This Is MS Multiple Sclerosis Community: Knowledge & Support

"The body" if that is what we are still talking about, certainly isn't basic or simple. Nor are most people. I have found many of them to be fairly logical, and fairly capable, even when it comes to understanding the complex.

I think the people on this forum are well qualified to understand and to act on the information they encounter here. No anonymous net denizen can stop that. If they want to do so, let them do it in public and stop all of this camouflaged gossip.

Try http://ccsvi.org

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Again, I have no clue what you are referring to - none of those are related to any of my posts! I'm not even sure that you're replying to the right person. But in case you are:

Firstly, I have NEVER said on this forum or ever in my life that people are illogical or incapable (where on earth did you get that from?!).
I don't know other people's qualifications. But I'm unqualified on the majority of topics, except the specific topic I have chosen as a future career path - even there, my knowledge is limited to what info I have available to me. Noone I have ever met has qualifications in everything! But if you are, that's truly astonishing and impressive!

The body is complex and no one in this or any forum, nor people anywhere in the world, nor anyone in human history has ever been "qualified" to claim that they have figured out everything there is to know.

So please stop distorting my words. This is not about capability to understand!!! It's about the fact that after 100s of years of work trying to learn about the body, we still have sooo much we don't understand about the body! If we understood everything as you seem to suggest, we would be able to understand the causes of every disease and just work on finding a treatment (really, sometimes that's the easier part). So if you are so capable that you understand things that for 100s of years humans have not yet discovered, please inform the rest of us!

Second, I said before neither individual people or doctors' opinions are the point here. Opinions are personal. Not always based on fact. If I claim that apples are good for health, and say that as loudly as I can to as many people as I can, doesn't make it necessarily true - may be true for some, not others, may not be true at all. Individual opinions are BY DEFINITION subjective, and prone to biases (formed by prev experiences, fears, emotions, hopes, ...etc.). This was realized as an obstacle to gathering facts in science over 100 years ago, and solutions have been implemented to prevent bias at least in coming up with important medical answers.

Personal views of doctors and patients may be similarly biased and we are all entitled to our opinions. The difference is that doctors go through years of training to learn (hopefully) which information is/is not reliable, how data is interpreted, ...etc (again, we can't summarize YEARS in a few posts). Does that mean scientists-clinicians don't have personal opinions anymore? Of course they do! They are just expected to NOT allow those to interfere with patient care and only rely on the non-biased information available to them.

Lastly, I am frankly not as interested in further theoretical discussions about the body and state of knowledge. I just assumed (apparently incorrectly) that everyone here would agree that human physiology is too complex for us to figure out even now (umm, if we knew everything, we'd have a cause for every disease out there! I assumed everyone would acknowledge that!). That is a basic premise and I'd rather not try to convince anyone who doesn't believe that.

My interest in this forum is more about how familiar we are with how evidence is collected and importantly, how it is interpreted - the examples of why this is an issue are so plenty I wouldn't even know where to start - this is a very practical issue for anyone learning about a disease. It has to do with the fact that we generally don't get the opportunity to learn about the "behind-the-scenes" of all the studies we read.

OK. No offense, I am just jaded from too much net guile that goes on around here.

I had to be trained in sarcasm myself for many years, because I could never get the hang of it.

http://ccsvi.org

Have a nice Saturday.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

If you want us to understand, you may have to summarize years!

Here are three studies we have pored over in the last few weeks, what do you think of them? Reliable? The first two seem to have contradictory findings, what do we make of that?

BNAC study:
www.ncbi.nlm.nih.gov/pubmed/21490322

pilot study:
www.ncbi.nlm.nih.gov/pubmed/20351672

Zamboni parenchyma hyperperfusion study:
www.ncbi.nlm.nih.gov/pubmed/21385345

(1eye, you made me smile...there is definitely a middle ground, I don't think we have to toss everything we've done as a community with understanding these studies or what supplements to take...I trust the evidence for taking green tea extract, because of research presented and dissected here...it also strikes me that it is a sea shift, instead of trusting our neurologists about CCSVI we are trusting our IRs and each other...which has positives and negatives.)

Zivadinov et al. 2011

I'll looked at the one done by a different group than Zamboni for now (took 1.5hrs for one!). Below is what I (and more so researchers/clinicians) do when they read studies.

