Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Tue 16 Sep 2014 5:46

velvetmagnetta wrote:
Doesn't Russia and the surrounding area have different races/ethnicities?
What about the Middle East? Are they considered Afro-European? Is "Arab" a race? How about "Serb"?
I just looked up Russia with regard to race/ethnicity, and I doubt that we’ll need or want to distinguish between the 185+ ethnicities for Lyme disease survey purposes:

http://en.wikipedia.org/wiki/Ethnic_groups_in_Russia
Russia is a multi-national state with over 185 ethnic groups designated as nationalities, population of these groups varying enormously, from millions in case of e.g. Russians and Tatars to under 10,000 in the case of Samis and Kets.[1]
http://en.wikipedia.org/wiki/Serbs
The Serbs are a South Slavic nation and ethnic group native to the Balkans.
As far as the Middle East, there are ongoing discussions about this. Here is just one example:

http://www.pewresearch.org/fact-tank/20 ... -category/

snippet:
People of Middle Eastern and North African descent have historically identified themselves as white on census forms. But during the 2010 census, activists launched a campaign that urged people to check “some other race” on the form and write in their ancestry. The campaign’s slogan was: “Check it right; you ain’t white!”

[snip]

“We’re trying to develop a (race and ethnicity) question that satisfies everyone,” said Roberto Ramirez, a Census official who discussed the issue on a recent visit to the Pew Research Center. “It’s a very political endeavor. It always has been.”
http://www.levantinecenter.org/cultures ... ally-white
In his book, Whitewashed, John Tehranian, a law professor at Chapman University in Orange, begins with a discussion on the social and legal construction of whiteness and race. Either consciously or unconsciously, many people believe that our current "race" categories are born from a precise genetic or scientific formula. In a well-documented and persuasive analytical framework, Tehranian debunks any theory that would advance "race" as a reflection of scientific theory. He provides a detailed historical picture of how the concept of race is socially constructed and the way it has been redefined and used throughout history as a tool to exclude minority groups from the social and political system.
http://www.cotf.edu/earthinfo/meast/mepeo.html
The peoples of the Middle East can be differentiated on the basis of their ethnicity, religion, and national identity.

[snip]

While ethnic and religious identities are important in the Middle East, people often have a strong sense of nationalism (a strong attachment to the state) that is connected to their national identity. These individuals often place more emphasis on their country of origin than their ethnic or religious background.
While certain races and ethnic groups do in fact experience discrimination/persecution of one kind or another, I have to wonder if it’s something we really want to tackle in this Lyme disease survey.

http://en.wikipedia.org/wiki/Race_(huma ... ification)
There is a wide consensus that the racial categories that are common in everyday usage are socially constructed, and that racial groups cannot be biologically defined.[17][18][19][20][21][22] Nonetheless, some scholars argue that racial categories obviously correlate with biological traits (e.g. phenotype) to some degree, and that certain genetic markers have varying frequencies among human populations, some of which correspond more or less to traditional racial groupings. For this reason there is no current consensus about whether racial categories can be considered to have significance for understanding human genetic variation.[23]
What do other folks think?

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Tue 16 Sep 2014 7:46

velvetmagnetta,

The State of New Jersey has compiled a list of races/ethnicities that just might suit your purposes:

http://www.state.nj.us/health/chs/docum ... andard.pdf
OMB 15 Race/Ethnicity Categories

American Indian or Alaska Native
Asian
Black or African American
Hispanic or Latino
Native Hawaiian or Other Pacific Islander
White
Other
Hispanic or Latino sub-ethnic groups

• Central American or South American
• Cuban
• Dominican
• Mexican, Mexican American, Chicano
• Other Spanish or Latino
• Puerto Rican
Asian sub-ethnic groups

• Asian Indian
• Chinese
• Filipino
• Japanese
• Korean
• Vietnamese
• Other Asian
Native Hawaiian/ Pacific Islander

sub-ethnic groups

• Native Hawaiian
• Guamian or Chamorro
• Samoan
• Other Pacific Islander
• Other Asian
RACE

American Indian or Alaska Native: A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment.

Asian: A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent, including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand and Vietnam.

Black or African American: A person having origins in any of the black racial groups of Africa.

Native Hawaiian or Other Pacific Islander: A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Tue 16 Sep 2014 17:02

RitA! Wow. Thank you for all of that!

