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Campaign on Conversion Disorder.

Postby roselight » Wed Aug 25, 2010 2:17 pm

Hi Everyone.
I'm trying to get a campaign underway in the hope of it benefitting people with CD in the UK but can't do it without your willingness & help. I posted about it on the mental health forum here:
http://www.mentalhealthforum.net/forum/ ... n-Disorder

[quote]Hello Everyone.
I'm new to this forum but recognise some of you from Psychforums although I haven't been there for a while. I'm "bonica" here & "roselight" on Psychforum. My son has CD.

Please bear with me while I explain what is happening & how it relates to Conversion Disorder.

You'll all be aware of the plans for Welfare Reform under the last Gov't & the proposed welfare cuts under the Coalition, which seeks to save billions at the expense of disabled people & carers.
I belong to a group who've been campaigning for a good while against those cuts. The support for our campaign has steadily grown & includes politicians, NHSCA (NHS Consultants Association,) Anne Begg: Chair of Work & Pensions Select Committee, Carers UK, PRTC (Princess Royal Trust for Carers) etc.

You can see the list of supporters here & we expect more:
http://carerwatch.com/emergency/

The cuts will affect CD sufferers on DLA &, if applicable, their carers & any support from Social Services. etc.

That's only a part of why I'm here posting this. I've only recently told the group that my son has CD & my concerns that when he's called in for a medical for Employment Support Allowance he'll be put, as many thousands have been unfairly, into the Working Related Age Group which is subject to conditions & sanctions rather than the much more appropriate Support Group.
My colleagues at Carer Watch hadn't heard of CD before & are now concerned at the difficulties faced by CD sufferers, the lack of recognition & dismissal of symptoms because; "it's all in the mind" etc.
They asked if I'd like a seperate thread set up for CD so that we could build up a campaign to fight for recognition of the seriousness of it, proper support & medical care etc.

So that's why I'm here. To get your thoughts on this.
It would take time naturally & we are pushed for that with the present campaigns, but I think it's an excellent offer. We could gather our thoughts & ideas together in the meantime.

Please let me know if you're interested & I'll post a link to the CD thread set up on CarerWatch.
[/quote]

I'll paste my other posts here as well.

Regards.

Roselight
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Re: Campaign on Conversion Disorder.

Postby roselight » Wed Aug 25, 2010 2:22 pm

2.

[quote] Research on CD:
Conversion disorder is characterized by neurological signs and symptoms related to an underlying psychological issue. Amygdala activity to affective stimuli is well characterized in healthy volunteers with greater amygdala activity to both negative and positive stimuli relative to neutral stimuli, and greater activity to negative relative to positive stimuli. We investigated the relationship between conversion disorder and affect by assessing amygdala activity to affective stimuli. We conducted a functional magnetic resonance imaging study using a block design incidental affective task with fearful, happy and neutral face stimuli and compared valence contrasts between 16 patients with conversion disorder and 16 age- and gender-matched healthy volunteers. The patients with conversion disorder had positive movements such as tremor, dystonia or gait abnormalities. We also assessed functional connectivity between the amygdala and regions associated with motor preparation. A group by affect valence interaction was observed. Post hoc analyses revealed that whereas healthy volunteers had greater right amygdala activity to fearful versus neutral compared with happy versus neutral as expected, there were no valence differences in patients with conversion disorder. There were no group differences observed. The time course analysis also revealed greater right amygdala activity in patients with conversion disorder for happy stimuli (t 2.96, P 0.006) (with a trend for fearful stimuli, t 1.81, P 0.08) compared with healthy volunteers, with a pattern suggestive of impaired amygdala habituation even when controlling for depressive and anxiety symptoms. Using psychophysiological interaction analysis, patients with conversion disorder had greater functional connectivity between the right amygdala and the right supplementary motor area during both fearful versus neutral, and happy versus neutral stimuli compared with healthy volunteers. These results were confirmed with Granger Causality Modelling analysis indicating a directional influence from the right amygdala to the right supplementary motor area to happy stimuli (P < 0.05) with a similar trend observed to fearful stimuli (P 0.07). Our data provide a potential neural mechanism that may explain why psychological or physiological stressors can trigger or exacerbate conversion disorder symptoms in some patients. Greater functional connectivity of limbic regions influencing motor preparatory regions during states of arousal may underlie the pathophysiology of motor conversion symptoms.[/quote]

Psychological or organic or both? The line is becoming ever more blurred & Freud's "hysteria" theory should be largely dismissed. Especially in cases where CD becomes a permanent disability.
I've always thought that CD lasting longer than a brief period of time must be pathphysiological. Research in the 21st century is proving it to be so. Much more research is needed in order to work towards a possible cure. Naturally it requires funding as well as Med professionals pushing for that funding. Maybe that could be part of the campaign because way too many Neuro's & Psych's still hold fast to the old, outdated theory that it's all in the mind. This attitude won't change without a push in the right direction & that has to come from people with CD and/or affected by it. No-one else will do it for us.