DISCLAIMERS: I’m not a doctor so I can’t claim to be an expert on MS (not enough training); my training is in research; anyone with more knowledge, please correct anything as you see fit; none of this is related to my personal opinion about anything or suggests what people should(n't) do (my opinion or the authors' opinions are irrelevant to finding facts); I'm ONLY looking at the data in this study.

MY MINIMAL REVIEW OF THE ADULT DATA FROM THIS STUDY:

Published in Neurology by a good team of reputable researchers = I don't question the reliability/validity of the numbers they give; only looking at what these numbers mean for the field:

Skipped intro and discussion (not needed unless I don't know why the research is being done to begin with or don't want to interpret it myself).

METHODS:
1-sample size (MS:289,healthy:163,CIS:21,other neuro disease:26) appropriate <-- larger sample than original Zamboni study

2-Doppler evaluation – done by BLIND technologists with little knowledge of MS (I would probably stop reading if they weren’t blinded!) <-- this is how we know that the team is not just publishing their personal views just to discredit the CCSVI theory (as others have suggested); they wouldn’t have known which subjects are healthies vs. MS vs. other neuro diseases in order to make a biased decision! (some limitations to their blinding method in the article – nothing too unusual or troubling).

3-CCSVI defined as 2 or more venous hemodynamic (VH) criteria (keep in mind this is arbitrary/man-made; must use same criteria across studies; also can be modified to improve test)

4-inter-rater reliability (2 technologists who haven’t talked to each other about their findings separately assess the images and their results are compared)- only done on 28 subjects (doing all would’ve been better, but oh well)- 89.3% agreement (the higher the better; not bad by current standards)

4-Stats are appropriate (won’t go into detail but pretty conservative)

RESULTS:
1-more males in healthy group (is there a sex difference? we don't know the effect of this).

2-Prevalence of CCSVI if 2/5 VH criteria used: MS=62.5%, other neuro disease=42.3%, CIS=38.1%, healthies=22.7% (All statistically different)

3-They report sensitivity/specificity, positive predictive value, negative predictive value between MS and healthies; they use specific formulas for each to answer specific questions (below); for the sake of space, I’ll only go through sensitivity/specificity for now:

- Sensitivity (= if a person scores +ve for CCSVI, how well does this predict that they have MS): 56.1% (not high by current standards; to be diagnostic, >80% is needed)

-Specificity (= if a person scores –ve CCSVI, how well does this predict that they don’t have MS): 77.3% (a little better)

4-Subgroup analysis: in this study, people with other neuro diseases had HIGHER prevalence of CCSVI than patients with relapsing-remitting and CIS; but LESS prevalence of CCSVI than patients with progressive MS

Study has many more contributions for those in the field but these are not their primary findings (they report the prevalence of each “imaging” criterion separately – so we can determine which can discriminate MS and which can’t - from their data, criterion 5 is not different between MS and non-MS; criterion 4 more prevalent in other neurological diseases than MS...etc) <-- all this needs to be hashed out by more studies before the approach is finalized and used properly in clinics; e.g., should criteria 4 and 5 be taken out? Would that improve the sensitivity/specificity in MS?

WHAT CAN WE CONCLUDE FROM THIS STUDY? (only important part for our purposes)

1-MS is ASSOCIATED with (not necessarily causes) CCSVI. A cause must be (1) necessary- every MS patient has it, and (2) sufficient- no healthies should have it. This was not supported by this study (doesn’t mean it isn’t, means we need more studies to figure it out).

2-Sensitivity not high enough by current standards but specificity was high (may not be good for diagnosis) <-- this is just based on this data; more data needed

3-The fact the progressive MS patients and those with other neuro diseases were more likely to have CCSVI than relapsing-remitting and CIS patients IMPLIES that maybe CCSVI gets progressively worse as disease progresses, and SUGGESTS that maybe CCSVI is a results of MS and not a cause <-- too early to tell but this is what this data suggests

4-Study does not tell us what the authors' personal opinions are on CCSVI (some others have suggested that this group is JUST publishing data to discredit the theory)- for all we know, the authors are supportive of the theory but still have to report whatever they find

^ whoever thought research studies just give quick yes/no answers! lol

BNAC's conclusion that CCSVI does not cause MS has been controversial around here, to say the least.

The specificity and sensitivity explanation is informative.

It's helpful to know about the 80% mark. Also helpful to know that they checked for inter-rater reliability and that at 89% it was reasonably high but not 100%.