I'm putting in the Thyroid questions as you suggested - under "Endocrine Function" and just after "Immunology". That's a really good name and place for them. Maybe others will add some thyroid or other endocrine system tests they've had.

The reason I have "Jewish" as a race/ethnicity is because my friend has a disease that is more common among Jewish people than other populations. I want to see if we can gather any evidence of a genetic component to the severity of Lyme symptoms.

I realize that it is a religion, and that we may not even be able to list "Jewish" as a possible race/ethnicity. But if I were Jewish and planning on having kids, I would want to check all the possible genetic disorders. As you can see here:

http://www.jewishgeneticdiseases.org/je ... -diseases/

this data point could be very important. It does look like Ashkenazi and Sephardic/Mizrahi Diseases are different, though.

Maybe if we say why we're asking, it would be OK?

Also, thank you for the New Jersey info, RitA!

I don't think we need to break them down into their sub-categories, though. I think that would be a bit much. And I can't believe there isn't a predominant Russian ethnicity?

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: Patient-Formulated Lyme Disease Survey Draft

Post by dlf » Tue 16 Sep 2014 17:16

The following is copied from a DNA genetics family tree testing site that categorizes origins based on genetics. They recently renamed their categories to make them less cumbersome: But here are the categories they have settled on and the background as to their history.
myOrigins attempts to reduce the wild complexity of your genealogy to the major historical-genetic themes which arc through the life of our species since its emergence 100,000 years ago on the plains of Africa. Each of our 22 clusters describe a vivid and critical color on the palette from which history has drawn the brushstrokes which form the complexity that is your own genome. Though we are all different and distinct, we are also drawn from the same fundamental elements.

The explanatory narratives in myOrigins attempt to shed some detailed light upon each of the threads which we have highlighted in your genetic code. Though the discrete elements are common to all humans, the weight you give to each element is unique to you. Each individual therefore receives a narrative fabric tailored to their own personal history, a story stitched together from bits of DNA.

We’ve listed the population clusters and accompanying narratives below. You can find the myOrigins walk-through here.

Primary Population Clusters

Western and Central Europe
East Central Africa
Eastern Europe
Native American
North Africa
Northeast Asia
Central Asia
Southern Europe
West Africa
British Isles
Finland and Northern Siberia
Scandinavia
Asia Minor
Ashkenazi Diaspora
South-Central Africa
Southeast Asia
South Asia
Eastern Middle East
Blended Population Clusters

British Isles, Western & Central Europe
Eastern, Western & Central Europe
Scandinavia, Western & Central Europe
Southern, Western & Central Europe
Primary Population Cluster Descriptions

Asia Minor

The Asia Minor group is present from South Asia, Turkey, the Caucasus, and along the shores of the Mediterranean Sea. It was home to early hunter-gatherers and farmers. It has a deep history and connects to many lineages. It is the mark of those who moved east to west, and back again, along what would become the Silk Road. The Asia Minor group is connected to the oldest groups of modern humans. As early humans left Africa, they settled in this area. The hunter-gatherers were eventually replaced by the first farmers.

Early recorded history confirms several cultures lived in this area and left their mark, such as the Phrygians, the Hurrians, the Hittites, the Hatti, and the Armenians. Later, the Turks swept down from Asia and brought people from the Asian Northeast group. Likewise, the Arab expansion brought members of the Eastern Eastern Middle East group to the southern borders of the Asia Minor. We find that it is the strongest in Turks from the Fertile Crescent and people from the Caucasus. Closed social groups, such as the Druze and Assyrians, also have clear signatures of the Asia Minor group, suggesting that their genes are native to the region.

Northeast Asia

Northeast Asia has a deep ancestry and is home to the first settlers of Eastern Eurasia. This is a widespread population, found in China, Japan, Korea, Siberia, and even in New World Amerindian populations. This cluster characterizes people from a wide variety of backgrounds, including grain farmers nestled against the shores of the East China Sea and warriors who survived the cold deserts of Mongolia. It flows south with the journeys of the Han and the Tibetans, and west with the gallop of the horses of the Turks.

History tells us that this cluster was isolated and developed by itself, beginning about 40,000 years ago. The primary populations were hunters, herders, and later, farmers. Connections to the populations from the West are only in the last 5,000 years. This means the genetic signature of Northeast Asia is distinctive. We can see influences from the early rice farmers of Korea, the Tungusic hunters, the Han of China, the mountaineers and lowlanders of Tibet, and the Japanese. With the rise of trade and globalization, this cluster has spread to Southeast Asia and the New World, bringing Northeast Asia to new corners of the world.

