Testimony of Jamie Deckoff-Jones MD
CFSAC
September 17, 2010
To whom it may concern:
I am a 56 year old emergency physician. I have been diagnosed with CFS, chronic Lyme Disease and atypical MS. My 20 year old daughter has been diagnosed with CFS and chronic Lyme Disease. I have been ill for 16 years and disabled for 6. My daughter has been ill for 7 years and disabled for 4. In the last few years, I have almost died twice and my daughter has been hospitalized for cerebral vasculitis. My husband has been ill for 7 years and is functional. My 15 year old son is clinically healthy.
In October of last year, I read the Mikovits paper in Science. It was immediately apparent to me that our illness was of retroviral origin. In February, my daughter and I tested positive for XMRV by culture. We were both almost housebound at that time. With the help of a compassionate family doctor and the guidance of an experienced AIDS doctor, we started the three antiretroviral drugs that tested in vitro against XMRV in the Singh study. Six months later, my daughter has started community college and I am planning a return to part-time practice. As always with clinical medicine, there are confounders, but I do not think it possible that we have not been helped by antiretroviral therapy.
Because the patients have no help, I started a blog to share our experiences with treatment and my clinical ideas. The response has been enormous. My email is filled with stories of unbelievable pain, neglect and abuse. The wasted lives and wasted talent are a national disaster. Instead of contributing, a staggering number of people are unable or almost unable to care for themselves.
Since CFS patients don’t die from their disease for a very long time, there is a tendency to feel that there is no hurry. Good science takes time after all. But it is a progressive disease. There are a staggering number of patients who are too sick to wait. They need compassionate care. They’ve been denied basic care, even common decency, for decades. It’s been a year since the association between XMRV and CFS was elucidated. Scientists say causation has not yet been demonstrated. I say it should be a clinical assumption at this point. As a physician, it’s obvious from the stories and family histories of the patients contacting me. Where have the epidemiologists been all this time? I am an emergency doctor and this is an emergency!
To me, it’s a miracle that existing safe drugs may be effective. It is a travesty that clinical trials have not yet begun. It brings shame on the medical profession that doctors are unable to connect the dots. If there was a hurricane or an earthquake, everybody would be rushing to help. Even if all resources are immediately mobilized, many will be lost. The patients have very advanced disease. It is beyond a disaster.
New babies are being born with it every day. Is it possible that AZT in pregnancy will prevent it, as it does HIV? Why is nobody trying to find out?
The WPI has single-handedly made things happen for patients. Why are they not funded? They are a tiny non-profit. They have handed the world the answer on a silver platter. Is our government ever going to step up to the plate?
Sincerely,
Jamie Deckoff-Jones MD
Santa Fe, NM
>Bravo! Bravo!
>Excellent!! Thank you so much.
>What a profoundly moving account.
>Standing ovation, with tears. Thank you!
>Dr, Jamie, THANKS for your brilliant posts! Every M.E. and CIND patient owes you a debt of gratitude. Your great post today describes the tremendous loss to the world to have some really great people have their lives destroyed, while the CDC and NIH not only dither, but actively inhibit any kind of quality work to find out what is destroying these lives. this has gone on for decades. Webster's dictionary says "to define, is to make clear, to differentiate". It has been abundantly clear for 25 years or more that this patient population is often deathly ill. and to have supposed "experts" at the NIH and CDC wait for decades and leave some of the sickest patients on earth bedbound for "six months" before they can be declared ill with M.E. or CFS or FMS is just a crime. And to make some of us wait for25 or 30 years before even looking for new viruses is not just a national disgrace, but i believe a crime. I think that without the WPI crew isolating XMRV, i believe that our governmental "experts" would have pushed this psychosomatic paradigm for years more. I wish you all the best in your continued recovery and Thank you from the bottom of my heart for being brave enough to take the chance to help yourself and your daughter, and to share your results and your experience with the world. May whatever angels exist in this world, protect you in the second half of your life! All Blessings and positive experiences towards you and your family. Because of your bravery and dedication to helping others, many very sick people might try to stave of suicide for a while longer in hopes that they too, might possibly have a chance to recover like you! xoxo TMH
>Jamie, Thank you so very very much for having the courage to go forward with treatment, for openly and honestly sharing your experience — and now for helping to serve as our collective voice to CFSAC. You give us all strength. Jan (XMRV+)
>Thank you very much Jamie :)
>Thank you so much for your testimony.
