As the battle is waged on the scientific front, it is with great joy that I am able to announce that we will begin to see patients at the WPI on August 1. It will close the circle necessary to be a true translational research center with synergy between disciplines.
Dr. Chitra Bhakta is a Family Practitioner with a private practice in Orange County where she treats ME/CFS and autism. She brings medical insight, scientific literacy and compassion for the patients. Dr. Bhakta will continue to be available to her Orange County patients during this transition.
Dr. Robert Fredericks is an Endocrinologist in private practice in Reno. His special interests include the endocrinology of neuroimmune illnesses and he is an expert in bone metabolism. He has decided to join us and is in the process of moving his practice into the clinic, thus providing us with our first specialist.
There are a very large number of patients asking to be seen. We will only be able to accommodate a few in the beginning. We have other interested doctors, but Nevada’s licensure process for new physicians coming into the state is long and can be convoluted. Dr. Bhakta has had a Nevada license since her residency at the University of Nevada, allowing her to begin without a delay. Our goal is to create a group of like-minded physicians. I tried active recruiting hoping to accommodate the volume of patients at the outset, but it will have to happen more organically, as we find the right doctors with passion for the project.
It’s a start. The need is enormous. We will get our systems in place, fill in the gaps with respect to pathophysiology, and approach treatment with the benefit of the perspective of our scientists. The seeds are sown. We will water and care for this unique garden, growing our knowledge for the day when we can harvest in the form of clinical results.
A journey of a thousand miles begins with a single step.
~ Lao-tzu
>Oh this is so very exciting Dr. Jamie! Good news indeed!!!!!
>How exciting. It's become so easy to keep the faith with the WPI. Getting the right thinking doctors on board gives us all the hope in the world.
Thank you for the update Dr. Jamie.
>It is very encouraging to hear such news. All the best to you and your team.
>This is the best news since we've had in a long time. Thank you! A first step that will eventually mean better care for all of us, worldwide. Brava!
>Wonderful, wonderful, WONDERFUL!!!!!!
>August 1, 2011! This is another great milestone for WPI. Congratulations!
Patricia Carter
>Thank you, Jamie, and thank you, everybody who put this together.
>Great stuff – hope for us all!
And I hope everyone is supporting the WPI by voting daily for them via Facebook in the Vivint contest – they're already the frontrunner for the regional prize of $100,000 and fourth in line for the national prize of $250,000. So if you care about your own health, get voting!
Here's the link: http://www.vivint.com/givesbackproject/charity/769
>Thank you, Dr. Jamie. This is fantastic news! All ME/CFS patients will benefit from WPI's (and supporters') phenomenal accomplishment.
>YIPPIE!!!!!
>Thank you so much, people at the Whittemore-Peterson Institute.
You are true angels.
Yes, every journey of a thousand miles does begin with one small step, and I believe that the WPI clinic will thrive as we go forward. But actually, the WPI, throguh it's research wing, has already made a gigantic step to get us much much forward.
>God bless the WPI! May it have wings to soar! Starting small is great.
>congratulations this is a happy day!
love crafter Kate xoxox
god bless WPI.
>Mazel tov!
>This is the best news I've had in almost a year!! Thank you so much to everyone who is making this possible!!!
>This is such wonderful news. Slow and steady wins the race! It can't help but benefit our entire community to have this first big step in place. Thank you once again, Dr. Jamie and WPI.
>Truly tremendous. Very hopeful. Thank you! And thank to the doctors who are stepping up for us.
Keith
>Fantastic news!!!
>Congratulations, Dr. Jamie! This is so exciting.
>Great news! Very very exciting. — Rivka
>Best news since the Science Article!
Jean Harrison
>Made me feel like crying, such good news. Wish I could be one of the lucky patients. Good luck, and I pray that soon your knowledge will help us all soon.
Lynn Twohey
>I have a weird, but very serious question: What if you've been tested but don't have XMRV, yet are very seriously ill? Will XMRV- patients be turned away?
And do you know how many years it will take to actually get in to be seen?
>Wonderful news!! It makes my day, thanks – I hope to be able to visit someday!!!!!
>Wonderful!
>Fantastic! The start of a new era in treatment approaches. I'm hoping that what is learned in the WPI clinic filters down through the medical profession and makes treatments based on fact available to all in the end.
Here in the UK, it might take a while, but if one knew interested medics, what action if any should one take? Possibly too early to ask this question…
>Woo hoo!!! Cowabunga!!! Great news!!!
Thanks to all who are making this happen and I agree with others that it is better to find the right people and build a dedicated, passionate team even if it takes a bit longer.
My hope is to be a patient one day, however, I echo Lynn's sentiment that a greater hope is that my doctor can learn from WPI or that your knowledge and experience will spread quickly to help us all as soon as possible. Perhaps that could be a major part of the clinic to be a teaching clinic? … and offer seminars and classes on a regular basis at WPI? Dr. Judy is doing such an amazing job now spreading the word around the world.
Cathy
>I wonder why no announcement been made by the WPI?
This was so long awaited that I thought Mrs Whittemore and the Institute would have been the first to announce the news, particularly in light of all the recent controversy.
And yet nothing appears on their website. Perhaps I have overlooked it?
It is something I hope will prove most welcome, and perhaps more detail will be forthcoming.