Native American

The Native American cluster is a distinct and compact cluster which developed at the end of the Pleistocene in Siberia, then expanded across the Bering Land Bridge. Like so many clusters, it is a hybrid. Located from in the Canadian Yukon and south to Patagonia, the people of the New World are a unique expression of human genetic variation. They are at the farthest edge of human migrations out of Africa.

The Native American cluster is closest to those of East Asia, but has deep connections to peoples in Europe as well. This cluster experienced isolation in the New World and had a small originating population. This isolation and small founding population allowed them to remain similar genetically until the arrival of European settlers and the African slave trade.

Even in regions where Native American genetics have remained the same, there is evidence of admixture with Europeans and Africans. In the Northern regions of the Americas and in Deep South of the United States, the native populations have been all but exterminated or absorbed into the settler populations from Europe. A world that once belonged to the Native Americans is now owned by others.

East-Central Africa

The East-Central Africa cluster is an ancient one which emerged in the north eastern part of Sub-Saharan Africa. The distinctive feature of this cluster is its close association with herding that allowed these pastoralists to exist in harmony with their Bantu farmer neighbors.

Stretching from Sudan and south toward Tanzania, these people arrived as herders over the past few thousand years. They coexisted with, and were often politically dominant, over the Bantus. On the northern edge of the Sudan, they seem to be indigenous. The also have connections to Eurasian populations who expanded out of the Middle East.

Most of the ancestors of the East-Central Africans never left Africa. No doubt their forebears fled south from the Green Sahara. Populations descended from Middle Eastern farmers were absorbed, and eventually the original hunter-gatherers of East Africa gave way to the pastoralists on the one hand, and the Bantu farmers on the other. Others moved east into the Horn of Africa, and co-mingled with Semitic peoples from the Arabian Peninsula. Over time, this admixture gave rise to the populations of Ethiopia and Somalia.

Southeast Asia

The great rice cultures from Shanghai south to the islands of Indonesia are the center of Southeast Asia. This cluster belongs to the Burmans, Thai, Khmer, and Vietnamese, who live in the bottomlands of mainland Southeast Asia. They have moved south, east, and west out of Taiwan and into Oceania, Madagascar, and even as far as Easter Island. This cluster may also be found along the edges of South Asia, and north among the peoples of the Yellow River Plain because of the migrations of the Han Chinese.

Close to Northeast Asia, this cluster is the result of the arrival of farmers to Southeast Asia and brave sailors to the Indian and Pacific Oceans. In China, it is a substantial presence found alongside Northeast Asia. Southeast Asia defines a north-south axis of ancestry and kinship. The cluster absorbed its genetic ancestry from the indigenous populations and is a close sister to the Northeast Asia cluster. As the refugees of the Chinese Diaspora escape the chaos of Southeast Asia, this cluster continues to spread into the rest of the world.

Eastern Middle East

The peoples of Eastern Middle East ancestry are at the roots of civilization. They developed in the Persian Gulf north toward the Zagros Mountains. They gave rise to the Arabs, and were essential to the emergence of Iran. Their reach extends toward Africa and Asia due to trade routes around the Indian Ocean. This is a cluster at the center of history, and quite often the driver of events.

Eastern Middle East has its beginnings in the cultural revolution caused by agriculture. Its second act came with the camel, which opened up the desolation of the desert to easier travel. This ease of travel allowed the message of Muhammad to spread, which sent a thousand tribes streaming in all directions. This cluster has seen the genetic influence of many groups, such as the Babylonians, the Assyrians, and finally the Persians. The connections between the nations around the Gulf remains despite divisions over language and religion. The shared ties are deep and extend out toward a diaspora which is the echo of historical events long forgotten. It is a sister to the Asia Minor group.

Central Asia

The Central Asia cluster can be found across a large band in the center of the Eurasian continent. It travels from the north of Europe south toward the narrow base of the Indian subcontinent. Within South Asia, it is the partner to the Indian Tectonic cluster. Across the center of Eurasia, it highlights the ancient influence of the Iranian nomads, Scythians, Sarmatians, and Cimmerians.