Patricia Carter
http://www.mecfsforums.com
>Wow!
>Maybe this is THE CFSAC Comment that will get someone's attention. Thank you Jamie! There are no more excuses available to our government. The time to act is now; if they don't get the WPI funding, and Drs Klimas, Singh, Cheny, Sudaholnik and Bell's patients in clinical trials, our will must be gathered to begin a Congressional Hearing by May 2011.
These crimes against humanity must stop. I urge all who care that the public is unaware of their danger to please join the ME/CFS Worldwide Patient Alliance:
http://www.causes.com/causes/511536
NOW; give your input and donations if able, for we are going to make the world aware of XMRV/MLVs and what needs to be done immediately to protect the blood supply and expedite tests and treatment for all those diagnosed with CFS, ME, FM, GWI, Autism, Atypical MS, and on and on…
Jamie, may you and your family continue to regain your health and futures, may you be blessed in abundance for your support of all the rest of us.
>Thank-you so much Dr. Jamie for so personally speaking out for all of us and for those to come who may not have to suffer so.
>While I'm sincerely pleased to hear that anyone is improving, I feel compelled to speak up as I believe you're giving a lot of patients some false hope, however unintentional. With all due respect, some of your statements are just not factual, or at the very least, presumptuous:
"They (the WPI) have handed the world the answer on a silver platter."
THE answer? You mean there is only ONE cause of CFS/ME? Nothing else contributes to the illness? If that's the case, then why were you on IV antibiotics for 2+ years? What about people who get very sick from black mold or other environmental toxins? What about the many patients diagnosed with CC CFS/ME who got better using Valcyte and/or other antivirals (Dr. Lerner's and other patients)? Isn't it possible that there are many different causes or triggers, and not just one?
"To me, it’s a miracle that existing safe drugs may be effective."
SAFE drugs? Then how come so many who have tried AZT have become SICKER using AZT and some of the other antiretrovirals?
How come it seems like you and your daughter are virtually the only people who have improved on these drugs? Is it due to the many other things you treated first?
"Scientists say causation has not yet been demonstrated. I say it should be a clinical assumption at this point."
Because of conversations you've had with patients? You're basing your argument on family histories of patients you've talked to, instead of what scientists and researchers (including Dr. Mikovits) are saying? Have you talked to Dr. Peterson, who has said none of his patients using ARV's are improving?
If XMRV is the cause, if it's so obvious, then please explain why 10 times as many healthy people have XMRV compared to CFS/ME patients. Could it be possible that there are other factors involved?
Thanks for reading my post. I hope you'll respond to these concerns and questions, so we can have your full story, so then we can truly understand why you are improving, when almost no one else taking ARV's are.
>thank you for your updates and writing such a great testimony
To the poster above. Many people with cfs have tried IV antibitics in a desperate attempt to seek relief. Myself being on of them. This is because the symptoms of Lyme and CFS are so similiar and the test for Lyme is notoriously unreliable.
Your statement about 10 times as many healthy people having XMRV as people with CFS is totally backwards. The positive studies are showing many, many more people with CFS/ME have XMRV and associated mulv's than controls. I believe the WPI is saying they are finding 85% are tedting positive in a recent interview vs 4 % of controls( healthy people)
>The only thing I disagree with is funding for WPI.
As a virologist I can say with certainty the Whittemore Peterson Institute is not respected. I work for Stanford. They are conducting a study but will not use the Whittemore Peterson lab to test patients in this study.
There are increasing numbers of complaints from patients about the practices of this institution (Whittemore Peterson).
