Recently a canadian politician, Carolyn Bennett, MP in the Toronto area, asked me what was going on in the ME/CFS research world, south of the border. Dr Bennett is a medical doctor, who has moved on to the political world. She is part of the opposition in the House of Commons and has been giving of her time for her constituents, notably being in a Facebook chat every week to whoever wants to talk to her.
I wanted to talk to her. I have things to say about health care, health research as it pertains to Canada. I want to understand the politics, and I want to help politicians understand the situation of 411 500 of us stuck with ME/CFS.
So when, after a few weeks of exchanging chats, she asked me what was going on in research, I saw it as an opportunity.
Here is what I wrote. It came mostly by memory. I think I covered the essentials, though some will think I don't have the name of the disease right (always a contentious topic), or I don't have the doctors right. I gave her a tour of the specialists who have been active recently in the field of ME, and I mentioned the work worthy of mentioning. Feel free to use this work for advocacy purposes.
Hello Carolyn. As promised, here is a "brief" explanation of what is going on in research in the US and around the world for ME/CFS research (myalgic encephalomyelitis aka chronic fatigue syndrome). By all means it is not exhaustive but it is the essential of what is currently going on.
1) A paper by prominent virologist Ian Lipkin is due to publish On September 18th. It is about the association of ME/CFS with retrovirus XMRV and/or polytropic murine leukemia virus.
2) CFI- stands for Chronic Fatigue Initiative. A private benefactor gave 10 millions $ for ME/CFS research last year, and this money is being used for various projects including epidemiology, biomarkers, case definition, etc. More info: http://cfinitiative.org/Dr Klimas, immunologist in Miami Florida is deeply involved with these projects. She has dedicated most of her career to patients with ME/CFS. She tests pts' Natural Killer cell function which is always very low for us. (testing which is not done in Canada) NK cell function btw is also low in HIV/AIDS patients.
3) Dr Dan Peterson: Is an Internist in Incline Village, Nevada (Tahoe) where an epidemic of ME/CFS started in 1984. Dr Peterson Founded Simmaron Research and he has collected thousands of blood and CSF samples of patients with ME/CFS. An abnormally high number of his original cohort went on to have rare lymphomas, notably mantle cell lymphoma. He treats patients with various anti-virals and also Ampligen, a drug that has been stuck in clinical trials for decades.He works with Open Medicine Institute and Phanu (Australia) with genetic and immunology projects. http://simmaronresearch.com/
4) Dr David Bell from Lyndonville NY is also another internist in a small town in NYC where there was an outbreak of ME/CFS in children inthe 1980's. These outbreaks were deemed "hysterical" by the CDC btw. Dr Bell is now retired but has a website with many valuable tools and stories. http://www.davidsbell.com/
5) Open Medicine Institute (Dr Andy Kogelnik) Dr Kogelnik is an infectious medicine dr who is currently preparing multi-center clinical trials with Rituximab for patients with ME/CFS following the work of Dr Fluge and Mella in Norway. Open Medicine Institute is located in the Silicon Valley and this dr has been gathering the gems of all scientists in genomics, computational biology, system biology, social networking and more and building on. Dr Kogelnik previously worked under Dr Montoya (below) with the Valcyte study. The research is starting, however federal funding is very difficult, I believe he will ask patients and the private sector to fund his research. He is collaborating with the CDC on an epidemiology study amongst other things.
www.openmedicineinstitute.org
6) Dr Montoya (Stanford University) is also an infectious disease dr. He is famous for his Valcyte study on patients with ME/CFS. He proved that Herpes virus IgG titers could be reduced by giving Valcyte. Patients with ME/CFS most often have viral reactivtion, especially EBV, HHV-6 and CMV. Viral titers are not done in Canada unless you have HIV. Personally I have chronically reactivated EBV. I also have developped bilateral shingles on the feet which drs couldn't believe could happen. Dr Montoya has a very informative lecture on you tube: http://www.youtube.com/
7) Dr Bateman (Salt Lake City) has been doing a lot of CME work. She is a GP specializing in ME/CFS. She collaborates with Dr Light who has proven that ME/CFS and depression were 2 separate entities. His stunning paper maybe of interest to you: http://www.jpain.org/article/
Dr Bateman's work can be seenhere : http://www.medscape.org/
8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. www.iacfsme.org It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here: http://www.iacfsme.org/Home/
9) PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk/Dr Don Staines are doing ground-breaking research on autoimmunity as it pertains to ME/CFS, including research on the NK cells. They recently presented at a conference in London called "Invest in ME"- they collaborate with Dr Kogelnik, Peterson and Dr Klimas in Miami.
