Exploring the Gut-Brain Connection and Photosensitivity

[kirsten]

heh.

https://www.youtube.com/watch?v=RfdZTZQvuCo

 

[kirsten]

The global burden of epilepsy is shouldered by the developing world:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61646-8/fulltext


This is why I see epilepsy as sanitation issue. Please take a look at this gut-brain poster I produced nearly three years ago, Sanitation Is Sanity:
https://www.facebook.com/photo.php?....246428715601.298680.518250601&type=1&theater

I'm afraid you're not comprehending what you're reading in your paper. It doesn't say that epilepsy rates are higher in Africa, because they are not. Given that your premise is that epilepsy is caused by sanitation problems, you have disproven your point. I live in Africa and I always have. The reason epilepsy is a problem, according to your paper (and I would agree), is:

Many people with epilepsy and their families do not know that the disorder can be controlled with medical treatment, so seek help through traditional medicine practitioners, particularly for seizures involving sensory or psychic phenomena.

In other words, your paper says that the treatment gap in Africa is due to people such as yourself pushing ineffective treatments outside evidence-based modern medicine. Your ideas are the same ideas that traditional medicine practitioners are using. That is why so many of our people are not getting relief. People are dying, being stigmatised...This is not an area you want to speak about. It doesn't reflect well on your ideas. I strongly recommend the book 'The Three Letter Plague' if you would like to open your eyes to the problems your methods are causing in our HIV positive population. I would love you to come to my country and spend some time in one of these rural villages so that you can see and experience the very real deaths that are happening because patients believe herbs and food can cure their HIV but antiretrovirals cannot bring longterm remission. This translates precisely into epilepsy and similar diseases that don't have a simple cure. I'll say it again: People are dying.

And if you think you can sell dry composting to low income groups in Africa, you've not seen our townships.

The other reasons Africa has a treatment gap are

• Africa is the second most populous continent in the world.

• Africa is the poorest continent in the world.
  

Oh, and without vaccines, with the public healthcare system strained beyond belief, with doctors being simply unable to spend enough time treating every patient because they the doctor to patient ratio is 0.77 per 1000, with patients spending at least eight hours (but generally 20 hours) queuing in stifled, crowded rooms waiting for care. If they were not vaccinated and you threw a dose of diphtheria into that crowd, and put them in their 20 passengers-per-taxi routes home, then in their crowded townships, and with the lack of access to antibiotics, and the tendency to believe that medicine cannot cure, and you have an epidemic. With extreme population density in many urban and rural areas, without vaccines, all us Africans would be dead. Not the pretty picture anti-vaxers think they paint.

http://www.southafrica.info/about/health/health.htm#doctors

 

[cuppycake21]

Hi Everybody,

I'm new here and find this thread very interesting. It's late and I'm tired, so I want to come back tomorrow and take my time to really read it through. But I did want to remark on the debate going back and forth. I think being challenged offers an opportunity to consider things from a different perspective, or perhaps see the fault in a theory. But I also find ALL of the discourse important and potentially helpful to all of us with Epilepsy. Epilepsy has so many causes (known and unknown) and under the proper conditions can afflict anyone. So it only stands to reason that there are likely many roads to a cure. In the meantime, maybe discussions such as these can help us dig through the tangle of information and triggers and find common threads leading back to common sources. I realize what I'm saying is vague and obvious, but I just think that looking for the "brass ring" or one source is probably not realistic. At any rate, I look forward to reading through the posts. Perhaps the cure lies in the patients themselves.

 

[Bernard]

Just FYI for the lurkers - Most of the regular participants in this thread have at one time or another complained to me privately about other participants in this (or similar) threads.

There are many corners of the internet where the community (or moderators) maintain a certain point of view and anyone who challenges it get run off. These corners become echo chambers where groupthink predominates.

I have encouraged everyone who complained to me to view the people they were complaining about as a blessing. Here they are having a discussion with some people willing to challenge ideas and not personalities. This is the best way to explore a topic and maybe discover something new.