As early farmers moved west out of the hills of the Levant nearly 10,000 years ago, they mostly went into Europe and North Africa. The ancestors of the Central Asia group, however, cautiously explored their possibilities to the east. They came into the light of history as the Persians, Sogdians, and Afghans, and have always had a hand on the turning points of history between the west and the east.
With the movement of millions from the Indian subcontinent, the Central Asia cluster has appeared in the Pacific, the New World, and Southeast Asia. Millions of displaced Afghans have also brought it west into Iran, and reinforced it in Pakistan

British Isles

The British Isles cluster includes all European Islands from the far north and down south to the Azores Islands off the coast of Spain, though it’s especially typical of Ireland. The continuous mixing of European populations means that this group is also present in lesser amounts on the mainland. Genetically close to the Western and Central Europe and Scandinavia clusters, British Isles has had an impact on the demography of the world because of the explosion of population in the Anglosphere over the past few centuries.

The farmers came to Britain late, but when they came they brought great change. The hunters were assimilated by the farmer. This admixture caused the British Isles cluster as we know it to become a hybrid of farmer and hunter. Perhaps due to its isolation and strategic placement, the major powers in the world and throughout history have wanted to rule the islands. From Caesar to the Irish king Niall of the Nine Hostages, we see the wide variety of genetic influence from the Celts, Picts, Vikings, Normans and French.

Western and Central Europe

The Western and Central Europe cluster combines nearly all of the threads of European genetic history into one. This cluster goes from the Bay of Biscay near Spain, toward the Pripet Marshes of western Russia, to the coastal plain of Northern Europe. The hunter-gatherer, farmer, and intruder from the steppes were forged together as one people. The French and the German were created by the intersection between the civilized and the barbarian during antiquity. With this diverse ancestry across the uniform plain, a relatively unified cluster was born.

Western and Central Europe represents the diverse groups brought together over the past 5,000 years, as Germans, Celts, and Slavs have moved in with their cattle, and the Romans brought their mills and cities. This cluster is common among many populations with Northern European heritage. Germanic migrations after the fall of Rome guaranteed its presence in the south. The people on the European Coastal Plain of Western and Central Europe are at the heart of recent history. Being the engines behind the Great Powers of the age, they became the dominant actors in colonization of the world.

Scandinavia

The people of Scandinavia thought of their homeland as an island because it is relatively isolated from the rest of the world by the Baltic and other seas. This isolation and later association with the Finnic peoples, however, have changed them in ways that are genetically clear. A sister cluster to Western and Central Europe and British Isles, the Scandinavia cluster has developed in moderate seclusion, influenced by the arctic heritage it shares with those from the Finland and Northern Siberia cluster.

Its history is rooted in the original hunters of Europe and the late arrival of farmers only about 5,000 years ago. Members of this cluster are kin to other Europeans of the north. The migrations of the Norse spread the Scandinavia cluster west and east. As the Vikings expanded from the south of the Scandinavian region, this cluster absorbed Lapps and other people who were exemplars of Finland and Northern Siberia. An expansion over the past 2,000 years has brought this heritage from the nearer shores of continental and Atlantic Europe, all the way to the plains of the Dakotas in the United States.

South Asia

The South Asia cluster reflects the deep-rooted population of the Indian peninsula. Located primarily in the Indian subcontinent, it tapers off rapidly as to the west and east, reflecting its distinct historical heritage. It consists of India, Pakistan, Bangladesh, Nepal, Sri Lanka, Bhutan, and Afghanistan.

Derived from a mixture of deep-rooted indigenous populations, the South Asia heritage is a hybrid one which goes back to the arrival of modern humans from Africa roughly 50,000 years ago. It includes later peoples coming from the north and west, including the Indo-Aryans most recently. The origins of the Indian caste system likely date to the last 4,000 years, as this blend became the closed cultural groups we see today.
There is a wide variation in ancestral division north to south, east to west, and high caste to low caste with South Asia. The ancient South and West Eurasian heritage is what unites South Asians and is found nowhere else in the world.

Ashkenazi Diaspora

The Ashkenazi Diaspora cluster has been scattered around the world because of the demands of history. Their ancestry is rooted in the ancient Near East, but the Ashkenazi Diaspora has combined during its history with a European heritage.

