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Launch of the UK Research Collaborative

maryb

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From the facebook page of MEresearch - read and weep............ They are trying to take over the shape of future research. I for one don't care 'what next'?

Launch of the UK Research Collaborative

The new UK CFS/ME Research Collaborative (CMRC) will be launched on Monday April 22nd at the Wellcome Collection building in London. Its aim is to promote the highest quality of basic and applied evi...denced-based and peer reviewed research into ME/CFS, and the launch will bring together a range of national agencies, ME/CFS charities, and over 70 working researchers from across the UK. The final programme is given below, and our trustees Sue Waddle and Jan McKendrick, along with Dr Neil Abbot, will be there representing ME Research UK.

Morning
Chair: Prof Stephen Holgate
12.0-12.10: The importance of research for patients with CFS/ME (Annette Brooke MP, Chair All Parliamentary Group on ME)
12.10-12.20: Medical Research Council Initiatives in CFS/ME (Dr Joe McNamara, MRC Head Office, London)
12.20-12.30: National Institute for Health Research support for CFS/ME Research (Dr James Fenton, NIHR Trainees Coordinating Centre, Leeds)
12.30- 12.40: The Role of Medical Charities in CFS/ME research (Sue Waddle, ME Research UK; on behalf of all 5 Research-supportive Charities)
12.40-12-50: Why a UK Collaborative is needed in CFS/ME (Prof Stephen Holgate, Chair CMRC, MRC Professor of Immunopharmacology, University of Southampton)
12.50-13.00: The UKCMRC charter (Dr Esther Crawley, Deputy Chair CMRC, Centre for Child and Adolescent Health, University of Bristol)
13.00-14.30: Lunch and poster viewing

Afternoon
Chair: Dr Esther Crawley
14.30-14.40: My research into CFS/ME (Simon Collin, University of Bristol)
14.40-14.50: My research into CFS/ME (Zoe Gotts, University of Northumbria)
14.50- 15.05: Autonomic dysfunction in CFS (Prof Julia Newton, Newcastle University)
15.05-15.20: What can be learnt from fatigue in other diseases (Dr Wan Ng, Newcastle University)
15.20-15.35: Role of interferons in fatigue (Dr Carmine Pariante, King’s College London)
15.35-15.50: Muscle energy abnormalities in CFS/ME (Dr Nicola Wells, University of Liverpool)
15.50-16.05: Salivary cortisol in adolescents with chronic fatigue syndrome: comparison with healthy controls and change after treatment (Dr Katharine Rimes, King’s College, London)
16.05 16.35: Question and Answers (Panel of speakers)
16.35-16.45: What next? (Prof Stephen Holgate and Dr Esther Crawley)
Meeting Close
 

snowathlete

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I think we'd be right to be nervous and skeptical of this, but we don't know yet, and can't know yet, whether this will be a good or a bad things, and in either case it will likely be a grey rather than black and white.

There could be a net benefit from this in terms of funding and improved balance, or it could go the other way, or stay much the same. To be honest, I think we have to wait and see, but I admit to being apprehensive about this.
 

Esther12

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I think this quote from Stephen Holgate is telling:

The key to success will be the engagement of scientists outside the field.
Or getting rid of the worst quacks already inside the field.

Honestly, I think that we really need a break from the past, and an acknowledgement that huge swathes of CFS research is so badly done that it caused more harm than good. There's also a worry that this could mix in good research with the sort of quackery that has surrounded CFS, and been used as an excuse to psychosocially manipulate patients without informed consent.

The press release for this collaboration chose to focus upon these 'maintaining factors' for some reason:

For treatment purposes, important maintaining factors include comorbid mood disorders, beliefs about causation, and either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour).

http://www.actionforme.org.uk/Resources/Action for ME/Documents/CMRC launch media statement.pdf

The Science Media Centre decided to promote this by opening with:

Chronic Fatigue Syndrome (CFS; also known as ME) is an incredibly controversial field, not just in terms of public perception, diagnosis and treatment but even for the very researchers trying to help, who have experienced campaigns of harassment from some patients.
http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/
Honestly, I'm dubious about the value of CFS research at the moment (unless it's focusing on sub-typing) - lumping together all people with CFS and looking for shared abnormalities just seems like a way of picking up on the secondary factors which occur when people have something which is causing them to suffer from chronic fatigue.