I would like to thank everyone participating in this thread for keeping it on track (ie. on the issues and not on the people involved).

 

[Keith]

It doesn't say that epilepsy rates are higher in Africa, because they are not.

I appreciate your insights as an African, kirsten, but fear you're misconstruing the issue. The access to treatment and type of treatment is not the issue, even though that in itself is a major problem. The point I'm making is that epilepsy rates are indeed higher in the developing world by far. And that includes Africa. The question is: why? Even if they were being treated traditionally or otherwise, they would still be epileptic.

there are twice as many people living with epilepsy in low- and lower-middle-income countries than higher income nations

http://www.sciencedaily.com/releases/2012/09/120927205459.htm

Did you know malaria is a sanitation issue due to mosquitoes breeding in standing water? But it's not just about mosquitoes any longer as we now know the protozoal parasite is transmitted via placental transmission. Children are born with the parasite, infected during pregnancy. It's kept in check by the immune system until something like poor sanitation or vaccination tips the balance. Here's an excruciating article about the problem leading to brain damage and epilepsy:
http://www.theguardian.com/global-d...ar/21/malaria-epilepsy-knowledge-resource-gap

Here's recent news about India and how poor sanitation results in "malnutrition" which is actually malabsorption syndrome due to intestinal imbalance. This is a true paradigm shift in the way people are viewing health. Most people still believe children are starving for lack of food, but that's not the real reason. They simply can't absorb nutrients they eat.
http://www.nytimes.com/2014/07/15/w...lict-well-fed-children-with-malnutrition.html

These same gut imbalances cause seizure.

Of the estimated 50 million people with epilepsy world-wide, 40 million live in developing countries (World Health Organization [WHO])1 and about half of these are children.

Infectious causes of seizures and epilepsy in the developing world
http://onlinelibrary.wiley.com/doi/...ay+Per+View+will+be+unavailable+from+10-6+BST.

 

[kirsten]

but fear you're misconstruing the issue. The point I'm making is that epilepsy rates are indeed higher in the developing world by far.

No, Keith, I'm not misconstruing the issue. As the Lancet said, and as your citation says:

Despite being one of the most cost-effective disorders to treat, there are twice as many people living with epilepsy in low- and lower-middle-income countries than higher income nations and more than 60% of those affected in these regions are not accessing any appropriate treatment.

There are twice as many people living with epilepsy in low and lower middle income countries because population numbers are skewed. There are more diabetics, people with broken bones, people who have nightmares, people who love rainbows, babies, people who enjoy a good burger, and people with pretty smiles in low income countries. Look:

The developing world accounts for 97% of global population growth. Developing countries currently account for 80% of the world's population.
http://www.un.org/en/development/desa/population/publications/pdf/popfacts/popfacts_2010-5.pdf

The Lancet has not said there is a higher percentage of epilepsy sufferers in the developing world, but a higher number of epilepsy sufferers in the developing world. We are not coming down with epilepsy more often. There are simply more people here. In fact, if there are twice as many people suffering from epilepsy in the developing world, our rates of epilepsy are, in fact, lower. I doubt that is the case, but that is what your sources are saying. I realise that your article has translated its own source inaccurately, because its own source uses ambiguous language, but let's trace it backwards: This is the piece that was used to write the piece you cited:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61381-6/fulltext?_eventId=login

You will note that it says very different things to your piece. It more clear about the language it uses. They're using the 'it is thought' sentence that relates more to mortality from epilepsy than epilepsy rates themselves. Nobody knows whether there are higher rates of epilepsy in the developing world. Nobody has counted. This is the WHO document that is being cited:

Over four-fifths of the 50 million people with epilepsy are thought to be in developing countries; much of this
condition results from preventable causes

Do the math: We account for 80% of the global population and four fifths (80%) of the epileptic population. Makes sense, no? Rates are the same globally, according to WHO, and according to the piece that your article is trying to translate.
http://www.who.int/mental_health/media/en/98.pdf

The press, even the scientific press, suffers somewhat from a broken telephone scenario. This is what has happened in this case.

