounds brilliant, if only they were self-aware enough to realise that it was their mistakes which were the problem.

At least it sounds like he's stopped pretending they're succeeding. We need some realism about the current state we're in, and less 'positivity' from people who have no idea what they're talking about.

edit: When I watched it myself I didn't think it was brilliant.

 

[lilpink]

That sounds brilliant, if only they were self-aware enough to realise that it was their mistakes which were the problem.

At least it sounds like he's stopped pretending they're succeeding. We need some realism about the current state we're in, and less 'positivity' from people who have no idea what they're talking about.

A start would be for MEA to remove themselves from this farce of an organisation. It seems the rats are leaving the sinking ship..be a shame to be the last rat in the ..er tent/ ship? (This mixed metaphor malarkey is too much for me today!).

 

[NelliePledge]

MEA just seem to be retweeting AfMEs tweets; would have been nice to see their assessment of presentations.
https://twitter.com/meassociation?lang=en

I think it will be Russell doing the twitter as usual I don't think he's at CMRC. Assuming Dr Charles Shepherd is there and will report on his take on the presentations when he gets back

 

[NelliePledge]

Peter Rowe going straight for White at the start of his talk

 

[Esther12]

Peter Rowe going straight for White at the start of his talk

Some mention of White starting around the 6 minute mark. Not a lot, but enough to make me like Rowe!

I normally only watch things from those I dislike, but Crawley hasn't appeared yet.

 

[Countrygirl]

Some mention of White starting around the 6 minute mark. Not a lot, but enough to make me like Rowe!

I normally only watch things from those I dislike, but Crawley hasn't appeared yet.

She hasn't appeared on the Day 2 presentations. They were only made available if the speaker gave permission.

 

[Esther12]

She hasn't appeared on the Day 2 presentations. They were only made available if the speaker gave permission.

No doubt she was discussing the exciting results from the SMILE trial that she's so proud of!


The Holgate talk was so cringe-worthy. Years ago, I hoped he was trying to play the system for the benefit of patients. Now I think that he is the system, he respects the systems values, and he's a disaster for us.

It seems pretty clear that all the CMRC has done is helped strengthen the position of Crawley and helped others in the UK medical establishment pretend that there's some worthwhile body in place for helping 'bring together' patients and researchers in this contentious area. How can anyone, other that Crawley/White/Wessely/etc think that this is a good idea?

The only remotely cheering thing from his talk was the news that MEGA didn't get funded.

The link with Arthritis Research UK's 'pain' initiative looks terrible too.

This is what exciting research they're funding:

Our national pain centre
Since 2010 we’ve been funding a national pain centre with the University of Nottingham in a bid to tackle long-term pain, involving clinicians and scientists from different research fields. These experts are working together to research better treatments for arthritis.

The aims over the next five years are:

• looking at pain from a social context; finding out what patients’ understanding of pain is and what they expect from treatment
• investigating closely two forms of pain mechanisms: the role of peripheral pain (pain that comes from the nerves in the joints) and central pain (the way that the brain responds to and processes chronic pain) and trying to produce new compounds that target these pain pathways
• running clinical trials aimed at testing existing drugs and any new painkillers that may be produced over the next five years.

Our research section gives more information about what we’re funding.

Research into the placebo effect
We’re funding some interesting research into the power of the placebo effect (where patients feel an improvement in their symptoms due to the power of suggestion rather than due to the effects of an actual drug). Our research team are giving placebos to volunteers with osteoarthritis and fibromyalgia to find out if they release natural painkillers in the body, known as endogenous pain control mechanisms.

The researchers are using laser stimuli to induce experimental placebo responses in the three volunteer groups. It’s believed that people with chronic widespread pain have abnormalities of how they anticipate and focus on pain and the researchers suggest that this results in them feeling greater pain than other people.

Novel research using mirrors
Our research has shown that mirrors can trick the brain into recovering from severe, long-term pain.
Researchers have found that people with severe pain in a limb (such as complex regional pain syndrome) found relief by looking at a reflection of their healthy limb in a mirror. The reflection of the non-painful limb gives the person the impression of now having two healthy, pain-free, functioning limbs. The treatment is based on a new theory about how people experience pain even when doctors can find no obvious direct cause.

