Top Tiered CFS Physicians

[jtimc7]

I was in touch with Dr. Paul Cheney's office today. They mentioned that he is in the top 5 or 6 physicians who work in the area of CFS, world-wide.

Might anyone have thoughts on who the other top level physicians dealing with CFS are?

Thanks so much.

Tim

 

[SickOfSickness]

Derek Enlander
Nancy Klimas
Montoya I think.

Jamie Deckoff-Jones just opened her clinic.

 

[Cort]

Lucinda Bateman
Charles Lapp always seems to be doing drug trials
Dan Peterson

 

[Francelle]

Let's not be too provincial here - the experts are not all American you know! There is Sarah Myhill, Byron Hyde, Kenny De Meirlier to name just three others in the English speaking world. We need to be also aware that there are other Dr's who are in the non- English speaking world who tirelessly work for M.E. patients and may be just as skilled and experienced but less 'in our face' because of language/communication.

 

[jtimc7]

Thanks everyone!

 

[usedtobeperkytina]

Don't forget

Don't forget Komaroff and Rowe.

Tina

 

[citybug]

Dr. Chia, Dr. Brewer?

 

[Gemini]

Dr. Bell. And NY/NJ: Drs. Levine, Natelson, Oleske(Pediatric ME/CFS).

 

[leela]

Rosamund Vallings, Kenny De Meirleir, Byron Hyde

 

[ixchelkali]

In New Zealand, Dr. Ros Vallings.

 

[allyann]

In Melbourne, Australia, Prof. Michael Oldmeadow

 

[Nielk]

Derek Enlander
Nancy Klimas
Montoya I think.

Jamie Deckoff-Jones just opened her clinic.

Does anyone know what treatment Jamie Deckoff-Jones uses in her clinic?

 

[SickOfSickness]

Surely whatever she thinks is best for the patient given their test results and history, and based on what they can afford and are willing to try. Many times she has said something about that.

 

[chloe]

Deckoff-Jones has just started. Does not have years of experience like the others. Background is as an ER doc. Bonus is she's interested; limitations - she believes in aspects of treatment before they have been scientifically proven. So what if you're a patient who does not respond to one of her "beliefs"? It's problematic. But I would expect her general clinical skills to surpass some of the turkeys many of us have seen. I would give her a positive rating, but she does not rank up with the old timers of CFS.

 

[Gamboa]

Dr. Alison Bested in Toronto is one of the few Canadian ME/CFS doctors. She co-authored the book "Hope and Help for CFS and Fibromylagia". Unfortunately she does not take new patients at her Toronto Office but you can get in to see her at a CFS clinic held on Wednesdays at The Woman's College Hospital. OHIP only allows for three visits here so after that you are on your own again (or back to your GP which is about the same thing in most cases). She also doesn't (or can't?) prescribe any of the drugs I see mentioned by the American patients.

Gamboa

 

[Michael Dessin]

Alternative medicine practitioners who specialize in homeopathics, pleos, acupunture, balloon dilation, cranio..and other energy medicines have shown the best results..plus docs using ampligen or GcMAF

 

[Sallysblooms]

I agree. I have found wonderful integrative doctors that have gotten my CFS doing great. It is not a problem at all now. POTS began after a surgery three years ago, so we are now working on that, very tricky.

A good integrative MD knows supplements. They have a wide range of ways to help, lots of knowledge they work on through study, travel to conferences etc. Open minds.

 

[leela]

Yes, I will have to chime in with Mike and Sally. I replied with MD names above because that is what the thread-starter asked for--(sorry mine were repeats)--but as far as anyone can tell, even the most wholeheartedly sincere and deeply experienced MDs who have been focusing on ME have not exactly had throngs of people doing cartwheels of vigorous health out the door.

Personally I see a D.O., an ND, a Doctor of TCM, and an acupuncurist, as I can afford. I have also seen a doctor of neurochiropractic, which is useful.

I am not all better, mind you; but I feel the supplements, the homeopathics, the chinese herbs, the dietary focus, are all addressing the root cause, slowly, and are what has kept me from being totally bedbound and dependent in a darkened room. I am still mostly housebound and horizontal however.

All this to say, few have found the way to be totally free from this neuroimmune weirdness. There are different approaches. I think it is a matter of finding what works for you, and going with whatever approach allows you to manage or tame the worst of the symptoms until
you find an affective way to address the core malfunction.

 

[Sallysblooms]

Yes, I went to a supposed "great CFS doc." It was not good at all. She knew much less than integrative MD's. I couldn't get out fast enough. You do just have to find the best you can.

 

[Gravy]

Hi Allyann,
I'm new to this forum thingy, so be patient with me if i do something wrong

I saw your post about prof michael oldmeadow and was wondering if you had some contact details for him? I have cfs/fm and I'm not real happy with my current Dr.

Thanks