Friday, 8 November 2013

Alice in Wonderland and CCSVI

Will the following Editorial put the CCSVI issue to rest? #MSBlog #MSResearch

Michael Rasminsky & Karel ter Brugge. Goodbye to all that: a short history of CCSVI. Multiple Sclerosis Journal 2013; 19(11) 1425–1427.


Excerpts:  

Alice laughed: “There’s no use trying,” she said; “one can’t believe impossible things.” “I daresay you haven’t had much practice,” said the Queen. “When I was younger, I always did it for half an hour a day. Why, sometimes I’ve believed as many as six impossible things before breakfast.”

Lewis Carroll, Alice in Wonderland


.....  The current issue of the MS Journal contains carefully performed studies by the group from the University of Texas and by the Italian CoSMo Collaborative Study Group that together with the previous study by the Texas group will hopefully finally definitively put paid to the hypothesis that multiple sclerosis (MS) is caused by chronic cerebrospinal venous insufficiency (CCSVI). It could be argued that such studies would have been unnecessary in a rational society, but they were unfortunately absolutely required in the hyper-connected society in which we live.

In the last 4 years the CCSVI hypothesis has turned the MS world upside down. The initial report of venous abnormalities in MS purported to demonstrate that 100% of individuals with MS had significant constrictions of veins draining the brain. This quickly and logically led to attempts to correct the abnormality by vein dilation and/or stenting. Elements of the media, ever anxious for a heartwarming story of a new and simple solution to a tragic problem that has played havoc with many lives, quickly trumpeted the story of the intrepid Italian investigator who had invented an enticingly labeled “liberation procedure” for the treatment of MS.6,7

From the outset there was healthy skepticism in the neurologic community. Not only did the contention that a venous anomaly was present in 100% of individuals with MS send up red flags, but the theory that a venous anomaly, even if indeed present, could cause MS …

75 comments:

  1. "It could be argued that such studies would have been unnecessary in a rational society, but they were unfortunately absolutely required in the hyper-connected society in which we live." This statement is very disturbing. It insinuates that scientific and medical studies are at the whim of social media and popular opinion. If this is the case then not only is MS research in deep trouble but also all of medical research. Where is the voice of reason? What's next blood-letting? That money and time is gone.

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    1. I agree. And just in case anyone from the National MS Society is reading this, I no longer donate to your organization. Before I was diagnosed with MS, I sponsored a rider in the local MS150 every year, but once I heard you were backing CCSVI research I no longer give. So you should keep this in mind before surrendering to the mob in the future.

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    2. Maybe this is democracy. If enough people are interested in subjects then maybe they feel they need to investigate on behalf of people with MS such that they know if the claims are balanced or not. I am sure they fund a lot of stem cells stuff and the the MS community no doubt want research in this area.

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    3. MD you don't want the inmates to run the prison do you? Is this the way to conduct research? Surely, stem cells shouldn't be labelled pseudo-science such as CCSVI.

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    4. I would say some of the stem cell stuff is indeed pseudo-science and you can get discounts for both treatments. There is of curse some good stem cell stuff

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  2. CCSVI was a scam. But the fact that some MSers, and the media, were buying into it meant the study had to be done. I.e. The theory was causing enough damage that it had to be disproved, for the benefit of future victims. So can we blame MS Soc for this?

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  3. CCSVI was a scam from the start. It's a pity that so much time and effort was spent to show it was a scam. If only the neuros and researchers could have shown the same level of enthusiasm in cracking MS as they did for debunking CCSVI.

    The real tragedy and the reason CCSVI gathered such a following is the desperation of MS patients, particularly in the progressive phase. It's nearly 2014 and the MS research world has yet to identify the cause of the disease, the mechanisms behind progression, treatments for progression, or treatments which encourage repair. Yet at the every increasing number of international MS conferences the claim is made that there's never been a better time to get MS and how great the rate of progress has been in understanding the disease. Until the research world can provide some real answers and identify treatments which get us better, not just slow down the rate of cns destruction, another CCSVI is waiting in the wings. EBV underpins MS and you guys have known this for a long time. If the focus of the last 50 years had been an EBV vaccine, we would have this blog and Prof G would be a world famous heart surgeon. Instead a made up disease called EAE which has nothing to do with MS (mice don't get EBV) is the real reason for rubbish such as CCSVI gaining a folowing.