The theory suggests that the brain’s image of the body can become faulty, resulting in a mismatch between the brain’s movement control systems and its sensory systems, causing a person to experience pain when they move a particular limb. Imaging studies have demonstrated that chronic pain reduces activity within the brain’s sensory and motor systems that relate to the painful area. Mirror visual feedback therapy has been shown to reactivate these areas, thereby improving function and reducing pain.

Telephone-delivered CBT
Our research has shown that cognitive behavioural therapy (CBT) provided over the phone can have a positive impact on people suffering from chronic widespread pain compared to usual care provided by their GP.

Patients who received a short course of CBT over the telephone from trained therapists reported that they felt ‘better’ or ‘very much better’ at the end of a six-month treatment period, and also three months after it ended.
Our trial was the first-ever trial of telephone-delivered CBT for people with chronic widespread pain.

Exercise was also shown to improve pain and disability and helped people manage their symptoms.

Other research
Much of our research looks at pain at specifics sites. We’ve shown that yoga can help people manage back pain more effectively, and we’re currently investigating acupuncture and the Alexander technique as possible treatments for neck pain.

We’re looking at better ways of managing back pain in primary care by developing a new screening tool for GPs which has been designed to pick up whether a patient’s risk of back pain becoming chronic is low, medium or high – and which is enthusiastically being taken up by GPs around the country. Patients are then offered different treatments, with those at highest risk of their back pain becoming chronic given the most intensive physiotherapy treatment, while those at low risk are encouraged to avoid numerous sessions of treatment that are unlikely to be beneficial.

We’re looking at whether a particular intense form of CBT can help people whose back pain has led them to withdraw from society and normal life, people who are known as ‘fear avoidant’. It’s being compared to physiotherapy. Early results look promising.

https://www.arthritisresearchuk.org...-and-arthritis/pain-report/pain-research.aspx

Also, there was that time when the Research Councils website reported Arthritis Research UK were giving funding to PACE, only for them to say that was not the case, and then nothing came of it:

https://twitter.com/i/web/status/773447439839817729

Here's the Royal Scoiety meeting on fatigue Holgate mentioned: https://royalsociety.org/science-events-and-lectures/2017/09/neurobiology-fatigue/#

Session 1 is chaired by Trudie Chalder.

Then we have the CMRC's Mark Edwards speaking:

16:05-16:40 Fatigue and Functional Neurological Disorder – making a pathophysiological link
Professor Mark Edwards, St George's University of London, UK

Abstract
Functional neurological disorder (conversion disorder/psychogenic disorder) is one of the commonest diagnoses made in neurology clinics. People present with genuine neurological symptoms, but such symptoms ‘break rules’ regarding basic anatomy and physiology. Patients with functional neurological disorder have traditionally fallen down the crack between the dualistic divide of neurology and psychiatry, and tend to have a poor prognosis. Recent developments in pathophysiological thinking in this disorder has provided a neurobiological account of functional symptoms to go alongside psychodynamic accounts. This account uses models of brain function based on active inference to explain functional symptoms. This lecture will consider if there is an extension of this work to help us understand the pathophysiology of fatigue, and how this might also enhance treatment.

Apparently the 'visionary' Mark Edwards has suggested that the CMRC reconsider its purpose after this years conference.

Please God... don't let anything come of the meeting with Vicky Whittemore from NIH. The last thing we need is for the mentality of the CMRC to contaminate the USA.

Holgate's talk was more positive spin on bad developments. I think it's more likely that he's just mindlessly deferential to authority rather than acting out on any sinister intentions, but that doesn't make it any better for us.

 

[Esther12]

I thought that the former patient (Phil Murray) was good on mentioning some patient concerns about using 'fatigue' as an outcome measure, and on problems with the HADS.

