From Our Readers – Comments & Suggestions 12-16-09

Leery of Contributing Personal Data to WPI Patient Database

Re: “Whittemore-Peterson Invites Patients to Participate in Neuro-Immune Database & Be Considered for Emerging Clinical Trials”

I would like to participate in this but will not provide the detailed personal information over a non-secure connection (https). You [WPI] should also have a complete disclosure sheet stating how the information will be used and with whom you will share this. – R


Swedish XMRV Study

Re: The XMRV-CFS Replication Study in Sweden

Ain’t This Stuff Exciting? To have them trying to replicate the XMRV findings so quickly seems like some kind of a miracle, doesn’t it? The 75 scientists interested in XMRV that met in Cleveland this past week proved that an article in Science is nothing to be sneezed at, isn’t it?

I can hardly breathe, I can hardly wait until the first group does replicate these findings. However, we must not hold our collective breaths too long, as factors in certain parts of the world may be different than in the U.S. We must be patient, not just patients, right? Oh heck, I’m still excited. – S

This is great news. I especially liked how they were going to pick the people they study, generally using the Fukuda and/or Canadian definitions – not the current meaningless CDC definition! – M

Thanks particularly should go to the ME Research UK and Irish ME Trust and their supporters. Without money, this couldn’t have happened. – Q


It’s Hard for Others to ‘Get’ How Sick We Are

…I was a student intern at a child welfare agency many years ago now. I was given a case of a woman who had an autistic 4-year-old. I was there to hook her up to support services. Nothing in my life prepared me for walking into this mother’s life. Before going to her home I expected that her life would be difficult, her austistic child would place great demands on her, etc., etc.

I would never have dreamed that her life (her life, not her husband’s life or parents’ lives – they lived with this family – not her younger son’s life) was totally, I mean totally devoted to the care of this 4-year-old who was the size of a well developed 8-year-old. The minute I entered the door she closed and locked the door behind me and I knew that I had really not known anything of what this woman went through hour to hour, day to day, month to month and so on. The entire house was laid out to protect her 4-yr-old from himself. There was nothing on the walls, as he was able to bring things down off the wall, the cooking area was gated off from him -everything was about him. She cared for him day and night (he was also epileptic). She was a small woman and he was almost able to overpower her at 4. I could write pages on what this woman lived, and yet I can say I do not really understand what it must have been like to be her or this child.

I feel this way about my life, except that it would take a number of days for an onlooker to be able to absorb any sense of what my life is like with CFIDS. Maybe even longer. I never forgot this woman, her life or her children. And you know, even though she lived with other adults they really “didn’t get” what her life was like. – Q


So I Forget Stuff (Now Add Aging!)

Re: “What Did I forget Now? The Fibrofog Experience,” by Eunice Beck, RN

So I forget stuff. But these days, since I am definitely a senior citizen, I have to pay a bit of attention to covering up some of my more formidable gaffs or I’ll find my kids sort of giving each other one of those “Hmmm. Do you think Mom is okay? Suppose one of us should get her to move in with them?” looks.

One of my daughters has expressed some worry about my forgetfulness. (She just turned 50 [I think I can remember being only 50] and age is on her mind.) I tell her I’ll let her know when I forget to turn off the burners. Bless her little heart – she should read some of the stuff on [the ME/CFS & FM Message Board]. Some of the “I Forget” entries I’ve read over the years make me howl with laughter. – M


How to Get an Appointment at Whittemore-Peterson?