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    1. In the UK I don't think much money was spent either investigating or debunking.

      I really doubt EAE is the reason why CCSVI gained a following

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    2. Another CCSVI is waiting in the wings. ....I bet it is faecal transplants the microbiome removal....It may have legs if done properly but tailormade for scammers

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    3. I was do diagnosed in January and am glad I have the treatment options available to me. Talking with many people who have been stable for decades on first line therapy makes me glad I was diagnosed now instead of twenty years ago.

      Contrast this with Anon 8:04:00 below who was recently diagnosed also but thinks the have to look at alternative methods such as CCSVI immediately. This astounds me. I can understand someone who has had MS for many years and is in a hopeless state looking at CCSVI as a saving theory, but someone who is just diagnosed thinking of this is just ignorant.

      So, down the road when they start progressing they can really say the DMD's aren't beneficial, but by then their window of opportunity has passed.

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    4. This is Anon 8:04:00 responding. I was finally diagnosed a year ago after 7 years of worsening symptoms and four neurologists later . . . the neurologists were the ones who seriously affected my window of opportunity as I was dependent on them to make the diagnosis. I had to shop around because I knew there was something going on. I diagnosed myself and was given the official brush-off by a reputable neurologist with poor listening skills.

      I am now on a DMD. I am learning all I can about all of my options. I read the research. I also interview people. And, fortunately, I trust my current neurologist who stays current and is thoughtful and kind.

      I didn't actually say I was considering the procedure, so making that assumption was a pretty big leap on your part. However, I am curious enough to listen to people. Curiosity is the most important part of medical practice. Like you, I have also talked with people on DMDs who have been stable.

      But I can choose to remain curious, just like Mr. Rogers encouraged children (see video below.). As long as people bury their heads in the sand and ignore what they see, I'll maintain my curiosity.

      http://www.youtube.com/watch?v=OFzXaFbxDcM#action=share

      My best to you in your management of this disease. We are both fortunate that there is interest, research and the internet!

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  4. I was diagnosed five years ago and so CCSVI was my first experience of a leftfield "cure" for MS but had heard of the goat serum and bee sting therapies. The internet and social media enabled the message to get spread quickly and keep it in the news - this was new and I think neurologists, charities and others need to work out how to respond effectively.

    While Dr Zamboni and no doubt some other clinicians and researchers had altruistic intentions in progressing angioplasty as a way of improving symptoms, there appear to have been many people whose only interest was taking desperate MSer's money.

    I very slightly disagree with the comments above - there was so much noise coming from a significant number of people who give money to the MS charities (referred to as "the mob" above) about researching CCSVI that I can understand why they felt compelled to do so.

    I am both sad and angry about the resources (time and money) that CCSVI has drained from patients, families, clinicians, researchers and taxpayers.

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    1. Canada has spent millions on this aspect

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    2. Canada has spent millions on very questionable research aimed at debunking CCSVI. Which I agree is a shame. Actual research about the effects of fluid drainage of the brain has gone on elsewhere.

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  5. The lack of intellectual curiosity is astounding to me. Why do some people with MS who have the procedure actually improve in function, including those with 'secondary progressive' MS? When you researchers have answered that question, perhaps our understanding of this mysterious disease will move forward. Bravo to the MS Societies for actually LISTENING to people and funding research. I'm new to this debate (recently diagnosed) and it seems to me the only ones stuck on the initial hypothesis is the neurological community.

