UK Research Collaborative Conference in Newcastle: 13th - 14th October

Sidereal

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Cognitive biases might also be important for the way in which sensory information from a physical triggering event is weighted during perceptual inference. Patients with somatization disorder have been shown to have cognitive biases towards retaining information relating to illness (Martin et al., 2007) and catastrophic thinking about symptoms (Crombez et al., 1998). The ‘jumping to conclusions’ bias is a well-known tendency of patients with delusions, illustrated by their deciding after fewer draws than most control subjects whether a hidden urn contains a majority of one ball colour or another (Garety and Freeman, 1999). The Bayesian perspective provides a unifying account of these failures to represent uncertainty and the key role of attention—this is because both rest on optimizing the precision in hierarchical models. We have recently demonstrated that the ‘jumping to conclusions’ bias is also present in patients with functional motor symptoms, consistent with a tendency to overweigh evidence; a tendency that could lead to abnormal inferences about sensations during a physical triggering event (Paree´ s et al., 2012a).

This discussion demonstrates the rich and varied potential causative factors behind the development of FMSS, which contrasts with the simplistic concept of them being caused by a single emotional traumatic event (e.g. childhood sexual abuse). Epidemiological studies have not found childhood trauma, or recent emotional life events, to be necessary for FMSS (Roelofs et al., 2002; Sharpe and Faye, 2006; Kranick et al., 2011); indeed, Sharpe and Faye (2006) comment, ‘the association with psychological issues is much less prominent than expected’. The emphasis on emotional triggering events, particularly childhood sexual abuse, is, arguably, based on a specific (and perhaps simplistic) interpretation of the concept of conversion disorder introduced by Breuer and Freud in 1893–95 (Breuer and Freud, 1991) and later extended by Freud alone. In this theory, the role of a psychological conflict is paramount. Freud believed that a psychologically challenging situation, replete with emotional conflicts, could reawaken memories of an earlier (childhood) situation containing similar, unresolved conflicts between biological drives and social demands or childhood experiences. These (unconscious) memories would give rise to unpleasant thoughts or emotions, which were repressed in order to keep them from awareness and hence from causing further distress or conscious recollection. The ‘psychic energy’ of the repressed negative memories had to find another method of discharging itself—so it was converted into a somatic symptom, which generally had some symbolic relation to the memories or wishes being repressed. This protection of consciousness from conflict and distress was the ‘primary gain’ of the production of hysterical symptoms, although Freud noted the patient might then derive a ‘secondary gain’ from their elevated status as an invalid. Although many of the constructs and the symbolism proposed by Freud have been discarded, the idea that FMSS are an unconsciously generated expression of (otherwise uncommunicated) psychological conflict retains considerable popularity. We suggest, however, that this provides a rather one-dimensional approach to causation that may not be appropriate for many patients with FMSS. Indeed, overemphasis of the importance of childhood sexual abuse and other specific life events in causing FMSS by treating physicians may directly harm patients for whom these factors are unimportant.

Psychobabble 2.0. New and improved multi-dimensional psychobabble.
 

user9876

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I'm coming to hate the word "belief".


Bayesian inference in the brain to explain functional motor and sensory symptoms in terms of perception and action arising from inference based on prior beliefs and sensory information. This explanation exploits the key balance between prior beliefs and sensory evidence that is mediated by (body focused) attention, symptom expectations, physical and emotional experiences and beliefs about illness. Crucially, this furnishes an explanation at three different levels:


When people talk of Baysian networks they sometimes refer to belief propagation networks and I think the prior beliefs are simply the prior probabilities needed for a calculation. They can then be updated as additional evidence comes along. Or at least that is my memory of probabilistic reasoning, although I never looked at baysian networks but did look at related techniques many years ago.

[Edited] Of course suggesting a baysian inference system within the brain would be somewhat controversial and as far as I know not backed up by any science - as opposed to ways of modelling data inputs and outputs in a more abstract sense to try and take a blackbox look at function but her care needs to be taken to not take a behaviourist approach which was discredited years ago.


So I'm not sure I would read much into his used of the word belief. When talking of perceptual inference I would also see this as an automatic processes (I don't like the phrase 'subconscious'). I know when looking at language there are what look like associative or automatic inferences between sentences and mental representations, I think the same is true in visual processing. To my mind there is a question as to whether the sensory inputs are processed into control signals for the body and if something (such as Microglia activation or some sort of cytokine signaling is disturbed by auto-antibodies) is getting in the way of the correct processing.


