article "MS drug trial a fiasco"

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

Postby jimmylegs » Sun Jun 06, 2010 5:22 pm

hmm clearly i should have been checking this thread more often over the last few days.

@ lyon, nice try.

@ the rest of you, who votes for some post deletion in this thread? show of hands please.
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Postby marcstck » Sun Jun 06, 2010 5:24 pm

jackiejay wrote:I, for one, was not discrediting the CRAB drugs to validate CCSVI....I was sickened to read that there is not much credit given to these drugs at all...according to the BMJ....I can see the connection, according to your hypothesis....that if they are somewhat effective that helps the CCSVI theory....we are only commenting on the findings stated in the BMJ....I was told it is a highly respected journal, maybe it's not.....but it all comes back to CCSVI and the hope that it is the major part of the answer we are all looking for...


The BMJ is a highly respected journal, but they are not commenting at all on the CRAB drugs' efficacy in reducing relapse rates. Their focus is limited to disease progression, and while of course that is the holy Grail of all MS research, it's not the only bit of evidence to look at when assessing a drugs efficacy in reducing MS misery...
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Postby patientx » Sun Jun 06, 2010 5:41 pm

jimmylegs wrote:@ the rest of you, who votes for some post deletion in this thread? show of hands please.


Just not mine :)

Was there really anything that bad in this thread?
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Postby concerned » Sun Jun 06, 2010 5:52 pm

Some people have made personal attacks on people rather than talking about what is being talked about, and I hope that is what is being suggested for censorship? Although I don't really care for censorship, that kind of behavior is against the rules of the board.
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more spilt milk -- try venoplasty...

Postby 1eye » Sun Jun 06, 2010 5:52 pm

Kind of makes me feel glad they finally wouldn't let me have any of the so-called DMDs. And I ended up in the placebo group. But before that I was on 1a for 7 years.

I think, in me there was a definite downturn dating from when I *stopped* interferon and copaxone.

I blamed it on neutralizing antibodies. Oh, well, water under the bridge. Now, about my venoplasty?
"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 jimmylegs » Sun Jun 06, 2010 6:01 pm

we regularly censor here according to the stated rules of the board. advertising posts get deleted no questions asked. code of conduct breaking gets a warning when it's spotted, but usually it has to be brought to a mod's attention, due to the volume of posting at TIMS.

private messaged complaints to a moderator about a particular user by minimum five established contributing members, results in disciplinary action and possible account deletion (which as far as i know must be done by the administrator not a moderator).
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Postby mmcc » Sun Jun 06, 2010 7:26 pm

jimmylegs wrote:hmm clearly i should have been checking this thread more often over the last few days.

@ lyon, nice try.

@ the rest of you, who votes for some post deletion in this thread? show of hands please.


Hand is up.
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Postby mmcc » Sun Jun 06, 2010 7:36 pm

Hope66 wrote:"Lesions and other hallmarks of MS are detectable in an MRI, but "CCSVI" requires special training in interpreting the images.


I think this statement is misleading. I believe that MRI tech's are trained and skilled in reading the MRI's and that not all lesions are MS related. They too have to be trained to identify those lesions which are "suggestive" of MS.

I also think the EAE/autoimmune theory is a bit like "parking lot science" (i.e. the story of the guy who lost his keys in a far corner of a parking lot at night but looks for his keys under a lightpost in the middle of the lot because that's where the light is).

Cheers,
Hope[/quote]

Here (USA) radiologists interpret MRIs and ultrasounds. The techs are generally not even permitted to share their opinion with you directly.

EAE testing of MS drugs is only a very preliminary test of new drugs - Since MS, unlike some other conditions like cancer, cannot be induced in a lab animal, researchers came up with EAE as the closest they could come. None believe it is the same thing, and no drug has every been released based on EAE tests. There is always extensive human testing.

Would you prefer that drugs go straight to human trials with no animal testing? If not, what do you think researchers should do since they can't induce MS in mice? Test nothing?
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Postby Lyon » Sun Jun 06, 2010 8:16 pm

jimmylegs wrote:@ the rest of you, who votes for some post deletion in this thread? show of hands please.
Whose posts are you considering deleting and hopefully ban for life?
mshusband wrote:Scorpion, I don't know if you and your ilk (Lyon, Concerned, PatientX and a few others) have MS or not ... but NEVER get the CCSVI treatment, and let EVERYONE ELSE GET IT ... we'll see who is better off.
MrSuccess wrote:MS Husband .... good reply ... but you are suffering fools gladly . I agree with all but one on your list. I would not include PX with that group.
PX is an intelligent [ unlike Bob ] longtime contributor here at TIMS.
mshusband wrote:But those are the names I continuously being ANTI-CCSVI even when good points are brought up by doctors that show CCSVI COULD be relevant.


If so, my hand is in the air!!
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Thank you Marc.

Postby jgkarob » Mon Jun 07, 2010 12:08 am

Dear Marc,
I have been waking up in the middle of the night for the last couple of nights, troubled and wondering how to make my voice count.
Your last two posts have made my point perfectly. Thank you so much.
I almost came downstairs to write this;

What does a hastily-brought-in decision in 2002, to allow access to the DMDs for those with RRMS who qualified for them, have to do with CCSVI?