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    1. Maybe the answer is a Placebo Effect

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    2. We did questionary in our ccsvi group and about 30 treated patients answered. At least 8 patients didn't have any effects after treatment. But there was 11 patients with benefits lasting over 2 years. And 5 reported about "optimal result", meaning that they don't have MS symptoms after treatment. My wife was among happy ones, and she had quite a list of symptoms, which disappeared in summer 2010. Of course this is just anecdotal info.. but Im quite happy of her situation now. Fatique, weakness, minor walking issues, balance problems, cognitive problems and heat intolerance been away 3,5 years now - I just love this placebo.

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    3. Before I was diagnosed, I was told to ignore my gastrointestinal symptoms and get on with my life. No matter how hard I "tried" to force my nervous system to respond, I couldn't defecate or swallow properly. When I had facial pain, I was given drugs and told to get on with my life. I had to fight for a diagnosis as I knew there was something wrong with me. What do you call that? A reverse placebo effect? No, they called it a conversion disorder. Until I finally had an MRI. I can still pass a hands-on neurological exam by experienced neurologists as all of my symptoms are invisible. Calling measureable improvements in neurological function a placebo effect is insulting and ignorant. As my radiologist friend says, "the book of what we know is smaller than the book of what we don't know." Why can't we just say we don't know and try to find out?

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  6. Look.. more doctors from Italy "in wonderland". Just published and they find slower flow only with MS-patients (only about 300 patients), and measured it with catheter venography.

    http://www.jvir.org/article/S1051-0443(13)01393-6/abstract .

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    1. I think this would have been more convincing if they had compared the subjects with a healthy control group, rather than 12 end-stage renal patients. A recent study in the Lancet shows that healthy controls have the same incidence of CCSVI as MS patients. I would presume that they would have found the same incidence of slower flow in a healthy control group.

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    2. ..and more doctors "in wonderland", did study and found that..
      "A dynamic ECD approach allowed us to detect IJVs with a significant increase in their CSAs during head rotation, but only in MS subjects"
      There was only 313 MS-patients and nearly 300 healthy controls.

      http://www.biomedcentral.com/1471-2377/13/162/abstract

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    3. "I think this would have been more convincing if they had compared the subjects with a healthy control group, rather than 12 end-stage renal patients."

      This would be the logical thing to do if you were trying to show CCSVI is real. My guess is they also used healthy controls but found no difference, so they excluded this from the paper.

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    4. Anon 1:03 back again...I have a question for the PhD's in the room. How does a paper like the one posted by Anon 9:22 get by reviewers? Wouldn't any reviewer have asked about controls? Or did I misunderstand the science here?

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    5. No, anon 2:05. the MS patients in the head-turning study were already diagnosed with CCSVI. They were selected for CCSVI. So, again, what is this study telling us really? People who already have small veins have small veins?

      And again, for the PhDs, how does stuff like this get by reviewers?

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    6. There are some pretty bad reviewers out there.
      A few weeks ago we heard how a flawed paper was sent out to about 300 online journals and it was accepted by over half of them..wh were taking a publication fee

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  7. Is it normal for scientific research to quote fantastical literature? Seems unprofessional.
    There's more research to be done and more money to be spent on CCSVI. Next big meeting is International Society of Neurovascular Disease (ISNVD) in San Francisco in February.

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    1. There is a lot more research to be done, just not on CCSVI. There has been far too much (millions) wasted on this already.

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    2. "Is it normal for scientific research to quote fantastical literature? Seems unprofessional."

      It's an editorial.

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    3. here is a link to the ISNVD program - marvellous to see such a variety of medical disciplines finally joining up the dots on the impact of venous disease on many neurological syndromes - MS is the tip of the iceberg

      particularly pleasing to see a Vascular Professor and neurosurgeon from the UK amongst the speakers, these doctors don't seem the type to waste their time on fairy tales - I imagine they have expert knowledge of the venous anatomy and their engagement with the topic can only benefit MS and other patients with neurological conditions in the long run

      http://isnvdconference.org/index.php?option=com_content&view=article&id=91&Itemid=520

      http://isnvdconference.org/index.php?option=com_content&view=article&id=91&Itemid=520

