We need committees!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

We need committees!

Postby BooBear » Sat Jun 12, 2010 3:32 am

So, I have time to think after my second cup of coffee.

Guys, I really think we need to organize. We do a really good job of communicating with each other (and a lot of us to the Canadian media!!), but I think that if we were to organize the right way, we could put all our collective energy toward accelerating what we need to happen.

We need people contacting the regulatory bodies in their respective countries (including provinces and states, as applicable). We need people looking at new angles and organizing communications and responses (I like Fogdweller's suggestion to contact the insurance companies on another thread). We need people putting together local, regional and national fundraisers so that we can directly fund the programs that the MS Society ignored.

I think we have an incredible amount of drive and energy on this board- I think we just need to get a little more "put together" so that we can drive all the energy in the same direction.

A good analogy is the use of a garden hose. If you have your nozzle set to the fine spray setting (where the water is diffused), you will get things wet. But when you set it to the strongest setting, you concentrate the stream of water and can really douse things fast.

I'd like us to focus on becoming a power washer. :)
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Postby mangio » Sat Jun 12, 2010 7:01 am

BooBear,
Excellent plan. How can we get started?
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Postby foreignlesion » Sat Jun 12, 2010 10:48 am

I was actually thinking the same thing yesterday.

Many of us have already contacted everyone we can think of. IR's Ultrasound techs, MPS, Health Canada, MPs, MLAs.........

I'm thinking it's time to go viral!

Mass e-mails sent to everyone, every day. Bombard the system with e-mails, letters, telephone calls....get everyone we know to do the same.

Our voices aren't being heard save for the few who have bought it forward, and they don't seem to be getting very far very quickly either. It's time to SCREAM.

Let's light a fire that can't be ignored! Bombard the system! Get annoying.

MS consumes my daily life. I'm reminded of it with every step I take and everything I do.

Let's let them know how we feel. Remind them every day. Let's show them how annoying and stressful this life can really be. Let's make them have no choice but to listen, because they won't get anything else done unless they do!

I imagine seeing 10's of 1000's of letters, e-mails and telephone calls swamping the offices of those who truly have the power to make the decisions that affect our life.
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Postby blossom » Sat Jun 12, 2010 11:39 am

boobear, get out the powerwasher. even an old war horse like myself is willing to be a drop of water that all adds up to makeing the stream more powerful. a lot of us aren't able to do what we really want to do because of our disabilities. learning about ccsvi has been one hell of a rollercoaster ride. from first-real hope-then the resistance that is unreal-trying to find doctors-trying to convince them-then they get shut down-you name it. in the meantime i as many have gotten worse. sometimes i feel like throwing in the towel but then the idea that this is "real hope" and the "RESISTANCE" is so uncalled for and "WRONG". to me of course no. 1 is trying to get help that could possibly improve the miserable disease ms. but, also, for me anyway, this whole resistance to ccsvi is so damn "WRONG" and we all know it. so, commander, lead the way, when you are ready to charge, give the command, and together we can "RIGHT THIS WRONG"!!
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Organization

Postby Montana » Sat Jun 12, 2010 11:44 am

BooBear, Mangio, and foreignlesion,

Indeed, it takes organization to make things happen. TIMS is great for support, communication and getting the word out fast, but for action, education and influence we need a fully organized official non-profit.

Thanks to the efforts of those who have donated hundreds (probably thousands) of volunteer hours, The CCSVI ALLIANCE will soon be able to do that. I've been following their progress for about 5 months and want to tell you that without budget or bickering, they are quietly building a strong collaborative base of professionals and patients across the U.S.

I am jaw-dropping impressed with what the ALLIANCE has done in a short time with phones, faxes, and a few amazing committed CCSVIers. I don't think it will be long before you (and the rest of the world) will be able to see for yourselves some of the results of their hard work.

It will be the tip of the iceberg of what can be done, however, if we all get behind them and support them with our dollars, talents, and good words.
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Postby 1eye » Sat Jun 12, 2010 11:45 am

A fire that can be seen around the world. I wonder if the Gulf of Mexico will be on fire soon.

I think the idea of going viral is a good one. But the message is mixed, and coming from a lot of different places. Where can someone go, what can be done to create a common site for all MSers to get the latest news, what they as CCSVI victims should be doing right now, so we can all get our information from a common, reliable source, and all do the same thing at once?
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Postby foreignlesion » Sat Jun 12, 2010 12:08 pm

If I had the time or energy, what I really wanted to come up with is a rant that stresses the urgency that many of us feel day to day, something quick, witty, emotional and powerful. Something that would resonate with people and stick in their mind.

I'm working on finding the time and energy, but working full time and trying to run a household is not easy in my current state. I have a lot of great ideas and thought, just having trouble finding the energy to put them all together.
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data/survey

Postby 1eye » Sat Jun 12, 2010 12:36 pm

The other thing that is needed is a database. Doctor Zamboni wants to create one, I expect for physicians to report their Liberation results on. The other thing needed would be a database of the same, but for patient-reported results. Each patient could update their own page, similarly to what is done for the NARCOMS database, only OPEN for anyone to read, once they have posted their results. Reporting cases should be given a number or passcode by the last person to treat them for CCSVI. This should allow them to create, modify, or delete their corresponding self-reported data. If at any point they wish to make their results public (recommended), they should be able to do so by a click of their mouse. They should (using their number or passcode) still be able to add their own data to thhe public record, change it or delete it, but only by creating a new revision, and leaving the previous data record intact. A new space for the reason for the change would need to be filled (from a suggested list?).

