Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Thursday, February 28, 2013


Abstracts from 2013 ISNVD Conference

February 28, 2013 at 7:51am

The abstracts from the recent International Society for Neurovascular Disease conference are now available on line in a pdf format:


A brief rundown of some of the 63 pages on abstracts--

Dr. Niggemann presents research showing how positional MRV can be used to show cerebral blood flow in supine and upright positions.  This is a huge step forward.

Dr. Raju presents research on the efficacy of illiac vein stenting, since this has been done for a longer period of time in those with illiac vein stenosis.  Research shows that this procedure is most successful in those who are earlier in the disease process, and who have less damage to the organ.

Dr. Zivadinov presented on CCSVI research at ECTRIMS 2012, looking at modalities for detection and CCSVI in pediatric MS and other neurological diseases.

Researchers from the MRI institute in Amsterdam presented on cerebral venous return and other chronic neurological conditions.

Dr. Mancini looked at cerebral circulation time in people with MS using contrast enhanced ultrasound, showing that pwMS have much slower cerebral circulation than healthy controls.

Euromedic group of Poland reported on endovascular treatment of CCSVI using cutting balloons, as opposed to stenting or simple ballooning.  They found good success.

A group from Naples reported on CCSVI venoplasty in 144 cases, reporting sustained and good results in 55% of those treated.

BNAC reported on parts of their Premise study, including the use of IVUS rather than just venography, and found IVUS was superior in detecting extracranial venous abnormalities in pwMS.  They also reported on their CSF study, which showed an improvement in CSF flow a year after venoplasty.

A group from Rome reported on 3 month and 1 year improvements in 577 patients treated with venoplasty for CCSVI, as seen on doppler ultrasound.  511 patients were scanned at three months and 91% showed maintained venous outflow. 385 patients were scanned at one year and 80% showed no CCSVI recurrence.

Saturday, February 16, 2013


 Vascular results thrown out by COSMO: researchers publish their own

February 16, 2013 at 10:49am

A team of vascular researchers from Naples was part of the multi-center COSMO CCSVI study in Italy, but the three main auditors decided to throw out their results, since they felt their finding of CCSVI was too high to be valid.

The data from this group has just been published in the BMC Neurology Journal.  This trained vascular team found CCSVI in 76% of pwMS and 16% of controls.  They find longer circulation time in those with progressive MS, "suggesting a role of hypoperfusion in neurodegeneration." Here is the study.


How can the COSMO study claim to be independent when 90% of the positive findings of CCSVI were thrown out by three men who were not even in the room when the doppler tests were done? In what way is this science?  

Here is more on this ongoing story:

Vascular specialists in the Lombardi region are angered that positive results are discarded by COSMO study. They offer a blinded doppler "redo" for people who participated.

The COSMO study results were adjusted by three central readers, who threw out 90% of the positive CCSVI results in pwMS, because they felt the number of positive findings was too high.

The study coordinator, Giancarlo Comi, blatantly violated a feature of clinical trials, in that he came out announcing negative results at ECTRIMS 2011, when more than 75% of the patients had yet to be tested.


the outrage continues,
Joan

Saturday, February 2, 2013


Medical Hierarchies

February 2,  2013  

We are beginning to see how the hierarchical power structure at universities and in medical journals is impacting research into CCSVI. Negative studies are picked up time and time again in the press and regurgitated ad infinitum,  while positive and corroborative CCSVI research from vascular specialists is ignored. 

Why?

Aside from corporate conspiracy theories (which may be true, but near impossible to prove)---there is another force which comes into play in research.

The hierarchies of medical disciplines.

Here is a paper written in the 1980s, regarding the favoring of the immunologists' explanation of MS over the vascular paradigm. 
Yes, this debate has been waging for many, many years-it is not new.



From the paper on Social Constructionism and medical sociology: a study of the vascular theory of MS--


"A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in
structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of
observation, and the points from which observation takes place, differ. 

It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated."

The authors go on to explain how the "large and powerful group" of more highly paid and trained neurologists got to "own" MS. Because of this, any other theories or modalities of MS diagnosis or treatment from weaker and less powerful medical groups or patients are shot down, called quack theories and easily discounted.

This is a very important paper for us to understand.  It reviews Dr. Philip James' studies in Scotland in the 80's. He likened the MS disease process to decompression sickness and oxygen deprivation he found in divers. James, like Dr. Roy Swank, thought this might be due to blockages in the vascular system, and he had much success treating MS patients with hyperbaric oxygen. 

This paper helps us understand what we've always been up against- and why the internet is a democratizing power in this "social constructivism" and how we can change the dialogue, and insist on more vascular research.  We can lend our voices to help the "marginalized" vascular profession.

We may not be able to control what the mainstream/corporate press publishes in terms of research results, BUT we can inform one another, and help the vascular doctors have a platform for their research.

Spread the word.
Joan

Friday, February 1, 2013


Obesity, MS and the vascular system

February 1, 2013 at 8:13am

A new study in the news regarding an elevated MS risk in obese children, particularly girls.  Here is the abstract.

The study found that the risk of developing MS was more than one and a half times higher for overweight girls than girls who were not overweight, nearly 1.8 times higher in moderately obese girls compared to girls of normal weight and nearly four times higher in extremely obese girls.  

Dr. Langer-Gould's new study finds a correlation between obesity and MS risk in girls, more so than in boys.

No clear cause-and-effect has been established, but there are some theories that link the two conditions.  "Estrogen in fat produces pro-inflammatory [substances], and obesity is known to be a low-grade inflammatory state," she said. "After going through puberty, girls have higher estrogen levels than boys, so overweight girls are getting a double whammy.

This may well be true regarding estrogen---but then, why do other studies show a protective effect of estrogen on women with MS?

What if it is not simply about the hormones, but also about how obesity affects the endothelium, veins and cerebral perfusion?   

Obesity changes venous health
Obesity also makes you more likely to develop chronic vein disease, a condition in which the veins become unable to pump enough blood back to the heart, causing blood to pool in the legs. This type of vein disease is common in obese women, who have more blood to move through the body and often have reduced physical activity.17 Overweight and obese patients are also at increased risk for problems caused by vein disease, like skin changes and ulcers on the legs. In one study of 272 patients (64% were women) with chronic vein disease, the more excess weight a person carried, the more severe their disease.18


Obesity changes cerebral perfusion
The current findings suggest that cerebral hypoperfusion and obesity interact to impair cognitive performance in persons with HF. 

Obesity creates hypercoagulation and damages the endothelium in children
In our study, we found that there is a procoagulant increase in the coagulation system activity of obese children compared to non-obese healthy children, whereas there is a significant decrease in anticoagulant system. These changes occurred in obese patients, especially higher levels of plasma procoagulant factors such as fibrinogen, FVIII, FIX, and von Willebrand factor, lead us to think that there is an activity in these patients at endothelial level. Further studies are needed on endothelial activity of obese children.

Obviously, not every overweight girl develops MS, and not everyone with MS is overweight.  But let's not miss the larger point.  Here is yet another connection between MS and the vasculature.
Please share and discuss in your MS community and with your doctors.
Be well,
Joan