Apology needed from Cheerleader and Cece

[bromley]

Pre-CCSVI this site had a good vibe. There was some good banter and some good friendships were started (I met 3 TIMS members in the flesh). Then, like the so-called Islamic State, a vile wave swept through. The zealots made big claims and beheaded those who dared to question the cure they were pushing. The site changed from a friendly bunch to something quite nasty. Old-timers like me headed to new pastures. Now the chickens have come home to roost. No doubt Cheerleader and Cece will claim that the research which puts a stake in the heart of the CCSVI is flawed:

https://www.mstrust.org.uk/news/news-ab ... -sclerosis

I would be grateful for an apology from Cheerleader and Cece who banged the drum for this unproven therapy. More concerning is that those who invested huge sums of money in this scam, may have missed out on therapies which have gone through proper trials and licensing.


I wish everyone well. There are some highly effective treatments for relapsing MS and more on the way. Fingers crossed that therapies for progressive MS are not far away.

[ElliotB]

"There are some highly effective treatments for relapsing MS"

And what are they???

[10yearsandstillkicken]

I for one vote that no apology is warranted. As if one poorly executed study is the death knell of anything is absurd. I have MS and had the procedure. I never assumed it a cure for MS and it wasn't. But it did improve my quality of life like no MS drug has even come close. Trolls will say it is placebo or some other drivel. Does it work for everyone, nope. Does any treatment work for everyone, nope. So that isn't the bellwether. Whether CCSVI is related to MS or not is to be determined. Whether CCSVI is bad for general health well being, seems beyond question yes. More study is helpful. Troll, not so much.

[Cece]

A good community is a valuable thing. I have met more than 3 TiMS members in the flesh! And it was wonderful to talk in person to the people I'd been talking to online. I hope the general forum gets restored to whatever you can make it be. I hope more positive CCSVI news comes in at ISNVD because this study, even though we had low expectations, is still disheartening. I am very personally grateful to Cheerleader for her role in putting things together back in 2009 and for her continued advocacy between then and now.

10years, thanks. It does seem like the 'death knell' for CCSVI keeps being asserted and yet it rightly continues to be researched. But Bromley is no troll. I googled his name because it is familiar but I couldn't place him. I found a thread with Wheelchair Kamikaze weighing in that Bromley's posts were highly informative and useful and that he shouldn't leave the site after some kick-up back in 2006, long before I got here. I value Marc's opinion on other people so Bromley is good by my accounts. He's probably right that the forum as a whole has gone through changes over the years. The internet itself has gone through changes! I think it's a kick to still be in touch with people I befriended here in 2010. And I like that we are still discussing CCSVI because I think there is still much to discuss.

[centenarian100]

"There are some highly effective treatments for relapsing MS"

And what are they???

HSCT, alemtuzumab, rituximab, ocrelizumab, ofatumumab, daclizumab, cyclophosphamide, novantrone, natalizumab

However, all have significant risk and no clear evidence in non-relapsing progressive multiple sclerosis. Also, none of these reverse long standing existing disability in multiple sclerosis, so it depends what is meant by "highly effective." They are highly effective in preventing relapses and new MRI lesions.

[centenarian100]

A good community is a valuable thing. I have met more than 3 TiMS members in the flesh! And it was wonderful to talk in person to the people I'd been talking to online. I hope the general forum gets restored to whatever you can make it be. I hope more positive CCSVI news comes in at ISNVD because this study, even though we had low expectations, is still disheartening. I am very personally grateful to Cheerleader for her role in putting things together back in 2009 and for her continued advocacy between then and now.

10years, thanks. It does seem like the 'death knell' for CCSVI keeps being asserted and yet it rightly continues to be researched. But Bromley is no troll. I googled his name because it is familiar but I couldn't place him. I found a thread with Wheelchair Kamikaze weighing in that Bromley's posts were highly informative and useful and that he shouldn't leave the site after some kick-up back in 2006, long before I got here. I value Marc's opinion on other people so Bromley is good by my accounts. He's probably right that the forum as a whole has gone through changes over the years. The internet itself has gone through changes! I think it's a kick to still be in touch with people I befriended here in 2010. And I like that we are still discussing CCSVI because I think there is still much to discuss.

I applaud you for the tactful response to such a harsh post.

[ElliotB]

"HSCT, alemtuzumab, rituximab, ocrelizumab, ofatumumab, daclizumab, cyclophosphamide, novantrone, natalizumab"

None of these are proven to work. I know we all really want them/something to really work. But...

[flipflopper]

I have not posted or visited the website much since 2012 because I started to doubt my diagnosis. A long chain of events followed that made me lose trust in the Canadian medical system (the issues I have encountered are not specific to Canada).

What I investigated was not CCSVI but a differential diagnosis to MS. It is something that should be eliminated in everyone prior to posing an MS diagnosis. this was not done in my case and from what I can see, it is not being looked at or properly ruled out in others. As most of you know, there are no tests that are diagnostic of MS - this includes MRI and lumbar puncture.