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    4. this paper has an excellent diagram to explain the venous hypertension mechanism - it could be particularly useful for neurologists reading this blog (hello nice lady from Sheffield) who are actually beginning to see the relevance of venous pathology underlying MS

      are people with MS effectively life long high altitude mountaineers? we certainly have a lot of the symptoms

      http://online.liebertpub.com/doi/pdf/10.1089/ham.2011.1026

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    5. If I had the millions, I'd fund a follow-up to Dr. Fox's autopsy study. He found intraluminal abnormalities in 5 out of 7 MS patients but only 1 out of 6 healthy controls. A lot of money has been spent on imaging studies but autopsy studies is the real deal.

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  8. Nothing to see here, shows over, move along please folks !!!

    Regards as always

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    1. Hold what's this, no you're probably right, let's just ignore it or better still ridicule it . "That'll show em"
      http://www.biomedcentral.com/content/pdf/1471-2377-13-90.pdf

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    2. I think you're right Andy, the show does seem to be over.

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  9. Gavin doth protest too much,

    please offer your OWN explanation for the distinct ventricular development of Dawson Fingers if, in your view, CCSVI has nothing to do with it

    clue: lesions develop from within the veins from large veins down to small veins AGAINST the flow of venous blood (venules are a red herring by the way)

    http://www.ms-info.net/evo/msmanu/839.htm



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    1. Still no reply to this one ? I for one would like to know.

      Regards as always

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    2. Maybe when you add links you could say what they are about www.ms-info the bible of VV and the other is stuff for "CCSVI Saturday"

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  10. Truly a work of genius.

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  11. The thing I don't understand is why the CCSVI fanatics keep coming to this blog? It is for MS research run by neurologists and EAE scientists. These are the people they despise and have ruined MSers by preventing a true cure being developed because they are in bed with big pharma.

    Why don't the stick to "this is ms", The CCSVI Alliance or any number of other places where they can get acknowledgement from the by other fanatics.

    People are who come to this site are more intelligent so why not stay where the dream if CCSVI lives on?

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    1. By reading here I've learned about
      - alem
      - is benign MS really benign / NEDA
      - EBV hypothesis which seems to hold some hope
      - neurologist interpretation of CCSVI papers
      - that new research on MS comes in literally every day, which means researchers are at work on this disease
      - that progressive MS patients are not abandoned but that there is research underway that might benefit them

      It's a good blog and a good service to the MS community.

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  12. Hey, does anybody here know about what kind of vein anomalies is CCSVI talking about? Certainly not "constrictions"... 4 years have passed and none of the editors has done his homework. This blog shines like a truth-absorbing black hole. Congratulations, guys! 20 more years of MS suffering!

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  13. Correct me if I'm wrong but the century before last had researchers seeing (more than once apparently) veins running through lesions in dead MS'd brains.

    Science works by testing a hypothesis, right?

    Lots of folk on all sides of the MS story have called MS a multi-factorial condition so, instead of posting pictures up of contemporary interpretations of 20thC fiction can we attempt to rule some theories out?
    From what I understand (acknowledging my patchy memory) the CCSVI research from both sides of the argument has been pretty narrow.

    Speaking as someone who, for the last 20 years has watched many MS theories come and go this blood flow issue appears to have been around in one form or another for over 150 years.

    In the 19th Century it was noted on dead brains that many scars had veins running through them after potentially suffering a good few years' damage resulting from, perhaps, wonky bloodflow(?) Nowadays and for the last 30-40 years we have all sorts of ways to look inside the living brain.

    Might it be possible to extrapolate from agreed on, accepted and repeated postmortem evidence into potential effects on living brain tissue?

    Could a hypothesis be tested that asks whether the variable flow of blood around and out of the brain has any effect on living MS patients?

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    1. We all agree that some of the lesions in MS have veins running through them.

      As to CCSVI the trial results will speak for themselves...I look forward to them

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    2. Also, you have to realize that the venious abnormality theories of years ago were dead science. If Zombonies results were published in an age of no internet or social media it would have been relegated to the dust bin. But as the author of the paper that this thread is about points out, we live in a new reality.

