Campaign on Conversion Disorder

[bonica]

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.

Take Care
















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[bonica]

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.

 

[bonica]

A Biological Substrate for Somatoform Disorders: Importance of Pathophysiology

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/cgi/content/full/69/9/850

 

[bonica]

From British Medical Journal: http://bestpractice.bmj.com/best-practice/monograph/989/basics/pathophysiology.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/10.1111/j.1440-1819.2007.01710.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.

 

[jornacam]

This is a good thread.
How do they find line btn what is organic and what is considered functional? This bothers me. This line could be moved many times in either direction by different medical persons according to thier leaning on the subject of CD.
As you said previously, CD can leave people terribly disabled, partly due to some medical folks dont recognise it and everything i read says for best outcomes the treatment needs to be done rapidly. Where to get appropriate treatment? access to the treatment? It is a very horrible place to find yourself in.

Regarding ESA, you have to be able to breathe to be found fit to work in some capacity. Nothing other than being on life support seems to satisfy the ATOS staff that you are unfit to work, but then again they are being paid to find people fit to work...a lot more than any losses on from fraud / mistakes.
The papers are full of stories of how much we scrounge from the tax payer and how everyone should do thier duty and shop everyone that they believe are fraudsters, its like all of a sudden the press are at the helm of a hate campaign. Not forgetting the loss of privacy allowing the goverment access to our credit files and spending patterns.
Very scary.

 

[bonica]

Hi jornacam. Thanks for your response & input, it's much appreciated.

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 our very detailed response to the "DWP Consultation-Harrington Scrutiny Committee" here: http://carerwatch.wordpress.com/esa/cw-evidence-to-harrington/

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.

It's worth reading the full response, & although you're obviously clued up on the issue, 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 to take part. Which I see you do
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.

Bonica

 

[jaidie82]

Hi Bonica,
I'm new to this site also and it was this post that I spotted on google that made me visit.
I am extremely interested in the campaign and I am interested on your views as to how to get this 'out there' so to speak. I would happily help in anyway I can as I also believe there is not enough being done with regards to CD.
My partner has it also (can read my thread for how it has affected him-jaidie82) and he is only on jobseekers allowance as we were lead to believe he is not entitled to DLA despite the fact I have to do most things for him such as get him his medication as he can't remember them, fill out forms, read letters and generally explain everything to him...sometimes twice. I can't leave the house for long periods of time as I am constantly concerned he may relapse as I have been told is likely to happen. I am not entitled to carers allowance as he is not on DLA.
I am concerned he is going to be made to go to work as he is only 31 and I truly think the strain of it may cause a regression. He can't even be in a room with more than 3 people without becoming fidgety, sweaty and stressed.
As it stands, and with the little knowledge we have about cd I can see people becoming worse if forced back into work.
I would like to say well done you, for trying to gain recognition of this illness and I really hope some good will come out of all this. Again, anything I can assist with, please let me know.
Jaidxxx

 

[bonica]

Hi Jaid.

Please send me a Private Message with your email address. I really feel for you & want to help in any way I can. I see you're in the UK so if you need to talk on the phone we can do that too. If you're happy to give me your details privately I'll reply via my email addy or phone & take it from there.

Take Care.

Bonica.

 

[Weemarie]

Hi Bonica,
I'm new to this site and I am glad I have found it. I am interested in the campaign and I am interested on your views. I would be happy to help in any way I can as I also believe there is not enough being done with regards to CD.

I cannot seem to accept that being in a wheelchair now due to balance & gait issues, 2 brain lesions and now slurred slow speech is all in my mind. I actually feel I am going out my mind thinking that people actually think that it is all in my head. I also feel if a neurologist can not explain what is wrong with someone then CD is the easy way out. Am I wrong in thinking this? I am now 50, wheelchairbound, have epsiode like symptoms each time something becoming worse, I have 3 children, Husband and I was a computer tutor but 3 years ago went to make a cup of tea and when I turned I thought my left leg was sticking to glue, I had lost complete power for 12 days and then it returned but there was something different about my walking and each time I took another episode it became worse, eventually I was walking slowly veering to left and had a wide gate, doctors felt it was safer for me to be in chair and I have been left in this chair. Now the same things are happening but it is my speaking that is being affected now. I also get very high blood pressure (e.g 216/126) during an attack that can either last 4 hours to 4 - 10 days. After every attack things are never the same. Sorry for going on but it is nice to get all this of my chest.
many thanks
Marie

 