The real question is what type of brain scanning is he going to do. I think fMRI will have little value in helping understand cause, basically it shows deoxygenation of hemoglobin which could differ due to a variety of reasons including Fluge and Mella's theory about capillaries. There has been other promising work on brain scans which showed unusual Microglia activation I would hope he would see this as a place to start.


But I would be very concerned given his slide set which is poor not only in its content as people have discussed but also in the lack of any real content or approach. I worry about him getting such a large amount from the MRC when we are not hearing a decent proposal of what he is actually going to do in terms of scanning etc. But then I didn't see his talk so it might be in there.
 
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bertiedog

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So Jo Ninj's study is showing that it's our expectation that is causing the problems we have on exercising. I have to say that this is such rubbish.

I regularly do 7500-10000 steps daily (since being on the Cowden protocol) but I still run into trouble at the end of my walks but it can vary a lot and sometimes I surprise myself as to how well I walk. Before the walk I quite often don't think that I would be able to walk very well that day but I can be wrong and find that in fact I walk well on that day but still my energy runs out and I feel half dead and feel pain in my legs so when I get home I need to eat something to boost my blood sugar which will feel too low and then have a boost of at least 20 minutes of oxygen from my oxygen concentrator. On a bad day I will need longer on my oxygen concentrator.

After this I will feel better in myself but I still need to rest to get some recovery.

From my experience I cannot agree with what he said during his lecture.

Pam
 
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Scarecrow

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Is this the title of a grant? Or just a title he made up for a presentation to the CFS/ME Research Collaborative?
Imaging the Neural Correlates of Post-Exertional Malaise in CFS/ME
I've been wondering exactly that.

The Facebook entry that Bob linked to refers to "his study to seek a unified mechanism for functional neurological symptoms." Perhaps this is just part of a larger study. Even if ME is a functional neurological syndrome (however you choose to interpret the word), the study as announced at the conference is hardly going to deliver a unified mechanism for ME let alone any functional neurological symptom.
AfME on Fb said:
Dr Mark Edwards has confirmed that the Medical Research Council has made a £600,000 contribution to the overall cost of his study to seek a unified mechanism for functional neurological symptoms.
Dr Mark Edwards is getting £600,000 from the MRC for his study. There's a tiny bit more info about it at the following link, but it's not much of an explanation:
https://www.facebook.com/actionforme/photos/a.76870643208.71362.72990583208/10153651102008209/?type=3&theater

It's worrying that Dr Edwards didn't think to mention the "successful treatment" that would form part of the study during his presentation.
 

K22

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A selection of interesting earlier tweets by Sonya...

Note that Holgate specifically states that ME/CFS is a medical illness, and endorses the IOM report. So there's no sitting on the fence or pandering to the psych lobby by him here...

"Holgate: IOM report significant. We are dealing with a complex mix of illnesses. This report crystallises #mecfs as a medical illness"
https://twitter.com/SonyaChowdhury/status/653865778098405376

"Audience hearing Holgate introduce the IOM report - this is the view of the CMRC too"
https://twitter.com/SonyaChowdhury/status/653866055866183680

"Holgate: NIH pathways to prevention report being intro now. Innovative biomedical research needed - none of us would disagree with this need"
https://twitter.com/SonyaChowdhury/status/653866647942483968

"Montoya: "I have a wish and a dream that medical & research societies in US apologise to #MECFS patients""
https://twitter.com/SonyaChowdhury/status/653870049091014656

"Montoya: measuring cytokines every day and follow activity #MECFS - leptin was the prominent one #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653880431675371520

"Montoya: measured 51 cytokines in 200 cases and 400 controls #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653880935306371072

"Montoya: sharing unpublished data #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653881962504044545

"Montoya: valganciclovir study - significant response in terms of physical function for #MECFS participants #CMRC2015"
https://twitter.com/SonyaChowdhury/status/653877996567269377

"Montoya: duration of illness is important for use of valganciclovir #CMRC2015 led us to do a double blind RCT study"
https://twitter.com/SonyaChowdhury/status/653878283554172928



One of the great gifts of the IOM p2p reports it seems to me is that it makes it pretty impossible to publically promote a purely behavioural approach ot me/cfs at a scientific conference now.


