Dr Bell Coming To Toronto

shannah

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EVERYONE WELCOME! WHEELCHAIR ACCESSIBLE
FRAGRANCE / SCENT FREE ONLY PLEASE
Please do not use alcohol or other sanitizers right before entering the event
David S. Bell, MD, FAAP, is a Harvard graduate, with an MD degree from
Boston University School of Medicine, 1971. In 1978, he began work at
the University of Rochester but soon began a private practice in the town
of Lyndonville, New York. In 1985 nearly 220 persons became ill with an
illness subsequently called chronic fatigue syndrome in the communities
surrounding Lyndonville, New York. This illness cluster began a study of
the illness which continues today. Dr. Bell is the author or co-author of
numerous scientific papers and books on CFS. He has also lectured on
the ways ME/CFS affects the neurological and immune systems and the
possible explanations for this illness, right down to the bodys ability to
handle oxygen at the cellular level. He has been rigorously following the
research into the XMRV virus and will be speaking about this research.
The Myalgic Encephalomyelitis Association of Ontario is grateful for the ongoing support of:
For further information, call 416.222.8820 or 1.877.632.6682
or visit us at www.meao-cfs.on.ca
Dr. David S. Bell
Current Findings and Research into ME/CFS:
XMRV Virus and What It Means
The Myalgic Encephalomyelitis Association of Ontario and the Environmental Health Clinic,
Women's College Hospital Present Our Special Guest Lecturer
Saturday, March 6, 2010, 1-4 p.m.
Womens College Hospital Auditorium, 76 Grenville Street, Toronto
Suggested Donation at the Door: $10
 

Kati

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OMG!!! What great news!!! Thanks for sharing Shannah! I really wish I was closer to Toronto but happy he's coming to Canada!!!
 

Kati

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You know what I am impressed about? It's located in a hospital auditorium!!! Please, please please make it a teaching hospital??? And please, make the college of doctors provide credits for attending physicians and students!!!
This is GRAND, I think I will send thank yous to Dr Bell-
 

kerrilyn

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Any word on what he'll be discussing? Will his lecture be the same info as his Jan. 15 California lecture? Someone of importance to this illness is coming to TO - I'm giddy.
 

shannah

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Just a reminder that this event is TOMORROW for those of you thinking of attending.

Unfortunately it's not going to be available by webcast or even taped. Since this is the first talk in Canada, any notes someone may take would be deeply appreciated.

I'd be really interested in knowing IF and HOW Canada is preparing should WPI results be replicated within the next few months.

Shannah
 

Kati

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How did that go? Was it well attended? Any physicians in the room? Any new informations??? Dying to know!!!
 

MEKoan

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This is so sad but is an accurate measure of the amount of interest and awareness in Toronto. I don't think there are many people with ME here, frankly. That's actually a good thing. More of us is not good. The only other local people I have met, I met online. I have met people with FM but not ME.

But, I can't imagine they would invite him if they were not sure of some interest... among doc.s, I hope. And, there are Bested's patients! Also Rina Bray whom I have seen would be there for sure and it's her hospital.

I do hope he had a good audience!
 

shannah

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A friend of mine with FM attended this meeting and has granted permission to post what she picked up from the event. She is just beginning to research XMRV so may not have picked up some things that others may have zeroed in on. She said in a later email the room was packed guessing there were more than 200 in attendance, mostly patients from what she could tell.

"They wouldn’t allow us to tape the lecture but taped it themselves and will post it on the MEAO web site. I took notes but a lot of it was too technical for my brain. Dr. Bell has retired from his practice but is doing research now. He said there are a number of ways to test for the XMRV virus but they haven’t determined which one gives the best result. He also said there is a lot of negative stuff in the media because some of the published studies did not confirm the original conclusions. However, they did not say in their studies what method they used to test and if the blood was stored blood so may not have been what was needed. So he said not to pay too much attention to the negative reports.

He also said not to rush out and get tested but wait until they determine what method of testing will give the most accurate result. Also, the virus may not show up in the beginning stages of the syndrome. That happened with AIDS. It skewed the first research results and it took them a while to figure that out. Dr. Bell figures it will take at least another year before they figure out how to best test for this virus. Because the XMRV virus is similar to AIDS and contagious, we are not to give blood or donate our organs.

