Unconfirmed sources tell of a late May tour by Dr. Peterson, Medical Director of WPI, to Europe and Sweden/ Finland.
XMRV - a novel retrovirus: What Doctor Should Know about it.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Tuesday, May 18, 2010
WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System
Astonishing positive news about the blood bank safety issue.
WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System
Although, the article stated the recommendation and presentation will not be put before the AABB until October. Hopefully, they will address it sooner if we keep this alive in the media.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System
Although, the article stated the recommendation and presentation will not be put before the AABB until October. Hopefully, they will address it sooner if we keep this alive in the media.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Monday, May 17, 2010
Kenneth Feinburgh, we need you!
Who else is better suited to represent us for compensation from the health insurance industry? No one.
Compensation Czar Kenneth Feinberg
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Compensation Czar Kenneth Feinberg
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Saturday, May 15, 2010
X Rx Blog
Harvard/Einstein educated, and at one point, Assistant Director of the ED and Director of Urgent Care at Santa Clara Valley Medical Center. Dr. Jamie Deckoff-Jones blogs about her and her daughters' XRMV treatment using HIV Anti-retrovirals.
X Rx
I plan on referencing and steering my infectious disease doctor to her informaion. What's kinda sad, is that I HAVE to steer her towards anything conncerning XMRV.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
X Rx
I plan on referencing and steering my infectious disease doctor to her informaion. What's kinda sad, is that I HAVE to steer her towards anything conncerning XMRV.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Wednesday, May 12, 2010
Where we aren't, anymore.
Today is May 12th. It is International CFS/ME Awareness Day.
I have watched it come every year for appx. 15 years of the 17 I have been ill with CFS/ME. I try to be involved, but sometimes it is just futile. I try to write letters; send emails. Usually, I end up watching it leave with a sense of defeat, and paying acutely and severly for the expended energy I seemingly used in vain.
Last year on October 9, 2009, Science published a study done between the WPI, CC and NCI. It detailed an association between CFS/ME and XMRV. There's so much information on this blog about this already, so I am by-passing the details.
For me, saying that the results of this study marked a watershed ping on the CFS/ME horizon of possibilities is an understatement. IMHO, this discovery has the potential to sever our being held hostage in an endlessly bleak and unfathomable CFS/ME nebula. I feel we've never been closer to an answer, and possibly treatments. And if we can't make the world aware of us as much as we want today?, my wish is that all PWC's (Patients with CFS/ME) ON THIS PLANET are aware of what has changed towards the positive for us since October 9, 2009.
So, at 11:21 am, on this day of May 12th, 2010, I proclaim that we are on a New pilgrimage. We are rising up. We are strengthend with a restored covenant of new actualities; intent on manifesting our dreams of thriving in health and abundance, as is the right of every human. Turn Left HERE! Where we were has been blinked out of existence. It's in the stars people.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Want to help? Visit the Whittemore Peterson Institute and donate. ANY amount helps.
I have watched it come every year for appx. 15 years of the 17 I have been ill with CFS/ME. I try to be involved, but sometimes it is just futile. I try to write letters; send emails. Usually, I end up watching it leave with a sense of defeat, and paying acutely and severly for the expended energy I seemingly used in vain.
Last year on October 9, 2009, Science published a study done between the WPI, CC and NCI. It detailed an association between CFS/ME and XMRV. There's so much information on this blog about this already, so I am by-passing the details.
For me, saying that the results of this study marked a watershed ping on the CFS/ME horizon of possibilities is an understatement. IMHO, this discovery has the potential to sever our being held hostage in an endlessly bleak and unfathomable CFS/ME nebula. I feel we've never been closer to an answer, and possibly treatments. And if we can't make the world aware of us as much as we want today?, my wish is that all PWC's (Patients with CFS/ME) ON THIS PLANET are aware of what has changed towards the positive for us since October 9, 2009.
So, at 11:21 am, on this day of May 12th, 2010, I proclaim that we are on a New pilgrimage. We are rising up. We are strengthend with a restored covenant of new actualities; intent on manifesting our dreams of thriving in health and abundance, as is the right of every human. Turn Left HERE! Where we were has been blinked out of existence. It's in the stars people.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Want to help? Visit the Whittemore Peterson Institute and donate. ANY amount helps.
Tuesday, May 4, 2010
Positive ‘XMRV-study’ a matter of time
A dutch press release during the multi-day 'Centennial Retrovirus Meeting' conference in Prague.
Kick-back from Dr. Coffin on the XMRV/CFS non replication studies performed.
Can I just say, awesome.
ESME on Dutch Press Release
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Kick-back from Dr. Coffin on the XMRV/CFS non replication studies performed.
Can I just say, awesome.