      The aims of research is no longer agreed upon by scientific consensus of those involved in the field, but now also anyone who has acces to a computer and has social media skills.

      The question is, is this the new norm or is the CCSVI debacle ammunition that MS researchers and societies can use to push back against phenomena like this? I hope the later is the case.

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    3. since when has concrete post mortem evidence been considered dead science?

      since neurologists arbitrarily decided in 1963 that a vague system of counting lesions and ttiming episodes of neurological dysfunction was required to conduct some clinical drug trials

      and it is still the case that MS is diagnosed because doctors 'can find no better explanation' - hardly inspiring that all my neurologist does is count and time lesions when my MRIs and MRVs are screaming at him the actual cause of my symptoms

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    4. Conducting studies on cadavers is the literal definition of dead science[!] At any rate, Dr Fox does not see the need for more studies on cadavers as his results were most likely due to dehydration. Also the fact that no studies have found any evidence for CCSVI, except that is for Zamboni.

      Clearly this is a consensus, Alice.

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    5. "Also the fact that no studies have found any evidence for CCSVI, except that is for Zamboni"

      ?? :) I wonder.. what CCSVI positive studies I have been reading last years and recently? Perhaps vein experts, radiologist and surgeons who find CCSVI positive data.. are all in wonderland? :)

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    6. A follow-up to Dr. Fox's cadaver study would have to be by someone other than Dr. Fox. Venous narrowing was equal in both groups but intraluminal abnormalities were greatly prevalent in the MS group. Dehydration of cadavers cannot cause intraluminal abnormalities which are valves, septums, webs etc.

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  14. Meta Analysis v Opinions

    http://www.pagepressjournals.org/index.php/vl/article/view/CerebVenReturn.2013.2/1369


    In short, there are 3 meta-analyses available from:

    1. Laupacis A, Lillie E, Dueck A, et al. Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: a meta-analysis. CMAJ 2011;183:E1203-12.[Pubmed]

    2. Tsivgoulis G, Sergentanis TN, Chan A, et al. Chronic cerebrospinal venous insufficiency and multiple sclerosis: a comprehensive meta-analysis of case-control studies. Ther Adv Neur Dis 2013.[Full-text]

    3. Zwischenberger BA, Beasley MM, Davenport DL, Xenos ES. Meta-analysis of the correlation between chronic cerebrospinal venous insufficiency and multiple sclerosis. Vasc Endovasc Surg 2013.[Pubmed]

    All the 3 above-mentioned meta-analyses confirm a significant prevalence of CCSVI in MS.

    Only six out of 19 comparable studies deny the association between CCSVI and multiple sclerosis. But while the first two meta-analysis showed heterogeneity among the studies, the third demonstrated clearly a significant double risk in having MS when CCSVI is detected, without any heterogeneity. The mass media should require a good communication of Science when scientific press releases are solicited. In controversy regarding prevalence and risk factors, to consult meta-analysis is a good tool to balance the communication

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    1. The problem is that they hypothesis on which this movement was based was flawed it is clearly not 100%specific for ms. Doubt gets cast on this and that doubt flows to the interventions.

      Lets see the trial results i do not understand why it is taking so long.

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    2. Lets not forget that CCSVI is still only few years old, quite new finding. There are now many clinical trials with promising results and lots of anecdotal evidence. There is still lots of research ahead and time will tell more accurately what CCSVI is and how it is related to MS. I don't know how many years does it take with MS drugs in clinical trials, but we have to wait couple of years and we know more. I understand very well why patients are excited about this and when I have seen with my own eyes how procedure changed patietnts situation - it's no wonder that Im also very exited.

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  15. Mouse Doctor, your reply wasn't negative.

    Would you suggest people who are possibly suffering from, essentially, the effects of hypoxia right here, right now on the ground increase their brain's oxygen supply?

    This study looks very interesting I'd be interested to hear your thoughts on it and do you believe there to be any overlap with MS and some stroke symptoms?