While Judaism is a religion, the Jewish people are also a nation. Modern Jews have diversified into numerous branches, such as the Ashkenazi, Sephardi, and Mizrahi, as well as odds and ends such as the Bene and Beta Israel. Unifying many of these populations are genetic commonalities, likely resulting from a common Middle Eastern ancestry. This combination of Middle Eastern and European is found in other groups, and many of them exhibit signatures of Ashkenazi Diaspora, but it is not common descent.

The Ashkenazi Diaspora puts a particular focus on the Ashkenazi Jews, who are the majority of the world’s Jewish population today. Derived from populations located within Central Europe, these Jews are now scattered across the world, with the largest concentrations in Israel and the United States.
South-Central Africa

The most distinctive and separated of clusters, South-Central Africa is one we can suggest never left its homeland. It occupies humankind’s ancient stomping grounds. A thin substrate across much of Sub-Saharan Africa, the South-Central Africa cluster peaks in the southern regions where agricultural presence is minimal. It is the oldest of the old and includes the heritage of the most ancient of lineages. Members of the South-Central Africa group are the earliest human hunter-gatherers, seen today primarily in the Mbuti Pygmies of the Congo. Limited to Africa, its recent history has been one of decline and assimilation.

It is cliché to say the Bushmen are the most ancient of human lineages. More accurate is the reality that they are the first branch off from all others. Where in other locales one might argue the arrival of modern humans at a particular time, here we are faced by a case where they were always there. Though rarely dominant in any individual, South-Central Africa’s widespread distribution indicates how pervasive it was until recently.

West Africa

Dominated by West African and Bantu populations, the West Africa cluster is deeply rooted in the African continent, reaching more than 100,000 years in the past. It takes up most of Sub-Saharan Africa. This is due to expansions that took place as part of a shift to farming. It is also found in African Diaspora groups, such as African Americans. There have been subtle indications that some of these populations have been affected by back-to-Africa migration, unlike their hunter-gatherer neighbors. The split between this cluster and the hunter-gatherers of the deep forests and open deserts dates back to the “Out of Africa” event.

For the West Africa cluster, farming began in eastern Nigeria. It quickly swept east, south, and then southeast. Within the last 2,000 years, Bantu farmers spread to the southern tip of Africa. The migrations reshaped the genetic landscape of most of Africa in the process. There was admixture with resident populations. This, along with Arab slavery in the Middle Ages and New World slavery in more recent history, has caused the West Africa group to spread around the world.

North Africa

The North African cluster is rooted in the nations of Morocco, Algeria, and Tunisia. One of the most ancient and distinct populations in the world, its influence goes south into Sub-Saharan Africa and east toward the Middle East, because of Afro-Asiatic connections. To the North, the Moorish and Roman connections have brought pieces of the cluster into the Mediterranean. Though geographically constrained, this cluster has been at the heart of events in the history of the Western world.

This group grows out of ancient hunter-gatherers, farmers from the Middle East, and refugees from the Green Sahara. Exemplified by the Berber, the people of North Africa have given rise to great empires which push toward the Pyrenees, south to Timbuktu, and east back to the heart of the world of Islam. Its influence can be stamped upon the Sephardic Jews who have come from the cities of Morocco. Though birthed along the shores of the Roman sea, the sailors of the great bleak Sahara have brought North Africa to the lush African shores.

Finland and Northern Siberia

The world is not such a wide place at the top and the bottom. The Finland and Northern Siberia cluster began around the arctic as hunter-gatherer peoples. They have carried their genes down to the modern era. The Finland and Northern Siberia cluster stretches from Lappland east to Greenland. Though genetically diverse, the root of many of these populations is a genetic signature found most often in Finnic peoples.

These are the descendants of hunter-gatherers who withstood the push of the farmers. They adapted, and flourished, in a new age. Like the Bering Expansion, this cluster goes beyond conventional divisions, and has clear connections with both east and west. Even the New World is connected to Finland and Northern Siberia due to their shared kinship with ancient Siberia.

Humans pushed into the deep north only within the last 30,000 years, going where no Neanderthal had dared. With connections to populations in the south, the northerners maintained long term lateral connections and developed a coherence as the ice retreated. Finland and Northern Siberia has its roots with Saami hunters and fishers, as well as Uralic, Russian, Swedish, and even Scandinavian ancestries.