If patients want help they should find another research institute to support. I understand the patient population holds the Whittemore Peterson Institute in high regard (too high in my opinion) but they are not in a position to do the work necessary to truly understand these retroviruses.
>Anonymous, can you cite sources for patient discontent with WPI — websites, bogs, publications, etc?
Besides Stanford, what other research institutes do you recommend patients support?
>Gee
The Journal Science thought there work was of high enough quality to publish there findings. The NCI and Cleveland Clinic collaberated and verified there findings. And the NIH and FDA have backed up the WPI's findings.
If you work for Stanford tell them to get something on CFS published in a journal such as Science. Tell them to culture the virus. Tell them to develop an antibody test and take pictures of the virus.
Then Stanford can talk about gaining respect in the CFS community.
>Anon from Stanford, truth be told its professional jealousy that a small independent group did what no-one else wanted to do. Perhaps the complaints about WPI come from the upstanding and respected research centres who failed to search for a retrovirus the past 20 years and now have to play catch up. WPI got support from NCI and CC for that first study, think that says a lot.
WPI is respected by the patients because they believed how desperate the plight of ME and CFS patients is, and they got the job done before the building was finished, they're determined and they mean business! They have a virochip assay and cytokine profiles, so that all patients will get a proper diagnosis and treatment. Hurrah for WPI and Jamie's testimony to the CFSAC!
>''As a virologist I can say with certainty the Whittemore Peterson Institute is not respected. I work for Stanford. They are conducting a study but will not use the Whittemore Peterson lab to test patients in this study''
Hmm an Anonymous virologist huh? Well a virologist who likes to make wild accusations based on zero fact and here is why….
The WPI hasn't started seeing patients yet and hasn't even appointed a medical director. So these patients you say are complaining, are ficticious and in your head. Nice try, now go elsewhere this is a serious blog for seriously ill people. Thank you.
>Thank you very much for everything you do to make the public aware of this horrible disease. You are an inspiration.
I will do whatever I can in another small (dutchspeaking) part of the world to get the attention of the public.
I wish you all the best.
Love,
Esther
>"Your statement about 10 times as many healthy people having XMRV as people with CFS is totally backwards."
Not if you look at it population-wise.
Using the figures from the original Science paper, 67% of patients were found to be XMRV positive, compared to 3.7% of controls.
The estimated number of patients with CFS/ME in the US is approximately 1.5 million people, possibly 2 million.
The estimated population of the US is 306 million as of 2008. Let's round that off to 300 million.
3.7 percent of 300 million is a little more than 11 million people. I'll admit that's not exactly 10 times the number of XMRV positive CFS patients, but it's roughly NINE times as many, and certainly a much larger number than those who are ill.
That suggests that there are multiple causes of CFS/ME, or other things involved besides XMRV, and maybe means that XMRV and MUL'S might not be 'the' cause at all.
Something to think about.
>Hello,
Thanks so much for this writing. I yearn to know and keep informed about your personal brave steps forward on your own body to organize and find this potential healing! Thank you so much.
Mother of a CFS daughter
>God i love this woman!
>Responding to Anonymous …
"Using the figures from the original Science paper, 67% of patients were found to be XMRV positive, compared to 3.7% of controls.
"The estimated number of patients with CFS/ME in the US is approximately 1.5 million people, possibly 2 million.
"The estimated population of the US is 306 million as of 2008. Let's round that off to 300 million.
"3.7 percent of 300 million is a little more than 11 million people. I'll admit that's not exactly 10 times the number of XMRV positive CFS patients, but it's roughly NINE times as many, and certainly a much larger number than those who are ill."
In the first place, you CANNOT use the numbers you are using because 1) The CDC admits that CFS is GROSSLY under-reported, and the incidence is believed to be at least 6-10 TIMES HIGHER than is being reported 2) Like HIV, XMRV can lie dormant in the body for decades before becoming activated. The controls that tested positive could well be those who will eventually succumb but currently their immune systems have the virus in check.