ESME on Dutch Press Release
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Dr. Bell makes a personal appeal to fund WPI's research with XMRV/CFS
Even the smallest donations are appreciated. Please help!
Taken from WPI's web site
=====================
David S. Bell MD, FAAP
Lyndonville, NY 14098
May 1, 2010
To my friends with ME/CFS,
I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.
Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.
It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.
In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.
I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."
Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).
We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.
It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?
But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.
After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.
For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.
Thank you.
David S. Bell MD, FAAP
1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.
Taken from WPI's web site
=====================
David S. Bell MD, FAAP
Lyndonville, NY 14098
May 1, 2010
To my friends with ME/CFS,
I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.
Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.
It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.
In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.
I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."
Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).
We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.
It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?
But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.
After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.
For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.
Thank you.
David S. Bell MD, FAAP
1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.
Lightning Strikes Children: An Expose by Khaly Castle
"Will we stand by and watch lightning strike children?"
Well said. Pleaase read this expose. They are going to experiment on 90 children with CFS/ME with behaviour modification techniques. If they HAVE to experiement, why can't they experiement on adults?
Khaly explains what they will do to them.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Well said. Pleaase read this expose. They are going to experiment on 90 children with CFS/ME with behaviour modification techniques. If they HAVE to experiement, why can't they experiement on adults?
Khaly explains what they will do to them.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
Saturday, May 1, 2010
Dr. Myhill Banned for Prescribing B-12 and Magnesium
Dr. Sarah Myhill has been an ME/CFS advocate, and care provider for 30 years. Her focus is on Ecological Medicine, and she states that:
"...Ecological Medicine. 'is' ...how I treat various conditions, the sort of diets that I use and the lifestyle changes that I recommend and the micronutrient supplements to take in order that they can sort out their own medical problem."
She has treated those whom have been told there is 'Nothing more I can do', by their primary doctors, as in the case of Patricia Chell. She was told they could do no more for her, and she had cardiac heart failure. Please watch her story here:
Private Powys GP banned from prescribing drugs by GMC
Basically, Dr. Myhill is being banned because she gives B12 and Magnesium shots. And because she helps ME/CFS patients.
Please visit Dr. Myhill's web site, and show your support. Please download her 'free' information before she has to take it down as mandated by the UK GMC (General Medical Council). Yes 'free', and that's the way she works. We cannot believe how she is being treated. Mostly due to the fact imho, that she treats ME/CFS patient (and exceptionly well), when the UK equivalent of the CDC treats ME/CFS as a psychological illness (We have abnormal illness beliefs; although there is published literature stating otherwise and has been circulating for 20+ years.) Instead of treating ME/CFS patients with dignity and support, they instead back down doors in the UK; evict children with this illness to a mental hospital where they are subjected to dangerous exertion levels. One woman died after this 'treatment'. They also took a child and Threw her in a swimming pool to 'prove' she was faking. She almost died. And they say Dr. Myhill "... is a potential risk to patients??"
The UK GMC is Unbelievable. Criminal.
Dr. Myhill's web site
Please show your support by signing Ruth Myhill's (Dr. Myhill is her 'mum' :+))
ipetition
Join her facebook support site.
Thank you for supporting her!
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
"...Ecological Medicine. 'is' ...how I treat various conditions, the sort of diets that I use and the lifestyle changes that I recommend and the micronutrient supplements to take in order that they can sort out their own medical problem."
She has treated those whom have been told there is 'Nothing more I can do', by their primary doctors, as in the case of Patricia Chell. She was told they could do no more for her, and she had cardiac heart failure. Please watch her story here:
Private Powys GP banned from prescribing drugs by GMC
Basically, Dr. Myhill is being banned because she gives B12 and Magnesium shots. And because she helps ME/CFS patients.
Please visit Dr. Myhill's web site, and show your support. Please download her 'free' information before she has to take it down as mandated by the UK GMC (General Medical Council). Yes 'free', and that's the way she works. We cannot believe how she is being treated. Mostly due to the fact imho, that she treats ME/CFS patient (and exceptionly well), when the UK equivalent of the CDC treats ME/CFS as a psychological illness (We have abnormal illness beliefs; although there is published literature stating otherwise and has been circulating for 20+ years.) Instead of treating ME/CFS patients with dignity and support, they instead back down doors in the UK; evict children with this illness to a mental hospital where they are subjected to dangerous exertion levels. One woman died after this 'treatment'. They also took a child and Threw her in a swimming pool to 'prove' she was faking. She almost died. And they say Dr. Myhill "... is a potential risk to patients??"
The UK GMC is Unbelievable. Criminal.
Dr. Myhill's web site
Please show your support by signing Ruth Myhill's (Dr. Myhill is her 'mum' :+))
ipetition
Join her facebook support site.
Thank you for supporting her!
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
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