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

Sidereal

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And the article he wrote for The Conversation:
https://theconversation.com/inflammation-depression-link-is-not-to-be-sneezed-at-18212

Wait, that sounds familiar...

Hence my concern about specificity.
Boilerplate. As I said last year on the thread about last year's conference, this whole psychoneuroimmunology field is a bit of a cargo cult immunology. People have been studying IFN-alpha / hep C for many years now as a model for sickness behaviour. This stuff has been known since the 1990s. British psychiatry late to the party as usual. It is a totally non-specific thing that's not going to bring you any closer to understanding why one person develops these symptoms in the context of chronic infection or autoimmune disease or depression or ME etc. As you say, it lacks specificity. What bothers me even more than the lack of specificity is this entrenched belief in the field, held with almost delusional conviction, that it is psychological stress driving these immune alterations and so we're back to postulating various ad hoc brain mechanisms and experimenting on patients with psych drugs.

Thank goodness we have Lipkin and Hornig looking at a far more plausible driver of this mess - the gut.
 

Large Donner

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Im sorry but this from Neil Harrison is just F*****G B******T..

Joint hypermobility is also linked to a number of psychosomatic disorders including Irritable Bowel Syndrome(4), Chronic Fatigue Syndrome (5) and fibromyalgia.
FFS He acknowledges that someone has joint hyper mobility which could obviously explain their fibromyalgia and then he claims that its linked to a "psychosomatic disorder" when he has already acknowledged the very organic thing that would cause specific tendor spots and all over pain.

Try being in physical discomfort and pain due to a physical difference and see if you don't get other ailments. Does he have no idea of the role of collagen in joint hyper mobility and what that indicates in the gut and joints and how that could affect tendons and muscles?

As for joint hypermobility being justification for calling CFS a psychosomatic disorder I don't know what kind of delusional reasoning that is.

Let me guess, the link to psychosomatic disorder in someone with joint hypermobility is him saying they are the same thing even though joint hypermobility is an organic condition in itself?
 

MeSci

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I think ill give it a miss, is it really bad?
Stone is nauseatingly patronising to the patient. ('There there, dear, no need to worry your pretty little head' sort of thing) The patient actually may have had a condition with which I am familiar, and often shows no abnormal test results, including MRI: hemiplegic migraine. There are also other conditions that cause temporary paralysis and may show no abnormal test results. They will often resolve on their own. That doesn't mean that they are psychosomatic, or that a psychiatric (or other) treatment has been responsible for the recovery, as with a high proportion of conditions.

I emailed the programme to express my extreme dissatisfaction with the way the presenter just accepted everything Stone and Carson said without asking for any evidence.
 

Valentijn

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The patient actually may have had a condition with which I am familiar, and often shows no abnormal test results, including MRI: hemiplegic migraine. There are also other conditions that cause temporary paralysis and may show no abnormal test results.
I had one of those, lasting about three weeks. My involuntary reflexes weren't normal on the affected side, and apparently my eyes weren't showing quite the normal range of movement. Of course, I had an intelligent and curious GP carefully examining me at the time, not a fossilized moron with biases regarding certain symptoms in certain patients :rolleyes:

That was followed by an examination by an intelligent and curious neurologist who'd gone to school with the GP (she described him as a "smart cookie" :D), and accordingly ran a lot of tests and found elevated homocysteine. Half an hour after taking folic acid as prescribed, the room spun wildly for 5 minutes, followed by a warm fuzzy feeling, and then the sensation in the right side of my body was back to normal.

It's amazing what doctors can accomplish if they're willing to put some thought and effort into it. And it's equally amazing the lengths that a few will go to in order to confirm their pre-existing biases.
 

Large Donner

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Stone is nauseatingly patronising to the patient. ('There there, dear, no need to worry your pretty little head' sort of thing) The patient actually may have had a condition with which I am familiar, and often shows no abnormal test results, including MRI: hemiplegic migraine. There are also other conditions that cause temporary paralysis and may show no abnormal test results. They will often resolve on their own. That doesn't mean that they are psychosomatic, or that a psychiatric (or other) treatment has been responsible for the recovery, as with a high proportion of conditions.

I emailed the programme to express my extreme dissatisfaction with the way the presenter just accepted everything Stone and Carson said without asking for any evidence.
I am glad you emailed the programme because those were my exact sentiments after I read the transcript of the show. Its just amazing how the BBC do this all the time, they fail at the first hurdle of journalism and science by never bringing in an opposing guest. The MUS meme is so obvious how any journalist cannot at least challenge it I don't know.