Holgate seems to use the iom report to support the uk broad anything goes approach to CFS definitions whereas for research purposes i am sure many patients would prefer the CCC to be over fukuda or NICE & I am amazed Julia Newton expressed only mild anxiety at Fukuda research covering possibly very different illness. Jo nij for example is framing CFS as primarily pain & fatigue, that isn't my own experience. I think the definite losers in the wide chronic fatigue umbrella approach are the severely affected with m.e and I notice the uk collaborative still ,unlike the IOM report and SEID , aren't putting enough emphasis on PEM .

I don't fear the MRC perpetuating an old psychological narrative or avoiding talking about the medical, i do fear dawdling over years with yet more workshops & big talk But little funding; continued low or poorly directed funding and refusal to ring fence; continuing use of the name cfs and broad definitions which our psychs (white, chalder, deary,Wearden, Morris) widely misuse whilst seemingly lamenting that serious researchers won' t touch us; the continued focus on fatigue across illnesses instead of the disabling specifics of M.E; the leaving severe in the shadows etc.

Montoya was brilliant in his answer to how he would advise the CMRC - up the funding & cut the egos. I wish MRC were more in the business of saving lives than saving face & that requires more urgency and commitment- including on funding - than we have seen.
 

eafw

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Prof Newton up now talking about the large cohort study and how they were able to look at a number of aspects at the same time.

Cardiac MRI showed reduced cardiac volume, secondary to deconditioning ? Also measured plasma and red cell volume. Confirmed cardiac abnormality.

More fatigued patients had lower plasma volume, but no link to length of time that they had illness. Potentially gives therapeutic target. Submitting application to see if IV bolus of fluid will help.

She doesn't say why plasma volume is lower than it should be, any theories on this ?
 

Sidereal

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Submitting application to see if IV bolus of fluid will help.

Clinicians in the US have been saying for decades that IV saline is an effective short-term symptom relief measure in ME patients. People have been prescribing blood volume expanding drugs like fludrocortisone and desmopressin for many years. These interventions are modestly effective at best.
 

user9876

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Prof Newton up now talking about the large cohort study and how they were able to look at a number of aspects at the same time.

Cardiac MRI showed reduced cardiac volume, secondary to deconditioning ? Also measured plasma and red cell volume. Confirmed cardiac abnormality.

More fatigued patients had lower plasma volume, but no link to length of time that they had illness. Potentially gives therapeutic target. Submitting application to see if IV bolus of fluid will help.

She doesn't say why plasma volume is lower than it should be, any theories on this ?

I think that's interesting as there are people on here who report improvements with IV fluids.
 

Sasha

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On Julie Newton's talk (latest tweet first):

AfME on Twitter said:
"Things always take longer than you want... a decade is a long time (for progress) but probably realistic in science", says Prof Newton.

Prof Newton's pilot study finds impaired cardiac uptake associated with CFS - may be a primary cardiac abnormality underpinning the illness.

Reduced cardiac volume may constitute a (pre-existing) vulnerability for developing CFS, according to Prof Newton's research.

"The more fatigued a patient is, the lower their plasma volume", Prof Newton's research has found. #CMRC2015

"Recent studies have shown that CFS is associated with abnormalities of cardiac function" - Prof Julia Newton.

"We need to look at what's happening in the brain and the muscles simultaneously in people with #mecfs", says Prof Julia Newton.

"There is a malfunctioning of the autonomic nervous system in PWME and this is linked to a lack of inter-muscular recovery"

Good to be back to biomedical stuff...
 

K22

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On Julie Newton's talk (latest tweet first):



Good to be back to biomedical stuff...


That time frame is it based on the current low level funding/effort or still that long even if uk & USA drastically ups it's response to this disease? If it's 10 years to progress to mainstream tests and treatments I will give up but maybe she just means her angle of research will take 10 years and in that time the Norwegians or Stanford approaches might have improved our function to tolerable levels.
 

Sasha

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That time frame is it based on the current low level funding/effort or still that long even if uk & USA drastically ups it's response to this disease? If it's 10 years to progress to mainstream tests and treatments I will give up but maybe she just means her angle of research will take 10 years and in that time the Norwegians or Stanford approaches might have improved our function to tolerable levels.

I don't know from that tweet if she was talking about ten years into the future or that it had taken them ten years to get where they are now.
 

Sasha

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Think I'm going to just leave that channel running all day in case any other stuff gets randomly livestreamed!

Dr Fluge presented on rtx before that - I don't know if they broadcast any of his talk at all.
 
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