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0053716

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    1. The paper talks about hyperbaric oxygen promoting synaptogenesis in stroke. There are many places performing hyperbaric oxygen and could be repeated

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  16. why are the venous abnormality theories of years ago dead science, Mr Anonymous?
    I don't believe they've been disproved?

    As the world has kept turning, we have advanced and we have entered into an age capable of mass computer ownership coupled with better scanning technology why don't we embrace it and check on the theories of over a century ago?

    I come back to my initial question: isn't science about testing hypotheses?

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    1. One question. Why do 90% of Msers have oligoclonal bands that indicated plamsa cells are being devoloped in the CNS? Plasma cells are responsible for generating antibodies, ie autoantibodies.

      How does CCSVI produce these cells? I don't think there is a logcial explanation for this. This fact alone is the best evidence the MS is an autoimmune disease.

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  17. if it hadn't been for us computer owning, reading, invested in learning what we can about our condition MS patients, you researchers could get on with investigations?

    Speaking as a patient I wonder when researchers will understand that taking a treatment with less than a 50:50 chance of benefit but with a pretty definite raft of side effects isn't a very enticing option?
    try a bit of empathy Mr Anonymous, would you take those odds?

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    1. Yes, I am a patient also who was just diagnosed in January. Four years ago I was struck with a disease very similiar to MS known as Acute Disseminated Enchephalomeyelitis or ADEM. After a months stay in the hospital I was paralized from the waist down, and lost the ability to urinate.

      Fortunately for me after a year I was able to walk again but have permanant loss of bladder control as well as other things.

      So, after four years of having relapsing, multiple MRI's and spinal taps I was finally diagnosed with MS this year. I wasted no time getting on a DMD because I am smart enough to know my chances are without the available therapies.

      I'm not sure where you get the 50:50 ratio of efficacy of the drugs, but I would certainly be happy with this after being confined to a wheelchair for a year.

      But if this is not good enough, by all means give your money the the intervential radialogist and subscribe to whatever hype you want to.

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  18. very sorry to hear about your predicament, anonymous, get yourself down if you can to an MS therapy centre. I don't give my money to interventional radiologists but I do visit my own local MS therapy centre and take hyperbaric oxygen treatments as often as I can (hoping to make it 3xweek.

    I'm very happy to see my HBOT activity for the last two years being approved of by mousedoctor's comments or have I misread his apparent support for HBOT's ability to be good for a neurodegenerating brain?

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  19. forgive me but are we not led back to the assertion that MS is most likely multifactorial?
    If that is the case then the presence of signs of elevated immune activity doesn't mean that there aren't other vascular aspects to the disease that it's perhaps possible to address with further research and vascular explorations?

    Mousedoctor, would I be right in reading approval for further research into hyperbaric treatment from an earlier reply of yours?

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  20. MouseDoctor, forgive me for returning to a post that's nearly two weeks old but I'm very interested in HBOT.
    Would I be right in thinking synaptogenesis is good for everyone (except perhaps newborn babies who'll have a fair amount of synaptogenesis going on anyway?) and not just those who've suffered a stroke?
    There's not necessarily a correlation between shrinking brain volume and the loss of neurons or synapses?
    Do the quantity of these three things have any bearing on each other?
    Can we read exercise as being good for the brain by increasing bloodflow in the body and this leads to better blood circulation in the brain?
    Other than constantly dancing around the sweet spot of exercise (enough but not too much) and twice weekly sessions in the tank what other experiments should i be perform on my own body right here and now to get the best effect?

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    1. You are forgiven.....

      Synaptogenesis I am sure is good for every body and is no doubt part of every life. I suspect if neurons get no synaptic input it is not good for their health because it suggests the cell is redundant. However measuring synape content and relating it to brain volume I do not no the answer of the top of my head..

      However to equate HBOT and exercise and brain circulation em.. When you exercise your heart rate goes up as you need to supply oxygen to the muscles doing the exercise so circulation in brain will increase also. Synapse formation will require energy.

