WPI adds "XMRV Research" Tab/ Research Form

K

_Kim_

Guest
WPI Research Questionnaire is now online!

WPI Volunteer Questionnaire

All information you provide is personal and confidential.

Personal Information Last Name: First Name: Middle Initial:

Male Female

Date of Birth: / / (enter date as: MM/DD/YYYY)

Street Address:
City: State: Zip Code:
Country:

Home Phone: (enter phone as: XXX XXX-XXXX)
Work Phone: (enter phone as: XXX XXX-XXXX)
Cell Phone: (enter phone as: XXX XXX-XXXX)
Email:

Physician Information Last Name: First Name: Middle Initial:
National Provider Identifier (NPI):
Street Address:
City: State: Zip Code:
Country:

Office Phone: (enter phone as: XXX XXX-XXXX)
FAX: (enter FAX as: XXX XXX-XXXX)
Email:

Medical History ⇒ Primary Diagnosis (please check all that apply)
ME/CFS
Fibromyalgia
Multiple Sclerosis
Encephalopathy
Lupus or other auto-immune disease
Other, please describe:
Date of Onset: / / (enter date as: MM/DD/YYYY)
Date of Diagnosis: / / (enter date as: MM/DD/YYYY)

⇒ Initial Symptoms (please check all that apply)
Headache
Sore throat
Painful muscles
Painful joints
Fever
Rash
Gastrointestional disorders
Nerve pain
Disturbed balance
Profound weakness
Difficulty with short term memory
Difficulty with mental processing
Other, please describe:


⇒ Current Symptoms
Are you currently having any symptoms? Yes No
If you are currently having symptoms, please list below:


⇒ Current Medication
Are you currently taking any medication? Yes No
If you are currently taking medication, please list below:


⇒ Co-Infections
Do you have any co-infections? Yes No
If you have co-infections, please list them below:


⇒ Secondary Diagnosis (please check all that apply)
Asthma Cancer, please specify type:
Cardiovascular Disease Crohn's Disease
Diabetes Inflammatory Bowel Disease
Neurological Disease (Alzheimer's, Parkinson's),
please specify type:
Pulmonary Disease

⇒ Surgeries
Have you ever had any surgeries? Yes No
If you have had any surgeries, please list them below:


⇒ Blood Transfusions
Have you ever had a blood transfusion? Yes No

⇒ Adverse reactions to vaccinations
Have you ever had an adverse reaction to a vaccination? Yes No

⇒ Other complicating factors
Do you have any other complicating factors? Yes No
If you have had any other complicating factors, please list them below:

Family Members Health ⇒ Do any immediate family members have a neuro-immune or related disease such as prostate cancer, autism, etc.?
Yes No
Mother, please specify diseases and/or conditions:
Father, please specify diseases and/or conditions:
Brothers, please specify diseases and/or conditions:
Sisters, please specify diseases and/or conditions:

⇒ Do any children have health issues?
Yes No
Child 1, please specify diseases and/or conditions:
Child 2, please specify diseases and/or conditions:
Child 3, please specify diseases and/or conditions:
Child 4, please specify diseases and/or conditions:
Child 5, please specify diseases and/or conditions:

⇒ Would you like to be a part of the WPI research program by donating your blood sample to the WPI repository?
Yes No

Would you like to make a donation to support the WPI Research Program? Please see the "How to Help" tab on our homepage.

Thank you!
 
K

_Kim_

Guest
A new tab -XMRV Research- has been added to the Whittemore Petersen Institute website. I've included some excerpts from some of the sub-pages, but it is worth reading in its entirety.

  • Overview
    We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
  • Research & Trials
    Another critical need is a comprehensive database of patients with information on your diagnosis, conditions, family health and similar items. You can help by completing the research questionnaire and including your information for our researchers to study.

    If you would like to be considered for participation in current or upcoming clinical trials, and include your information in our research database, please complete this research questionnaire.

    For more information, please contact:

    Research Program Coordinator
    Whittemore Peterson Institute
    6600 N. Wingfield Parkway
    Sparks, NV 89436
    patientinfo@wpinstitute.org
  • Questions & Answers
    What is the link between XMRV and ME/CFS, fibromyalgia and other neuro-immune diseases?

    Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases. Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

    A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.
    How is XMRV transmitted?

    XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses.
    Is XMRV airborne?

