Tuesday, 21 June 2011

Multiple sclerosis

In a puzzling world



One of my conductor correspondents faces a tricky problem, one that I know many conductors have shared in a whole variety of contexts (and not just conductors, of course). How can she speak out for a cause that she believes to be of great human benefit, without harming her career? The particular focus of her present concern is CCSVI – chronic cerebropinal venous insufficiency – and a surgical intervention to relieve this for people with multiples sclerosis. She writes –


MS patients think that neurologists do not allow it in many countries because they won't make the money they earn now from medicines and steroids, that MS patients take every day for many years before dying. CCSVI shows a lot more development in their condition than medicines and it is a routine intervention, with far fewer side-effects medicines have.Still, neurologist won't allow this in many countries, including Hungary. I find it outrageous, to be honest, but we conductors have to cooperate with neurologists and perhaps it is not lucky if I express this opinion before hedging my career.


I am no rehabilitionist and have only the most glancing personal experience of MS. I have therefore no grounds for any opinion at all about this specific treatment, but as an ordinary citizen I have views on some of the issues that this matters raises.

We are up against the question of' evidence here. For CCSVI it is early days and evidence remains equivocal (as in the case of Conductive Education).  The MS Society of the UK, however, offers an open-minded view of how seriously CSVI is now being considered around the world (rather more so than in the case of Conductive Eduction):



So where does this leave the punter, somebody whose life is being overturned by this condition and is most reasonably trying to find out what might be done to make things better. How to decide what to do? How to chose between options? Whose opinion and advice to follow? Let us not be deceived into believing that there can ever be universal black-and white guidelines for people who have to make such choices.

If it were me in that position I would be very keen to avoid wasting my hope and my money taking snake oil, and that any treatment that I might follow should have demonstrable value. And I should be very aware of my own vulnerability to the attractions of charlatans, be they well-meaning or cynical. I would also think of the endemic fraud that besets medical research, of some of the methodological issues  involved in 'trials', and of the fundamental question that any invividual must have about the nomothetic vs  he ideographic: what about me? I might even have to think of the cost. But all such matters taken into consideration, I might still not know how to decide.

Inevitably I would want to know what others in a similar position have experienced – and let nobody dare then speak condescendingly to me about 'anecdotal evidence'. Among other things this is potentially to disparage my own experience of my own life should I wish to share it.  I should strike back vigorously at such impudence and would not be a patient patient. No doubt I should probably come across others just as forceful in their own peculiar ways and about their own particular concerns. I hope that I should have the courage and the energy to make common cause.


Somewhere along the line, for better of for worse, I should have to make up my mind, on whatever basis I can. The same, I guess, goes for many rehabitationists, with respect to whatever condition they are involved with or whatever intervention that are considering. Make your choice, act on it, and be prepared to modify your position on the basis of practical experience (a principled flexibility that should be well familiar to people in Conductive Education). And band together in common cause.


Meanwhile in its own specific sphere, the CCSVI Alliance offers much of the sort of information that I would like if I should need it – others please note:


Networking


My correspondent recalls hearing no mention of CCSVI during her own (recent) conductor-training in Budapest, What, she wonders, happens in other counties? Have conductors working ourtside Hungary had experience of CCSVI through their clients? What can they tell of its apparent results, advantages, disadvantages, before-and-after symptoms, etc? I am pleased to relay her request for information,


Meanwhile, she tells me, Hungarians with MS feel free to speak out. She points me to a couple of sites that are frankly beyond me linguistically, though many who read these pages will have no such problem:

http://ccsvi.blog.hu/2011/06/10/tudomany_es_uzlet

A soul in the machine

Of course, glaringly obvious examples aside, deciding how to chose for the best, this intervention or that, either as citizen or rehabilitationalist, admits to no exact answers. There has to be art as well as science in such decision-making, a human 'judgement call' rather than mere box-ticking that a machine could do.  One has to to work on one's judgement.  I suspect that the machine will resist this.

I would typify my correspondent's problem as that of a soul caught in a machine. She is right that fighting against it may bring nothing but pain to herself while achieving little for the benefit of those whom she would serve.

I think of butterflies and wheels, suggesting that I may be the last person to advise what best to do to achieve change.

4 comments:

  1. CCSVI is an illness that is treated by balloon angioplasty or stent.

    What I have not been able to discover, by reading your links and others, is whether this treatment is controversial only for patients with MS and CCSVI or for all patients with CCSVI. The problem faced by neurologists is probably that there is too little published data on the efficiency and safety of the treatment for CCSVI and the one study that is available is a study with MS patients.

    Another trial, financed by the MS Society of Canada and the National MS Society (USA, researches the efficiency of the treatment for CCSVI in patients with MS. It only began in 2010 and will be carried out over two years. There are no results yet that could convince neurologists that this treatment is safe for patients with or without MS.

    On this website:

    http://ccsvi.org/index.php/advanced-topics/treatment-and-efficacy
    I read:

    “The only currently published data on CCSVI treatment efficacy comes from Dr. Zamboni’s original open label pilot study, which focused first on treatment safety and second on impact to MS symptoms and progression.”

    I am not surprised that doctors do not recommend a treatment that has not yet been proven to be safe. I wonder whether at the present stage of the research if the argument has anything to do with MS and the medicines that MS patients otherwise take but is rather about the safety of the treatment.

    As it is not yet known whether CCSVI is linked in anyway to MS surely if both illnesses are present in one patient then surely both illnesses should be treated. Patients with MS often are willing to try anything and everything to releave their symptoms, but should they be treated with a method that has yet to go through sufficient trials?

    I am hoping that there is someone out there who is better informed than I am on this treatment for CCSVI and its relevance for patients with MS.

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  2. Facebook discussion thread on this:

    http://www.facebook.com/profile.php?id=1835370377

    In Hungarian.

    ReplyDelete
  3. Speaking out is very important. the vascular origin of MS was picked up 170 years before by Charcot. The last one was Schelling in 1980. No one pushed their research beacuse it was not good for Big Pharma. But today there is the internet. Patients MUST push new theories wit hthe help of the internet, beacuse it is their best interest. And it is important: we patients, do NOT want treatment right now. We DO WANT research.
    And please note: there is something suspicious when someone does NOT want research. Research is good for everyone: Good for the supporters and for naysayers, as well... in case they want the TRUTH...

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  4. I was treated a year ago as secondary progressive MS patient.........I did not have any fear that it would not be safe.....angioplasty is long used for heart díseases.........I have been enjoying several improvements for one year...........

    katalin

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