I looked up the zamboni criteria again, thinking #5 might be the deep cerebral veins reflux that has been dropped (there are now 4 Zamboni criteria after the consensus at the ISNVD conference), but no! That one is #2. #5 is the CSA of the IJV being greater when upright than when supine. #4 is flow not detectable in the IJVs or verts both upright and supine.

(If there is no flow at all, then is there no reflux? And if the theory is that reflux leads to MS, no flow at all could lead to hypoxia and slowed removal of wastes and insufficient cerebral glucose but not reflux and therefore contribute to other neurological diseases instead? SPECULATION ONLY since #4 was found to be more common in other neurological diseases than in MS.)

You did a great analysis, willowford, I hope you stick around.

I am looking forward to research studies done using plethysmography instead of doppler. Plethysmography seems simpler and more reproducible.

Thanks! Sometimes the controversies arise because a study's findings are taken too far... this study is unable to conclude causation because its design doesn't allow for that (we'd have to "create" CCSVI in one group and not in another group - not tell anyone which group they are a part of - and see if if the first group gets MS - and we can't do that!)

If every study is interpreted based on just what it finds, then no one would get all worked up about it - this one says that causation is not LIKELY (given that it doesn't seem to be necessary or sufficient for MS).

Have you also noticed that sometimes we "disagree" with a study's findings and find it to be "useless" merely on the basis of its conclusions rather than its design and analysis? Or assume that the authors are anti-(something) because the data they happened to get says something we didn't want to hear?

That's what I mean when I say personal opinions are not facts - our disagreement is not going to change the numbers obtained in that study (not going to increase the number of MS patients in that study with CCSVI). The results are what they are. This kind of fallacy might be where people get upset by study findings - even though the findings are nothing to be upset about.

I am enjoying this exchange.

It speaks to critical areas we've been talking about. I love how conversations spiral around. The neverending dinner party.

The actual, accurate analysis of studies is terribly important.

And yet I am going to go in a different direction here.

I am thinking in bursts. I may not be clear. Sorry. The weather is stormy in my brain this month. I'm tentatively poking a thought or two above the clouds.

Willowford, I am curious how you envision the groups you label "patients" and "doctors." Do you have some distinct qualities you have ascribed to each of them to be able to put them in separate groups?

Instead of two groups, I see overlapping circles. Many "patients" have a professional background in science, research, statistics, medicine, etc. that equals or exceeds many "doctors."

(Incidentally, I do not like the word "patient" except for being amused by the inherent word play.)

And of course, many "patients" do not have such a background. But even without adequate information, "patients" have the ultimate responsibility for making their own choices and living with the consequences, and they deserve to have the most appropriate support in making that decision.

So how can "patients" have access to the most appropriate guidance? Is that your passion?

How to make sure that "patients" -- the individuals making health care decisions -- have access to accurate information about research, about facilities, about long-term consequences?

Well, I would say that's great. We are all on the same page. Along with plenty of excellent company.

I would suggest that the most effective way to accomplish this depends on several factors: creating decent research in the first place, the accuracy of the research, disseminating the research results, evaluating the facilities, disseminating information about the facilities, evaluating the interventions and follow-up, and disseminating that information -- you get the picture.

But to me personally, with all that bundle of info, the absolutely most critical piece, if you are genuinely trying to help an individual at the point of making a life-changing decision, is this question: How do individuals make their health care decisions?

That is what you really are trying to find out. Is that why you're here, behind the scenes, as you said?

So how do individuals make their health care decisions anyway?

Lots of people assume that other people make decisions the same way they do. But there are so many styles of making health care decisions! One person wants facts, facts, facts in order to make the most logical decisions. A different person only wants to do what their friends have done so they can all do it together. Another person will do whatever the old trusted doctor says even if everyone else says the doctor is an antique eejit. Another person ALWAYS does the newest scariest thing. Another person doesn't care what doctor or what facility as long as it's the second week in May because that's the only open slot in their busy-busy schedule. ET CETERA.

People are NOT logical, and their decisions are not logical, and they do not make decisions in a vaccuum. And when they are looking to get information, there is no one right way.

I personally find it extremely difficult to gather meaningful evidence on which to make any health care decision -- with my own specific background, I do not trust ANY data, period. I am cynical, and I believe ANYTHING can be designed and manipulated for any reason, positive or negative. So I do my own personal investigating, and I use a multitude of sources, and ultimately, after family and medical input, make a decision. It's a slow process.

Willowford, I applaud your earnest intent, your instinct to dive right in, and your use of the available technology to do on-the-spot research for yourself without waiting for secondhand info about "patients," or for some other expert to tell you what "patients" do. You are going directly to the source and finding out, directly, hands-on, what is happening.