Most statistic gathering schemes in the NHS are badly run. My daughter is working on a chlamydia study and they are having many problems with the statistics.

The risk-sharing scheme was to put right an injustice. Very few people with RRMS had access to any DMD (in 2002). People were taking out mortgages, there were campaigns, petitions and the government made a u-turn. It was a wonderful decision and suddenly we had MS nurses, drugs and better care.

My DMD has slowed my relapse rate to one every 3 years (on average) and my disability is minor. Neurologists don't often use EDSS in the UK, I've never been assessed.
For me - every relapse has brought distressing and often painful symptoms. It takes on average, a year for me to recover, but I'm lucky and I do.

Yes. I want to be tested for CCSVI. I think it may possibly help with my only permanent and rare symptom, extreme hypertension. My first ever attack, pre diagnosis, caused autonomic dysreflexia. I almost died.
I think that this was CCSVI-related.
Again, many many thanks for your posts on this subject.
K Roberts.








marcstck wrote:
jackiejay wrote:I, for one, was not discrediting the CRAB drugs to validate CCSVI....I was sickened to read that there is not much credit given to these drugs at all...according to the BMJ....I can see the connection, according to your hypothesis....that if they are somewhat effective that helps the CCSVI theory....we are only commenting on the findings stated in the BMJ....I was told it is a highly respected journal, maybe it's not.....but it all comes back to CCSVI and the hope that it is the major part of the answer we are all looking for...


The BMJ is a highly respected journal, but they are not commenting at all on the CRAB drugs' efficacy in reducing relapse rates. Their focus is limited to disease progression, and while of course that is the holy Grail of all MS research, it's not the only bit of evidence to look at when assessing a drugs efficacy in reducing MS misery...
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Postby dreddk » Mon Jun 07, 2010 3:23 am

Ummmm perhaps moving this topic would be appropriate. Deleting would be quite aggressive. I find the range of opinion on the board to be a positive and appreciate the full range of opinion, even if i disagree with the conclusions of some participants...
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Postby mshusband » Mon Jun 07, 2010 5:18 am

Lyon wrote:
jimmylegs wrote:@ the rest of you, who votes for some post deletion in this thread? show of hands please.
Whose posts are you considering deleting and hopefully ban for life?
mshusband wrote:Scorpion, I don't know if you and your ilk (Lyon, Concerned, PatientX and a few others) have MS or not ... but NEVER get the CCSVI treatment, and let EVERYONE ELSE GET IT ... we'll see who is better off.
MrSuccess wrote:MS Husband .... good reply ... but you are suffering fools gladly . I agree with all but one on your list. I would not include PX with that group.
PX is an intelligent [ unlike Bob ] longtime contributor here at TIMS.
mshusband wrote:But those are the names I continuously being ANTI-CCSVI even when good points are brought up by doctors that show CCSVI COULD be relevant.


If so, my hand is in the air!!


I don't believe there is a personal attack or anything against the board rules in there at all.

All I said was if you don't believe in CCSVI why do you come to this board and bother those who want to learn and who do believe?

If you don't believe ... just don't get the procedure done, and leave it for people who do believe and want to have it done.

That's ALL I said.
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Postby jackiejay » Mon Jun 07, 2010 5:35 am

maybe they don't believe in it..... yet......I think it is good to get all viewpoints and ask questions.....but the bickering is a waste of everybody's time.....
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Postby mmcc » Mon Jun 07, 2010 5:42 am

mshusband wrote:
I don't believe there is a personal attack or anything against the board rules in there at all.

All I said was if you don't believe in CCSVI why do you come to this board and bother those who want to learn and who do believe?

If you don't believe ... just don't get the procedure done, and leave it for people who do believe and want to have it done.

That's ALL I said.
Why would you want people who have not neccessarily jumped in the CCSVI pond not to come here. Personally, although I am going to have the procedure, I think opinions from those who have decided to wait or not have it at all to be valuable.

This is not "magical." It should be a rational, science based decision. The truth is that "belief" is not the issue. Even the inventor of the procedure thinks more research needs to be done.

There have been many discoveries made which over the long haul were not nearly what was hoped for. This could be one of those. The risks are not yet clear - NO risk is clear in less than a year. The benefits are also not known - are they only a few months, are they years, are they permanent?

Anyone who thinks that they are having the procedure and are not being guinea pigs is not being realistic. NO DRUG would be administered by doctors without far more testing than this procedure has had.

If this thread becomes nothing but a cheering section, it has no value. The value is in sharing information - good, abd, and ugly.
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Postby jgkarob » Mon Jun 07, 2010 5:49 am

Yes.
As I wrote earlier. An historic decision to allow the DMDs to be prescribed in 2002, has little relevance to CCSVI now in 2010.
It should be moved back to general discussion.

I'm rather disappointed to be honest. Cheerleader is one of my personal heroines and the linking of this with CCSVI and the subsequent furore, has caused me a few wakeful nights. This is NOW and that was EIGHT years ago and only for ambulatory RRMS.

I've been around the online MS world since 2000. I've campaigned for access to drugs in the UK, along with others. The situation was unfair and very cruel.
It also has nothing whatsoever to do with CCSVI now. CCSVI may have a great benefit for all types of MS. Who knows for sure....yet.
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