    No, retroviruses are not traditionally airborne viruses. However, since XMRV is a blood borne retrovirus, it may be possible to transmit through sexual contact, sharing needles, blood transfusions, and breastfeeding. Sharing household items like toothbrushes, razors, or items that come into contact with blood is not recommended as a precautionary measure.
    What does it mean if I am infected with XMRV?

    The research continues to fully understand the connection between ME/CFS and XMRV, as well as what it means to have the virus. We do not know all of the health ramifications of XMRV or ME/CFS, but we do know that some people with ME/CFS, have on average a lower life expectancy than someone without this chronic disease. In other studies XMRV has been detected in very aggressive cancerous prostate tumors. One may have XMRV and not have ME/CFS as evidenced by positive results of 3.7 percent of our control samples.
    Why was XMRV looked for in neuro-immune diseases?

    Patients who have been diagnosed with ME/CFS have been shown to have a unique immune deficiency in a part of their antiviral system called the RNase L pathway. This pathway was also deficient in men whose cancer samples were first used in the discovery of XMRV. In this study, however, Whittemore Peterson Institute researchers have found XMRV in patients without an RNase L pathway deficiency. It is not known if XMRV causes this deficiency or if patients with this deficiency are more susceptible to the virus’ effects or both.
    Can you catch ME/CFS?

    Causation of ME/CFS is likely to be a multi-factorial process which occurs in a susceptible person with common viral co-infections. Chronic fatigue syndrome (ME/CFS) is a complex, systemic neuro-immune disease that is estimated to affect over one million Americans and 17 million people worldwide. ME/CFS has traditionally been diagnosed by the exclusion of other similarly presenting conditions, such as MS and lupus, and by a series of symptoms; making the diagnosis an expensive and difficult process. Until now, a single viral link (while suspected by many) had not been made because so many common viruses have been found to be reactivated in persons with ME/CFS. This finding suggests a role for XMRV in the pathogenesis of ME/CFS and creates a better understanding of the disease. Our work suggests but does not prove that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.
    If I am pregnant or thinking about getting pregnant and have ME/CFS, should I be concerned about protecting my unborn child?

    As a ME/CFS patient who is either pregnant or thinking about getting pregnant, you should speak with your physician regarding XMRV and safety measures you can use to minimize possible transmission of this virus to your child.
    What can my doctor do for me if I test positive to the XMRV virus?

    Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. Obviously, only begin any therapies approved by your physician.
    I have been diagnosed with ME/CFS and recently tested positive for XMRV. My friends and family ask that if I am sick and have a retrovirus, why do I look normal?

    Like other retroviruses known to infect humans, these illnesses appear to be invisible to the untrained eye. A physician, however, can see the signs of illness, and still must carefully examine the patient to know for certain who is ill and with what disease. Many diseases fall into this category. Unless one develops a disease that creates physical lesions that people can see e.g. psoriasis, the mask of lupus or the crippling bone changes of arthritis, most people can not see how debilitating the illness actually is. In addition, each person responds differently to treatment and therefore can maintain a higher quality of health and appearance of health. In the case of HIV, many people are infected but do not appear to be ill.
    Most thought ME/CFS was a woman’s disease. But XMRV has been found in men with prostate cancer and now people with ME/CFS. What does this say about ME/CFS?

    ME/CFS is not a woman’s disease. In fact the epidemiological study done by Dr. Lenny Jason has shown that this disease occurs in men and women and is also prevalent in children. Instances of outbreaks in which entire families and groups of friends became ill near the same time, have been reported across the US, the UK and other countries.
    Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease?

    Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.
 
K

_Kim_

Guest
Auto reply

Here is what I was emailed after I submitted the questionnaire:

Thank you for submitting your research questionnaire to WPI. Your information will help us understand more about the prevalence and impacts of neuro-immune diseases.

In many cases the information you have provided will be enough for us to learn more and you will not be contacted for more information or blood samples. Some people may be selected for inclusion in future studies, and if you become one of those people, we will contact you for more information and possibly blood or similar samples. If you are not selected for future studies, please know the information you have submitted is helping us as a part of our research database.

Again, thank you for your willingness to help.
 
G

George

Guest
They get it, they really, really get it!

Even their robo replies make me feel heard and counted. (snif, snif):eek:
 

starryeyes

Senior Member
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We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested.
This is the part I hadn't seen before: 95% of FMS patients. I hadn't seen that yet. I saw that they had found 12 out of 20 FMS patients had XMRV. Did they run the antibody test on them later like they did us?

