urgency schmurgency

Do you sometimes get the feeling you're standing about and just waiting for... something, anything that isn't scheduled to happen at some impossible to reach, future date?

http://www.medicalnewstoday.com/articles/264892.php

Absolutely the Chinese doing it years ago must be frowned on, but roughly 10yrs down the line we're (western medicine) happy to give it a go! Obviously it will take at the very least another 10 years before the treatment reaches patients. 
It's nice to know that MS researchers have grasped that sense of urgency we feel every day. I understand there are checks and balances to new approaches but please, let's get a wriggle on.

stand firm

We've enough things come charging at us full tilt that we don't need to feel like our caregivers through their actions, are doing the same.


These two cases aren't necessarily related except they appeared on my news horizon close-ish together.

This is a slightly edited reply I gave to a young woman from East Anglia who, in the last few months decided to take herself off disease modifying therapies (she was diagnosed less than a year ago.

"Is there a legal issue here? you're over 18, right? you're a grown up and they can't force you to take something if you don't want to. 
It's worth not pissing people off so show you're trying to behave like a responsible adult and would like to look at all the available trial data. Ask if they could please show you or point you in the right direction to see some compelling proof for taking these drugs. 
Ask if the doctors wouldn't mind treating your prescribing situation like a court of law - please could they provide as close to incontrovertible proof of the benefits of breaking your skin?

Behave like a grown up and keep reasonable. 
Don't get heated and start accusing them of trying to hurt you cos they're not.

(MSfriends, with the best of intentions, can sometimes get a bit heated and lots of folk take it very personally, don't fall into that trap!)

Seems like you've been doing pretty well so far without any help from any of us!

The doctors are just doing their jobs (we don't need to go into conspiracy theories or question the kickbacks they may/may not receive from pharmacos; it just muddies the waters and gets people's backs up).

Remind them that they get to close the door on MS at the end of the working day but you have it 24/7 so you really don't want to make a hasty treatment decision, they can understand that, can't they?

Appeal to their logical, scientific, rational brains and reassure them they know an awful lot more than you but you're at the beginning of adulthood and want to do things properly (flattery may not get you everywhere but it helps avoid the closing of some doors).

Have a good rest of August and give us a shout when you're round this way.

Do you have someone to go in with you, are your folks able to get time off work/would you like someone as moral support?

I didn't myself but there were no DMTs available before my mid 20s. Not sure how rational I would have been a few years earlier.

I haven't asked, what sort of symptoms do you have?
x

The less than 20yr old woman replied that she was at present Asymptomatic.

I can't help but wonder if the person I replied to with this message is a ringer of some sort?
I could be utterly wrong and have just developed a judgmental, undiscerning hypercritical mind over the years!
in which case I wholeheartedly apologise.

meanwhile in non MS circles:

it took someone with cancer (twice) to point out that oncologists (and consultants generally, I chose to infer from the radio interview this morning) don't seem to look at the body holistically! In treating his prostate cancer and subsequent throat cancer he's been left from the agressive radiotherapy with a collander where his body should be.

Consultants/experts get to close the door on the patient at the end of their working day but the patient deals with the condition and gets no let up.

addition one day after posting:
after just catching up with a couple of wheelchair Kamikaze's posts I need to remember how good it felt being non-judgmental (after a short mindfulness/meditation course) and just rein it in a bit.

people and things seem to help more than ever gets acknowledged.

Apologies for not coming up with a more snappy title!
the bold and italicized text is a quote I noticed on my travels through Cambridge University/Addenbrookes Hospital Neuroscience department whose sentiments I wholeheartedly agree with but speaking as a patient, have rarely seen on my travels through UK NHS Healthcare.

"Many of the most significant and interesting challenges of the modern world require boundary-crossing collaborations"
Alison Richard, Vice Chancellor at Cambridge Neuroscience, University of Cambridge

I guess she's referring to research but as one the eventual potential recipients of this research, to be honest, it makes me want to cry how little collaboration there appears to be in the process of caring for people in the face of the unknown/unacknowledged.

" These medical professionals know all to well about the vascular connection in “MS”. Dr. Fox/Cleveland Clinic had his own autopsy presentation (valvular malformation or so) at ECTRIMS back in 2010/2011 pretending he discovered some new stuff. I can’t remember exactly the year and I didn’t save this neuro junk science either. Nevertheless they are not to shy to recruit/kill more people with “MS” by treating a fantasy disease to make as much $$$ until the Multi-Billion$-“MS”-bubble is bursting! Btw., I’m pretty sure, meanwhile the neuroland majority is informed about the content of Dr. Schelling’s book, which doesn’t mean they understand it."
please contact me if you'd like the details of where I found this quote and reproduced it (removing identifiers as I didn't seek permission).


Dr Franz Schelling is the most interesting contributor to this conference (speaking as a layperson) and not just because his research, started in the 70s. He initially looked at hydrocephalus in children which soon took in other neurodegenerative conditions including MS. Paolo Zamboni talked extensively with him before releasing the Liberation Procedure onto the world.
But the other reason I think Dr Schelling's interesting is because we've chatted on Facebook. 
Social networking's an incredibly democratising technology which, again speaking as a patient, I believe could be such a force for good in medicine. 
I've also been lucky enough to have digitally engaged with Michael Arata an interventional radiologist on the west coast of the US who told me why the double blind placebo controlled gold standard of clinical trials didn't really suit MS. He is of the opinion that the vagus nerve gets a nudge during angioplasty and hypothesizes that the reported far from universally, good effects of Liberation treatments have an effect on the parasympathetic nervous system for this reason. I think I've quoted our Facebook conversation elsewhere on this blog. I don't believe that neurologists can deal with MS on their own. This would appear to be a very good place to go to get a handle of who's who in the list of medical professionals who are investigating a vascular hypothesis that explains symptoms patients are presenting with or developing rather than the condition from which they nominally suffer.


Ben Goldacre is very good at drawing attention to the plight of drug companies who, to protect their profits sometimes lose unfavourable studies that don't reinforce the worth of buying into their products at the various stages in a drug's development.

In the process of  so beautifully shining the light of publicity onto this practice we can see, at the very edge of that circle of light lies the great work of Sir Iain Chalmers who was part of developing the Cochrane meta analyses of published studies and Ibelieve was also instrumental in developing the James Lind Alliance which I joined a couple of years ago and was fortunate enough to take part in one of their priority setting partnerships earlier this year, hosted by the MS Society at the other Edgware road in London 

People seem to be so unwilling to say where they got help from or whose idea it was in the first place... so these are the folk who first came up with the idea of getting patients and clinicians together round a table.

Chi Kung is a process of very small movements that I have found calms the mind.
http://homepage.ntlworld.com/mike.tabrett/id29.htm

A Feldenkrais practitioner who I found online after hearing the treatment's name at my local MS Therapy Centre, Valerie Fabre, very luckily lives even closer to me than Addenbrookes Hospital. She is more of the opinion of http://www.normandoidge.com/normandoidge.com/MAIN.html who holds that the brain is imminently plastic and malleable and with the right neural reminders set in place an increasingly immobile body might become a little less so. 
it could all be pie in the sky but I find it easier to work with than hearing "your brain is shrinking at quite a rate and you can't do a thing about it"
I'm grateful this neurologist, who is a thoroughly nice bloke, discharged me a few years ago.