This Is MS Multiple Sclerosis Community: Knowledge & Support

Here's tomorrow's poster session on CCSVI. http://registration.akm.ch/einsicht.php ... N_ID=13705

I feel like it is such a hostile environment at ECTRIMS. And yet CCSVI research would benefit from neurologist partners.

http://registration.akm.ch/einsicht.php ... KEN_ID=900
First abstract is
Multiple stenosis or multiple sclerosis?

(To nitpick on the title, I'd say what we have is multiple stenoses AND multiple sclerosis. Both real issues, both needing treatment. But that is not what the researchers found...)

There you go, all our IRs are wrong. Our up-close analysis of IJV valves on IVUS and our seeing for ourselves the features of stuck IJV valves that narrow the flow of the IJV like a funnel are wrong. According to the Budapest researchers, what we are seeing is the IJV flow being diluted by the incoming flow from the subclavian vein.

Maybe we could find an image of what that would actually look like? And compare such an image to our CCSVI images.

http://registration.akm.ch/einsicht.php ... KEN_ID=900

Abstract #2 is a discussion of incidental findings on the MRIs. Thyroid cysts, pituitary irregularities, a remote PICA stroke, aneurysms, etc. The researchers informed patients when such findings were found and appropriate treatment was initiated. This has nothing to do with CCSVI but it seems to be good care.

another abstract
http://registration.akm.ch/einsicht.php ... KEN_ID=900

The researchers looked at extracranial veins in patients without MS. It is good to establish what normal is. The cast method used, however, shows only the outside structure of the vein, not the intraluminal inside of the vein; this is a problem because there has been much discussion of CCSVI abnormalities as being intraluminal most of the time. But what's interesting is that, among the normals, they found a single patient with abnormal IJV narrowing. And what's further interesting is that this patient had a patient history of long-lasting gait abnormalities for which no explanation had been found. Is it possible that her IJV narrowing contributed to that gait abnormality?

Now that those researchers have studied nonMS cadavers, will they continue their study to MS cadavers? Will CCSVI abnormalities be seen using this cast methodology that does not show intraluminal features? They saw a patient that did not appear to have IJV narrowing but who did have well-developed collateral system; could that have been an indication of an undetected IJV narrowing?

MS Neuros have invested much time and effort into MS being solely an immune disease. For more than a decade it has been reported that MS is in fact a multifactorial disease. MS Neuros have tried to discredit these discoveries. Prof Zamboni adds CCSVI syndrome to the factors involved in MS and the MS Neuro estabilishment wishes to discredit any new information. It is human nature to protect their kingdoms and reject change.
CCSVI advocates can try to fight the MS Neuros or rubbish them. I recommend advocating therapy for CCSVI syndrome if it is found in pwMS and rubbishing the closed mindedness of the MS Neuros. Others try fighting the MS Neuros instead lets rubbish their poor science of most of these MS papers at ECTRIMS.
For me its good tactics to rubbish the MS Neuros and their poor science but a waste of effort to fight them head on over the cause of MS.
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

In many ways, I feel we're on the sidelines watching. I don't know that, as advocates, we have as much of a job to do these days. It feels like it's in the hands of the researchers. Research takes forever, apparently, even if it were being done in the most direct, optimal, well-funded ways. I agree about advocating for people to go ahead and learn about CCSVI and decide with the help of an IR if it's the right choice for them. Here in the US, the big task before us is to raise awareness about CCSVI, because people haven't even heard about it. The attitude of the neurologists works against us, because the neurologist have a unified message that CCSVI has been proven wrong and that it had been a crazy dangerous fad. I don't want everyone who hears about CCSVI to run right out and get it, especially considering that the doctors are not all doing the procedure the same way or to the same standards of safety and efficacy, but I want everyone who hears about CCSVI to get full and accurate information. And that's not happening, not at all.

ok, another abstract:
http://registration.akm.ch/einsicht.php ... KEN_ID=900
In the British Columbia registry, they tracked actual CCSVI patients who had received the treatment out of country at various providers. 68% of patients said that the treatment met their overall expectations. If I had to guess, I'd guess that our expectations going into the procedure are high, so it is good that so many patients achieved this. Personally it was true for me as well: expectations met, and then some. Five patients out of fifty reported procedure-related complications. This included pain during or after the procedure, a rendez-vous procedure where the procedure is done through the neck vein instead of the groin vein, and a patient who was unable to have the procedure completed because the vessel was 90% blocked. It's significant that 90% of patients had no procedure-related complications and that I'm not even sure having a rendez-vous procedure counts as a "complication"; it's simply a different way to achieve the procedure. And not being able to complete the procedure because the vessel was 90% blocked, what does that even mean? The vein had a suboptimal outcome after ballooning? Or the vein was blocked and so it wasn't ballooned? I'd guess the suboptimal outcome after ballooning but am not sure.

The researchers looked again at complications at the one month mark, and again 90% of patients had no complications, and 10% (five patients) had complications, although it is unclear if these were associated with the procedure: heart attack symptoms, arrhythmia, trouble breathing, swelling in the left arm, and pain.

abstract #5
http://registration.akm.ch/einsicht.php ... KEN_ID=900
Dr. Fox's findings that hydration affects the ultrasound results. First he had patients fast for twelve hours. No food, no fluid. An ultrasound was performed. Then the patients drank a lot of Gatorade, and another ultrasound was performed. The results in some patients were different after hydration than when dehydrated. After rehydration, only two out of seven subjects still met the criteria for CCSVI and one subject who had not met the criteria when dehydrated now met the criteria.