>Marcia,
I'm pretty sure I have read a few times that WPI will still be there for those who have not tested positive for X. They are interested in treating all with Neuro Immune illnesses, and developing treatment protocols for all.
I now have to see if my insurance company will help out, they state that if the expert assistance is not available in Ireland (and it's not, dismally so) then a patient can travel to seek it out. Time to set blueprints for others. Thanks for the hope WPI.
>Wonderful news! Couldn't arrive for me at a better time. Is there anything you can aware with us about the patients that are going to be so lucky to be seen?
I guess there will be an overwhelming flood golf and a run to the WPI.
What will the criteria be for seeing those first patients? Will it be on a first come first serve basis? XMRV positive patients? The real severely ill patients who need help quickly(I'm speaking from experience here)
I guess I just want to know if I will stand a chance to be seen soon because I feel I don't have much time left. Our RV is ready to take me wherever I will have a chance on a treatment to improve my quality of life.
Any info about the criteria is welcome, so I'll know I don't have to keep my hopes up if I don't fit the criteria.
Thanks Jamie, for making possible what seemed impossible.
>Arrrrgghhhh stupid auto-completion software! That should be 'share' and not 'aware' in my comment. Sorry bout that!
>I hope the UK NHS clinics sit up and learn from the great example the WPI clinc will set. The only useful treatment here in the UK is private and has to be paid for.
We are living in the dark ages here in the UK, when it comes to ME. Shine your light on them WPI and expose their sham of an excuse for treatment.
>Exciting news! I wish WPI much success with the new clinic.
>To ihave3kids,
I'd have to say from my experience here in U.S., essentially all we have is self-pay. Docs treating these chronic conditions by & large don't accept insurance, which means patients pay cash, large amounts of cash, submit super bills to their insurance companies, and typically obtain very meager reimbursements, when their cash runs out, they borrow, and when that runs out, they quit seeking medical care….
>the more i read, the more i believe. thanks, wpi. and thanks mecfs forums. xoxooxox
>Are you going to be prescribing anti-retrovirals to patients who test positive for XMRV, in spite of the fact that most researchers now believe that XMRV is a lab contaminant?
Will you prescribe other medications?
Will insurance pay for anti-retrovirals?
Even if it the XMRV is there, what is the basis for beleiving that it causes disease?
>Oh silly Anonymous poster. Do your research. :)
This is great news, Jamie. Congrats to the WPI. This is very exciting news.
>Great news indeed. Glad you're getting Dr Bhakta on board. She's one of my physician and she's awesome, so please leave her some time for me!
>@Anonymous
I was found xmrv+ by Serology. This appears to be the least disputed area/finding in this ongoing saga. If I can find someone to do a few other tests and prescribe ARVs, I will absolutely take them… unless you have a viable alternative. I would rather live the rest of my life in a functional state, if possible.
>I was found XMRV+ by culture and serology. I've been sick 18 years and have been fading fast the last 2. I don't have anything to lose if I take ARV's. The existance I have is not really living. Experimental treatments are done all the time and always have risks. They give arv's to healthy partners of HIV patients to prevent the spread of the retrovirus. The only reason I can see that they are trying to prevent us from trying them is that we might actually get better. Cancer patients and other diseases are offered treatments as a last resort and many of us are at that point. The way this illness and patients have and continue to be treated is a crime against humanity. Even animals are helped out of their misery. Yet we are expected to endure horrific conditions and for years.
>I pray that your work grows wings and that the children around the world suffering this horrendous disease can once again have the life that this disease has taken away. Fun, Laughter, holidays, friendships, joining sports teams, giggling in the cinema and finishing school with the aim of a fulfilling career. These are the things I wish for my children – Now We Have HOPE.
Lesley McLeod. Australia
>This is great news indeed!! Thank you for starting this clinic!! Can't wait to go someday.
>Will the WPI physicians be prescribing antiretroviral drugs to patients who test positive for XMRV at WPI?
If yes, how much will this cost the patient? (Of course it would not be covered by insurance.)
>Thank You Jamie for your tireless efforts, you are an angel!! Thank You to the two new Dr's who have come on board and Thanks to WPI for remembering we are out here.
>"A journey of a thousand miles begins with a single step.
~ Lao-tzu
Gesundheit!
(Sorry, couldn't resist)
>The journey to astrocyte depolarization starts with a single toll receptor.
———————————————
http://www.ncbi.nlm.nih.gov/pubmed/21722376
BMC Neurol. 2011 Jul 1;11(1):82. [Epub
ahead of print]
EEG spectral coherence
data distinguish chronic
fatigue syndrome patients
from healthy controls and
depressed patients
A case control study.
Duffy FH, McAnulty GB, McCreary
MC, Cuchural GJ, Komaroff AL.
>I have been a patient of Dr Bhakta's in the past. You all will LOVE her. She is AMAZING and so sincere and compassionate. She is so passionate about what she does. She is also a wonderful person to know.
Sad for us here in Southern California suffering with Chronic Lyme Disease, but good news for you all over there dealing with XMRV. She probably knows more about XMRV than any doctor in our state.
Best to everyone!
>Dr. Bhakta is fantastic!!!She seems to have a comprehensive understanding of the complex cocktail of pathogens (viruses) that cascade into a myriad of different disease states. They are lucky to have her!!!