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Researchers personal motivations

Persimmon

Senior Member
Messages
135
From what I've read, each of the following ME/CFS researchers became involved as a direct consequence of personal experience. Maybe the list is incomplete?

Martin Lerner
- Contracted ME/CFS himself
Leonard Jason
- Contracted it himself
Fred Friedberg
- Contracted it himself
Byron Hyde
- His daughter contracted it
Lucinda Bateman
- Her sister contracted what appeared to be ME/CFS (was it?)
John Chia
- His son contracted it (aged 14)
Kenneth Friedman
- His daughter contracted it (aged 17)

It's perhaps not coincidental that this list includes some of the most important and the most outspoken of ME/CFS researchers.

I suspect that for most diseases, the proportion of researchers motivated by personal experience would be far lower.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Raymond Perrin (osteopath)
- wife had it - also was treating someone for a back problem with lymphatic drainage massage and ME symptoms improved

Andrew Wright - friend had it

Derek Enlander - friend had it
 

Enid

Senior Member
Messages
3,309
Location
UK
Many more exposed to outbreaks in their professional capacities and ceased to give up on a recogniseable illness perhaps.
 

SOC

Senior Member
Messages
7,849
Many more exposed to outbreaks in their professional capacities and ceased to give up on a recogniseable illness perhaps.

I don't know about "many", but that certainly applies to Dr Petersen and Dr Bell.
 

Persimmon

Senior Member
Messages
135
What is the story behind
Dr. Myhill?
Dr. Montoya?
Rich Vank?

Don't know about the others, but Dr Montoya was apparently motivated by clinical experience.
He made this statement last year:
I think that we often forget why we went into medicine. We didnt go to medicine for fame or money; we went to medicine because of the internal drive to decrease suffering in people, and thats - what actually led me to join the challenge of trying to understand what CFS was, was seeing patients that were showing up in the offices at Stanford..."

If I understand correctly, clinicians at Stanford were barred from having ME/CFS patients prior to 2004. I presume it was Dr Montoya who got this policy changed, as he was treating patients for ME/CFS by February 2004. Is anyone able to confirm / correct this?

******

Does anyone know about Tony Komaroff?
(Was he already interested prior to his initial contact with Petersen & Chaney?)

Does anyone know about Nancy Klimas?

Does anyone know about Malcolm Hooper?
 

Persimmon

Senior Member
Messages
135
UPDATED LIST:

(1.) Initially Motivated by Personal Experience:
Martin Lerner
- Contracted ME/CFS himself
Leonard Jason
- Contracted it himself
Fred Friedberg
- Contracted it himself
Sarah Myhill
- Contracted it herself
Byron Hyde
- His daughter contracted it
Lucinda Bateman
- Her sister contracted what appeared to be ME/CFS (was it?)
John Chia
- His son contracted it (aged 14)
Kenneth Friedman
- His daughter contracted it (aged 17)
Kenny de Meirleir
- His daughter contracted it
Derek Enlander
- A childhood friend contracted it & asked him to help

(2.) Initially Motivated by Clinical Experience
Jose Montoya (sporadic cases at Stanford clinic)
David Bell (Lyndonville outbreak)
Dan Petersen (Incline Village outbreak)
Paul Chaney (Incline Village outbreak)
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
According

According to Osler's Web and her own descriptions, Dr. Klimas had a patient come in one day who had been to many physicians. She had doctors suggest all kinds of cra_y things. The lady asked that Klimas check her immune system. Klimas tried to brush her off, suggest she see another physician. Lady pleaded.

So, Klimas ran some tests. She was researching AIDS at the time, so the lab she used did very thorough tests that even other immunologists weren't running. The lab worker called Klimas back and told the results. It was opposite of AIDS, that is the part of immune system that in AIDS is down was high in this patient and vice versa. Klimas told the lady that she couldn't say what she had, but it was an immune system problem. How Klimas connected it to CFS or what other clinicians were seeing, I don't know. But, her interest started then and has not waned since. Of course, once word got out, she was flooded with patients.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
As for Dr. Bateman, yes, her sister had ME/CFS. Her sister later developed lymphoma. And her sister died in something connected to the lymphoma. Forgive me, as my memory is not clear on the details. I don't want to put out something inaccurate, even if I say I am not sure. I think I remember the connection, but I am not sure. So I won't say. But it was connected to lymphoma.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Heroes

I would like to say that I really appreciate these physicians who have made great sacrifice for us as a result of having personal experience with the disease. We need them, and it is not easy.

But I think the heroes are those who have no personal gain and yet still choose the difficult road of caring for ME/CFS patients and researching this disease.

The costs are enormous: sneers from peers, low income because our visits take so long, obstacles to get research money, and then obstacles to get it published, and much more.

Dr. Peterson had to deal with damage to his car and bad talk from his town and peers in the town. It was so much, Cheney left, only to find ME/CFS patients flocked to him in North Carolina.

These are heroes, martyrs by choice.

I hope one day that someone will do a movie on this. I think the story should tell it from Dr. Peterson's point of view. His life story would be fascinating.

Tina
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
According to Osler's Web and her own descriptions, Dr. Klimas had a patient come in one day who had been to many physicians. She had doctors suggest all kinds of cra_y things. The lady asked that Klimas check her immune system. Klimas tried to brush her off, suggest she see another physician. Lady pleaded.

So, Klimas ran some tests. She was researching AIDS at the time, so the lab she used did very thorough tests that even other immunologists weren't running. The lab worker called Klimas back and told the results. It was opposite of AIDS, that is the part of immune system that in AIDS is down was high in this patient and vice versa. Klimas told the lady that she couldn't say what she had, but it was an immune system problem. How Klimas connected it to CFS or what other clinicians were seeing, I don't know. But, her interest started then and has not waned since. Of course, once word got out, she was flooded with patients.

This lady should be commended for her effort. She should get a medal for being so persistent.
I wish I would have her drive and stop doubting that what I have is very serious.
 
Messages
2,562
Location
US
Dr Jamie Deckoff-Jones - had it herself (not completely recovered but able to see patients now) and daughter had it too (not completely recovered either but much better)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This pattern of most of the specialists having an interest in ME/CFS also follows with the less known ones as well.

One of my CFS specialists had it himself (he's now deceased, he was elderly when I saw him) and Ive heard about another dr in my state which many ME/CFS ones see, which also has a personal connection to this illness (it was either herself or her child who had it)