I just received this e-mail from the Whitmore Peterson Institute in Nevada. They are the ones that just linked Chronic Fatigue Syndrome to a virus. I think it would be helpful for all of us to submit our information for possible study. It is only a matter of time before they start connecting CFS to Parvo. Here is the link. You can fill it out online.

The Whittemore Peterson Institute is pleased to announce that the research questionnaire is now available online.  Please visit http://www.wpinstitute.org/patient/volunteer_form.html to fill out the form and submit it.  All information you provide is personal and confidential.

Yes, I am still here. Life has been very stressful and I am feeling overwhelmed right now. I won’t go into details. I do appreciate the comments that you leave to each other. That is what the site is for.

I will say that part of my thesis project has to do with trying to communicate how we feel about chronic illness. I am trying to do a series of paintings, each tackling a moment in our journey. Perhaps you can help me by answering one question. How do you feel about your illness right now, today? For myself I have angry days, I have frightened days, I have days where I am resigned to it. I have hopeful days and guilty days. How about you? How do you feel about your illness today? Perhaps I can figure out a way to depict that.

My best wishes go out to all of you. I know for myself this is a difficult time of year. I love fall, but it does not love me. I am still doing far better than I have before, but I am feeling it. I am needing those naps. Funny thing. I had two small fillings replaced last week and my mouth is still so sensitive. I really think this is the Parvo. It seems that any sort of pain lasts longer and that I am just more in tune to it. Drat.

Happy Autumn!

Thank you for your interest in the Whittemore Peterson Institute and our new research findings on XMRV. We have been overwhelmed with both your encouraging comments and the volume of email and traffic to our web site. We are working on answering many of the general questions posed in the last few days. Individual specific questions will be evaluated and responded to as appropriate. – XMRV Testing: The number one request has been ?how do I get tested for XMRV?? The WPI is negotiating an agreement with a clinical laboratory to allow for limited testing. These limited test services will be made available as soon as possible and we will provide information on this website as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back to our website for updates. – Research Studies: If you are interested in possibly being selected to participate in ongoing or future WPI research studies, we are working on an interactive form for our website. It should be available in the next few days, and we encourage you to complete the form at Whittemore Peterson Institute for Neuro-Immune Disease. While every study has specific requirements and not all who volunteer will be accepted, your willingness to participate is both crucial and deeply appreciated. – Becoming a Patient: WPI is currently constructing our new home on the campus of the University of Nevada School of Medicine. It will open in the summer of 2010. At this time we are not able to accept patients, but would be happy to add your name to our interest list. With the rapid pace of research discoveries, we hope that there will be new treatment and diagnostic options available when we celebrate the opening of the new building. The discovery of XMRV in ME/CFS patients opens an entire new avenue of neuro-immune disease research and our discovery has brought to this field world-renown immunologists and retrovirologists. Our team of collaborators is working daily to translate our discoveries into new treatments as soon as possible. The discovery also raises many new questions about the role of XMRV in these diseases, how it is spread, what new or existing treatments may help combat the virus, and how treating the virus might improve the health of patients. For access to what we know to date, please see our XMRV Q&A. We will update it regularly and keep you informed. Whittemore Peterson Institute – XMRV Q & A We know many of you have been waiting years for answers, accurate diagnoses and some kind of effective treatments. All of us are dedicated to finding these, and we will continue to work as hard and as quickly as possible. Please remain hopeful, and keep in contact with us via the website or email. Making sure we have all of your contact information will ensure we are able to contact you with further information as it becomes available to us. Angelina Gordon

Here is the link to a report on NPR about the new CFS breakthrough. http://www.npr.org/templates/story/story.php?storyId=113650222

Now that they know CFS is caused by a virus and will start treating it with antivirals it would seem that there would be an obvious link to Parvo – as so many of us have been diagnosed with CFS by doctors who do not want to give validation to the Parvo as the  cause  of our symptoms. No longer can they claim we are depressed, or need to join a yoga class and the PTA.  This gives me hope.

Hi,

Thought I’d write a little update before I dive into my painting project for today (a six hour portrait from life – me looking in the mirror!).

The adjustment to going back to school has been slow and painful but I am making progress. I did not cry last week! The week before I found that several mornings I would feel overwhelmed and cry around 9.30 or 10.

Yesterday I met with a dietician. We went over what my average daily intake of food is and calculated how much of this and that I am getting. She said with all the fruit and veg that I am doing fine on vitamin C and that I shouldn’t have to worry about calcium either, but that if I want to continue with my supplement (started taking when I broke my food) that it would be fine. Her one area of concern was that my portion sizes are not big enough to give me the protein I need to keep my energy levels up. I do eat legumes every day, but really not enough. I have not been using soy but will add it in for one meal – soy milk to my smoothie. She said one serving would not be enough to cause issues with hormones. Also, I am to increase my intake of quinoa – which has just under 10 grams of protein per serving as compared to 7 in beans. I am to shoot for 50 – 70 grams per day – right now am only getting maybe 20.  So, I am hoping this will help sustain me. Also, she said that I need to add back in some healthy fats – which I really have not been using much of at all. She said they will help regulate moods. Need that!

I asked her why when a person is diagnosed with a chronic illness that doctors don’t refer patients to dietitians. It just seems logical. She said most doctors have had one class on nutrition and that they just are not trained in it – it is all about drugs. That to me is so sad. She did say that Loma Linda is now requiring all of their students to take more in-depth study in nutrition. Hopefully it will be a move for the better.

Hang in there! Eat your quinoa!

Serena

Well, I am finding that going back to school and driving five hours a week is pretty hard on me. My husband is great and helped with driving when I was too tired, but there have been days where doubt and frustration take over and I become an emotional mess. It is so difficult not knowing how your body is going to react to what is just normal living for other folks. I have started drinking cherry juice – read that is good for joint pains. I could not find the concentrated juice though, only the reconstituted, so not sure if it is as effective or not. Have any of you tried it?

I also tried the Helo sauna yesterday. The dry heat really felt good, did not help my fatigue issues, but did help with muscle and joint pain. I’ll give that another go tomorrow.

I hope you are all hanging in there. I’d love to know if you have found treatments that help, and if so, how we might educate our own doctors.

Off to rest.

Serena

Another month has come and gone and we are having our own pressures – trying to short sale on our house (after fighting for a modification for the past eight months), yesterday the timing belt broke on our subaru – leaving us stranded in the desert at 120 degrees. So, now spending money on a rental and trying to find a new used car that we can pay cash on – can’t afford payments right now. Family members all around us have lost jobs, or taken huge cuts in pay, losing houses. Times are tough and when under stress I do worry about the Parvo making a flare up. I have been trying extra hard to eat those greens and summer fruit. I have been trying to rest, though there are nights where I just can’t turn my brain off.

I have just been accepted to graduate school – something I have wanted to do for years – wanting to improve my painting skills and have the credentials to teach at a college or University. I figure if I do adjunct teaching I can take time off when the Parvo gets bad. So, I am searching for grants and scholarships..

Anyhow, many things on my mind. I still don’t have  all the answers but feel camaraderie with all of you and hope that somehow if we keep tabs and let each other know what works and what doesn’t we will get there.

So, can anyone suggest a good used car for mountain driving – steep hills and sharp curves?