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Know Any pwME who went to Brown University?

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Does anyone know any pwME who went to or worked at Brown or lived in Providence, RI? There seems to have been a cluster.

I would like to try to interest my alma mater, Brown to do more on ME at their med school, if possible. A Brown Prof. used to have a "CFS" clinic at a Brown teaching hospital.

Dr. Mikovits said that there was an ME cluster in Rhode Island in the late 80s and early 90s. In Osler's Web it said that Charles Carpenter, a prof at Brown med school ran a "CFS" clinic at Miriam Hospital, a Brown teaching hospital. It doesn't exist anymore, to my knowledge and Prof. Carpenter now studies AIDS. I have emailed him but have not heard back.

There was a big "CFS" conference in Newport, RI in 1988 apparently sponsored in part by Brown.

I and four other people I know of on this forum went to Brown.

They know a couple of other people. I know one.

Six of us, I believe, plus another, below (who died at age 31) were in classes '92 - '96. And incidently, one of whose father (Shah of Iran) died of non-hodgekin's Lymphoma, see below.

http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html

Princess Leila Pahlavi, 31, died on June 10, 2001 of what the newspapers called "the rare disease myalgic encephalomyelitis." The youngest daughter of the late deposed shah of Iran, she was a child when the Ayatollah Khomeini took over country. Leila graduated from Brown University and spent years living in Connecticut. She was a resident of London when she died. Her mother resides in Paris where Leila was buried. Aside from one brother, nobody mentioned "M.E.," but preferred to blame her suffering on "depression," although she had been sick for six years. The physician who prescribed for her in London was being investigated for over prescribing. Cocaine and Seconal was found in her blood.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Thanks - That was very interesting. I might even do some digging just for my curiosity and will be glad to post back if I find anything.
 

5150

Senior Member
Messages
360
Does anyone know any pwME who went to or worked at Brown or lived in Providence, RI? There seems to have been a cluster.

I would like to try to interest my alma mater, Brown to do more on ME at their med school, if possible. A Brown Prof. used to have a "CFS" clinic at a Brown teaching hospital.

Dr. Mikovits said that there was an ME cluster in Rhode Island in the late 80s and early 90s. In Osler's Web it said that Charles Carpenter, a prof at Brown med school ran a "CFS" clinic at Miriam Hospital, a Brown teaching hospital. It doesn't exist anymore, to my knowledge and Prof. Carpenter now studies AIDS. I have emailed him but have not heard back.

There was a big "CFS" conference in Newport, RI in 1988 apparently sponsored in part by Brown.

I and four other people I know of on this forum went to Brown:

[Moderator: Deleted names of those referred to at the request of one of those mentioned as this breaches the privacy of members. Thanks for your understanding, justin]

They know a couple of other people. I know one.

Six of us, I believe, plus another, below (who died at age 31) were in classes '92 - '96. And incidently, one of whose father (Shah of Iran) died of non-hodgekin's Lymphoma, see below.

http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html

Princess Leila Pahlavi, 31, died on June 10, 2001 of what the newspapers called "the rare disease myalgic encephalomyelitis." The youngest daughter of the late deposed shah of Iran, she was a child when the Ayatollah Khomeini took over country. Leila graduated from Brown University and spent years living in Connecticut. She was a resident of London when she died. Her mother resides in Paris where Leila was buried. Aside from one brother, nobody mentioned "M.E.," but preferred to blame her suffering on "depression," although she had been sick for six years. The physician who prescribed for her in London was being investigated for over prescribing. Cocaine and Seconal was found in her blood.

possibly a drug overdose or reaction? two opposing drugs:cocaine=stimulant, seconal=depressant. bad combination

a case of someone who had ME, who also took bad drugs for recreation.

I heard of a cluster that went through UC Santa Cruz about 2000-2002.
dorms, classes, student unions, dining halls--> ideal close quarters for exposure to a contagious virus... much like the casinos of Lake Tahoe and Reno.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Class of '90, right here.

Hmmmmm.

But I didn't become ill until Nov. 2009.

I knew it! The posts were just too incisive!

I didn't get sick until 2002. and i had a girlfriend after college that had ME for less than a year before i met her. so mine probably didn't have to do with Brown either.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
Well, we don't know how long a latency period we may be talking about. 20 years certainly seems like a LONG latency period, but it's not out of the realm of possibility of what's been discussed.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Well, we don't know how long a latency period we may be talking about. 20 years certainly seems like a LONG latency period, but it's not out of the realm of possibility of what's been discussed.

Right. Post-polio syndrome and some encephalitises have very long latencies.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Roger Williams University(20 min south of Brown). Class of 2000. Got sick w mono? sr yr, never recovered.

R.I. has a lot of Lyme. I have heard that the islands off Bristol have stratospherically high rates. A R.I. state report, 2002, even says it's an epidemic in RI and it has the highest rate after Connecticut.

One of the other tick borne diseases has the nickname of Nantucket Fever (according to the amazing book Cure Unknown- a little like an Osler's Web of Lyme) and I used to spend summers there and you'd walk thru the tall grass in flip flops.

I don't know; Nantucket is close to RI, though there weren't a high number of people from RI there.

just musing if any of it is connected.
 

floydguy

Senior Member
Messages
650
R.I. has a lot of Lyme. I have heard that the islands off Bristol have stratospherically high rates. A R.I. state report, 2002, even says it's an epidemic in RI and it has the highest rate after Connecticut.

One of the other tick borne diseases has the nickname of Nantucket Fever (according to the amazing book Cure Unknown- a little like an Osler's Web of Lyme) and I used to spend summers there and you'd walk thru the tall grass in flip flops.

I don't know; Nantucket is close to RI, though there weren't a high number of people from RI there.

just musing if any of it is connected.

I spent summers in Nantucket in the 80s. My first bout was with a mono type illness in 1985. I recovered after some time and then got hit again 20 years later. I really enjoyed ACK. Spent a lot of time partying on the Nobadeer Beach. It's a lot different now.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I spent summers in Nantucket in the 80s. My first bout was with a mono type illness in 1985. I recovered after some time and then got hit again 20 years later. I really enjoyed ACK. Spent a lot of time partying on the Nobadeer Beach. It's a lot different now.

I had mono in 1993, but I was at Harvard for my 'junior year abroad for the less-adventurous'.

I spent the summers on Nantucket in the early 90s. Beach parties every nite! So much fun. I haven't been back since. What's it like now?