This is precisely what is happening everywhere. People go straight to the available sources. And they see what makes sense, what seems ridiculous, what they want to throw away, what they will keep.

It's the people who do NOT have access to more information who have a harder time making informed decisions. And many people are not used to evaluating information. They could use a campaign, geared toward various decision-making styles. Everyone would benefit from that! Right now it can be chaos. But I believe it will be OK. It *will* settle down. It's a learning curve.

It is crucial to remember that while this type of debate happens -- theory, studies, how to disseminate info -- multiple sclerosis can be a devastating disease. People have died while on waiting lists for angioplasty. This adds an urgency and changes the usual decision-making parameters.

I can't even get into it right now it makes me so sad. Perhaps the most striking examples I can think of off the top of my head are the different experiences of Canadians Barb Farrell and Bill Peart. The whole history of CCCSVI treatment is bizarre. My own experience is bizarre. If you had been immersed in this unfolding story of multiple sclerosis and CCSVI, as we are, you might understand.

There is a large population of people with MS who have access to the Internet and are able to find reasonably well-rounded information about most treatment approaches. But a huge part of the MS population relies on their own personal physician and the info put out by various MS societies.

Most of these official MS physicians and societies refused to acknowledge the huge interest in CCSVI in a timely way or a realistic way. People received info that either exaggerated the risks, was inaccurate, or patronized the MS population. It was a huge missed opportunity to help this group. People heard about CCSVI, tantalizing info trickled down, but rather than hear info from a doctor, people were forced to look elsewhere, some of them a very high EDSS at risk of death or just in fear of disability, and they got their info from inaccurate news articles, hearsay, etc.

It's just too much. You sound so earnest.

Nature's first geen is gold
Her hardest hue to hold
Her early leaf's a flower
But only so an hour
Then leaf subsides to leaf
So Eden sank to grief
So dawn goes down to day
Nothing gold can stay

A little cheerful spring poetry for the occasion.

Again, kudos for trying, and use the search to see that there have been lots of interesting discussions here before. So, do you fish?

I feel like this is way too long and rambling to post but maybe someone will find a useful tidbit. I can't even tell now if this is on track with the discussion! I mentioned to someone else here, I've been having this thing lately -- kind of like being drunk without the alcohol -- so don't hold me responsible for losing my inner editor.

Before undergoing venoplasty I consulted with the head of my local MS Clinic. She tried her best to talk me out of it, saying it wasn't "rational" for me to undergo the procedure.

I consulted with an interventional radiologist who was confident he could repair my impaired venous outflow.

My family physician was supportive.

I didn't even bother to ask my neurologist. I tried calling his office a while back and his answering machine said "if you're calling about CCSVI, I don't know anything about it."

All four were accredited well-educated physicians. All had contradictory messages. With such uncertain topsy turvy medical advice I decided to call in someone to help me make my own informed decision:

Paging Dr. Facebook

(also goes by Dr. Internet)

Hystrerical Jugular!
And, oh so true.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

I heard tell that it isn't true that money is the root of all evil. It's *love* of money that is the root of all evil. So what is money the root of? I think that money is the root of all words. But what is the seed? And which came first?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

bluesky63, I enjoyed reading your post. Very different perspectives. Gave me a lot to think about.



Actually, by patients, I personally mean the general public who is not involved in active scientific research on a particular topic - those without formal, active, ongoing training in the topic. They don't have to have MS. They don't in fact have to have any particular chronic disease. Everyone is a patient when you think about it.

The qualities that I ascribe to "doctors" (I really mean docs-scientists-clinicians who have formal training in science) are what are learned throughout their medical/science training... which takes between 5-12 years! Of course, all that information cannot be imparted on "patients" (aka general public) in a few newspaper articles or sessions. Which is where docs (scientists/researchers) report their findings and mean one thing, and some in the general public interpret it as something entirely different.



If you are referring to individuals educated in other professions who use the Internet to inform themselves, I respectfully disagree that their knowledge and expertise exceeds a person who has spent (1) 12 years training in something every single day, and (2) continues to spend his/her life - every single day for how long ever they have been "working" - focusing on that particular topic.