Immunological abnormalities as potential biomarkers in chronic Fatigue Syndrome/Myalgic Encephalomyelitis. http://
10) Invest in ME- is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
Their goal is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.
Please view their journal http://investinme.org/
And video conference (much recommended) can be ordered for 30$ http://investinme.org/
11) Recent papers of interest:
A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"http://www.plosone.org/
Lyme disease is another neglected disease which leaves patients Without ressources or health care in Canada. This fascinating paper shows they are differnet diseases with overlap.
B) VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. Med. Sci. Sports. Exerc. 38(5), 2006.
The work of Staci Stevens and Christopher Snell Has been critical in proving that indeed I was sick and disabled. Using consecutive days cardiopulmonary exercise tests, patients with CFs cannot reproduce results on the second day, which features the "post exertional phenomenon" of our illness.
http://www.research1st.com/
C) The Rituximab paper. http://www.ncbi.nlm.nih.gov/
an important story that has to be told. The same researchers will try Rheumatologic drug Enbrel on the patients who have not responed to Rituximab.
It is to note that I have written to 14 different rheumatologists in Canada asking them to participate in multi-center trials with Rituximab or give it to me as compassionate access. Suffice to say that rheumatologists do not want to get involved in the care of pts with ME/CFS.
D) Impaired cardiac function in Chronic fatigue syndrome measured using Magnetic Resonnance Cardiac tagging.http://www.ncbi.nlm.nih.gov/
Finally, all these efforts are being counteracted by a powerful lobby of UK psychiatrists with vested interests with governments and insurance companies telling our doctors, the CDC and our insurance companies that our disease is due to abuse as a child, that it is treated with CBT (cognitive behavioral therapy) and GET ( graded exercise therapy). This same group of physicians in fact came to Vancouver in the mid 1990's and told our dr we had "false illness beliefs" effectively closing a clinic held by Dr Carruthers. Following this, one of our long time patient mentioned there were many suicides.
Flawed psychological studies are being published by these psychiatrists, and allowed to circulate in the papers like propaganda.
In Canada, very few physicians treat ME/CFS or help with disability insurance.
1) Dr Alison Bested is leaving her practice in Toronto and accepted a position of medical director at the Complex Chronic Diseases in Vancouer, a 2 millions funded by BC- covering mostly Lyme, ME/CFS and Fibromyalgia. She will start October 1st, and the clinic has not opened yet.
2) Dr Ellie Stein, Calgary, psychiatrist who can assure that this illness is not psychiatric in nature, though depression can be rampant due to the extreme neglect. http://eleanorsteinmd.ca/
she just published in the Canadian Journal of CME.
3) Dr Bruce Carruthers, Vancouver, internal medicine, has had a very very long carreer. He is the authors of 2 definition papers
http://www.cfids-cab.org/MESA/
And this new ME ICC consensus: http://
4) Dr Byron Hyde http://www.nightingale.ca/ is in private practice, offering careful diagnosis and legal proof of disability.
5) Dr Gordon Broderick is a scientist (computational biology) working in Alberta and collaborating with Dr Nancy Klimas in Miami.
I hope that these can be of assistance to you. Again, there is 0$ federal research for ME/CFS, the Community Health Survey 2010 shows 411 500 of us are affected, 205% more than in 2001. Mrs Aglukkaq has failed to respond adequately to my letters.
I wanted to talk to her. I have things to say about health care, health research as it pertains to Canada. I want to understand the politics, and I want to help politicians understand the situation of 411 500 of us stuck with ME/CFS.