This study looked at 16 MS subjects total but all of them had previously been tested for CCSVI and only 7 were found to have met the criteria. There is some evidence of intrarater reliability in that, when tested again after dehydration, the same 7 out of 16 were once again found to have met the criteria. Dehydration did not result in any increase in criteria among the 9 subjects who had previously not met the CCSVI criteria.

http://registration.akm.ch/einsicht.php ... KEN_ID=900
This was a blinded research study from Houston comparing ultrasound to MRV in MS and nonMS patients. They failed to find much evidence of CCSVI using either method. This was a National MS Society funded study.

http://registration.akm.ch/einsicht.php ... KEN_ID=900
This was the abstract from the Kuwaiti neurologist who had been briefly associated with Dr. Sinan. Dr. Sinan has strenuously objected to the neurologist's interpretation. From Dr. Sinan:

http://hubbardfoundation.blogspot.com/2 ... -2012.html
Dr. Alrougani had interpreted the patients as worsening dramatically after venoplasty. About 35% of patients stopped their DMDs after venoplasty. I however will wait for Dr. Sinan's study, if that is the official one, and I am shocked that Dr. Alrougani was allowed to contribute this abstract if it is indeed illegal and repudiated.

another abstract:
http://registration.akm.ch/einsicht.php ... KEN_ID=900
In this one, 240 healthy controls who had no MS or central nervous system pathology underwent doppler ultrasound and a questionnaire. In these healthy controls, there was found to be an association between CCSVI (defined as intra-luminal, structural, extra-cranial, venous system pathology) and the presence of heart disease, being overweight and smoking.

This might not mean anything for people with MS, since we are not among this healthy cohort, and our CCSVI may be the result of malformations that we were born with and that contributed to a lifetime of chronic outflow obstruction. It is a very different thing to be fifty years old with fifty years of outflow obstruction, than to be fifty years with one year of outflow obstruction having been acquired as a result of some of the suspected factors (heart disease, smoking, being overweight). Even though this is just an association and not causal, and even though it was research done in healthy controls and not in MS patients, it might be wise to do what we can to avoid heart disease, smoking, or being overweight.

Medpage article on ECTRIMS
http://www.medpagetoday.com/MeetingCove ... RIMS/35283

Seven cases of jugular thrombosis out of 462 patients. Around 1-2%. I wonder what anticoagulation was used. There was also a fatal MI and a nonfatal stroke following the procedure that could have (or could have not) been treatment-related. In 447 out of 462 patients, there were no adverse complications.

This was a registry study in Italy that found no objective evidence of improvement among patients, but did find that 53% of patients reported that they felt better.

If feeling better is due to a relief of dysautonomia, perhaps measuring signs of dysautonomia would provide that objective evidence of improvement?

30 patients or 6% showed improvement in EDSS scores after the procedure. The others stayed the same or worsened. Without a control group to compare, this is difficult to assess, since it is the natural course of MS to worsen.

another Medpage article on ECTRIMS
http://www.medpagetoday.com/MeetingCove ... RIMS/35292

The 'famous' Cosmo study....

Hello Cece,
You and many in America underestimate the power of the patient advocate voice. I recommend that when these poor science papers are published a response from CCSVI patient advocates in sent to the journal and NMSS. It needs to say:
-IRs who use Ven and IVUS find stenoses (refs)
-Neuros who use xyz do not find stenoses (ref)
-expert MS patient questions why neuros do poor science and do not use gold standard methods.
-expert MS patient reads that treating the symptoms of CCSVI syndrome benefits pwMS (refs)
-expert MS patients cannot understand why neuros do not offer a treatment to pwMS with CCSVI syndrome as it appears to offer symptom relief for many (more that half) pwRRMS.
Researchers who write in journal hate to be challenged with solid references. This should be copied to the NMSS if they are sponsoring, with the question why is NMSS paying for poor science?. I hope that American CCSVI advocates will band together and write these letters. It does not require original research but a good knowledge of the subject, which you Cece definitely already have. (You will need a thick skin for replies).
In the UK if you compare the first NICE document (neuro led) with the final guidance they are very different. The difference was CCSVI advocates highlighting actual data, any times.
I hope you and others will do this task.
Best wishes,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Cece,
Have a go at a response:
-IRs who use Ven and IVUS find stenoses (refs) Use Yamout as neuro who found stenoses.
-Neuros who use US and MRV do not find stenoses (ref paper cited)
-expert MS patient question why neuros do poor science and do not use gold standard methods. (ref my TiMS thread)
-expert MS patient read that treating the symptoms of CCSVI syndrome benefits pwMS (refs)
-expert MS patients cannot understand why neuros do not offer a treatment to pwMS with CCSVI syndrome as it appears to offer symptom relief for many (more that half) pwRRMS. Challenging if CCSVI syndrome is a cause of MS is irrelevant. However relief of MS symptoms is highly desirable for pwMS.
Best wishes,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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