I will not comment on CCSVI because it is quite a controversial topic. Moreover, I stopped reading anything having to do with CCSVI in 2012 so I do not have the knowledge to comment on this situation. I do listen to the news and heard the negative results of the latest study.

What I want to say is how important it is for all of us to be respectful to each other, even if our opinion differs.

Based on my past and current experience with my own physicians and the times I have spent reading medical articles over the years, I believe it is more important than ever to have a critical mind.

Our medical system (this is not just the case in Canada) has many flaws and the research being done is not always perfect.

We all need to work together respectfully and have a critical mind.

I am not feeling good and I will probably not be able to post again for some time.

I will recommend this popular article to everyone who has not read it. The title is self-explanatory "Why Most Published Research Findings Are False". http://journals.plos.org/plosmedicine/a ... ed.0020124 . The author is a Professor of Medicine and of Health Research and Policy at Stanford University School of Medicine and a Professor of Statistics at Stanford University School of Humanities and Sciences.

[jimmylegs]

brommmm <3 glad you checked in. even if it is to sass ppl lol. i would say things have been quite civil on the forum for 5 years or so now. it was messy 2009-2011 for sure. actually i guess it was about the time you left that things settled down i am afraid i still go on about essential nutrients incessantly, so some things never change

[flipflopper]

I apologize to Bromley (I hope you are doing well) for changing the topic of the conversation a little bit. I simply hope that if CCSVI is found not to be the solution that some expected, we will still continue to critically evaluate medical information and medical research going forward.

[centenarian100]

"HSCT, alemtuzumab, rituximab, ocrelizumab, ofatumumab, daclizumab, cyclophosphamide, novantrone, natalizumab"

None of these are proven to work. I know we all really want them/something to really work. But...

What kind of proof would you accept? All of the treatments I mentioned have overwhelming evidence for the prevention of relapses, new T2 lesions, and Gad+ lesions in relapsing multiple sclerosis. They have all been proven in multiple randomized blinded trials.

for instance, below is the data from the AFFIRM trial for natalizumab (tysabri)



As you can see, the data are extremely convincing. For instance, gadolinium enhancing lesions were decreased by >90% compared to the placebo group. This was in MRI scans interpreted by blinded radiologists who never met the patients and did not know what drug they were on. This is an extremely high quality of data. Do you think it is all fraudulent?

The problem with tysabri is that 1) it does not have good evidence in progressive multiple sclerosis, 2) It carries significant risk, and 3) it does not treat long standing fixed disability or subjective multiple sclerosis symptoms (fatigue, pain, etc).

If you don't accept this as proof, then there is no proof of anything. This is the best proof we are ever going to get. This is class 1A evidence.

-cent

[centenarian100]

I will recommend this popular article to everyone who has not read it. The title is self-explanatory "Why Most Published Research Findings Are False". http://journals.plos.org/plosmedicine/a ... ed.0020124 .

great article

[MrSuccess]

I strongly disagree. CC&C and others have done a fantastic job of bringing all things CCSVI to the attention of
TIMS members. They are intelligent and well spoken people.

Read with interest Dr.T's report. No real surprises found. This jackass can barely hide his pre-determined opposition to Dr.Zamboni's discovery & theory. His backers [ Big Pharma ] couldn't
be happier.

MrSuccess welcomes all opinions on CCSVI and it's possible connection to MS. PRO and CON.

Once again ..... MrSuccess is on the record as supporting Dr.Zamboni's research. It makes sense.

Once again ..... MrSuccess reminds the gentle readers here at TIMS .... that Dr.Zamboni has not
offered any miracle cures to those affected with MS.
Once again ......MrSuccess reminds the gentle readers here at TIMS .... that Dr.Zamboni has warned
pwMS .... to avoid having stents placed . And other common sense precautions ....
including having the procedure done outside of clinical settings ..... thus avoiding
any charlatans out to make a profit. Good solid advice that has been ignored.


At this point , MrSuccess is calmly waiting for Dr.T's research results and methods to be reviewed
by those with the expertise to do so.

Good job CC and Ringleader.

Carry On ....


MrSuccess

[NHE]

HSCT, alemtuzumab, rituximab, ocrelizumab, ofatumumab, daclizumab, cyclophosphamide, novantrone, natalizumab

However, all have significant risk and no clear evidence in non-relapsing progressive multiple sclerosis. Also, none of these reverse long standing existing disability in multiple sclerosis, so it depends what is meant by "highly effective." They are highly effective in preventing relapses and new MRI lesions.

Calling novantrone effective is stretching reality into "alternative facts."

[centenarian100]

Calling novantrone effective is stretching reality into "alternative facts."

It is effective, but the risks of the treatment (heart failure, leukemia, infection) are often greater than the benefit, so it is no longer used. The poor side effect profile has nothing to do with the efficacy of the treatment.