      As you suggestions for other experiments you will have to ask someone else like for therapeutic advice,but remember experiment fail and you need a measure to gauge success so that you can terminate if it fails. It looks like brain training helps to keep a health mind to build the cognitive reserve

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  21. thanks for responding to a comment that's now so old it could be considered prehistoric in this digital day and age!

    So, boosting synapse creation is good for everyone?
    Flooding the body's tissues with oxygen would appear to help create synapses you seem to be saying? (aswell as increasing regeneration of other body tissues).

    I found out recently the cornea is the largest consumer of oxygen (by weight) in the human body which would explain why the slowly increasing blurry patch in the middle of my right eye decreases in size (but doesn't disappear) whilst breathing O2 at depth.

    I've been experimenting on myself for the past two years - improved right eye sight happens every time whilst in the tank but hasn't stopped the blurry patch growing (it started in 2001) which leads me to believe that this part of my eye could get a bit better with enough and more regular sessions. My right leg also becomes less heavy.
    There's no extrapolation to do for me - this therapy has good effects and, I believe, needs to be shouted about more.

    I've been meaning to build meaningful cognitive reserve through picking up my schoolbook french, spanish and italian or learning to play an instrument as i've heard both activities encourage greater communication between the hemispheres?

    It strikes me this oxygen rich environment should be used more widely and could enhance the action of treatments that you are investigating.
    Would you agree?

    Thanks again for responding, good to see this therapy gets a researcher's thumbs up (with provisos)

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  22. You need oxygen for energy and energy for cell function but i oxygen levels controlled synapses then surely people in high altitudes would have less synaptogenesis, is there evidence of differing cogenitive influences?

    The problem with the cornea is that it has no blood vessels, it is like this not to obscure light so the question I would pose is how would high pressure oxygen increase transparency of light. HBO was investigated as a DMT and was found wanting, will people do back and re investigate? However it you feel it works great

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  23. ...my mistake about the cornea!
    it's the retina that uses most oxygen a researcher corrected me on thursday evening at a public engagement evening hosted by the Wellcome Trust and cambridge university looking at the wonder of the eye and brain.

    Don't people who live at altitude have brains that work differently to accomodate low O2 like Sherpas not needing additional O2 to climb in their own environment.
    perhaps this might address why the benefits of meditation have been discovered first in low O2 places through signs of a brain's plasticity and adaptiveness?

    After very short search this quote would appear to be pertinent to our discussion
    "Administering oxygen before the [memory]test, though, had no effect, suggesting that increased blood oxygen saturation specifically enhances memory consolidation"
    http://en.wikipedia.org/wiki/Memory_improvement#Oxygen_therapy


    Then on Friday I was being shown around some labs (mainly mice and rats) at the university as a 'patient discovery day' organised by 'Understanding Animal Research' folk and the Genetic Alliance (incorporating the MS society, I think).

    having learnt that test animals are treated very well in the UK (including deciding an experiment's worth even before any cages get filled) I'm still unclear about how EAE really relates to the disease I have?

    I guess I'm concerned with trying to make my and other patients' lives a little bit better right now.Having said that, the one area of research I can see merit in is looking for causes like what allergen, pathogen or virus might set the immune system off on the wrong path in the first place? (acknowledging existing EBV research).

    thanks again, I really appreciate the chance to talk with a mousedoctor. Unfortunately, our own particular mousedoctor on friday was in a hurry and couldn't stay to answer questions.

    i thought it only fair to find out what I can about at least one of the things that confuse me in life!