[happydog64]

hello marie,
just to let you know, you are not alone, in the fact, that people think it all in head, If doctors can't fit you into a box eg ms, parkinson, they dont want to now, they just want you off their books, we are left to fend for ourselves. I was a young, fit, 47 year old married women, with two children, I worked full-time for most of my life, now I cant walk without using a stick, my legs dont work properly, I have to use a wheelchair outside, I sometimes have uncontrollable tremers, what is all that about!!!!!
keep positve they keep telling me, its bloody hard though. you take care lv happydog

 

[davalay]

Hi All,
Literally just this second joined the site and found this thread. Reading through this and many other stories of people with CD, I feel I may be one of the lucky ones as I am getting physiotherapy, support from GP and sessions with a Liaison psychiatrist. I've also been in touch with Jon Stone and checked out his neurosymptoms website which explains CD in a much more socially acceptable way than any i have come across before. Indeed, speaking with medical professionals here and in the States, there appears to be a conscensus that CD is outdated and so tied up with Freudian mistakes, it will soon be obsolete and a new set of criteria put in place. I am really keen to see some sort of co-ordinated support approach for people with CD as well as campaigning for better research, acknowledgment from medical professionals and benefits, etc. By the way, my Liaison Psychiatrist agrees with Jon Stone in that we shouldn't call it CD but Functional Neurological Disorder. Don't what thoughts people have on this or if it just muddies the water.

 

[bonica]

Thank you & Hello Jaid, Weemarie, Happydog64 & Davealay. Very much appreciate your input & passion to raise awareness. It's shameful that there's so little research & so few Neurologists etc trying to do something positive in this field, so it would be good to discuss ideas about what we can do individually & collectively to help change this & change attitudes within the medical profession.

Telax posted this link on another thread to Jon Stone's Neurosymptoms site: http://www.neurosymptoms.org/welcome/4533052089 & I think it suggests somewhere on the site to alert our GP's to this vital info. Printouts would be even better & distribute to Neuro Dept of local Hospitals as well. We could even attach personal CD circs, which much more often than not highlight the lack of care & concern by medical profs & is in direct contrast to their "duty of care" towards patients.
We could also email, as a group, all the CD specialists in UK voicing our concerns & difficulties etc, ask their support, ask them to fight harder for funding for more research & better & swifter access to treatment.
Would that be a good starting point?

Warm Regards to all.
Bonica

 

[davalay]

Hi All,
Jon Stone's site is a must for anyone with this disorder. I spoke with him a few days ago and said that all the leaflets and posters on the site are downloadable for free. My mum and I work closely alongside our local health board managers, mainly on carer and learning disability issues. Yesterday we emailed all the top people of our health board with Jon's site link and asked to take this further with them. A coordinated national campaign would be a tremendous undertaking but would give patients and carers alike a chance to'come out the closet'. Count me in for any action/info/networking we can come up with.

 

[bonica]

Hi davalay.
I love that you've spoken with Jon Stone. He's definately one of the good guys! I also phoned & spoke to him a few years ago when he was looking for people with CD as volunteers for some research he was doing. We couldn't get involved as we live in England so a daily commute was out of the question & we couldn't afford to go to Scotland & stay there for the duration.
I love even more that you & your Mum work with your local health board managers. You're clearly both very proactive. Carer & Disability issues are a priority in my book too & we have a real battle with this Coalition Govt to stop them undoing the good that's been done to date.

PS.
Great that you've already emailed the Health Board bods too!

 

[davalay]

Hi Bonica and everyone else interested.
I emailed Jon Stone and asked him to include a link to this forum on his neurosymptoms.org website which he has done today. I think our local MP will get involved if we decide to go ahead with a campaign. Also spoke to one of my consultants today and he knows all about how to overcome the physical effects of the disorder through physio, OT, etc. I am really lucky to live in a local authority with a specialist rehab unit for functional neurological problems and to have regular contact with a liaison psychiatrist. This makes living with CD so much easier and gives me a much more positive attitude to the disabling effects of the condition. While I am not improving at all, at least nowadays I no longer blame myself for my condition, which takes a lot of the self hatred and guilty feelings away.

 

[davalay]

Hi All,
Following on from my earlier post, I've just had an email from my local Primary Care Trust Manager. He is trying to arrange neurological retraining for local GPs about Functional Neurological Disorder and how to treat and recognise it.
Remember, if you think, what can I, one person do, to change anything, the news in these last two posts from me have simply been the result of two emails and are hopefully only the tip of the iceberg. If everyone sends just one email or changes just one doctor's mind about this disorder then that will hopefully cascade out to many others.