Not being able to access treatments is a very real problem. In my own experience with epilepsy, I have had status epilepticus more often than I can remember. Without access to medical treatments, I would now be dead. If I didn't have medical treatment now, I wouldn't be able to work and support myself. There are people here who do have epilepsy, like me, but who don't have access to treatments. Coma and death are real problems, and problems that a simple IV can solve over the weekend.

Children are born with the parasite, infected during pregnancy. It's kept in check by the immune system until something like poor sanitation or vaccination tips the balance. [/url]

Your article says:

up to one third of children with cerebral malaria will leave hospital with a neurological disability like epilepsy.

In other words, the situation is not tipped by poor sanitation or vaccination. The existing cerebral malaria causes direct trauma to the brain.

African children, coma develops suddenly with seizure onset often, following 1-3 days of fever. A few children develop coma following progressive weakness and prostration. Brain swelling, intracranial hypertension, retinal changes (hemorrhages, peripheral and macular whitening, vessel discoloration and or papilledema) and brainstem signs (abnormalities in posture, pupil size and reaction, ocular movements or abnormal respiratory patterns) are commonly observed. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056312/

Here's recent news about India and how poor sanitation results in "malnutrition" which is actually malabsorption syndrome due to intestinal imbalance. These same gut imbalances cause seizure.

Sanitation has never been the topic of this discussion. If you're trying to sell me on the fact that we need better sanitation here, I am already sold. I am an active part of a project that is trying to get our township sanitation issues resolved because women are having to walk outdoors in the dark to use outdoor toilets, and they are getting raped. I have been participating in this project ever since its inception 10 years ago.

I'm interested in the logistics of our situation, and in getting these people what they need, in a way that will work, and not in what anyone would like them to have. It's not about us but about them. There are very real semantic and logistical issues that we need to deal with here in my country. If you honestly want to help, bearing in mind that our government will not even put water pipes through those areas so it would be on your dime, then I only wish you the very best but I dearly hope that if you ever do approach the issue, you will do so unselfishly.

However, that there are sanitation issues does not mean that there are gut imbalances or that they cause seizure. You will have to provide evidence to support that statement.

 

[Keith]

Do the math: We account for 80% of the global population and four fifths (80%) of the epileptic population. Makes sense, no?

It depends on how you view that 80% of the global population which is divided by Least Developed Nations, Less Developed Nations and More Developed Nations. In More Developed Nations, epilepsy rates are already shockingly high at 1 in 100 (UK and Canada) which is not surprisingly the same as the Celiac Disease rate. But if you believe those rates apply to Least Developed Nations, please think again. I've read 80 percent of the world's stunted children live in just 20 countries. This is not a world of equality where this inequality also applies to epilepsy.

There are an estimated 50 million people with epilepsy in the world, of whom up to 75% live in resource-poor countries with little to or no access to medical services or treatment.

http://www.prb.org/Publications/Dat...n-data-sheet/fact-sheet-world-population.aspx
http://www.epilepsysociety.org.uk/sites/default/files/attachments/Chapter01Neligan.pdf

That's awesome you're working on sanitation issues locally, kirsten. By the way, I mention poor sanitation in my very first post of this thread and it's been in my thoughts throughout. I presented this poster last year about flora balance and poor sanitation:
http://f1000.com/posters/browse/summary/1094298

 

[kirsten]

It depends on how you view that 80% of the global population which is divided by Least Developed Nations, Less Developed Nations and More Developed Nations. In More Developed Nations, epilepsy rates are already shockingly high at 1 in 100 (UK and Canada) which is not surprisingly the same as the Celiac Disease rate. But if you believe those rates apply to Least Developed Nations, please think again. I've read 80 percent of the world's stunted children live in just 20 countries. This is not a world of equality where this inequality also applies to epilepsy.