[quote] From American Journal of Neuropsychiatry:

A growing body of neuroimaging studies is beginning to propose possible biological explanations for hysteria. The mapping of the brain in conversion disorder has implications for the conscious experience of self and the disruption of selfhood in dissociative identity disorder and schizophrenia.44 Performing larger studies that control for comorbidities such as depression,1 incorporating broader deficits (e.g., blindness), imaging limbic brain areas (e.g., the insula and amygdala), using novel techniques such as MEG,22 and studying patients at different phases of their illness1 are all necessary in order to develop a more detailed understanding of this biology./quote]
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Re: Campaign on Conversion Disorder.

Postby roselight » Wed Aug 25, 2010 2:28 pm

[b]A Biological Substrate for Somatoform Disorders: Importance of Pathophysiology[/b]

[quote] INTRODUCTION

At the heart of every clinical interchange is the doctor’s attempt to reconcile the patient’s subjective complaints with the objective findings, a 2 x 2 table, so to speak (Table 1). Medicine is typically most comfortable when these two areas are in agreement. When—for instance—objective findings and subjective complaints are present, one recognizes an "ideal disease." Similarly, when neither objective findings nor subjective complaints are present, one happily recognizes "no disease." Unfortunately, it is not uncommon for disparities between findings and complaints. The bulk of this paper will discuss the situation where objective findings are absent but subjective complaints are present. This situation may be viewed either as "undiagnosed disease" or alternatively as "somatoform disorder."

CONCLUSION

Although medicine’s goal is always to allay suffering, there is no one universal remedy other than courtesy and respect and kindness. Specific remedies may be applied only when an accurate diagnosis has been made. Somatoform disorders are among the hardest disorders to diagnose and thus to treat. This paper suggests two rather different conclusions. First, somatoform disorder may be misdiagnosed due to complex factors that lead to underrecognition of another underlying disorder other than somatoform disorder. Second, one must study the underlying physiology of symptoms in somatoform disorder in terms of the cognitive processes involved in recognition of symptoms and the complex physiology of distress, increasingly recognized as immune in nature, which augments nonspecific symptoms.
Full article here: http://www.psychosomaticmedicine.org.../full/69/9/850[/quote]
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Re: Campaign on Conversion Disorder.

Postby roselight » Wed Aug 25, 2010 2:32 pm

[quote]From British Medical Journal: http://bestpractice.bmj.com/best-pra...hysiology.html

Pathophysiology

Conversion disorderThe mechanism of symptom production is unconscious and largely thought to involve dissociation.[B Evidence] However, other psychological, social, and iatrogenic factors can perpetuate symptoms.

The mechanism is not fully established, but functional neuroimaging studies suggest there is disruption in neural circuits linking volition, movement, and perception.[C Evidence]

Patients with dissociation also have disruption of the hypothalamic-pituitary-adrenal axis, which may result from chronic stress.[B Evidence]

Somatisation

May arise from generalised sensory amplifications of bodily symptoms involving the insula. [19]

Somatic amplification may occur when previously sensitised brain cytokine systems are reactivated by infectious or non-infectious trauma.[C Evidence]

Cytokines acting on the brain are likely to be involved in a variety of sickness behaviours. [20] Chronic activation of the immune system in response to stress may sensitise the cytokine response.
A study on serum levels in stress related CD: http://onlinelibrary.wiley.com/doi/1...7.01710.x/full

It has been considered that in the neurobiology of CD and depression common points exist. It is suggested that serum BDNF levels can be considered as a biological marker for stress-related psychiatric disorders. The aim of the present study was to investigate serum BDNF levels in CD compared to depression, to determine whether stress-related CD has decreased BDNF serum concentrations, similar to other stress-related disorders.
[/quote]
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Re: Campaign on Conversion Disorder.