 

[bonica]

That's brilliant davalay & probably the best news ever posted on this forum. I hope everyone follows suit because as you said:

Remember, if you think, what can I, one person do, to change anything, the news in these last two posts from me have simply been the result of two emails and are hopefully only the tip of the iceberg. If everyone sends just one email or changes just one doctor's mind about this disorder then that will hopefully cascade out to many others.

 

[yellowted]

hi bonica, i would love to get involved, i have not been dxd as CD but as dissociative motor disorder (i think the only person in the world to be given this dx) but have found out it is one in the same thing! i strongly believe that CD,DMD and FND should be given one name which everyone recognises so people do not waste years of their life trying to find information on each one and so treatment can be unified across the country as presently there seems to be no rules about how to treat any of hese, CD seems better defined than DMD as no one in my area knows how to treat me or who to contact to find out!!! they have stumbled through to a point that their 'only option' is to put me in neuropsychiatric rehab to 'find out whats wrong with me' for up to 6 months! ok so they got there in the end, it only took 2 years and me pushing the whole time. all we are waiting on is funding then to see if i fit the criteria, and the then i will be put on the waiting list to go in so probably next year sometime i guess!

great site i have got lots of new info from here thankyou allxxx

 

[bonica]

Hi & welcome yellowted! Glad you found the forum & the much needed info. I'm suffering from exhaustion & a particularly bad flare-up of arthritis lately, so bear with me if I'm not very articulate today. I've read yours & davalays recent posts & will do my best to respond.

The great majority of people with CD/FND/DMD will continue to get a raw deal, so it's really up to us to become informed campaigners & raise awareness as well as instigate better treatment, easier access to aids, home adaptations, benefits & care packages. This is hard enough for those with accepted disabilities. When it's thought to be "all in the mind" & trauma related, it's much tougher all round. Then we've got the Coalition preparing to stampede disability with their policies to cut welfare & reduce DLA recipients by 20%! I don't say this to put anyone off, but simply to re-iterate the importance of being proactive.

I think the reason no-one knows how to treat this disorder is because no-one knows anywhere near enough about it, very little research is being done, too many in the medical profession cling to Freud's oudated & unproven theories hence so many of us are fobbed off as patients who will recover in a few weeks. For those who don't recover or recover briefly then relapse or whose symptoms endure but fluctuate etc, again an old theory abounds that more tests are pointless, encourage sufferers to remain symptomatic & are a waste of NHS money & time!

The DWP's own rules on DLA stipulates that illnesses classified as psychosomatic & manifest in physical disabilities should be treated as actual physical disabilities. That's not word for word btw so I'll find my PDF on this & copy & paste it here.
Maybe seperate threads pertaining to various types of info & patients rights etc would be a good idea. These could be made into stickies for easy access.

Re; Neuropsychiatric rehab. This doesn't have to be on an in-patient basis. I'm sure this can also be done as an out-patient.

 

[davalay]

Hey Bonica, sorry you're not well, wondered why I hadn't heard from you. You saw we got a Sticky! Mischief was great at putting it up. I've now said all we need is a name change to FND and we are laughing!
Like Bonica says yellowted, I think neuropsychiatry can be on an outpatient basis, however I did spend 3 months in neuro rehab to get me able to move more freely; overcome the incontinence; understand the long term effects, etc. then started on an outpatient basis both physio and psychiatric. the psychiatric side is to see closure on the childhood abuse problems, but mainly to help me live easier with a long term, chronic condition (and I think my consultant has an interest in FND so she is using me as a research study although she has never said this). The physio is to make sure I continue to use the correct exercises after a crash and to show me new ones if I do manage to improve more physically between crashes - although as they are now happening every three weeks I am not really having the time to improve before another hits.
As to the question, is it a long term condition then, again as Bonica says, if you've had it for two years then I think you're stuck with it for a long time. I am now into my sixth year (third where I have been severly disabled). However, I only started therapy last summer so maybe, while it won't go away, I will be able to manage the symptoms much easier. Don't let anyone fob you off with, 'if we get the psychological stuff sorted you'll be miraculously cured'. Trust me, it won't happen. I asked my psychiatrist straight out a couple of weeks ago, is this a cure we are trying to get, and she said no, there isn't a cure, we are just trying to make it easier for you to understand the symptoms. I am of the opinion that the dissociation suffered as a result of this disorder is one of the symptoms not a precurser to it. Sorry I can't be more optimistic yellowted. Whether its worth losing your house over - I know the most important thing for me is to pay my mortgage everymonth. I waited 45 years for my dream home and I don't want anything to take it away from me. If it isn't as important to you, then give it a go. you could always go for 4 weeks and if it isn't helping (you'll know by then if the medical staff are any good at their jobs) then don't stay.