Q: I have just been reading your article on [the XMRV retrovirus in] Chronic Fatigue Syndrome. I have two friends badly affected with this and wish to contact Dr. Judy Mikovits, who I believe has published groundbreaking news regarding this virus. The people I know affected with this virus are keen to come to America to source treatment for this condition. I have checked the internet here in New Zealand but still cannot find her e-mail address or any contact details. Are you able to help with this query? – D

A: Here is the e-mail address for Dr. Mikovits, as provided in the Science article: Physical address: Whittemore-Peterson Institute, Reno, Nevada 89557, USA. If your friends are interested in evaluation/treatment at the new WPI treatment center (scheduled for completion in fall 2010), they might want to enquire with the WPI’s administrative offices. Their information e-mail is

Also, ProHealth and the HHV-6 Foundation will host a presentation & Q&A by Dr. Mikovits here in Santa Barbara on Friday, Jan 22 (2 to 4 pm Pacific Time). We will stream it live on, so you and your friends may want to watch. Note that our announcement of the event includes a link that you may use to submit questions so that Dr. Mikovits can consider them in advance.


Clearing Up Stuffy Head?

Q:  What’s good to clear up sinus headaches and stuffy ears, stuffy head? – A

A:  We asked ProHealth’s customer service people about this, and they responded:
“We have a product that may just be perfect for you. It’s specifically designed to help with exactly what you’re dealing with. It’s called Clear Sinus and Ear. Once you have read about it you can ‘click’ on the picture of the bottle, which will take you to details about ingredients, doses, and more.”


2010 May Change Many Lives

I think and feel that 2010 will be a year that changes many lives with this diagnosis… When I have a good cry & grieve for all the things I lost and am losing, it makes me stronger to deal with the days to come, good or bad. – K


“I Remember Me” – Documentary on ME/CFS

I ordered this in DVD and watched it this weekend. It is a powerful documentary. I highly recommend everyone suffering from this horrible disease to have their family & friends watch this film – maybe they will finally “get it” as to what we are suffering…. It made me cry, but it was so accurate & informative that it was worth the sobbing. – G

Note: ProHealth has been selling this highly informative & moving DVD since it was produced. Currently we’re selling it as a seasonal ‘gift’ possibility:
For $10 (formatted for US & Canada)
Or $12 (international format)


Posting on the Message Boards

Thanks to ProHealth for changing the ‘timing-out’ limit for posting on the message boards [when text not yet posted disappears] from 40 minutes to 2 hours & 40 minutes, understanding that some people just can’t get a post done in 40 minutes. – P


Low Dose Naltrexone vs XMRV?

I’m going to be starting the low-dose naltrexone in a couple of days, just got a prescription today. To learn more about it go to – it’s being used for a host of diseases, including FM, CFS, AIDS, various cancers, MS, Crohn’s disease and so on. Because it is supposed to be so good at boosting the immune system, I of course want to see if it would be effective against something like XMRV (which I don’t know if I even have). – M


Dr. Friedman’s Work to Encourage Physician Education

Re: “Dr. Ken Friedman’s Courageous CFSAC Testimony on CFS Education”

I just wanted to add that the Chronic Fatigue Research Center at UMDNJ has been involved in research on CFS, GWS and FM for at least 15 years. That makes it one of the longest-running such establishments, and therefore one of the most valuable. I was a CFS research subject for them on several occasions during the years that I lived in Bucks County, PA. Their researchers are knowledgeable, professional and compassionate; their research has been published in many peer-reviewed journals; and they have not to date been scared off by the politics or terror tactics of the CDC. I hope that the latter will continue to be true. We need to help that remain the case, by bringing this article to the attention of every US Rep and Senator. – G


Dr. Myhill’s Advice on Flu & Immunity

Re: “Flu – What Is It That Stops Many People from Getting It?”

Excellent article from Dr. Myhill. I think she hit all the points that are extremely important and I found this article very helpful and informative. – R


XMRV Test Sources?

Q: How can I get tested for XMRV?

A: That we know of so far, two US labs are offering tests directly to patients by mail. They are:

1. VIP Diagnostics Lab in Reno

2. Cooperative Diagnostics LLC in South Carolina

Note: Reflecting the early stage of the research, the labs emphasize that these tests are not meant to be diagnostic and are not to be taken as evidence of presence or absence of a disease.


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

1 Star2 Stars3 Stars4 Stars5 Stars (51 votes, average: 3.25 out of 5)

Leave a Reply