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  24. I would like to give opinion: ccsvi since it dose do some thing in some, women ten fold of men , some men have stress or over work them self's women stress out over small or larger happens ,stress on the brain clauses heat what dose heat in a skull do ? common since it wants to expand we all are different take heat related things different like stress ,having a tempiture ,divorce, death, over doing it ,being in sun to long, i had read something back 40 years ago a doc had found there was a vain that closed off giving vitd to where ever it was supposed to go .ok it was in a monkeys brain under stress. I could go on and on how heat has effected me till I get in ac ,then things would go normal, there's not one study or trial looking to see what happens in the deep veins ,in a heated averment ya they look before doing ccsvi under normal temps, there not looking at the start during and end, I believe in ccvis if they look at it a little different

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    1. Dear Bill
      Thanks this is an opinion. You may believe in CCSVI but the blocked vein hypothesis has yet to find favour and available data argues against this. It is well known that heat is a problem for people with MS. search heat and Uhthoff's phenomenon where ProfG explains why heat can be a problem.

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  25. thanks for getting back : it may not be blocked but have you or any body heard of taken a mri and look at what happens in the deep veins under a patent being in a room around a100 degrees or so or wrapped in an ele blanket , I was told they stop putting us in hot tubs due to it my cause a relapse I think its more to do with how much could they charge for a hot bath to the insurance com to find out if you have ms, my experience before being diagnose in a hot tub at 105 degrees when I got out all I could do was walk in a circle then after $ 3-4 hundred thousand dollars I was diagnosed ,ms. if it was checked out at start and during it may show a different light on things, thanks again for being hear

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    1. The hot bath tells us about demyelination, MRI tells us about other aspects of MS and an MRI would be considered by some to be much more useful in making a diagnosis. The hot bath exposes demyelinated lesions and so this could be perceived as a relapse

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  26. wow, you people are something else...i'm an IR, never done a liberation procedure, assisted on 2 at a super reputable major medical center. Your dogmatic approach to this is a riot. I mean, Tysabri costs $40,000 a year and people die from it. It helps what - a third of the people that get it? But that's ok. that's science. Look we just don't know what we need to know about MS. It's like metastatic cancer. Once it hits that stage, the treatments are abysmal. We have treatments. We study them. We dismiss alternatives as quackery. But the mainstream treatments stink. We have no idea whether Zamboni was on to something but to refer to it as a scam is a bit much. It surely isn't as much of a scam as coffee enemas, macrobiotic diets, and so forth. Let's agree to move on and research it the way it should be - carefully, methodically, keeping an open mind. If - IF - there are people who have improved after liberation procedure the question is why. Placebo? What does that mean about the objective organic alleged etiologies of MS? I mean, if you have real, hard, documented MS, should a placebo help you be symptom free for 2 years? Or is it just a matter of sub selecting the susceptible pheno and genotypes. What I get from this blog, sadly, mostly from the anti's, is that you just don't know what you are talking about and as as dogmatic that this doesn't work as the proponents are that it does.

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    1. AnonymousMonday, June 22, 2015 9:54:00 p.m.

      Show me the science and not the money. You clearly are not up-to-date with the science. there is literally nothing published to support the science. Maybe the bank balances of the IR's bank accounts of those who have decided to scoop the jackpot is the best evidence out there that CCSVI is a disease worth treating. Sleep well.

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    2. We have no idea whether zamboni...? I think we do and the idea was found lacking

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    3. Show us recent evidence from recently conducted properly controlled trials that this procedure works and we might change our minds but the evidence from these trials does not show this. If that's dogmatic, then guilty as charged.
      To my mind, charging people for a procedure where the evidence is lacking is morally dubious.

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  27. I was one of the first to undergo stenting at Stanford University Hospital and came from the UK. I luckily only paid circa $5,000 for the experimental treatment. My bladder control on the return flight to the UK was much better than on the flight there. I later underwent stenting for nutcracker syndrome and further jugular vein dilation in New York with Dr Sclafani. I immediately suffered a sever exacerbation.
    Reading recently in the Scientific American there was a terrific article on the Glymphatic system which has only just been discovered and is thought perhaps to be involved in many neurological diseases. Perhaps in the end, neurological diseases involve both immunological factors as well as other ones...

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  28. I also no longer publish any of my personal experiements such as the venous stenting and anti-retroviral drugs on social media such as ThisisMS where I now know people's hopes were falsely raised. But when you lose the ability to walk at 30...

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