CCSVI dead - surely an apology needed from Cheerleader

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

CCSVI dead - surely an apology needed from Cheerleader

Postby bromley » Mon Nov 20, 2017 11:09 pm

no ifs, no buts.

CCSVI is dead and buried. It was fakery and bad science and promoted by Cheerleader.

MSers wasted time and money.

If it really worked (now around for 10 years) this site would have shut down as readers would have all experienced the claimed miracles.

Next time you aggressively promote a treatment - check the facts Cheerleader.


http://multiple-sclerosis-research.blog ... peace.html
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Tue Nov 21, 2017 5:32 am

hey broms :D at least you're not bitter ;)

not to say i'm in the market for ccsvi treatmemt, but with reference to your last drop in and response, think you may be out of luck!

Image
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby bromley » Tue Nov 21, 2017 6:14 am

Jimmy,

I just remember the site pre CCSVI. This was a treatment pushed by a small number of people who built up a head of steam. It became the Islamic State of MS treatments and non-believers were beheaded. Ten years on and CCSVI hasn't delivered. We are now in a new era on MS treatments which for relapsing disease can, for some, shut the disease down. These treatments come with risks, but have been properly trialled. CCSVI was the wild west, preying on the desperation of MSers.

I hope you are well.

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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Tue Nov 21, 2017 8:54 am

i know, me too. but things really have settled down in here, in comparison to say 5 yrs ago. it's more spammers than hostility at this point.
and, you don't have to hang out right in the ccsvi forum when you drop in ;)
let us know if anything you're aware of is missing from the various treatment forums.
i wouldn't know, of course. #highlyqualified :lol:
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby shadowfax » Tue Nov 21, 2017 9:15 am

Might as well include the anti-biotic nonsense in there as well............
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby ElliotB » Tue Nov 21, 2017 1:08 pm

Like ALL treatments/protocols available/know today, it works for some but not all which to me means a lot about it and all other treatments - BUT for someone in desperation mode who has exhausted all other options, I can understand why they would give it a try...
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby vesta » Tue Nov 21, 2017 2:19 pm

bromley wrote:no ifs, no buts.

CCSVI is dead and buried. It was fakery and bad science and promoted by Cheerleader.

MSers wasted time and money.

If it really worked (now around for 10 years) this site would have shut down as readers would have all experienced the claimed miracles.

Next time you aggressively promote a treatment - check the facts Cheerleader.


http://multiple-sclerosis-research.blog ... peace.html


Ah, aren’t we licking our collective chops.

Sorry, all that has been determined is that PTA isn’t the best solution to CCSVI - poor blood/CSF circulation through the central nervous system.

Jimmylegs, you yourself said that a Vitamin B12 deficiency damaged your spine to suggest MS. You probably don’t have a « fluid mechanic » problem which for me means you don’t have CCSVI MS. Your nutrition advice is welcome, but of limited help for someone with a fluid mechanic problem.

Consider my response to THX 1138 on Nov 13, 2017.


« Greetings:

The symptoms you have mentioned – muscle cramps/spasms on waking, symptoms worse the longer you sleep, head stuffiness, and heat sensitivity – point to stagnant, obstructed blood/CSF circulation in the head/brain. (Dr Flanagan pointed out that if the brain is usually cooler than the body it’s because of the cooling effect of fluid circulations. Stagnant fluids cause the brain to heat up which exacerbates injury to the tissue and MS symptoms.)

Apparently my morning TENS self treatment (5’) or upper back massage (1’) has been enough to release blood circulation. (Dr. Owiesy’s idea that when the middle smooth muscle layer of the brain’s draining veins go into spasm, blood flow is cut off, makes perfect sense to me since a brief massage is enough to release the spasm.) Swimming brings total relief. Try it and note the difference in mood, well being.

Consider consulting my site for a fuller discussion.  www.mscureenigmas.net/

Best regards, Vesta »


Now, in my opinion diet/supplements might help, but they won’t correct that problem, he needs to find a way to get the fluids circulating better. MDs don’t necessarily have the answer.

Cheerleader has done outstanding work informing us about the fluid circulation, vascular connection in MS. (See her blog.) I hope she doesn’t stop.

Bromley, you need to apologize to cheerleader for being such a Stalinist.