Given the money that was put into PACE, and the failure to release results for the outcome measures laid out in the protocol, choosing to spin away instead, maybe we need to do some basic research like: Do patients mind being misled about the efficacy of treatments? Is it acceptable to encourage patients to believe things which are not supported by the evidence? Do patients find it helpful to be able to trust their doctors? Should those who mislead their patients face disciplinary action? Should CFS patients be treated with disdain?

Answering those questions might lead them away from certain areas of research.
 

snowathlete

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those statements are not the kind of things you say if you are serious about improving things, its designed to maintain the current situation, keep the issue being about "some patients" which of course implies it could be "any patients".

I feel myself being more skeptical by the minute, despite what I said earlier about waiting and seeing.
 

Esther12

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It doesn't look great to me, politically anyway. I could be wrong, but I'm increasingly learning that hoping for the best rarely works out with CFS research.

Also, all of these sorts of presentations should be made available on the internet, so that patients can have access to them.
 

Dolphin

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Also, all of these sorts of presentations should be made available on the internet, so that patients can have access to them.
A lot of the presentations look like they are studies that haven't been published yet. Presentations at conferences are one thing, but releasing such info generally can jeopardise getting published.
 

Firestormm

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Did you chaps catch this aspect of the news briefing from the conference?

Patients with chronic fatigue use additional areas of brain when using memory

I hadn't come across it before - other than recalling those card games being played inside an MRI scanner last year; but that was something else I think...

I meant in respect of the 'additional areas of the brain when using memory' aspect of the briefing. I wonder what research has discovered that and what it might mean. Sounds interesting.
 

alex3619

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To get rid of suspect practices, and people who spread them, requires widespread medical recognition that its nonscience or worse. Its unlikely to happen overnight. Most of the psychogenic literature fits several definitions for pseudoscience, pseudoscience practiced by doctors is often called quackery, so why is psychiatric psychogenic theory not considered quackery? That is at the heart of the matter. None of their hypotheses are either provable or have ever been proved so far as I am aware, going back to Charcot in the nineteenth century. Their research practices are antiquated by modern scientific standards, yet this is rarely questioned either (though that is starting to change). How is this entire field of psychogenic medicine not bringing the entire discipline and medicine into disrepute? I want to know, because its not rational.

Where progress is being made is when more modern practices and methods are used. If psychiatry moves more in that direction it will be a good thing.
 

Enid

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Yes agreed alex - not a simple "getting rid of" but with the wealth of research findings (pathologies) now realised it will be re-education (slow but sure hopefully).
 

maryb

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Predisposing factors include female sex, functional somatic syndromes, and prior mood disorders.

For
treatment purposes, important maintaining factors include comorbid mood disorders, beliefs about causation, and either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour).

They chose this for the press release - please read this carefully - what kind of research will come from people who believe this? They are no better than wolves in sheep's clothing - they are worried that the real scientists are going to drive ME forward and leave them behind so want to be in at the front, and people are falling for this?
Why do we need psychologists or psychologists even involved at this stage in ME research - or is it fatigue syndrome they want to research?
Now that sounds more like it, so can they all p**s off and get on with doing that. Leave the real scientists to help us ME patients.
 

lansbergen

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Did you chaps catch this aspect of the news briefing from the conference?

Patients with chronic fatigue use additional areas of brain when using memory

I hadn't come across it before - other than recalling those card games being played inside an MRI scanner last year; but that was something else I think...

I meant in respect of the 'additional areas of the brain when using memory' aspect of the briefing. I wonder what research has discovered that and what it might mean. Sounds interesting.
When the road is blocked one needs a detour. I would like to see what exactly they found.
 

Sean

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Anytime you see any claim or comment from the SMC (Science Media Centre), just substitute 'Simon Wessely' for SMC, and all will be clear.
 