I like the bit were they claimed that docs were getting the diagnosis of functional disorder right because they where still calling it the same thing at a later follow up. That's it then its conclusive, talk crap once talk crap twice, its science.

How is this different form the practice of witch doctoring.

Such flawed logic such poor reasoning is at the best a "working theory" not a proven scientific single condition.
 

Sasha

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On MEA FB, in relation to Mark Edwards's new grant:

Charles Shepherd said:
I agree with Jonathan's very positive response to this new MRC funded neuroimaging research involving post-exertional malaise that was announced at the RC conference in Newcastle on Tuesday evening. I'm afraid that I am only just back from Newcastle and must spend the morning catching up with a huge pile of emails etc. Having been at the meeting when this announcement was made, and the discussion that followed, I will comment on it later today.
 
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On MEA FB, in relation to Mark Edwards's new grant:
I was sitting with Charles at the talk...I have been trying to follow some of the 'good/bad' feedback on this thread, but still wrecked from Newcastle...still, I am trying to be positive re. 'functional' fears - and just saw this on Action for ME: the whole £600 000 is actually for three diff trials (2 of trials are functional, but not ME/CFS one - is what I have gleaned): https://twitter.com/actionforme/status/654934334584045568
 

Sasha

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I was sitting with Charles at the talk...I have been trying to follow some of the 'good/bad' feedback on this thread, but still wrecked from Newcastle...still, I am trying to be positive re. 'functional' fears - and just saw this on Action for ME: the whole £600 000 is actually for three diff trials (2 of trials are functional, but not ME/CFS one - is what I have gleaned): https://twitter.com/actionforme/status/654934334584045568
Thanks, Nasim - the twitter message links to this (my bolding):

AfME on FB said:
Important correction - On Tuesday, we published a story stating that Dr Mark Edwards had a £600,000 contribution from the Medical Research Council to the overall cost of his new M.E. research project.

Unfortunately we wrongly quoted from a lay abstract which does not accurately reflect the project.

“Describing the project is complicated as there are three projects contained within the grant, only one of which is about people with M.E./CFS,” says Dr Edwards.

“The other two projects relate to people with functional neurological symptoms (functional motor symptoms in one and non-epileptic attacks in the other). These are completely separate projects from the one relating to people with M.E./CFS.

“The treatment the abstract refers to is for people with functional motor symptoms where we are looking at aspects of brain function before and after physical rehabilitation – this has nothing to do with the M.E./CFS project. The total funding for the grant is spread across the three projects.”

We sincerely apologise for any confusion caused.

Our CEO Sonya Chowdhury will give further details about Dr Edward’s M.E. research project in her latest blog about the UK CFS/M.E. Collaborative Conference, published later on today.

You can also read a Russell Fleming's transcript of Dr Edward's presentation at the conference, https://t.co/j0YubvDssf
 

MeSci

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Moving away form the MRC issue and/or ME I have to say I simply don't go with reasoning like "its all we have right now" therefore it should be used regardless of the illness.
Absolutely. It's similar to the excuse used to bomb the hell out of a country because a government must be seen to be doing something. So often it is better to do nothing than to do the only something we can think of.
 
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Thanks, Nasim - the twitter message links to this (my bolding):
Thanks, Sasha, I couldn't get FB link to work so just pasted the tweet... I do wonder how much is actually going to PEM study now...

And would MRC really throw *more* money at functional ME nonsense?

I am not being naive, really - just trying to have hope.
 

Large Donner

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Having looked at alot of Edwards stuff online and the people he works with, much of it linked in this thread, I cant say that this AFME correction issue reassures me anymore about these people getting involved.

Its all well and good saying ......

The other two projects relate to people with functional neurological symptoms (functional motor symptoms in one and non-epileptic attacks in the other). These are completely separate projects from the one relating to people with M.E./CFS.
....but the notions of FMS and "non epileptic attacks" are so problematic in themselves that asking "experts" from that field to get involved in ME is just asking for trouble especially as it is now well established that those very people are on record calling "CFS" fibromyalgia and IBS psychogenic.

They qualify such statements by the use of one thing and one thing only, that is the notion "MUS".

