Who belongs on a list of the top ME/CFS researchers?

[Patrick*]

I want to put together a newcomer's guide to ME/CFS researchers. I intend to list some of the top researchers and, for each, include a one-paragraph bio summarizing their work.

When I first found this site about a year ago, I was unfamiliar with most of the researchers discussed here, and have gradually built up my knowledge by Googling the names as I came across them. I thought I might save future newcomers the trouble and put together a brief guide. So I'm appealing to the collective wisdom of the board about who should be on the list.

My criteria is simply that anyone listed must be a true researcher, not a clinician alone, and that he/she must contribute significantly to the medical literature. I probably have to limit it to the "heavy weights" to prevent the list from growing out of control. Maybe 10 to 12 people is a good number.

Off the top of my head, I'd probably include: Klimas, Cheney, Peterson, Myhill, Bateman, Montoya, Kogelnik, Chia, and of course the late, great Rich Van Konynenberg.

Who am I missing? We need some Aussies and more Brits on the list. I apologize for my ignorance there.

Do you think Teitelbaum belongs on the list? How about Garth Nicholson?

Thanks in advance for any help you can give. And please don't hesitate to second or third someone's recommendation because if I haven't heard of someone and they only get one vote, I might be less inclined to include them.

 

[Nielk]

I want to put together a newcomer's guide to ME/CFS researchers. I intend to list some of the top researchers and, for each, include a one-paragraph bio summarizing their work.

When I first found this site about a year ago, I was unfamiliar with most of the researchers discussed here, and have gradually built up my knowledge by Googling the names as I came across them. I thought I might save future newcomers the trouble and put together a brief guide. So I'm appealing to the collective wisdom of the board about who should be on the list.

My criteria is simply that anyone listed must be a true researcher, not a clinician alone, and that he/she must contribute significantly to the medical literature. I probably have to limit it to the "heavy weights" to prevent the list from growing out of control. Maybe 10 to 12 people is a good number.

Off the top of my head, I'd probably include: Klimas, Cheney, Peterson, Myhill, Bateman, Montoya, Kogelnik, Chia, and of course the late, great Rich Van Konynenberg.

Who am I missing? We need some Aussies and more Brits on the list. I apologize for my ignorance there.

Do you think Teitelbaum belongs on the list? How about Garth Nicholson?

Thanks in advance for any help you can give. And please don't hesitate to second or third someone's recommendation because if I haven't heard of someone and they only get one vote, I might be less inclined to include them.

What a great idea!

You might want to consider Enlander. Although he is a clinician, he has now the Mt. Sinai research project.

 

[waiting]

All of the above (from PWCalvin and Nielk) plus Staci Stevens (Pacific Fatigue Lab, University of the Pacific).

 

[John Mac]

Here's a list from the ICC

Myalgic Encephalomyelitis: International Consensus Criteria
Bruce M Carruthers, MD, CM, FRCP(C) (coeditor); Independent, Vancouver, B.C., Canada
Marjorie I van de Sande, BEd, GradDip Ed (coeditor); Independent, Calgary, AB, Canada
Kenny L De Meirleir, MD, PhD; Department of Physiology and Medicine, Vrije University of Brussels, Himmunitas Foundation, Brussels, Belgium.
Nancy G Klimas, MD; Department of Medicine ,University of Miami Miller School of Medicine and Miami Veterans Affairs Medical Center, Miami, FL, USA
Gordon Broderick, PhD; Department of Medicine, University of Alberta, Edmonton, AB, Canada
Terry Mitchell, MA, MD, FRCPath; Honorary Consultant for NHS at Peterborough/Cambridge, Lowestoft, Suffolk, United Kingdom.
Don Staines, MBBS, MPH, FAFPHM, FAFOEM; Gold Coast Public Health Unit, Southport, Queensland; Health Sciences and Medicine, Bond University, Robina, Queensland, Australia AC
Peter Powles, MRACP, FRACP, FRCP(C), ABSM; Faculty of Health Sciences, McMaster University and St. Joseph’s Healthcare Hamilton, Hamilton, ON, Canada.
Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH; Independent, Durham, United Kingdom
Rosamund Vallings, MNZM, MB, BS, MRCS, LRCP; Howick Health and Medical Centre, Howick, New Zealand.
Lucinda Bateman, MS, MD; Fatigue Consultation Clinic, Salt Lake Regional Medical Center: adjunct faculty – Internal Medicine, Family Practice, University of Utah, Salt Lake City, UT, USA.
Barbara Baumgarten-Austrheim, MD; ME/CFS Center, Oslo University Hospital HF, Norway. David S Bell, MD, FAAP; Department of Paediatrics, State University of New York, Buffalo, NY.
Nicoletta Carlo-Stella, MD, PhD; Independent, Pavia, Italy
John Chia, MD; Harbor-UCLA Medical Center, University of California, Los Angeles; EV Med Research, Lomita, CA, USA
Austin Darragh, MA, MD, FFSEM. (RCPI, RCSI), FRSHFI Biol I (Hon); University of Limerick, Limerick, Ireland
Daehyun Jo, MD, PhD; Pain Clinic, Konyang University Hospital, Daejeon, Korea
Don Lewis, MD; Donvale Specialist Medical Centre, Donvale, Victoria, Australia
Alan R Light, PhD; Depts or Anesthesiology, Neurobiology and Anatomy,University of Utah, Salt Lake City, Utah, USA.
Sonya Marshall-Gradisbik, PhD; Health Sciences and Medicine, Bond University, Robina, Queensland, Australia.
Ismael Mena, MD; Depart. Medicina Nuclear, Clinica Las Condes, Santiago, Chile
Judy A Mikovits, PhD; Whittemore Peterson Institute, University of Nevada, Reno, NV USA
Kunihisa Miwa, MD, PhD; Miwa Naika Clinic, Toyama, Japan
Modra Murovska, MD, PhD; A. Kirchenstein Institute of Microbiology and Virology, Riga Stradins University, Riga, Latvia,
Martin L Pall, PhD; Department of Biochemistry & Basic Medical Sciences, Washington State University, Portland, OR, USA
Staci Stevens, MA; Department of Sports Sciences, University of the Pacific, Stockton, CA USA.