If they prove that XMRV does cause ME/FM/CFS then the name will be changed to XAND which stands for XMRV Associated Neuro-immune Disease.

There was a good question and answer period afterward. I asked where do we go for help as most family doctors and Rheumatologists don’t provide any help. Dr. Bested said there is an Environmental Clinic at Women’s College Hospital and they specialize in ME/FM/CFS. She is working to get another clinic opened in Ontario with a program to train new doctors and specialists.

The MEAO group are organizing a march on parliament in May and want everyone to attend wearing the new blue T-shirts. Dr. Bested will be addressing parliament requesting help for these diseases. If you are too unwell to attend, they ask people to buy a T-shirt and have a picture taken of youself in it in bed and send a letter to your MPP with the picture and say I would be there on parliament for the May event, but I am too sick!! "

shannah
 

MEKoan

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Thank you so much for this Shannah!

I've been seen and tested at the clinic mentioned. That's where I saw Rina Bray who was the single best doctor I've seen re this, ever.

I also waited for an appt. with Dr Bested, who, as far as I know, no longer sees people at the clinic at Women's college and now has her own clinic, but could not see her as you must have more appt.s with the naturopath with whom she works than you do with her and the naturopath is not covered by provincial health coverage. They make no exceptions for people on ODSP. This sticks in my craw, must say.

Anyway, many many many thanks for this!
 

shannah

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Yes Koan - totally agree with you regarding the built in naturopathic appontments. When I asked the reasoning for structuring it this way, I was told that it was so Dr. Bested could see so many more patients this way. When I pointed out that it precluded all those on low fixed incomes, it was met with some disregard.

Anyway, last time I checked a few years ago, she didn't test for any underlying infections which I felt was useless. I already knew we had underlying problems with pathogens as I had previously managed to get one family member tested privately and it showed several. Also those I've talked to who have gone to her office don't seem to have any better success at treatment than those of us who self treat.

If the retroviral studies ever get finally replicated, I'm curious to see what and how she's going to proceed on our behalf and most importantly how quickly it happens.

My cynicism from years of medical neglect is starting to show. Better sign off.
 

kerrilyn

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This is so sad but is an accurate measure of the amount of interest and awareness in Toronto. I don't think there are many people with ME here, frankly. That's actually a good thing. More of us is not good. The only other local people I have met, I met online. I have met people with FM but not ME.
I've noticed that too. Do you think there are truly less or just less doctors who recognize it so more people are dx with FM who may actually have ME or both?

What did Rina Bray do for you, Koan? Never heard of her specifically, I have heard of the Evironmental Clinic and have thought of going. I'd LOVE to see someone who actually knew/understood things to test for - I've yet to find that.
 

MEKoan

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Hi Shannah,

My experience, too, was just as you describe. Sad, I think, that we in the ME community are denied care in a way that people with other conditions in Ontario are not. I think Bested made a bad call; an end run around our health care system is troubling in so many ways. But, as you say, she does not seem to be helping anyone so I, too, have let it go.

Hi Kerrylyn,

Rina Bray is a very intelligent and compassionate clinician who showed a really good grasp of the problems we face. I believe she was doing a study at the time and she tested for many things, including co-infections like mycoplasmas and reactivated herpes viruses like HHV6, and referred on for further testing with a sleep clinic and an immunologist/allergist. Unfortunately, I was in a pretty bad state at the time and could only avail myself of what testing was done on the day of the appt. and was not well enough to do any of the follow-up testing, like the cortisol, or see the other specialists involved.

She was not taking patients but, even without being able to complete the testing, I was able to discover and be treated for a simmering mycoplasma infection and to find that I had reactivated HHV6. She also did a very good clinical neurological exam (though not a neurologist) which revealed several abnormalities.

Beyond all of that, though, it was an amazing experience to finally see someone who treated me with nothing save respect. Interestingly, she had been my stepkid's family doctor years before. They thought very highly of her, too. I think her main area of interest is environmental medicine.

I don't know if Dr Bray can order the kind of testing I had outside of a study setting as it was probably quite expensive and, at the moment, of uncertain usefulness. I do highly recommend her, however, as a knowledgeable and compassionate clinician.

I just had a wave of sadness wash over me that it should be so rare to find a compassionate physician! Sorry state of affairs, indeed.

Poutine out,
Koan