Best regards, Vesta
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Tue Nov 21, 2017 4:38 pm

thx has intractable low serum magnesium. something atypical going on there for sure.

as usual, you can find links to cheer's nutritional recommendations for CCSVI here chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html

and as stated last time this came up, pursuit of health deserves equal attention alongside disease management, whatever form that takes. nobody claims that nutrition is the be all and end all, but ignoring the fundamental building blocks of the body in favour of, rather than in conjunction with other options, is just downright irresponsible.

there are many routes TiMS members can travel to find the treatment that works for them.

meanwhile, the pursuit of optimal nutrition is possibly the most unifying option available to those of us with ms, with or without ccsvi, to those with something else altogether, and to those without a diagnosis at all. period. hostility does no-one any good.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby Zyklon » Tue Nov 21, 2017 5:31 pm

I am with ElliotB. I think everybody is free to believe whatever they want. One can believe others experience, one clinical trials. I also respect people trying everything including stupid things.

I go to gym 3 days a week. I can say "omg gym cured my ms!!!" and somebody will try the same and booooom relapse. Sharing experience and giving medical advice are two different things. Unless it is clinically proven, I prefer to warn people about my experiences. Supporters ignore that and CCSVI sounds highly commercial.

I don't believe CCSVI for MS because of latest trials but I understand people willing to spend money and try it.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby zen2010 » Wed Nov 22, 2017 11:05 am

bromley wrote:no ifs, no buts.

CCSVI is dead and buried. It was fakery and bad science and promoted by Cheerleader.

MSers wasted time and money.

If it really worked (now around for 10 years) this site would have shut down as readers would have all experienced the claimed miracles.

Next time you aggressively promote a treatment - check the facts Cheerleader.


http://multiple-sclerosis-research.blog ... peace.html


I strongly believe Bromley fell in love with Cheerleader.

That's classic: Hating her (constantly) is just a way to hide his feelings


That's kind of touching
Thks Brom for bringing some sweet feelings to this place
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby 1eye » Wed Nov 22, 2017 2:56 pm

CCSVI is not dead: rumors of its execution have been greatly exaggerated. It has always been an acronym for a kind of venous insufficiency, which has never been proven to be a cause of MS. That is the least earth-shattering news I can think of. CCSVI is still a problem many people have, and if you have it, you probably have other circulatory problems. If you don't believe in it, it will probably not bother you, so relax :-)

Here's a question for you: PTA was found ineffective for treating MS. Can it treat CCSVI?

An additional conclusion, that CCSVI can not cause MS, was, unfortunately, not proven by the Brave Dreams trial. Some people may need to know. Perhaps there is a need to raise some funds to finance a trial to prove CCSVI can not cause MS. If that is done, they'll get my donation.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby 1eye » Wed Nov 22, 2017 3:28 pm

Stop calling me surely!
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Wed Nov 22, 2017 4:23 pm

you can't prove hypotheses. you can disprove null hypotheses ;)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby cheerleader » Thu Dec 07, 2017 9:56 am

Oh, dear Bromley. Did you read the full JAMA paper, or simply the editorial comments? Here is the complete paper.
https://jamanetwork.com/journals/jamane ... omment-tab

The delayed effect of venous PTA 6 months after the procedure on the magnetic resonance biomarker suggests a possibility that PTA may produce benefit for a subgroup of patients with MS. This should be further analyzed and investigated.


I wrote a post about the paper here: http://ccsviinms.blogspot.com/2017/11/e ... tment.html

Over half of the patients had benefit in repaired cerebral blood flow and no new lesions. Sadly, only 54% of people treated had lasting repair to blood flow. The rest restenosed. My husband Jeff was a responder to the treatment and part of this group with long lasting results. In fact, he's had no new lesions, a reversal of gray matter atrophy, no MS progression, remyelination of lesions and can jog, ski and work full days again. There will be further research as to how and why some people have responded. There are theories that those who can remain physically active maintain better shear stress and endothelial cell health. Jeff's improved venous flow and MS reversal has been documented on MRI and MRV.

I apologize to you, Bromley, for my prior f you comment, for making you feel that I ruined your beloved MS forum, for bringing information of the vascular connection onto this board and for my exuberance. I truly wish you nothing but the best. Am trying to be a better human online, like Cece and Jimmylegs :)
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby CureIous » Fri Dec 08, 2017 11:39 am

Apology, thats funny. PTA cannot possibly work on all/most/some patients, because the narrowings change in both intensity and location on a daily/weekly/monthly basis. Just cannot get it through all those thick heads out there who claim some level of scientific expertise. PTA today and back tomorrow with the whackamole.

Stents unfortunately were one of the few if only ways to prove the science behind repairing venous flow vs. symptoms.

I still have no heat fatigue in this hot clime some 8 years after, but thats probably just confirmation bias right? Thats without the shots too.

Zamboni said it cant be so oh well, default to the "experts".
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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