Wo.

tee
 
G

greybeh

Guest
My thoughts, too. Found this to be a bit confusing and would like specifics on fibro patients (I have fibro - my mother is diagnosed with fibro/CFS)
 

Jenny

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"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested."

This statement doesn't make sense grammatically. I suspect they meant what they said originally - something like:

We have detected the retroviral infection in 95% or more of a group of 200 patients who had been diagnosed with either ME/CFS, Fibro, or Atypical MS.

Jenny
 

LaurelB

Senior Member
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I submitted my survey but did not get a confirmation email in return. Did everyone else get one? Now I wonder if I need to do it again. :confused:

Also, my doctor is a naturopath and therefore does not have an NPI. Hopefully that's not a problem.

Thanks!
 
A

anne

Guest
If I am pregnant or thinking about getting pregnant and have ME/CFS, should I be concerned about protecting my unborn child?

As a ME/CFS patient who is either pregnant or thinking about getting pregnant, you should speak with your physician regarding XMRV and safety measures you can use to minimize possible transmission of this virus to your child.
This one cracks me up. 99% of doctors will give a bewildered, "HAWABABA?"
 

garcia

Aristocrat Extraordinaire
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"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested."

This statement doesn't make sense grammatically. I suspect they meant what they said originally - something like:

We have detected the retroviral infection in 95% or more of a group of 200 patients who had been diagnosed with either ME/CFS, Fibro, or Atypical MS.

Jenny
Grammatically it does make sense. Its just that some people don't know how to parse it logically (there is really only one way of logically interpreting it). As you said it means all patients combined (200 of them) with various conditions, 95% tested positive (in some form or other) for XMRV. Presumably the bulk of these are ME/CFS at 99% +ve for XMRV, then the various other conditions at lower percentages. As such it says absolutely nothing about the rates in Fibro.
 

annunziata

Senior Member
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No confirmation

Hey Laurel, I sent in my questionnaire last night and there has been no confirming e-mail. I've been wondering foggily if I might have done something wrong.

Amy
 

jackie

Senior Member
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Anne! I'm "supposed" to be "BENCHING" myself?!

But your comment about Docs reactions to XMRV/Pregnancy SO cracked ME up!

(Like the NEUROLOGIST I saw that asked me to SPELL "Myalgic Encephalomyelitis" for him!):eek:

By the way...I just filled out the research Questionnaire.

I'm hoping when they read the amount of Acyclovir I've taken for 3.5 years - they MIGHT be interested. I keep offering it and offering it - but no takers!?

Sometimes I feel like climbing on my roof and screaming to the world "ISN'T ANYBODY interested in my BLOOD!!!???":rolleyes::eek:

Backing away from the Laptop........jackie;)
 

Daisymay

Senior Member
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Do you have to live in the US?

Please excuse me being thick here, but do the WPI only want people living in the US who could go to ythe WPI etc to fill in this questionaire or are they wanting data from people across the world, and from those they will only use some people in their physical research?
BW,
Daisymay
 

Christopher

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Please excuse me being thick here, but do the WPI only want people living in the US who could go to ythe WPI etc to fill in this questionaire or are they wanting data from people across the world, and from those they will only use some people in their physical research?
BW,
Daisymay
One of the fields in the form asks for a country, so they are set up for taking responses internationally, I would gather.
 

froufox

Senior Member
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Hi Laurel & Amy,

I filled the questionnaire out last night and received a confirmation email straightaway. I agree it made me feel really validated too compared to most other meaningless questionnaires I've filled out over the yrs! It gave me a comforting feeling doing this one :) Thnx for posting Kim.
 

jackie

Senior Member
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Hi Guys! (Laurel, Amy, George, Kim) I filled out the Questionnaire (last night) and didn't even receive a robo answer/e-mail.

I can't believe what I entered for "NPI#"....my insurance company name!!??:eek::eek::eek: oh pooh!:(

Thanks Kim, for the link - I just looked up the "real" NPI# for my doctor.

Now what do I do?:confused:

jackie:eek:
 
K

_Kim_

Guest
Please excuse me being thick here, but do the WPI only want people living in the US who could go to ythe WPI etc to fill in this questionaire or are they wanting data from people across the world, and from those they will only use some people in their physical research?
BW,
Daisymay
Someone asked Andrea a similar question and she said (paraphrasing) that WPI was created to help people all around the world with neuro-immune diseases. Everyone is invited to participate.