I totally recognise that this will have been a difficult thing for him to do, but I also want to make some criticisms (can't help myself). I thought he seemed pretty naive about the politics around CFS research.

He also said: "Even a few months ago one of my friends said 'oh I think it's psychological'... I mean, y'know, really, and she's a friend of mine" - what point was this meant to be making? He really seemed to stumble into the 'psychosocial construct' discussion in a way that was pretty unhelpful.

He said (around 19:00):

"And I speak for all the PAG when I say that we do not want to see headlines like this anymore. [Slide: Could Exercise be the cure for Chronic Fatigue?] Absolutely not."

...

"Or that: [slide with headline on PACE: "Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome"]. Now I happen to know that's an appalling piece of reporting and it doesn't reflect the trial behind it, so I'm not criticising the trial, I'm just saying that's appalling reporting."

It was the PACE LTFU paper. How can you criticise the reporting, but not the spin and manipulation that came directly from the PACE researchers? That seems very weak to me. It's entirely the wrong way around. The problem is the spun research. Focussing on just some headlines... how many headline writers were in the audience?

Just saying "we do not want to see headlines like this anymore" without explaining why it is that the headline is inaccurate or misleading risks making patients seem opposed to uncomfortable realities ('anti-science' as Crawley would put it). Crawley cited PACE to claim "evidence from a recent trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment". [As I note in my signature!] If he's not going to criticise Crawley, why would he criticise headline writers who promote her claims?

He makes some criticisms around 20:00, but they're all very vague, and again just drift into the 'biomedical' vs psychosocial stuff in an unhelpful manner. There was talk about it 'being real' in a way that could imply psychological conditions are in some way not 'real' (even if that's not what he meant, why risk giving that impression?).

I feel a bit bad being so critical, but I do think that there was some problems with that talk and it's best to openly discuss this stuff.

 

[A.B.]

@Esther12 thanks for articulating it so well. What may have happened is that Holgate received his information on these issues straight from Crawley and therefore does not believe that any criticism of PACE/CBT/GET is legitimate. Instead he sees it the way Crawley is presenting it: an excuse by mean people to attack researchers for personal or ideological reasons. He is trying to solve the wrong problem and therefore failing to succeed. He is trying to get everyone to be nice to each other and collaborate, hoping that disagreements will disappear. But they won't because the bad science isn't being challenged and the CBT/GET proponents continue to publish more bad science.

 

[Cinders66]

I thought that the former patient (Phil Murray) was good on mentioning some patient concerns about using 'fatigue' as an outcome measure, and on problems with the HADS.

I totally recognise that this will have been a difficult thing for him to do, but I also want to make some criticisms (can't help myself). I thought he seemed pretty naive about the politics around CFS research.

He also said: "Even a few months ago one of my friends said 'oh I think it's psychological'... I mean, y'know, really, and she's a friend of mine" - what point was this meant to be making? He really seemed to stumble into the 'psychosocial construct' discussion in a way that was pretty unhelpful.

He said (around 19:00):

"And I speak for all the PAG when I say that we do not want to see headlines like this anymore. [Slide: Could Exercise be the cure for Chronic Fatigue?] Absolutely not."

...

"Or that: [slide with headline on PACE: "Exercise and positive thinking 'can help overcome' Chronic Fatigue Syndrome"]. Now I happen to know that's an appalling piece of reporting and it doesn't reflect the trial behind it, so I'm not criticising the trial, I'm just saying that's appalling reporting."

It was the PACE LTFU paper. How can you criticise the reporting, but not the spin and manipulation that came directly from the PACE researchers? That seems very weak to me. It's entirely the wrong way around. The problem is the spun research. Focussing on just some headlines... how many headline writers were in the audience?

Just saying "we do not want to see headlines like this anymore" without explaining why it is that the headline is inaccurate or misleading risks making patients seem opposed to uncomfortable realities ('anti-science' as Crawley would put it). Crawley cited PACE to claim "evidence from a recent trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment". [As I note in my signature!] If he's not going to criticise Crawley, why would he criticise headline writers who promote her claims?