Postby roselight » Wed Aug 25, 2010 2:38 pm

Re; The sham that is ESA & ATOS Origin medicals: The major charities failed us by supporting conditionality & sanctions in ESA in their discussions with the last Governmenton on Welfare Reform. They are afraid to bite the Govt 'hand that feeds.'
Carer Watch allied with Benefits & Work when DLA was threatened & rallied 25.000 people to protest to their charities & to Govt & reminded the charities that they'd let us down on ESA.
DLA was saved then but now it's under threat again by the Coalition, so that campaign continues alongside the ESA battle.
Despite the charities let down of their service users, the furore over DLA woke them up a little & they appear to be campaigning a little harder this year as a result. Although aware of their failings, we prefer to keep them on side & inflence their thinking because they're the ones meeting & debating with Govt officials. As Carer Watch grows, so do our chances of being at those meetings.
The difference with CW is that no-one is in charge. No-one says it's got to be this way or that. We debate everything & re-write ideas till there's agreement. Only then do we send something out.
This is part of our very detailed response to the "DWP Consultation-Harrington Scrutiny Committee" here: http://carerwatch.wordpress.com/esa/...to-harrington/

[quote]There is especially a great deal of concern about the Work Capability Assessment (WCA) and we will discuss the details of this test with you at length. The second part of the representation will concern the ESA itself, and the distribution of claimants into the work-related activity group and the support group following the WCA.

The most worrying aspect of the WCA, and consequent distribution between the ESA groups, is that the ‘health professionals’ who conduct these assessments are not necessarily medically qualified as doctors, but could include a number of professionals with nursing qualifications. The Incapacity Benefit caseload who will all have to undergo WCA, includes a number of people who are severely ill or disabled. These disabilities may well be hidden, ranging from those diagnosed with cancer to sufferers of ME and specific mental health problems. Such people may experience different symptoms from day-to-day, and on a case-by-case basis. These people cannot be deemed fit for work by anyone except their own doctors and consultants, or another expert in their particular illness.[/quote]

It's worth reading the full response, & this site of a friend of ours is also well worth a visit: http://www.whywaitforever.com/dwpatos.html

Re; Conversion Disorder:
From what I can gather, UK research is well behind the USA, Canada & Turkey. Dr Jon Stone was doing some research a few years ago & I phoned him about it but you had to live in Scotland.
The lines will keep moving as long as research is lacking. That's why a campaign to educate people on CD is so important. We have to do something because no-one else will. The medical profession, Social Workers, the DWP, all need educating on CD & who better than us to do that? We live with it & some have lived with it for years. My son has had CD for 10yrs. It took 7yrs for them to diagnose it. Despite my insistence that something was terribly wrong & they should give him an MRI etc, they were insistent that it was due to his learning difficulties. To them, I was a troublesome & over-protective mother. I was the "Accused" & it was deemed that I wanted to find something wrong with my son. A Neurologist asked; "What will you do if we find nothing wrong with your son? How will you feel?" My GP, who I'd hassled for this referral had asked the exact same question, so my heckles rose & I berated him for the obvious recital of her notes rather than listening to my son & me. He didn't deny it.

So that's the sort of crap, as we all know, that most of us face. If we had cancer, heart disease, or wanted a sex-change for crying out loud, we'd get treatment on the NHS! But dare to suffer from CD & at worst you'll be treated like a pariah that's faking it for primary & secondary gain....huh??? what gain???....& dismissed & at best, you'll get some CBT, Anti-Depressants & Counselling then told to get on with it.
Precious few in the UK get individualised, multi-team approach ongoing care, be that as an out-patient or in-patient for re-habilitation, physio, hypnotherapy etc.

These are the primary battles before we get to even thinking about a cure. Hence I hope there'll be some response towards the Carer Watch offer of a CD campaign. We have lots of contacts & all we need to get started is for people to register their interest here.
If there's enough interest, then we get started on posting our concerns re; DLA, IB, ESA & ATOS medicals; ie, what our fears are, if you've had the ATOS medical how did it go, what support you get, if any, what support you'd like, have you had problems getting DLA etc etc.
We need to raise awareness by sharing our experiences in a pro-active way & this is an opportunity to do so. From that awareness we can formulate letters that can be sent from Carer Watch to the appropriate organisations to get the ball rolling.
Please everyone, let me know what you think & how you feel about this. As I said in my first post, the thread is set up already but without feedback from you guys it can't begin to grow into anything worthwhile.

Regards to all.

Roselight
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Re: Campaign on Conversion Disorder.

Postby BART JALOWSKI » Mon Sep 20, 2010 12:38 am

roselight wrote:2.