So when, after a few weeks of exchanging chats, she asked me what was going on in research, I saw it as an opportunity.
Here is what I wrote. It came mostly by memory. I think I covered the essentials, though some will think I don't have the name of the disease right (always a contentious topic), or I don't have the doctors right. I gave her a tour of the specialists who have been active recently in the field of ME, and I mentioned the work worthy of mentioning. Feel free to use this work for advocacy purposes.
Hello Carolyn. As promised, here is a "brief" explanation of what is going on in research in the US and around the world for ME/CFS research (myalgic encephalomyelitis aka chronic fatigue syndrome). By all means it is not exhaustive but it is the essential of what is currently going on.
1) A paper by prominent virologist Ian Lipkin is due to publish On September 18th. It is about the association of ME/CFS with retrovirus XMRV and/or polytropic murine leukemia virus.
2) CFI- stands for Chronic Fatigue Initiative. A private benefactor gave 10 millions $ for ME/CFS research last year, and this money is being used for various projects including epidemiology, biomarkers, case definition, etc. More info: http://cfinitiative.org/Dr Klimas, immunologist in Miami Florida is deeply involved with these projects. She has dedicated most of her career to patients with ME/CFS. She tests pts' Natural Killer cell function which is always very low for us. (testing which is not done in Canada) NK cell function btw is also low in HIV/AIDS patients.
3) Dr Dan Peterson: Is an Internist in Incline Village, Nevada (Tahoe) where an epidemic of ME/CFS started in 1984. Dr Peterson Founded Simmaron Research and he has collected thousands of blood and CSF samples of patients with ME/CFS. An abnormally high number of his original cohort went on to have rare lymphomas, notably mantle cell lymphoma. He treats patients with various anti-virals and also Ampligen, a drug that has been stuck in clinical trials for decades.He works with Open Medicine Institute and Phanu (Australia) with genetic and immunology projects. http://simmaronresearch.com/
4) Dr David Bell from Lyndonville NY is also another internist in a small town in NYC where there was an outbreak of ME/CFS in children inthe 1980's. These outbreaks were deemed "hysterical" by the CDC btw. Dr Bell is now retired but has a website with many valuable tools and stories. http://www.davidsbell.com/
5) Open Medicine Institute (Dr Andy Kogelnik) Dr Kogelnik is an infectious medicine dr who is currently preparing multi-center clinical trials with Rituximab for patients with ME/CFS following the work of Dr Fluge and Mella in Norway. Open Medicine Institute is located in the Silicon Valley and this dr has been gathering the gems of all scientists in genomics, computational biology, system biology, social networking and more and building on. Dr Kogelnik previously worked under Dr Montoya (below) with the Valcyte study. The research is starting, however federal funding is very difficult, I believe he will ask patients and the private sector to fund his research. He is collaborating with the CDC on an epidemiology study amongst other things.
www.openmedicineinstitute.org
6) Dr Montoya (Stanford University) is also an infectious disease dr. He is famous for his Valcyte study on patients with ME/CFS. He proved that Herpes virus IgG titers could be reduced by giving Valcyte. Patients with ME/CFS most often have viral reactivtion, especially EBV, HHV-6 and CMV. Viral titers are not done in Canada unless you have HIV. Personally I have chronically reactivated EBV. I also have developped bilateral shingles on the feet which drs couldn't believe could happen. Dr Montoya has a very informative lecture on you tube: http://www.youtube.com/
7) Dr Bateman (Salt Lake City) has been doing a lot of CME work. She is a GP specializing in ME/CFS. She collaborates with Dr Light who has proven that ME/CFS and depression were 2 separate entities. His stunning paper maybe of interest to you: http://www.jpain.org/article/
Dr Bateman's work can be seenhere : http://www.medscape.org/
8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. www.iacfsme.org It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here: http://www.iacfsme.org/Home/
9) PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk/Dr Don Staines are doing ground-breaking research on autoimmunity as it pertains to ME/CFS, including research on the NK cells. They recently presented at a conference in London called "Invest in ME"- they collaborate with Dr Kogelnik, Peterson and Dr Klimas in Miami.