The WHO category cited (in your paper) is 'developing country'. In your terms, that is a 'less developed country'. I'm afraid the figures speak for themselves. Keep in mind that we're not talking about 'stunted children' or celiac, but epilepsy. What happens with stunted growth and celiac doesn't change the figures for epilepsy prevalence on the page. We all know the 1 in 100 figure for epilepsy. It appears to apply globally, with the same figures popping up over and over again despite their being individual surveyors and questions--epilepsy in developing countries keeps on showing itself to have the same rates as epilepsy in developed countries. The figures thus far aren't morphing themselves to your needs. I haven't wanted to cite these stats because we have had no single global survey of epilepsy rates at all, by anyone. We've had small surveys, with large scale ones in Canada and the States. But here you go. This is the sort of statistic you're going to find about developing countries' epilepsy rates (Hint, they're all 1 in 100).
http://www.gov.za/events/view.php?sid=42283
http://timesofindia.indiatimes.com/...sy-awareness-campaign/articleshow/5521619.cms
http://www.globalcampaignagainstepilepsy.org/files/FINAL report.pdf
http://newsatjama.jama.com/2012/11/16/rates-of-epilepsy-remain-stable-in-the-united-states/

India: Studies from different parts of India reveal that the prevalence varies from 8.8/1000 in
Bangalore to 3/1000 near Calcutta.
Sri Lanka: In a survey in the Kandy district of Sri Lanka, 9 out of 1000 people had epilepsy.
Thailand: A survey of rural Thailand reported a prevalence of 7.2/1000.
Bangladesh: Though there are no national statistics, it is estimated that there are at least 1.5–
2.0 million people with epilepsy in Bangladesh, ie about 12 people with epilepsy per 1000
population.
Other SEAR Member Countries: The prevalence is probably similar in other SEAR countries
as they share similar socio-cultural and demographic characteristics. By applying these figures
to local populations, it is possible to know the approximate number of people requiring treatment
in any given geographical area.

Also, keep in mind that I'm merely telling you what your paper says, and what the paper you gave us before says. Right now you are arguing with your own citation.

 

[Keith]

So, you actually believe epilepsy rates are the same for the poorest nation in Africa and the USA? I wouldn't believe that for a moment.

The rate is "5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa."

Data on the incidence of and prognosis for epilepsy in sub-Saharan Africa are scarce, but prevalence data show that epilepsy is two or three times more common than in industrialise countries in non-tropical areas.

http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(04)00963-9/fulltext
http://www.medscape.com/viewarticle/705599_2

 

[Keith]

I find it hard to believe prevalence studies stating epilepsy rates are similar in India to those in developed nations. I'm sure it varies based location just as many health issues do such as diabetes, i.e., urban vs. rural where urban rates are higher due to pollution. Diabetes rates in the USA are actually not far behind India.

Here's a very recent 2014 study:

We suspected that epilepsy prevalence might be uniform throughout the world, whereas incidence is higher in resource-poor countries.

An unknown quantity—The worldwide prevalence of epilepsy
http://onlinelibrary.wiley.com/doi/...nticated=false&deniedAccessCustomisedMessage=

Prevalence studies appear fraught with potential error. One factor may be people in the developing world unwilling to admit they or their child has epilepsy due to the stigma. I maintain a significant percentage of epilepsy is an environmental issue where things like poor sanitation, diet and toxic pollution shift flora balance over generations, a matter of poor microbial predisposition.

 

[kirsten]

So, you actually believe epilepsy rates are the same for the poorest nation in Africa and the USA? I wouldn't believe that for a moment.

The rate is "5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa."

That is between .5% and 7%. In other words almost 1 in 100, or almost 1%, same as in developed countries. (?)

 

[kirsten]

Quote :

We suspected that epilepsy prevalence might be uniform throughout the world, whereas incidence is higher in resource-poor countries.

[/url]

Ok, woah, woah! Do you know what your researchers did to come up with these figures? They did an internet search.