ALL neuro-immune related diseases have a wide spectrum of symptoms, including but not limited to new allergies or sensitivities (eg, MOLD). This is certainly true in my case, and I never had any allergies or sensitivities at all until after I got a flaming case of CFS. Mold is not the cause of CFS, but a compromised or upregulated immune system will react, sometimes in non-typical ways, to something like toxic black mold.
Also, CFS patients are usually sensitive to meds, and this has often been a huge problem in finding a treatment plan. I have reacted to so many meds and even natural herbs, that I have lost count.
XMRV/PMRV is a complicated retrovirus that mutates frequently. This is why treatment has to be tailored to the individual, JUST AS IT IS WITH AIDS. The challenge is going to be to develop new anti-retrovirals even as more MLV's are becoming resistant and more mutations are occurring.
Also, CFS patients are at different stages in the disease process with different body organs affected. Treatment plans will have to support organs, detoxify and so forth. Genetics might play a role in how severely one is affected.
All this needs to be flushed out.
>Dear Doctor,
Thanks for sharing and bringing us hope!I have a question.Do you know or can you find out, how well tolerated the AIDS drugs were in healthy controls, way back when these drugs were first tested for AIDS patients?
>Thank you Dr.Jamie…I appreciate you sharing your journey. We can not forget that this is "Your" journey, and what works for you, may not work for everyone else. Wishing you and your family abundant health!
>Hi Marcia,
I agree with almost all of your points, as many of them mirror my original questions to Dr. Jamie on Sept 18, 2:47pm. This is definitely a complex illness with many other factors involved besides retroviruses, factors that also bring down or shift the immune response. It will be interesting, very interesting to see if they can show that MULV's or XMRV causes that shift. If so, then that will be big.
But regarding the number of people sick with CFS, it's interesting how you quote the CDC regarding this much larger number (as others often do), while so many others rightly trash them for the much broader definition of CFS that they use.
Isn't it quite possible that that's how they arrive at such a large number, because they're including people who have not been even remotely diagnosed with the Fukuda or Canadian Criteria definitions of CFS/ME? Could that be the reason you say the numbers are "grossly" underreported? Keep in mind that many of their studies are based on phone interviews of 'fatigued' patients.
The dormancy question is still a question. The HIV statistic is skewed by the fact that drug therapy has been around for 14 years now. The vast majority of those who got HIV before that became sick within months to a year or so of contracting the virus. That's a fact.
You make an excellent point about CFS patients being sensitve to meds. If XMRV plays a role in CFS/ME (as it could very well do) then this will be a big problem. Time will tell how this pans out.
I'm not the enemy, I'm sick too, have been ill for almost 16 years now. I just don't think its so cut and dry as the she states above, but what do I know? It would be nice to hear a reply or reponse from the doctor.
>How many Anonymous's are there? There is one who is a naysayer, criticizing the findings of the WPI, which is the only place that has actually found the missing virus. And this Anon is spreading malicious rumours that ART's don't work, despite Jamie finding them effective. Some people tried antibiotics. They would have improved if they had Lyme, a common co-infection, or another bacterial infection. BUT they would still have M.E.! As for his remarks about Stanford, yes they are jealous, because WPI has found techniques that work and Stanford is still groping in the dark.
To me, as a veterinarian, ONE disease is caused by ONE organism. Even allowing for variations in strains, how many different species of microbes are absolutely necessary to cause, say, rabies? One. Polio? One. Chicken Pox? One. And so on. I know Komarov stated that there are diseases that need 2 separate microbes. He could only quote Kaposi Sarcoma as needing HIV and another – but this is a tumour, an end result of a disease, it's not really a disease in itself. To me, M.E. is caused by XMRV or a close variant. You just don't need to postulate more than one bug to cause it. Epidemiologically the situation is equally clear. It's simply a bug that goes around, like a common cold. It's obviously not highly contagious, but to be in any position to comment you must have read Osler's Web carefully.