Southern Europe

The Southern Europe cluster is a distinct European cluster. It is situated in the southwest of Europe from Spain to Greece. Its people are a mix of the first hunter-gatherers to reach Europe and later migrations from Western Eurasia. There were two waves into the area: first the farmers of the Middle East and later the Roman Empire.

A long history of traveling merchants and seafarers shaped this group. The great empires of Rome and Greece brought it to distant lands. They also brought a second wave of Western Eurasian influence into the cluster. Its modern geography speaks to the history of those who moved, either willingly or in chains, under the Roman Empire. Because of this, the cluster’s signature is strongest in the western part of the Mediterranean. It is particularly strong on the isolated island of Sardinia. It reaches upwards to the British Islands, as well as east into modern Turkey.

They have the same genetic origin as those who reached north to what is now Sweden. While the culture survived there, the genetic signature was largely replaced by later migrations.

Eastern Europe

The Eastern Europe cluster is the dominant group between the tundra and the steppe in Eurasia’s northwest. They come from the area where the North European Coastal Plain joins the forests of Central Siberia. This ancestry is seen across many Eurasian groups. It is most often associated with Slavic and Baltic cultures. It has deep connections with the migrations of nomads from the steppes in Iran, who also carried evidence of Central Asia. Fundamentally European as it faces east, expanding outward from there.

Members of the Eastern Europe cluster are mostly the same hunter-gatherers who moved north and became the Finland and Northern Siberia people. Their ancestors married and had families with the farmers who pushed out of the Near East, and associated with the Asia Minor cluster. The Eastern Europe cluster is a combination of Middle Eastern farmer, Western European hunter, and Siberian nomad.

Recorded history tells us that many cultures have a part in this cluster, such as the Slavs, Germans, Polish, Bohemians, Bulgarians, Russians, Scandinavians, and Finnish.

Blended Population Cluster Descriptions

British Isles, Western & Central Europe

Though water has separated the Isles from the mainland for thousands of years, that has not resulted in the cessation of all movement. Historically attested in migrations such as that of the Saxons, Angles, and Jutes, the inflow of continental genes into the Isles is one of the primary reasons that a composite cluster which synthesizes the Western European cluster components is inevitable. Not to mention back migration to the continent in the form of populations such as the Celts of Brittany, who were refugees from Wales and Cornwall in the early medieval period.

This cluster is likely to show up the further south and east one goes in England, as it is in this region that the genetic influence of Anglo-Saxons and assorted outsiders was stronger because of historic connections to the European mainland.

Scandinavia, Western & Central Europe

As the North European plain aside the North Sea and Baltic region tapers off into the Jutland peninsula Central Europe becomes the North. Where one ends and the other begins is in some ways a matter of debate. Where Denmark begins and Germany ends has been more the outcome of historical coincidence than any geographic or genetic fact. The Scandinavia, Western & Central Europe cluster is a composite which acknowledges that many people bear the hallmarks of straddling these groups, which are genetically very near each other.

People whose ancestors hail from Denmark or the broad plains of Saxony in northern Germany often exhibit affinity with this cluster, due to the recent history of migration south, as well as the deep history of settlement of Scandinavia from Central Europe. This composite is the northern face of Western and Central Europe, and rightly acknowledges the connection of the German-speaking peoples which span different genetic clusters.

Southern, Western & Central Europe

Separated by a series of mountains and highlands from the cold and misty lands of Northern Europe, the sunny coasts and highlands which ring the northern Mediterranean coast have been both the source and the sink for human migrations. In the course of the movement of Roman north, and Gaul or German south, a composite cluster at the equipoise of the European Coastal Plain (Western and Central Europe cluster) and the North Mediterranean (Southern Europe) emerged.

The zone where this component is common stretches from France in the west, which spans Mediterranean and Northern Europe, and northern Italy in the southeast, which was once termed “Cisapline Gaul,” in reference to its pre-Roman population. The migration of millions of Southern Europeans due economic growth in France no doubt has enriched this component in that nation in particular, as disparate European threads come together.