In any case, be that as it may, you forgot one part of the citation that kinda changes the meaning of what you quoted. The paper says

The reported incidence (rate of new cases in a population)
prevalence rates (proportion of the population with epilepsy).

We suspected that epilepsy prevalence might be uniform throughout the world, whereas incidence is higher in resource-poor countries. We found that the range of estimated prevalence of epilepsy may be broadly similar throughout the world, but comparison is limited by lack of door-to-door studies in high-income economies and by variations in the definitions of active epilepsy. We contend that any inconsistencies between incidence and prevalence are due largely to the excess premature death rate in people with epilepsy in lower-income economies.

So what they're saying is "We had a suspicion that there were more active/morbid cases of epilepsy in the developing world, so we Google-searched Pubmed, and found that we were wrong, and that epilepsy rates were the same in the developing and developed world."

So, you actually believe epilepsy rates are the same for the poorest nation in Africa and the USA? I wouldn't believe that for a moment.

Your convictions are not data.

 

[Keith]

That is between .5% and 7%. In other words almost 1 in 100, or almost 1%, same as in developed countries. (?)

You misread this quote: "The rate is "5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa."

At the high end of 74.4 per 1,000 that's 7.4 in 100, a staggering figure compared to developed countries.

That's why the researchers stated an average:

Data on the incidence of and prognosis for epilepsy in sub-Saharan Africa are scarce, but prevalence data show that epilepsy is two or three times more common than in industrialise countries in non-tropical areas.

Sanitation-challenged nations suffer far more epilepsy. The same is likely true for diabetes and obesity, but the world hasn't yet commonly associated sanitation with these major health issues. It's not even proven yet that diabetes is caused by microbial imbalance of the gut, but tons of evidence is mounting quickly.

 

[Keith]

So what they're saying is "We had a suspicion that there were more active/morbid cases of epilepsy in the developing world, so we Google-searched Pubmed, and found that we were wrong, and that epilepsy rates were the same in the developing and developed world."

That's not what they're saying at all. They stated the opposite, please re-read the quote. They're saying that, like you, they suspected epilepsy rates were the same throughout the world, but the data proved them wrong. What they found were higher rates in the developing world. Then they tried to defend their original premise by stating the limitations of prevalence studies.

 

[kirsten]

That's not what they're saying at all. They stated the opposite, please re-read the quote. They're saying that, like you, they suspected epilepsy rates were the same throughout the world, but the data proved them wrong. What they found were higher rates in the developing world. Then they tried to defend their original premise by stating the limitations of prevalence studies.

The quotation:

We found that the range of estimated prevalence of epilepsy may be broadly similar throughout the world,

 

[kirsten]

You misread this quote: "The rate is "5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa."

At the high end of 74.4 per 1,000 that's 7.4 in 100, a staggering figure compared to developed countries.

That's why the researchers stated an average:


Sanitation-challenged nations suffer far more epilepsy. The same is likely true for diabetes and obesity, but the world hasn't yet commonly associated sanitation with these major health issues. It's not even proven yet that diabetes is caused by microbial imbalance of the gut, but tons of evidence is mounting quickly.

You're right. That was bad math.

But I'm still not buying it. These figures come from yet another internet search:

The members of the Commission conducted a systematic review of the literature on the development and application of the treatment gap and resource availability measures in assessing epilepsy care. In order to identify relevant articles we searched three databases: Ovid Medline, EBSCO MEDLINE, and PubMed. We also searched for online articles using the Scirus scientific information search engine, as well as Google. Search keywords pertaining to epilepsy epidemiology, health care assessment, needs assessment, economic evaluation, and health planning were used alone and in combination. In addition, all issues of Epilepsia and Epilepsy Research since 1980 were reviewed for relevant titles.

To get decent figures from a survey, we have to ask the same questions in every country, in the developing and developed world, using the same criteria if we want a relatively reliable result to work from. These guys have google searched a whole bunch of people asking different questions, added them up, and made some numbers do stuff. It just ain't a reliable survey. I am stumped as to why they are baffled about the titanic gap between their low and high numbers. To me it's pretty obvious. WHO has done a relatively good survey in their Out of the Shadows program, using one method to create their analysis. Their figures are 1%. It's not the best way to survey epilepsy prevalence in the developing world, but it is the best data we have to date.