He makes some criticisms around 20:00, but they're all very vague, and again just drift into the 'biomedical' vs psychosocial stuff in an unhelpful manner. There was talk about it 'being real' in a way that could imply psychological conditions are in some way not 'real' (even if that's not what he meant, why risk giving that impression?).

I feel a bit bad being so critical, but I do think that there was some problems with that talk and it's best to openly discuss this stuff.

I agree on it was good Phil calling out the fatigue narrative vs multi symptom illness patients experience. I winced through the PHysio talk from the fatigue clinic and holgates often is reductionist with pain and fatigue and I thought he articulated that well. I simply don't understand how he can work with Crawley who often says CF, part devised NICE criteria which slipped in the interchangeability of PEM & PEF and uses that criteria and who does fatigue studies under the CFS name. Likewise the criteria chosen for MEGA, which the PAG now is basically a fan club of, is NICE?? Are the PAG able to get PEM recognised by the MEGA Drs?

Most of his talk was good but...

I also agree on the headlines vs research, AFME always do this , show outrage at PACE or GET headlines and don't criticise the research or the presss RELEASE on which they're based. For him maybe he's a PACE fan but it's nativity, for them it's duplicitous.

Whilst I think hearing patients voice was good I think it was also PR showing how the CMRC /MEGA has patients backing, when the PAG were a subset of patients who are CMRC/MEGA out and out supporters, those critical left.

 

[Cinders66]

No doubt she was discussing the exciting results from the SMILE trial that she's so proud of!


The Holgate talk was so cringe-worthy. Years ago, I hoped he was trying to play the system for the benefit of patients. Now I think that he is the system, he respects the systems values, and he's a disaster for us.

It seems pretty clear that all the CMRC has done is helped strengthen the position of Crawley and helped others in the UK medical establishment pretend that there's some worthwhile body in place for helping 'bring together' patients and researchers in this contentious area. How can anyone, other that Crawley/White/Wessely/etc think that this is a good idea?

The only remotely cheering thing from his talk was the news that MEGA didn't get funded.

The link with Arthritis Research UK's 'pain' initiative looks terrible too.

This is what exciting research they're funding:



https://www.arthritisresearchuk.org...-and-arthritis/pain-report/pain-research.aspx

Also, there was that time when the Research Councils website reported Arthritis Research UK were giving funding to PACE, only for them to say that was not the case, and then nothing came of it:

https://twitter.com/i/web/status/773447439839817729

Here's the Royal Scoiety meeting on fatigue Holgate mentioned: https://royalsociety.org/science-events-and-lectures/2017/09/neurobiology-fatigue/#

Session 1 is chaired by Trudie Chalder.

Then we have the CMRC's Mark Edwards speaking:



Apparently the 'visionary' Mark Edwards has suggested that the CMRC reconsider its purpose after this years conference.

Please God... don't let anything come of the meeting with Vicky Whittemore from NIH. The last thing we need is for the mentality of the CMRC to contaminate the USA.

Holgate's talk was more positive spin on bad developments. I think it's more likely that he's just mindlessly deferential to authority rather than acting out on any sinister intentions, but that doesn't make it any better for us.

Despite the dodgy introduction, the RSM conference looks pretty good. God knows why chalder is chairing a neurobiology session. What it reveals is the complexity of fatigue and how across many illnesses there's still big questions and little direct treatments. That's why I'm so frustrated in ME research as it's often presented that it's great we have one study going on here or elsewhere or one new researcher , when in even MS where there's loads of research there's stil so msny questions and need for treatments and we are way behind them in level of research effort.

I haven't watched the supposedly inspirational dementia talk but that dementia collaboration organisation has got around £50m funding from MRC which i would suggest Is rather helpful for speeding progress.

 

[slysaint]

Peter Rowe going straight for White at the start of his talk

Playing catch up; Rowes presentation is well worth watching. Easy to follow, very informative and to the point. Also backed up by real research and not afraid to point out the failings of the BPS approach.