If the total of 600k has been given by the MRC for three projects why give the ME project to the very people who use and publish on the claim that ME is a psychogenic disorder, "that MUS" are functional etc.

Why not give the ME portion of the money to another group altogether. If you are looking for medically unexplained symptoms you will only find medically unexplained symptoms especially if thats your area of "expertise".

Lets be honest the very reason such people are in their field is for their track record on finding nothing organic that's what the whole bloody thing relies on otherwise they don't have a niche.

The fact we are being told they are going to be looking PEM is not that reassuring as it is the defining trait of ME the thing that is the trump card against the psychs "chronic fatigue condition that can be cured with CBT and GET".

If they decide its "medically unexplained" despite all the tests like TTT and two day cardio testing we are in trouble.

Just why would they fund this "functional .....psychogenic" group to do the crucial mainstream PEM groundwork studies. There must be so many better groups who could use this money to do a PEM study who dont have a proven record in claims about functional and psychogenic disorders.

"What shall we spend money on to find organic understanding of a physical illness? Ah how about people who specialise in finding nothing and at the same time we will fund them in two other studies on their specialist area of finding nothing."

I am not filled with confidence.
 
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Yet the one piece of information we have about Mark Edwards's views on categorisation is that he says that the term MUS should never be used?
 

Large Donner

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Yet the one piece of information we have about Mark Edwards's views on categorisation is that he says that the term MUS should never be used?
Yes because people who use such terms have switched to "functional" just as they switched from hysteria to neuroanaesthesia to psychogenic to MUS then functional.

Although because of the interent they are easily caught out slipping up using such terms interchangeably just as Mark Edwards was in the link to his paper on functional disorders with the word psychogenic in brackets in the paper i link some 10 posts ago.

Look at their own articles on why they use "functional" now or are pushing the use of it over other terms. Its aimed at "not getting into debates about organic verses psychological and "finding a term that suits the patient and the doctor". Such reinvention of the same memes is the basic premise of Jon Stones writings, who Edwards cites as being influential to him.

Mostly these narratives are aimed as top down politically driven situations and Jon Stone, who Edwards has said had/has a major influence on him is an expert in that.

A ploy basically.
 

A.B.

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Psychobabblers know their psychological theories of disease causation are unpopular and therefore try very hard to make them sound sciencey and not psychological. One can recognize psychobabblers from their treatment recommendation of psychotherapy and their belief that this will cure physical symptoms (the old Freudian idea lives on).
 
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Dolphin

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This paper by collaborators of Mark Edwards explains how the term functional was chosen i.e. basically one could fool more patients with it
BMJ. 2002 Dec 21; 325(7378): 1449–1450.

PMCID: PMC139034
What should we say to patients with symptoms unexplained by disease? The “number needed to offend”
Jon Stone, research fellow in neurology,a Wojtek Wojcik, medical student,a Daniel Durrance, medical student,a Alan Carson, consultant neuropsychiatrist,b Steff Lewis, medical statistician,a Lesley MacKenzie, sister in neurology outpatients,a Charles P Warlow, professor of medical neurology,a and Michael Sharpe, reader in psychological medicineb
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC139034/

BMJ rapid responses here: http://www.bmj.com/content/325/7378/1449/rapid-responses
 

Cheshire

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Or this one, where they justify their choice of the term "functional"

Mov Disord. 2014 Jun;29(7):849-52. doi: 10.1002/mds.25562. Epub 2013 Jul 10.
From psychogenic movement disorder to functional movement disorder: it's time to change the name.
Edwards MJ1, Stone J, Lang AE.
Author information
Abstract

Successive attempts at rebranding may be behind at least some of the proliferation of terms we have at our disposal when describing patients with what are now most often referred to as "psychogenic," "conversion," or "somatoform" symptoms. The most popular term in the movement disorder literature, "psychogenic," provides the aetiology of the disorder within the name, indicating that the symptoms are "born of the mind." Here we argue that it is logical to stop using a term that defines the disorder with regard to a poorly defined aetiology that is not supported by current evidence, and, instead, to use a broad term-functional-not as a "polite eponym" but as a term that is freer from such assumptions and does not reinforce dualistic thinking. The main argument for change is not political or even practical, but scientific.

© 2013 International Parkinson and Movement Disorder Society.

http://www.ncbi.nlm.nih.gov/pubmed/23843209

But they keep calling functional movement disorder "psychogenic" in following papers. They are not clear at all...