It is impossible for say, a lawyer who has MS, has a family to take care of, and works full-time as an attorney, to (1) find the time to devote to studying and practicing medicine that clinicians/scientists devote (unless they have superpowers!), and (2) get the training and exposure to research methods, study design, statistical analysis, interpretation...etc. that scientists received throughout their training with other scientists who critiqued and critiqued until finally the lesson was learned. The general public don't have access to that constant evaluation, feedback and critisism on a daily basis. DOING something over and over first-hand, is nowhere near reading about it.

First, I don't exclude physicians from the "general public or patient" groups - how could I when majority of physicians are themselves patients! (some have MS, others may have diabetes, the rest will still be going for the yearly physicals as patients, right?) So physicians are not excluded as patients.



Again, unless they are devoting their lives to a specific area, they cannot be experts (not enough time to be an expert in everything!). If your interventional radiologist develops say some heart disease, he will NOT be treating himself! That would be absurd... he would go to the EXPERT (cardiologist) for the best treatment. Doctor's themselves don't consider themselves experts in everything.

So the logic that "patients" or general public with some brief, distant training in science who haven't thought about it all since then are suddenly experts is exaggerated. Without formal training, one may still have a ton of knowledge and know the current literature, but there will be some necessary skills missing.



All this has been happening in scientific circles for years... the dissemination part may be an issue for the general public because yes, we spread the info, but how is it interpreted? Does the interpretation represent the actual message of the study? Or is it exaggerated or minimized?



Excellent point. Maybe that is one of the top questions. I guess the issue is the decision making process and tools used have changed drastically, and I'm not convinced that they have necessarily changed for the better.



I have seen this cynicism personally alot from patients, especially those with MS, as well as just family and friends.

I do wonder though, is this cynicism selective? I have noticed that those of my family and friends who are cynical about all research, whenever a finding comes out that they ALREADY believe in from before, they suddenly agree with THAT study... the logic is lost on me... evaluating the merit of a study by whether you agree with the findings? We may as well make up data and publish whatever everyone already believes in!

Similarly in CCSVI research, the very same people that are discrediting all researchers, express that all doctors are "liars...etc.", and scientists are just trying to mislead the public... those very same people hang on to anything Dr. Zamboni and his team say like the gospel! To my knowledge, Dr. Zamboni is a researcher/scientist, and a doctor! The very things these individuals should not be (according to their logic) trusting!



My questions/interests are in patients and how they view things... it's just a personal interest though, so nothing on here is going to be "published" anywhere

If we have questions about what patients do, we go to the patients. But if I have a question about what treatment to get for my chronic condition, is going to other patients really the most objective approach?

I guess that's where things have gone in terms of where we get our info... I don't know the implications of this, but I'm sure someone is studying it somewhere.



I'm not convinced that people who do not have access to chat room and google are necessarily having a harder time making informed decisions. This may be true for some people we all know individually, but on the whole (let's face it, we don't know the majority of people without access to Internet), I do wonder what their experience is like.



Again, are we certain that these people are unhappy or worse off? We don't know everyone without access and I don't know if anyone has made the effort to do a study on this. But it's an interesting question. I know many patients who have doctors they trust, and leave the decision up to their expertise, not because they do not have access, but because they recognize that they are not the ones with the expertise in the topic (not saying this is the right approach, but that it exists by choice, not out of necessity).



No fishing. My hobbies are on the computer! (I know, how dull!)

willowford, what do you make of the concept of patient advocates?

The doctors themselves (Dr. Dake, Dr. Sclafani, and many others) learned of CCSVI when patients brought the information to them.

I guess in a way, that's what I'm trying to promote myself... but my concept of patient advocacy, personally, may be a bit different. To me, as a patient, it's not just about my right to decide - but my right to have available "experts" who are objective and logical, who can take their time to be up to date on the latest research, and impart on me the most accurate, unbiased information.

It is unfair of me as a patient to be expected to become an expert on everything that could possibly affect me (e.g., flu, heart disease, diabetes, kidney failure) seriously, how can we expect ourselves to become experts in everything that isn't our primary line of work?... we all have our own jobs/lives. The issue is that these "experts" exist (somewhere), but people tend not to trust them because of one or two previous not-so-good experiences with other "experts".

In MS, the MS societies are meant to serve that function - they have both patients with MS, physicians knowledgeable about MS, as well as others, who work there to impart important and accurate interpretations of the literature to us. And because there is more than one person, it is less likely that the view of these organizations will be overly influenced by ONE physician's or patient's view. Unfortunately, some people no longer trust these resources because of an early misunderstanding about their views on CCSVI.

I wonder if it is at this point even possible to get that trust back.