At around 14.00 he goes on to Paediatric studies..............EC must have been squirming.
All paediatric studies show a high prevalence of OI in children with ME/CFS.
18.00 he then looks at epidemiological studies and points out problems with methodology.

I'm not surprised EC opted not to be filmed..........

 

[Molly98]

Playing catch up; Rowes presentation is well worth watching. Easy to follow, very informative and to the point. Also backed up by real research and not afraid to point out the failings of the BPS approach.

View attachment 23787
View attachment 23788

At around 14.00 he goes on to Pediatric studies..............EC must have been squirming.
All pediatric studies show a high prevalence of OI in children with ME/CFS.
18.00 he then looks at epidemiological studies an points out problems with methodology.

I'm not surprised EC opted not to be filmed..........

yes I was thinking exactly the same thing when watching it, thanks to Dr Rowe for having the courage to stand up and say it when many others shy away from it.

 

[NelliePledge]

Yes Rowe specifically had a pop at the NICE guidelines for not addressing OI and very pointedly highlighted the very many studies reviewed for the IOM report.

 

[lilpink]

Now I think that he is the system

He always was (imo).

 

[slysaint]

Watched the Dr Linda van Campen presentation. Didn't really understand what she was getting at until the very end when she said "CBF decline is NOT caused by deconditioning".

Okay; this talk was a follow on from this one on OI :
Prof Dr Frans Visser which was short and to the point; interesting bit about measuring cerebral blood flow.
All this objective testing.........must be mind boggling to some of the audience...........

 

[lilpink]

Playing catch up; Rowes presentation is well worth watching. Easy to follow, very informative and to the point. Also backed up by real research and not afraid to point out the failings of the BPS approach.

View attachment 23787
View attachment 23788

At around 14.00 he goes on to Pediatric studies..............EC must have been squirming.
All pediatric studies show a high prevalence of OI in children with ME/CFS.
18.00 he then looks at epidemiological studies and points out problems with methodology.

I'm not surprised EC opted not to be filmed..........

Top man ... a rarity in that context!

 

[charles shepherd]

MEA just seem to be retweeting AfMEs tweets; would have been nice to see their assessment of presentations.
https://twitter.com/meassociation?lang=en

Watched the Dr Linda van Campen presentation. Didn't really understand what she was getting at until the very end when she said "CBF decline is NOT caused by deconditioning".

This was an extremely busy, diverse and enjoyable two day biomedical research conference in Bristol. Probably the best CMRC conference so far…..

We were fully booked with lots of young and new researchers present from both the UK and from abroad (USA, Australia, Netherlands, Norway, Poland.....)

And there were some excellent presentations from people like James McCullagh, Karl Morten, Julia Newton, Neil Harrison (UK), Avi Nath (NIH/USA), Don Staines (Australia) Peter Rowe (USA) and Jose Montoya (USA). The latter had flown to the UK at his own expense to come to the conference.

I will produce a short report covering the most important points to emerge later today.

Dr Charles Shepherd - Hon Medical Adviser, MEA

 

[charles shepherd]

I agree on it was good Phil calling out the fatigue narrative vs multi symptom illness patients experience. I winced through the PHysio talk from the fatigue clinic and holgates often is reductionist with pain and fatigue and I thought he articulated that well. I simply don't understand how he can work with Crawley who often says CF, part devised NICE criteria which slipped in the interchangeability of PEM & PEF and uses that criteria and who does fatigue studies under the CFS name. Likewise the criteria chosen for MEGA, which the PAG now is basically a fan club of, is NICE?? Are the PAG able to get PEM recognised by the MEGA Drs?

Most of his talk was good but...

I also agree on the headlines vs research, AFME always do this , show outrage at PACE or GET headlines and don't criticise the research or the presss RELEASE on which they're based. For him maybe he's a PACE fan but it's nativity, for them it's duplicitous.

Whilst I think hearing patients voice was good I think it was also PR showing how the CMRC /MEGA has patients backing, when the PAG were a subset of patients who are CMRC/MEGA out and out supporters, those critical left.

Yes, Phil gave a very good presentation on the work of the PAG

CS