Eastern, Western & Central Europe

The domain of the Slavs, who are primary carriers of Eastern Europe cluster, has veered west and south, with occasional retreats in the wake of motivated Romans. As German tribes vacated land in the quest for Roman riches 2,000 years ago, the Slavs filled the vacuum in their wake in the centuries before 1000 A.D. Today the Sorbs in Saxony attest this ancient Diaspora which once extended much further west, while scattered minorities of Germans extend across the swath of land from Romania to the Volga. The composite cluster Eastern, Western & Central Europe is the outcome of the relative lack of genetic barriers in the east of Europe, as well as the mixtures which became the norm as Germans and Slavs tussled for the same territory in the period between the fall of Rome and the great medieval “Drive to the East” of German-speaking peoples.

phyfe
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Tue 16 Sep 2014 20:05

I know I'm not feeling very well right now but in my opinion this is getting totally off track from the original intent of this survey. Maybe we should pull it back in and start looking at eliminating some of the questions. It seems to be too unmanageable the way it is. Just saying....

I hope when Duncan gets his computer fixed he can weigh in on this as well.... :)

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ChronicLyme19
Posts: 564
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Location: NY, USA

Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Wed 17 Sep 2014 1:46

We should just have everyone tested through family tree DNA and call it a day, lol. No messing with culture, ethnicity and religion and all the blurred lines. :)

I agree with Phyfe in that this is getting big, but if it's organized we can always pair it down and break it into different sub chunks depending upon how we want to use it. I still think it's good for a master list, although I'm not as concerned about getting some of the smaller details like the number of states in a given country.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Wed 17 Sep 2014 5:32

I agree that we could probably safely leave out states/provinces/regions for smaller countries, but for very large countries (including the USA and Canada), location can be important data to collect. That said, many people -- and especially those who travel often for business or pleasure -- have no idea whatsoever where they got infected. In some cases, they may not even be able to narrow it down by continent.

While race can make a difference (e.g. a person with dark skin not noticing a rash), I do wonder if it's as relevant for Lyme disease as it is for predisposition to certain genetic diseases. There appears to be more genetic variation within any given race than there is between races from the little I've read about this topic since yesterday.

Another thing that just occurred to me is that labs have different references ranges even for many routine blood tests, so indicating the specific value (as opposed to low, normal or high) may not always be useful. That's especially true for thyroid function tests where the TSH, T3 and T4 results all need to be considered together when determining if a person is hypothyroid or hyperthyroid.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Wed 17 Sep 2014 19:38

Thank you to "Anonymous" - whoever corrected some spelling issues! I hope whoever you are will keep going and editing. This kind of input is much-needed.

Hi RitA - Thank you again for your insights! I don't know how Thyroid test results are listed, but if it's simple a "positive, negative, or indeterminate" result, then that is easy enough.

If the possible test results come out by number, we can make that either a "fill-in" answer, or otherwise, we can create a drop-down menu of all the possible test outcome numbers.

If the test results come back with a number, but has ranges of "positive" or "negative" that those results may fall in, we can include that in the question as well.

More information is better at this point - especially for someone like me who has no idea about thyroid tests! Trying to get questions that I know nothing about into one of Google Forms' question formats is quite challenging to get right!

About the race/ethnicity question - I have my personal doubts that peoples' differing reactions to Lyme and Post-Treatment Lyme stem from their genes, but that's exactly what they are: doubts. I really have no idea. I have read articles supporting that idea. I have taken that HLA hapalotype test. Others have taken the MTHR (sp?) gene test.

We just really don't know - and that's what this questionnaire is for - to try to find some kind of consensus and maybe some statistical correlations. If we don't ask the question at all, we will most certainly not get any information about it!

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Hi Phyfe! Here to get us back on track? Very, VERY good to hear from you again. I was wondering where Duncan was, too!

If anyone wants to (and is able to) go in and slim down, combine, or cut some questions (or even add some) please do so. If you haven't given me an email address so I can add you as an editor, you can still go and edit the documents, it'll just come up as an "edit" and an editor will have to go over your changes and either click "accept" or "deny"

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ChronicLyme19 - about the cities/states/provinces - As long as I can somehow get all the names of these regions, I can include them - it's really easy in Google Forms. I just need to have all the names - which I don't and cannot seem to find. I have put the question out there to try and get people to give me any I missed.

I would like to know where people with Lyme live, where they got bit, and where they were diagnosed. This info can then be crossed-tabulated with other info such as which places are considered Lyme-endemic (or not) with tests were given and the test results.

Maybe we'll find strong evidence for a Lyme-like illness (but with people with consistently negative Lyme blood tests) - or maybe we'll find lots of Lyme in an area previously thought of as non-endemic.

It is easy enough info for sick people filling out the questionnaire to fill in.