It's not that I'm opposed to the idea that epilepsy rates might be high in developing countries. It isn't something I need to or particularly want to believe. It isn't even something I have an opinion on. But either we're talking about evidence based views, or we are not. And this stuff you've produced is not evidence. It isn't anything you can now state as fact to support your gut origins theory. I get that you probably have a lot riding on this scenario turning out the way you're needing it to for your business. And that worries me. I genuinely wish that you were working on something that people would believe enough to change the way they live. But people just don't care enough. They think cell phones give them cancer, and they still use cell phones. Anyway, that's neither here nor there.

Let's put it this way: I don't think that there is anything that would change your mind. And there's the rub. If you're so determined to believe something that you're willing to hunt for poor statistics in order to replace good statistics, just tell me that you're not interested in the evidence, and we needn't discuss it any further.

 

[Keith]

Of course, I'm quite interested in the evidence and thanks for fleshing-out how shaky the evidence is at this time. Regarding my business, I've yet to earn any money in the fields of sanitation or epilepsy. But I've invested a lot of time, energy and passion with hope to make these subjects my profession some day.

I'm actually in the waste recycling business since 1989. Before then in the 1980s I was a UNICEF radio spokesperson talking about diarrheal disease, growth chart monitoring, breast feeding (it's now World Breastfeeding Week!) and immunization for the annual release of State of the World's Children Report. At that time, we never realized the underlying problem was poor sanitation and professionals in the field are only just beginning to realize it today. So, now I've been attempting to reinvent my career by marrying interests in health and environment, not so easily done.

 

[kirsten]

Your business has been around for three years, so I'm curious as to what you consider to be the field of epilepsy, and what kind of business you're trying to build? On the outside, it seems as though you're selling dry composting, and you're using the microbe issue to highlight the need to move away from water based sanitation because you believe it's giving the world epilepsy. Is that correct? You'll have to forgive me for my terminology. This isn't a field I know a thing about.

Have you ever considered doing a course to help you get to know what you're looking at with your research? This is a good one.

https://class.stanford.edu/courses/...412734fd5ca/80a46082906e4076861828203fa4401c/

 

[masterjen]

Keith - much of what you say is interesting, and perhaps you are on to something, I don't know. But when you provide statistics that are shaky, misinterpreted and/or over-applied, your ideas and suggestions lose credibility. I have no idea what your educational background is but generally if one is involved in research, it is mandatory to take a statistical course in order to learn how to understand, interpret and apply statistical information in research papers. And some of the most important things taught in these courses is: before attempting to present your hypothesis as fact, to always look for studies that follow the proper scientific method (including use of control groups), is applicable to the population you want to apply the information to, and most importantly is to also analyze and present those studies that refute your hypothesis.

Every researcher in the scientific community knows that his/her deas and studies will be picked apart and microscopically examined to look for any errors and misinterpretations, and when this happens too often, that researcher loses all credibility with colleagues.

You are not the first one to have attempted to make the connections between "gut and brain"; why not affiliate yourself with a university or research facility, and obtain the tools and resources you need to really understand these scientific studies you are reading about, get assistance to conduct your own research, and discover if you can help the epilepsy community with your ideas?

 

[Keith]

I'm not directly involved in research and don't intend to be. But I'd like to be involved in stirring interest in gut-origin of epilepsy among researchers and that's why this thread is so lengthy. It's been suggested it's possible researchers will read this thread and be inspired.

And I've had some success in inspiring microbiome research papers to be published. I'm acting as a lobbyist of sorts. If I were to ever be directly involved in the field of epilepsy, it might be as a certified health coach.

My goal here is to open some eyes, learn from others and, hopefully, help a few people and animals suffering seizure disorder.