 

[justy]

Yes to all mentioned so far - and don't forget professor Kenny De Merlier in Belgium, also the work of the oncologists Fluge and Mella in Norway on rituximab. They may not be primarily M.E researchers, but now seem fairly dedicated to teasing out some answers based on the results they have seen with the drug.

I like the idea of your project - where will its home be - at PR?
all the best, Justy.

 

[Mark]

I'm sure there was a thread on this very question, quite some time ago, but can't find it with a quick search. Here are a couple of relevant threads though:

http://forums.phoenixrising.me/index.php?threads/cfs-researchers.5792/

http://forums.phoenixrising.me/inde...ntial-researchers-of-the-last-20-years.17351/

I'll nominate Baraniuk, the Lights, Jason, Kogelnik, Komaroff and Broderick. From the UK: Behan, Kerr, Newton.

 

[leela]

Great suggestions, everyone.

It's uplifting to revisit the list of people who are actively working to solve this.

 

[leela]

Maybe Maes as well?
Just saw the thing about "seconding."
Pretty much everyone listed gets my vote. I'm especially glad to see Kerr there, as I would have otherwise suggested him myself.

 

[Snow Leopard]

Is the focus on the research side or the clinician side?

I think Natelson, Jason and De Meirleir have published the most...

 

[Patrick*]

Thank you for all of the above suggestions.

Jon Mac, I appreciate the list, although I don't think I have the time to research and write a bio for all of those fine people. If there are a few on the ICC list who stand out above the others, please let me know. Your list reminded me that I need to consider Minkovitz.

Justy, I haven't decided where the home will be yet. Probably either a Google document or my blog, which I will then link to from PR if the moderators approve. It will be wherever the formatting looks nicer and cleaner, and possibly wherever I can incorporate pictures.

Snow Leopard, I was thinking I wanted to focus more on researchers, but if a clinician has published a number of papers and is truly a "heavy weight" in the field, then I would include him/her.

 

[Little Bluestem]

In the Great American tradition of always wanting more - how about considering a list of the top ME/CFS clinicians as a future project?

 

[Snow Leopard]

Snow Leopard, I was thinking I wanted to focus more on researchers, but if a clinician has published a number of papers and is truly a "heavy weight" in the field, then I would include him/her.

I was just curious as most of the doctors you listed were on the clinician side rather than the laboratory research side.

 

[Stretched]

I want to put together a newcomer's guide to ME/CFS researchers. I intend to list some of the top researchers and, for each, include a one-paragraph bio summarizing their work.

My criteria is simply that anyone listed must be a true researcher, not a clinician alone, and that he/she must contribute significantly to the medical literature. I probably have to limit it to the "heavy weights" to prevent the list from growing out of control. Maybe 10 to 12 people is a good number.

Off the top of my head, I'd probably include: Klimas, Cheney, Peterson, Myhill, Bateman, Montoya, Kogelnik, Chia, and of course the late, great Rich Van Konynenberg.

Who am I missing? We need some Aussies and more Brits on the list. I apologize for my ignorance there.

Do you think Teitelbaum belongs on the list? How about Garth Nicholson?
.

Please don't put Teitelbaum on any such list. If I saw his name it would make me question the list.

I don't know him and have no personal beef but I have read nearly all his publications AND investigated his 'clinic' in Atlanta, GA. IMO, he belongs somewhere along the lines alternative therapies. True, he's got an MD, but when he started publishing, sic with his book, it was some time after the real researchers had already suffered the pangs of peer review and the ups and downs of publishing real research in very esoteric areas.

I think he used his basic 'any doc' knowledge and his understanding of the then research state to write a book to give him soft credentials to open a 'for profit' series of clinics with some entrepreneur from Texas. I came close to
signing up a number of years back when I was more desperate for some doctor to acknowledge my illness. However, after vigorously reviewing the contracts and the setup I thought better, and in retrospect even more so.

Finally, while he fronts an understanding of then CFS and claims to have had it, again there's no way IMO that
he could carry on a business and run the celebrity circuit if he "had" CFS as I and others have experienced it.