CL19, I know you know a lot about many different treatments. Can you get some of those Treatments questions in shape? I've added a bunch of stuff to Treatments - Alternative.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Wed 17 Sep 2014 20:02

velvetmagnetta wrote:Thank you to "Anonymous" - whoever corrected some spelling issues! I hope whoever you are will keep going and editing. This kind of input is much-needed.

Hi RitA - Thank you again for your insights! I don't know how Thyroid test results are listed, but if it's simple a "positive, negative, or indeterminate" result, then that is easy enough.

If the possible test results come out by number, we can make that either a "fill-in" answer, or otherwise, we can create a drop-down menu of all the possible test outcome numbers.

If the test results come back with a number, but has ranges of "positive" or "negative" that those results may fall in, we can include that in the question as well.

More information is better at this point - especially for someone like me who has no idea about thyroid tests! Trying to get questions that I know nothing about into one of Google Forms' question formats is quite challenging to get right!

About the race/ethnicity question - I have my personal doubts that peoples' differing reactions to Lyme and Post-Treatment Lyme stem from their genes, but that's exactly what they are: doubts. I really have no idea. I have read articles supporting that idea. I have taken that HLA hapalotype test. Others have taken the MTHR (sp?) gene test.

We just really don't know - and that's what this questionnaire is for - to try to find some kind of consensus and maybe some statistical correlations. If we don't ask the question at all, we will most certainly not get any information about it!
While I was reviewing the Diagnostics section, I couldn't help but make some very minor changes to spelling and simply forgot to include my LNE member ID. I can almost never detect my own typos, etc. and that's why it's always a good idea to have several pairs of eyes reviewing anything like this.

Unfortunately, thyroid function testing isn't as simple as positive, negative, indeterminate. It's more like low, normal or high -- in combination with two or more other test values -- and that's where it gets complicated. It may simply be too complex to include in this survey, however we could definitely ask if people have been diagnosed with either hypothyroidism or hyperthyroidism and/or an autoimmune thyroid disorder (where people sometimes switch between being hypo- and hyperthyroid). Since thyroid disease is relatively common, knowing whether a person's diagnosis was before or after their Lyme infection would also be relevant information if we're trying to detect patterns.

Having two HLA haplotypes that are both associated with increased risk for autoimmune disease (and specifically MS), I definitely understand where you're coming from. That said, I believe that HLA and MTHFR gene information are much more precise and useful information than race alone when trying to detect meaningful patterns in data. Perhaps we could ask people about any genetic test results that they might be willing to share -- as you have already done for the MTHFR gene test results -- in addition to race.

Edited to add:

As an example of what I'm referring to about thyroid function testing, it's generally agreed (at least by most mainstream endocrinologists) that low TSH + high T3 + high T4 = hyperthyroidism. Similarly, high TSH + low T3 + low T3 = hypothyroidism, but even that is a gross oversimplification because every combination of the 3 test values is possible.

Even I find the following difficult to understand, and it's one of the best summaries I've read in the past few years:

http://www.australianprescriber.com/magazine/34/1/12/5
Thyroid function tests

Robin H Mortimer, Professor, Department of Endocrinology, Royal Brisbane and Women\'s Hospital, and the University of Queensland, Brisbane
Last edited by RitaA on Wed 17 Sep 2014 21:54, edited 3 times in total.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Patient-Formulated Lyme Disease Survey Draft

Post by RitaA » Wed 17 Sep 2014 21:07

velvetmagnetta,
... about the cities/states/provinces - As long as I can somehow get all the names of these regions, I can include them - it's really easy in Google Forms. I just need to have all the names - which I don't and cannot seem to find. I have put the question out there to try and get people to give me any I missed.
Russia has 9 federal districts that may (or may not) be the equivalent of state/province/region and might help to narrow down the location in that country just a bit as far as where a person lives and/or was infected with a tick-borne illness:

http://en.wikipedia.org/wiki/Federal_di ... _of_Russia
The federal districts are groupings of the federal subjects of Russia. Federal districts are not provisioned by the Constitution of Russia and are not the constituent units of the country, but exist purely for the convenience of operation and governing by federal government agencies.
List of federal districts

Central
Southern
Northwestern
Far Eastern
Siberian
Ural
Volga
North Caucasian
Crimean
And yes, we can always delete or trim questions/lists as needed. Gathering the detailed data and questions seems to take a bit longer.

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