I propose (and I am aware of the tracking thread) that the basic questionnaire be along these lines:

CCSVI Liberated Patient Survey

Today's Date:
Date of Liberation:
Name:
Address:
Phone Number:
E-mail:

Before Liberation EDSS (if known):
After Liberation EDSS(if known):

Most improved symptom
(your own words or technical term):
------------------------------------------------------------------------
Rate improvement:
(1-2 = barely better,
3-4 = noticeably better,
5-6 = quite a bit better,
7-8 = not much of a problem
9-10 not present)

Still comes and goes (y,n):

% time gone away (multiples of 10):



Second Most improved symptom
(your own words or technical term):
------------------------------------------------------------------------
Rate improvement:
(1-2 = barely better,
3-4 = noticeably better,
5-6 = quite a bit better,
7-8 = not much of a problem
9-10 not present)

Still comes and goes (y,n):

% time gone away (multiples of 10):



Third Most improved symptom
(your own words or technical term):
------------------------------------------------------------------------
Rate improvement:
(1-2 = barely better,
3-4 = noticeably better,
5-6 = quite a bit better,
7-8 = not much of a problem
9-10 not present)

Still comes and goes (y,n):

% time gone away (multiples of 10):



Any symptoms worse? Describe using as many or few words desired:

[space]

If you are changing, adding to, or removing an existing record,
please choose from the suggested reasons. If none of them fit,
describe the reason in as few words as possible.

[Changing existing data (add, delete, modify)? [y or n]
[reason suggestion list]

[space]

[SUBMIT]
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby foreignlesion » Sat Jun 12, 2010 1:11 pm

Sadly, an MS database already exists in Canada. It would be easy for them to slightly modify this database to track those of us already liberated, they just don't seem to be interested.

The lack of follow up with liberated patients is truely disgraceful. All this call for research dollars and time when all they'd have to do is use the resources already at their disposal and the hundreds of test subjects that already exist.

I know all of the research they are starting very shortly is extremely important, but why does it have to be a step by step process? Why can't there be many levels of research conducted simultaneously? Taking theses tiny steps is going to take many years and that is unfortunately not a luxary shared by many of us who continue to progress.
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Postby 1eye » Sat Jun 12, 2010 2:01 pm

I was expecting it would be done in a very professional, secure, private, and reliable database, by someone everybody could reach, like the aforementioned CCSVI alliance. I certainly don't think anyone should reinvent any wheels. I don't think a modification of an MS Society database is a good idea.

People have to get their minds around what they need. They don't need any more treatments for their 'MS' until they get their CCSVI fixed. A lot of people may have CCSVI who are blood relatives of pwCCSVI, and they are going to want to get fixed too. A little well placed oxygen heals a multitude of hurts. These people will want to get into the database too.

Treat CCSVI, permanently. MS drugs are every three months! Or every week! Or every second day! Or every day!

Stay on your meds if you want to, but get your CCSVI fixed!

Liberate yourself!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby foreignlesion » Sat Jun 12, 2010 2:16 pm

The problem with a database that exists outside the medical community is it will be considered purely anecdotal and will not be taken seriously. It also exists outside the realm of patient confidentiality, can not be all inclusive as it is purely voluntary and lacks any merit for serious research.

There is enough of this existing already throughout the various forums, including this one, that I think building upon that or developping a better all encompassing form thereof would be a lot of time and energy spent on something that will, in the grand scheme, do very little for furthering the advancement of acceptance.

It would make for a great read though.
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Postby mangio » Sat Jun 12, 2010 2:23 pm

The Italian doctors, neurologists, scientists, surgeons,
patients, media, and volunteers are the CCSVI heros.

They created this miracle of hope for all that suffer with ms
globally.

No matter how much this expands now and to what corners
of the globe, the honor will always be for Dr Schelling's
30 years of science and the Italian pioneers.
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Postby blossom » Sat Jun 12, 2010 2:44 pm

i am 150 per cent behind CCSVI ALLIANCE. can't wait until it is really up and running. i know i appreciate their efforts as many others do. i feel they will need on going support and i hope people don't forget that. i think it is also good that others post their ideas too. we are all getting antsie and with good reason. but, i don't want to do something counter productive either. if it helps to get the ball rolling in anyway i'll help what i can. by the way, i have a couple witty catchy slogans that i'm sure would get attention but in good taste (but is the truth) they could not be used.
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Postby 1eye » Sat Jun 12, 2010 4:20 pm

I believe there needs to be a database that exists outside the medical community. Security and privacy are a concern, and credibility as well. I suggest the CCSVI alliance give every doctor known to have ever treated CCSVI with Liberation a set of numbers or passcodes equal to or greater than the number of patients treated. Each doctor would give one such number or passcode to each Liberatee. They use this number to create data records each time they have related work done. They are encouraged to enter new data every three months for 2 years after the procedure. Their personal info can only be linked to their record by somebody mis-using the passcodes. The rest of the database, initially, can be used to justify performing the treatment on every 'MS' patient. Result of operations: 90% of patients report improvement in 2 or more symptoms, after first 6 months, independent of disease 'type' (RR, SP, PP, CIS, whatever). That kind of thing would be very convincing.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby blossom » Sat Jun 12, 2010 5:05 pm

mangio, so true so true!!also, i hope dr. nado and dr.castellio get their day in the sunshine soon.
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