1st International XMRV Conference 9/7-8/2010 in Bethesda at NIH, Director Francis Collins Presenting

Hello Mardy and everyone,

I first want to emphasize that I have NO medical expertise or education.  I'm truly a layperson in regards to everything medical, although I do try to keep up with the current research and information.   I've read with interest about XMRV since the initial excitement a year ago.   I'm going to give my opinion, with the understanding that it is only from a layperson!

I have significant concerns that the cart has gotten before the horse regarding XMRV.   From the get go there were issues that concerned me.   First being that while WPI's study said that there may be a connection between XMRV and CFS, one of the researchers threw fibromyalgia into the mix during a television interview.   WPI has taken very quiet steps to correct that, but the misconception continues. 

My next concern is about causality.   Does XMRV cause CFS or are those with CFS more susceptible to XMRV due to compromised immune system?   I haven't read much that answers this for me, although perhaps that will be answered at the Conference held this past week, I've yet to see the information presented.   

I also have concern that WPI has moved at lightning speed to put together testing for people and even treatment, recommending a cocktail similar to that taken by HIV+ people.    Oh that scares me.   There have been 4 studies that couldn't replicate WPI's findings, and yet they have a test already?  

I know people who are already planning their party for when they are cured.   And I'm scared that XMRV isn't going to get them to that place.   I'm scared that taking the heavy duty medications intended for those with HIV will further harm some people and leave them even more sick.    I'm scared that this will come crashing down and we still won't have answers.

I pray that I'm wrong, I pray that XMRV is the valid cause (or one of the causes) of CFS and that treatment can cure people.   But I'm not holding my breath.

As for what Aimee wrote (beautifully, I might add -- I commend your reasoning, investigation and reporting), I appreciate and understand that Aimee is being clear about her education being in social work ... her 'formal education' that is, and not in anything 'medical', but I just had to stop myself when I read her bolded statement because I'd imagine that you could give Aimee a test about what western medicine thinks about fibromyalgia in a room with 99 MDs and DOs and she'd be one of the top scores.  Anyone who doubts that might want to go look at that 15 minute interview she did on Dayton TV which lead to me picking up the phone and tackling her to take a leadership role of a forum here at Lumigrate.  (It's one of the Top Picks here in the fibromyalgia section, if you want to know how to find it). 

As for what I think:  Since I once completely was 'well' after a really serious bout with CFS, I am going to write the 'subjective' about things from MY one case for your benefit I hope.  I have formal medical training (as I am an occupational therapist) AND informally (as I've had all these medical things going on for so many years), and I've been so very fortunate to usually have insurance so I could get allopathic/'western' medicine, and to have access to and the funds to pay for things insurance does not sometimes (and not other times).  I luckily also have lived in places that have these types of providers -- and good ones --- plus having my eyes opened to 'alternative providers' as long ago as 1975 through my father's chiropractor offering a 'family day' where I basically was seen for a few dollars.

So when my life was taken off track with chronic fatigue in 1989, I got really REALLY good MD advise and did everything they suggested and when I wasn't 100% and my friends knew it, one not only let me know of the chiropractor in our city at the time was helping a lot of her coworkers, she 'encouraged me' to go.  I'll have to ask Debi what her exact words were and see if she can remember, but my recollection and just knowing her so well, it probably was something like 'and Mardy, I REALLY think you should go to him'. 

And I truly credit the changes he made in my diet, in the supplements he suggested and provided, and the alignments that he made to my 'structure' with my very complete wellness after that.  I believe that the 'diet' that he recommended across the board was one which had a flaw in the morning foods that, combined with toxins in my body as a result of stress from college, inhaled toxins in cadaver anatomy and the secondardy effect of my switching to no meat and more wheat for a whole summer and fall with my return to what was fibromyalgia on the second 'pass'. 

In a nutshell, I very much agree with all of Aimee's concerns, above, and from MY perspective, what I have seen about XMRV and it's media coverage is such the allopathic 'machine' that it frustrates me to think of the expense to everyone to go about things as 'they' are saying to do. It seems like funding naturopaths, acupuncturists, chiropractors, homeopaths and etc., and providing specialists in psychology who understand the interplay of stress on the body and how to alleviate that would just make sense and not be that hard to implement in the United States at this time.  And most of all NUTRITION advice ... supplements to get the immune system just as 'normal' as it can be with as close to perfect nutrition as possible is just a 'no brainer' to me.  Food allergies and sensitivities that pull down the immune system are found out through testing that is not typically covered by insurances currently. 

If I were to wager on it, I'd put my money on that there is a retrovirus involved, as it's been also found in the late 1980s (as you'll see in the information I've prepared and posted in this Forum).  But in that the providers I've listed above have lots and lots of success stories about people they have treated with CFS, and I've personally had the experiences I've had not once but twice with my health getting back on track once I could afford and live in a community with competent 'traditional' and 'alternative' medicine, I have formed this opinion.  And then I created Lumigrate, which is about 'integrative medicine', with MDs, NDs, acupuncturist, social worker, spirituality guides, health coaches, life coaches, psychologists, nutrition experts, supplementation experts.  And many of the people writing are interested or already doing, remote telephone consultation work with people all over the US.  And compared to what I used to have to charge in a medical building, their rates are very 'efficient' for the consumer/purchaser. 

I truly hope that insurances and other programs start thinking the way I do and until that time I hope that every person does at least what they on their own can do.  There's a lot a person can do with reading free information, thinking, and doing differently on your own if that's what their financial situation requires.  So I encourage that, and not to fall into the trap of saying 'insurance doesn't pay for this and I don't have any money to pay for it so it's something I cannot participate in'.  Because that would be like Aimee, above, saying 'I don't have any medical training so therefore I cannot learn on my own as I have'..... and she CLEARLY has not let that stop her.