Esther12

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A lot of the presentations look like they are studies that haven't been published yet. Presentations at conferences are one thing, but releasing such info generally can jeopardise getting published.
They could still be made available at a later date... but yeah, I understand that there are sometimes reasons for delaying the release of information (although my respect for the scientific conventions which require this has been steadily reducing).

I've just found that people's presentations/talks are often better at revealing what they think that their peer reviewed papers, and that there's a real tendency for people to misrepresent data. Releasing a public record of what was said could help shame them in to improving, or at least allow patients to make corrections (which would be ignored).

re memory stuff: I wonder if they used non-CFS fatigued controls, or if they're just finding the neurological abnormalities which occur in those who are feeling exhausted? Before I got ill, if I missed a nights sleep I would feel as if my mind were struggling too (especially by the afternoon) - presumably this would lead to changes which could be picked up in a brain scan. Neurological evidence that people with CFS feel more tired than healthy controls doesn't seem that exciting to me. (lol - possibly I'm in a anti-research mood today - somewhat understandable with CFS imo, but I shouldn't comment before looking at the study.)
 

Dolphin

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Predisposing factors include female sex, functional somatic syndromes, and prior mood disorders. For treatment purposes, important maintaining factors include comorbid mood disorders, beliefs about causation, and either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour
Here are some quick comments on this that I wrote quickly for a discussion elsewhere. I'm afraid I haven't referenced them:

Regarding pre-disposing factors: there may be the odd study (e.g. I can think of one involving Peter White) that found these. However, I think a very likely confounder is that some of the people were already ill but hadn't been diagnosed. Hence an increased likelihood of mood disorders (struggling with an undiagnosed illness, or the doctor mislabelling the symptoms as a mood disorder) and so-called functional somatic syndromes (which are very often co-morbid with ME and CFS).

By the way, "functional somatic syndromes" is not a term I'd be rushing to use. It is akin to medically unexplained symptoms/syndromes, generally used by psychiatrists to lump some conditions together where doctors like to blame the patient for not functioning well.

However, when one looks at the totality of the research on pre-disposing factors including the birth cohort studies, there have been lots of conflicting findings and little can be said with confidence except that being female is a risk factor.

---

In terms of "maintaining factors" mentioning "either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour)" is pretty much a case of "heads the healthcare professional wins, tails the patient loses" aka blame the patient. I'm not sure what the evidence there is that "pervasive inactivity" is that significant a problem. And at least a couple (and probably a few) studies show that patients' activity levels fluctuate no more than healthy controls. Also, what about the patients who are consistently doing too much; by not mentioning this group, it looks like one is buying into the deconditioning model. Not every patient may be at their very optimum level of activity but then that seems an unrealistic goal and could be due to all sorts of reason including not getting sufficient supports from family, society and the health professionals e.g. practical help, disability payments, disability aids, etc.

I'm not sure what evidence is being referred to regarding comorbid mood disorders except that, like with pretty much anybody in society, including people with other chronic illnesses, if you have a mood disorder, you can feel better if you get it treated.

Beliefs about causation is not a consistent one either. Also, this can be to do with CBT studies but results from the PACE Trial suggests improvements there relate more to how people answer questionnaires rather than objective improvements in functioning, employment, etc.

Also a confounding factor regarding beliefs about causation is likely that some people in some studies just have chronic fatigue that wouldn't be ME and so the question may select different people, some who may respond better to treatment than others.
 
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Given that most of the UK's biomedical researchers were there and backing this, I think we should give it a chance. The fMRI/memory work, and especially the muscle study sound very interesting, though obviously are yet to be published.

To me, Stephen Holgate's comment about the need to bring in new blood to the field - something he's said at every opportunity in the past too - indicates that he thinks CFS research in general in the UK has been heading in the wrong direction. And we know what direction that was. Biomedical research is really getting going in the States, and Australia, and I think things are beginning to happen here too. Though no doubt biopsychosocial research will continue in force here too.

Dolphin: I'm assuming that's a response to the SMC News briefing notes, rather than to the main press release?