Caution-Red Flag: ANGER in the MS community

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

Caution-Red Flag: ANGER in the MS community

Postby Montana » Tue Dec 22, 2009 10:34 am

Dear TIMS members:

Yesterday I did a search for media news on CCSVI and very quickly picked up these two when I googled NBC and CBS.

The first refers to MS patient "Anger" and CCSVI:
<shortened url>

The second refers to the "battle" between ms patients and practioners:
http://www.huffingtonpost.com/erika-mil ... 96448.html

I am bringing this language to the attention of TIMS because I am hopeful the prevailing winds in both the medical community and the news media will begin to blow strongly in the direction of optimism and positive anticipation for people with MS. I want to see the public cheering for our efforts. Unfortunately, if we are represented as angry fighters doing battle with the powers that be...instead of level headed, well-informed, and articulate spokespersons seeking to create an environment that will support research and intervention for CCSVI sufferers...we will hurt our cause.

I am grateful for the education I have received from many of you in a few short weeks on TIMS. I would like you to know that I located this community on CNN.com...so, please take note that everything we say is being read by a much larger world.

Many of us have encountered difficult obstacles in the health care system as we seek to educate and enlist the help of our health care practioners. Let us not, however, let that spill over onto this forum or any contact we might have with journalists or the medical community. Let's keep our eye on the prize and become a community of inspired activists seeking to enlighten the future of MS.

Barbara
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Postby ozarkcanoer » Tue Dec 22, 2009 10:43 am

Montana,

I agree with you 100%. That is why I was very alarmed at Ashton Embry's recent essay that pitted "us" vs "those who live off MS". I believe he is a wonderful and well-meaning human being, and he did connect cheerleader with Avis Favaro, but what does it gain us to be angry at individual human beings whom we do not even know, i.e. clinicians and researchers ?

CCSVI must be promoted positively. This is not a war. This is our health.

ozarkcanoer
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Stay calm and we will PREVAIL.

Postby Badger » Tue Dec 22, 2009 10:59 am

8)

I echo the thoughts on this forum and there is optimism in the MS community which has been missing for so long :D .
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Postby CureIous » Tue Dec 22, 2009 11:18 am

Anger is only a sin when misdirected. While the expected characterizations obviously don't come with important distinctions (some of us ARE angry, but using it as a call to action), "angry" in these contexts of the media always come across as "Wildly flailing hissy fits", or "mob mentality".

Hopefully in the future, these media people, content with hit$ will parse their words more carefully before garnering support for their particular POV. While I'm thankful for the exposure for the cause, I wish the "reporting" (which opinion pieces are NOT), i.e. old fashioned journalism, dead in it's own rite, would resurrect itself. That's not going to happen of course, but dare to dream I say.

Oceans get "angry" and move entire fleets of ships. Nobody chastises the seas! They just try to maneuver in and around them. It's the sea that sets the tone though... Lead, follow, or get out of the way.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Changing MS medical opinion will be slow

Postby MarkW » Tue Dec 22, 2009 2:08 pm

I completely agree with you Montana/Barbara. Getting angry is a waste of energy which is in limited supply for many pwMS. I was nearly ready to stop posting on this site after some of the provactive posts. I will stay a little longer thanks to your post.

MarkW
(MRPharmS = RPh in USA. One of the bad guys from Pharma Industry)
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby skydog » Tue Dec 22, 2009 4:24 pm

MW, I was feeling the same. In any battle both sides still loose. Please! Keep it positive and peaceful Folks. Win over the negative with a abundance of positive, Mark
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Postby tazma » Tue Dec 22, 2009 4:41 pm

The truth was that some people were angry at the reaction from NMSS and a valid point to report.

No, we shouldn't remain blinded by anger because then we'd never move forward. But, a little fire in the belly gets the blood flowing :) and gives you the energy for the long haul.

Certain causes in history, womens rights, AID's awareness, etc. started with a certain level of anger.

I agree that a healthy debate is more productive when everyone uses basic manners. I find the MS community very level headed and well-informed on this subject and trust that it will continue.
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Postby markus77 » Tue Dec 22, 2009 5:17 pm

tazma is being realistic, its human nature to get angry. its an emotional reaction. once we have vented and had our little temper tantrims we can think more clearly and start focusing on the real issues at hand......

Stay Real My Friends

SPMS, DX 1989
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Postby Johnson » Tue Dec 22, 2009 5:41 pm

Yeah, anger... It raises blood pressure, adrenaline and cortisol levels, clouds already clouded minds - and not just of those of us with MS. I have always preferred contempt to anger. It's much more effective when an egoist is involved. Anger just makes both sides want to win the fight.

I have decided to write to the GP who refused me any diagnostics, let alone treatment, and to tell him that I feel that he was derelict to his Hippocratic Oath when he dismissed me with no interest, nor attempt in mitigating my suffering. I will also inform him that I have no further time to waste on his incurious ilk, nor his indolence. He will probably be completely unmoved, but for me, it gives me much more power (and pleasure) than fire-bombing his clinic, or slashing his tyres ever could. Further, I can't be imprisoned for writing a snooty letter. Grin. I will CC the letter to the BC College of Physicians and Surgeons as well.

I have decided to keep my appointment with the MS Clinic neuro in February too, and will treat with him with the same frame of mind. You cannot influence people by frothing, threatening, or otherwise being abusive. I have rarely taken no for an answer in my life, and usually get my way by being imaginative and innovative. When I am stuck in a box, I think my way out. I think that shaking the tree is much better than burning it.

/blah blah
My name is not really Johnson. MSed up since 1993
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Postby tazma » Tue Dec 22, 2009 6:06 pm

Thank you, markus77...

I think my tantrim's almost complete, but I'd have to double check...wait.

CSSVI is on the move and research will start soon. Still more work to be done, but all is well.
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Postby CureIous » Wed Dec 23, 2009 8:43 am

tazma wrote:Thank you, markus77...

I think my tantrim's almost complete, but I'd have to double check...wait.

CSSVI is on the move and research will start soon. Still more work to be done, but all is well.


And so far, there's about 15 different definitions of what "Angry" is. Gotta love English, 1 word covers every possible incarnation, with nary a thought of context.

Btw, those two original "news articles" are just glorified blogs. They aren't CBS or NBC articles characterizing us, they are blogs with a fancy name. They are one person's view of things, and what THEY view as the "common perception".

Mark, gonna go pound the table a couple more times ;)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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