I wouldn't even send another PWC to one of his clinics, nor to him unless s/he insisted on some basic health
guidelines to stay healthy.

 

[searcher]

Hey PWC-
I want to second Snow Leopard's suggestion of Natelson-- he's definitely a heavy-hitter in CFS research. I don't know if I would consider Cheney a top researcher- he does research on his patients but I am not sure how much he publishes.

 

[heapsreal]

What about Dr Phoenix Rising, how much experience and anecdotel evidence is there on here. We make the average or even above average GP look like a dumb A-s when it comes to cfs/me

 

[beaker]

Komaroff, Hanson, Russetti. Jay Levy. Bastien ( not sure how active she still is. may need to be in the retired catagory)
Rowe, Calkins, Julian Stewart. Allibashi. Lerner, Peckerman.
of course, many of the folks listed on this thread are already have nice bios on wiki. -- and you could save time and energy by linking to that page instead of reinventing the wheel.

There are also those that have contributed in the past , but are no longer active in research either b/c of retirement, health or death, or just got burned out and left the field. and yet their work has had a lasting contribution and should be included in any directory for newbies to know., Streeten(deceased), DeFreitas (r), Bell(r),Jay Goldstein ( d) , Loveless (left the field) , Jessop( left the field) , Stratton( left field?) .

I'm sure if I thought about it more the list could go on.
And that's a good thing ! Much more expanded from the early days.

 

[Patrick*]

....
of course, many of the folks listed on this thread are already have nice bios on wiki. -- and you could save time and energy by linking to that page instead of reinventing the wheel.

I'm glad you mentioned Learner. I'd forgotten about him - shame on me. I may need to complete my initial list of 10 or 12 and then update it with additional names as I have time & energy.

Good point about wiki. I will probably start with Wiki for many of the bios, but I want to get away from the encyclopedic style and narrow down the information to a short, colloquial paragraph that's brain fog friendly. For instance, with Montoya, I think newbies need to know: Stanford Chronic Fatigue Initiative & his work with Valcyte, and maybe a couple of other basic facts. For Chia, it's basically enteroviruses & Equilibrant and a few other facts. Maybe at the end of each, I'll link to a more complete bio for further reading, as you suggest.

Good suggestions. Thank you, and everyone else who gave advice.

 

[terilynn]

I want to put together a newcomer's guide to ME/CFS researchers. I intend to list some of the top researchers and, for each, include a one-paragraph bio summarizing their work.

When I first found this site about a year ago, I was unfamiliar with most of the researchers discussed here, and have gradually built up my knowledge by Googling the names as I came across them. I thought I might save future newcomers the trouble and put together a brief guide. So I'm appealing to the collective wisdom of the board about who should be on the list.

My criteria is simply that anyone listed must be a true researcher, not a clinician alone, and that he/she must contribute significantly to the medical literature. I probably have to limit it to the "heavy weights" to prevent the list from growing out of control. Maybe 10 to 12 people is a good number.

Off the top of my head, I'd probably include: Klimas, Cheney, Peterson, Myhill, Bateman, Montoya, Kogelnik, Chia, and of course the late, great Rich Van Konynenberg.

Who am I missing? We need some Aussies and more Brits on the list. I apologize for my ignorance there.

Do you think Teitelbaum belongs on the list? How about Garth Nicholson?

Thanks in advance for any help you can give. And please don't hesitate to second or third someone's recommendation because if I haven't heard of someone and they only get one vote, I might be less inclined to include them.

Dr,Martin Lerner in Michigan.

 

[terilynn]

Dr,Martin Lerner in Michigan.

Sorry,I didn't see someone had already said Lerner!

 

[taniaaust1]

For Australia.. there are two main groups of researchers both lots of researchers are still doing studies. (You'll be surprised to find how much research has been done by the two groups.. some of it ground breaking CFS research).

One is the Adelaide CFS research Group and the other one is what used to be the Newcastle group of CFS researchers but seeing the last mentioned ones have just changed location.. I dont know if they will end up being refered to differently. (these two research groups are just commonly refered to by their location rather then the individual researchers in these groups).

Ages ago I started listing all the Australian CFS research (never got it finished) onto the following page which used to be a PR wikipedia page.. which you'll see if you scroll down the first post in following thread (look for the coloured heading ME/CFS Australian Research) http://forums.phoenixrising.me/index.php?threads/australian-cfs-me-history-and-events.5722/

On that list alone I can see just from a quick look that Newcastle Uni ME/CFS researchers are responsible for at least 13 different published studies. .. the Adelaide CFS Research Group thou I dont know if i have many of their studies currently on that list.. I know have done at least 4-5 different CFS studies.

Thou people dont tend to know these researchers by name but as a group.. due to the number of published studies they've done, this group of researchers previously known as The Newcastle Uni researchers, should be mentioned. (This group is currently seeking donations for a piece of expensive equipment for their latest groundbreaking study if anyone is looking for anywhere to donate to go towards good research). This is one group who could end up unlocking that big key to ME/CFS (they do immune system studies on us).