Immunological abnormalities as potential biomarkers in chronic Fatigue Syndrome/Myalgic Encephalomyelitis. http://
10) Invest in ME- is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
Their goal is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.
Please view their journal http://investinme.org/
And video conference (much recommended) can be ordered for 30$ http://investinme.org/
11) Recent papers of interest:
A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"http://www.plosone.org/
Lyme disease is another neglected disease which leaves patients Without ressources or health care in Canada. This fascinating paper shows they are differnet diseases with overlap.
B) VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. Med. Sci. Sports. Exerc. 38(5), 2006.
The work of Staci Stevens and Christopher Snell Has been critical in proving that indeed I was sick and disabled. Using consecutive days cardiopulmonary exercise tests, patients with CFs cannot reproduce results on the second day, which features the "post exertional phenomenon" of our illness.
http://www.research1st.com/
C) The Rituximab paper. http://www.ncbi.nlm.nih.gov/
an important story that has to be told. The same researchers will try Rheumatologic drug Enbrel on the patients who have not responed to Rituximab.
It is to note that I have written to 14 different rheumatologists in Canada asking them to participate in multi-center trials with Rituximab or give it to me as compassionate access. Suffice to say that rheumatologists do not want to get involved in the care of pts with ME/CFS.
D) Impaired cardiac function in Chronic fatigue syndrome measured using Magnetic Resonnance Cardiac tagging.http://www.ncbi.nlm.nih.gov/
Finally, all these efforts are being counteracted by a powerful lobby of UK psychiatrists with vested interests with governments and insurance companies telling our doctors, the CDC and our insurance companies that our disease is due to abuse as a child, that it is treated with CBT (cognitive behavioral therapy) and GET ( graded exercise therapy). This same group of physicians in fact came to Vancouver in the mid 1990's and told our dr we had "false illness beliefs" effectively closing a clinic held by Dr Carruthers. Following this, one of our long time patient mentioned there were many suicides.
Flawed psychological studies are being published by these psychiatrists, and allowed to circulate in the papers like propaganda.
In Canada, very few physicians treat ME/CFS or help with disability insurance.
1) Dr Alison Bested is leaving her practice in Toronto and accepted a position of medical director at the Complex Chronic Diseases in Vancouer, a 2 millions funded by BC- covering mostly Lyme, ME/CFS and Fibromyalgia. She will start October 1st, and the clinic has not opened yet.
2) Dr Ellie Stein, Calgary, psychiatrist who can assure that this illness is not psychiatric in nature, though depression can be rampant due to the extreme neglect. http://eleanorsteinmd.ca/
she just published in the Canadian Journal of CME.
3) Dr Bruce Carruthers, Vancouver, internal medicine, has had a very very long carreer. He is the authors of 2 definition papers
http://www.cfids-cab.org/MESA/
And this new ME ICC consensus: http://
4) Dr Byron Hyde http://www.nightingale.ca/ is in private practice, offering careful diagnosis and legal proof of disability.
5) Dr Gordon Broderick is a scientist (computational biology) working in Alberta and collaborating with Dr Nancy Klimas in Miami.
I hope that these can be of assistance to you. Again, there is 0$ federal research for ME/CFS, the Community Health Survey 2010 shows 411 500 of us are affected, 205% more than in 2001. Mrs Aglukkaq has failed to respond adequately to my letters.
Excellent! I only wish I had the energy to give you a point by point analysis of my take. But I'm here in order to NOT lose track of you. I can only imagine how much it took to write all this. Keep up the good work! As I've mentioned previously this weekend, I'm done with the advocacy part...been there, done that and pass the baton to the new generation.
ReplyDeleteAnd how angry I am that there IS a new generation! I've had this monstrous illness since 1979 and am thoroughly disgusted that so little progress has been made in these past decades...it's a real crime. These days my "contribution" is relating how to live with this killer of an illness, hoping my "stories," experiences and observations help in some way. Thanks for your work! xx