Research on CD:
Conversion disorder is characterized by neurological signs and symptoms related to an underlying psychological issue. Amygdala activity to affective stimuli is well characterized in healthy volunteers with greater amygdala activity to both negative and positive stimuli relative to neutral stimuli, and greater activity to negative relative to positive stimuli. We investigated the relationship between conversion disorder and affect by assessing amygdala activity to affective stimuli. We conducted a functional magnetic resonance imaging study using a block design incidental affective task with fearful, happy and neutral face stimuli and compared valence contrasts between 16 patients with conversion disorder and 16 age- and gender-matched healthy volunteers. The patients with conversion disorder had positive movements such as tremor, dystonia or gait abnormalities. We also assessed functional connectivity between the amygdala and regions associated with motor preparation. A group by affect valence interaction was observed. Post hoc analyses revealed that whereas healthy volunteers had greater right amygdala activity to fearful versus neutral compared with happy versus neutral as expected, there were no valence differences in patients with conversion disorder. There were no group differences observed. The time course analysis also revealed greater right amygdala activity in patients with conversion disorder for happy stimuli (t 2.96, P 0.006) (with a trend for fearful stimuli, t 1.81, P 0.08) compared with healthy volunteers, with a pattern suggestive of impaired amygdala habituation even when controlling for depressive and anxiety symptoms. Using psychophysiological interaction analysis, patients with conversion disorder had greater functional connectivity between the right amygdala and the right supplementary motor area during both fearful versus neutral, and happy versus neutral stimuli compared with healthy volunteers. These results were confirmed with Granger Causality Modelling analysis indicating a directional influence from the right amygdala to the right supplementary motor area to happy stimuli (P < 0.05) with a similar trend observed to fearful stimuli (P 0.07). Our data provide a potential neural mechanism that may explain why psychological or physiological stressors can trigger or exacerbate conversion disorder symptoms in some patients. Greater functional connectivity of limbic regions influencing motor preparatory regions during states of arousal may underlie the pathophysiology of motor conversion symptoms.


Psychological or organic or both? The line is becoming ever more blurred & Freud's "hysteria" theory should be largely dismissed. Especially in cases where CD becomes a permanent disability.
I've always thought that CD lasting longer than a brief period of time must be pathphysiological. Research in the 21st century is proving it to be so. Much more research is needed in order to work towards a possible cure. Naturally it requires funding as well as Med professionals pushing for that funding. Maybe that could be part of the campaign because way too many Neuro's & Psych's still hold fast to the old, outdated theory that it's all in the mind. This attitude won't change without a push in the right direction & that has to come from people with CD and/or affected by it. No-one else will do it for us.

From American Journal of Neuropsychiatry:

A growing body of neuroimaging studies is beginning to propose possible biological explanations for hysteria. The mapping of the brain in conversion disorder has implications for the conscious experience of self and the disruption of selfhood in dissociative identity disorder and schizophrenia.44 Performing larger studies that control for comorbidities such as depression,1 incorporating broader deficits (e.g., blindness), imaging limbic brain areas (e.g., the insula and amygdala), using novel techniques such as MEG,22 and studying patients at different phases of their illness1 are all necessary in order to develop a more detailed understanding of this biology./quote]
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Re: Campaign on Conversion Disorder.

Postby waterhole » Tue Nov 02, 2010 5:35 pm

Excellent Just excellent post Roselight, suffering this damned CD I know its definately more than the 'just in my head' freudian crackpot theory ive had permanent dystonia problems breathing difficulty headaches and seizures for ten hellish years and i know the science needs advancing my god it does....its a disorder that by its very anachronistic theory precludes efforts to understand it 'catch 22' at last the medical community are starting to attempt truly understanding this hellish condition rather than the obviously crack pot cop out of a theory "its all in the subconscious"
God i feel lucky due to fortunate circumstances that i survived when my CD suddenly broke my system down and the years i spent not knowing what was wrong, if i hadnt been on welfare to recover i would be dead now because i couldnt cope and still struggle with permanent symptoms, im so fortunate to be in a country that helped me or i would have suicided im sure in retrospect. Hopefuly awareness and good science will prevent lots of other people from the shame and suffering and ignorance when this thing strikes people down. Take care Rose good work.
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Re: Campaign on Conversion Disorder.

Postby roselight » Thu Jan 13, 2011 5:06 pm

Hi Waterhole & thank you.
I sent you a PM but it's still sitting in my outbox, so I'm hoping you're ok & will visit the forum again.

Roselight.
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