Making it easier for WPI

[Andrew]

I hear that WPI is so overwhelmed with patient emails that it's interfering with their work. And I would imagine that Judy Mikovits has got to be overloaded with this. She is probably trying to answer as many as possible, while trying to run a lab, and dealing with a scientific community that is not giving her fair shake. I get an image of Judy burning her candle and both ends and in the middle. The stress and strain must be phenomenal.

I think Judy's heart goes out to all of us, and that's why she offered her email. Reminds me of me when I was still working. Very driven, super helpful to others, dealing with difficult projects. I'd really hate to see Judy break.

I wonder if there is a way we can help make it easier on Judy and WPI.

 

[CBS]

I wonder if there is a way we can help make it easier on Judy and WPI.

Maybe Dr. Mikovits could focus on the science and Dr. Donica Moore could act as the spokesperson and advocate for the WPI.

Just a thought.

 

[xrayspex]

good idea, hmmm like what, agree to have a couple of spokespersons who handle any email contact or anyone have the energy to volunteer at wpi to help handle pr....

 

[Stone]

I think it might also help keep the emails and questions down if there were a little more information on their website. I read it, but somehow, I still find myself with more questions. At times it seems far too simplified. Maybe it's just because that is all the information there is at this point, but still I think some of what's on there could be more detailed.

And don't get me started about the VIPDx website. What's the deal with that? It's like a non-website or an anti-website or something. I know they're super crazy busy but...

 

[Andrew]

I don't know what their staffing situation is, but I bet they are channeling all their money into research, and all the work being done by Judy and a few grad students. Probably no administrative assistants and possibly not even a full time secretary.

Maybe we could avoid emailing Judy, and instead email the general email address. That way they can put a staff member on it or ignore it if they are overwhelmed. And possibly try to field questions here when we can.

Thoughts?

 

[Forebearance]

I would personally appreciate it if we all stopped e-mailing Judy Mikovits so she could finish my XMRV blood test!
Forebearance

 

[Stone]

I've never emailed her, but I can imagine how frustrating it must be, waiting and knowing people are personally emailing her with things that might easily be answered by someone else, although, I don't have personal knowledge of anyone doing this. I'm sure it must be happening though. It's bound to if she was kind enough to let out her email address. I hope people will think before sending her an email and consider whether or not it might be answered by a staff member. Have you been waiting long, Forebearance? I hope you get the result that helps you the most and I hope you get it soon.

 

[acer2000]

Maybe Dr. Mikovits could focus on the science and Dr. Donica Moore could act as the spokesperson and advocate for the WPI.

Just a thought.

I agree, and maybe Dr. Donica could do some work to help channel all of this energy in the patient community in a constructive, consistent, and organized way to get more money for research? Or maybe a patient advocacy group could do so. Isn't that what they are supposed to do? Posting comments on blogs and emailing researchers is fine, but its not the most organized of campaigns to get out message across and it shows. That would kill two birds with one stone, take some pressure off Dr. Mikovitz and get some advocacy accomplished.

Researchers themselves need money to do more research. At the very least we need to be identifying who holds the purse strings and emailing them in an organized way.

 

[Andrew]

Maybe Dr. Donica could be the point person at the WPI facebook.

 

[sensing progress]

Maybe Dr. Mikovits could focus on the science and Dr. Donica Moore could act as the spokesperson and advocate for the WPI.

Just a thought.

I remember there was a press release announcing Dr. Donnica as their spokesperson. But since that announcement she has been
(paradoxically) nowhere to be seen or heard from regarding CFS/XMRV/etc...

 

[eric_s]

I have never emails Judy Mikovits personally, i have emailed the WPI once, months ago, but didn't get a reply. What i would be most interested in are the results of their not yet published studies and they can't and won't talk about that anyway (which is right of course, even though it drives you crazy).

Maybe we could do this.. collect the emails, filter them in a way, so that multiple emails asking the same thing won't be sent multiple times, condense some of the other emails, where it's needed, and then send them to her / the WPI.

Then answers could be posted here (if the WPI / Dr. Mikovits give their permission) and there could be some sort of Q & A, knowledge base established, so that people can go there for answers and don't have to ask the same things again and again.

 

[ukxmrv]

The UK WPI study group did just that. Set up a website with a weekly Q&A and collected questions for each week. People then read the answers on the website. I know of one other international group that does the same thing but without a website. Any questions relating to that group are collected and sent if they cannot be answered elsewhere.

I really hate to see Dr Mikovits deluged under emails. Most people I know who have been following this as it unfolds are acting responsibily and only sending emails when it is really important. We can't control all the newbies but at least we could pick up people when they get to somewhere like here and gently discourage them not to send un-necessary ones.

 

[CBS]

The world's least conspicuous spokesperson

Dr. Donnica Moore

Renowned Health Expert Dr. Donnica Moore, Spokesperson and Advocate for the Whittemore Peterson Institute.

http://www.wpinstitute.org/about/about_drmoore.html

Dr. Moore is a passionate advocate for womens health issues and medical research in general, but she is particularly committed to advocacy for chronic fatigue syndrome (CFS). This interest was originally motivated by the disproportionate occurrence of CFS/ME in women and too many of these women were treated dismissively or patronizingly by doctors unfamiliar with this condition. Ironically, both her husband and her 16 year old son Brian have since been diagnosed with CFS/ME. Brian has served as the national pediatric spokesperson for the Chronic Fatigue and Immune Deficiency Syndrome (CFIDS) Association and is currently a Youth Trustee for the New Jersey Chronic Fatigue Syndrome Association. Dr. Moore has served as a trustee of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA) and has written several articles about CFS/ME in women and in children. She has also covered CFS/ME in several television & other media interviews as well as in her comprehensive book, Womens Health for Life (DK 2009).

I appreciate that Dr. Moore's husband and son have CFS (Note the role her son played as spokesperson for the CAA). But were it not for the WPI web-page, I would never have guessed they have a spokesperson.

 

[citybug]

The UK WPI study group did just that. Set up a website with a weekly Q&A and collected questions for each week. People then read the answers on the website. I know of one other international group that does the same thing but without a website. Any questions relating to that group are collected and sent if they cannot be answered elsewhere.

I've been wanting to have a thread saving questions for Dr. Mikovits. They could look at it or we could periodically send a list. On Friday Dr. Singh (edited, had wrong dr) is talking on twiv, the retrovirology podcast and questions can be emailed (posted by CAA) if I got that right.

Can you give a link to read the UK study group q and a's?

 

[V99]

But were it not for the WPI web-page, I would never have guessed they have a spokesperson.

Perhaps it will be more obvious once the media really get interested, Unless the WPI get pushed out of the picture. (I don't mean the CFS XMRV connection)

 

[ukxmrv]

Here it is KDP (you may need to logon as a study member to read the pages though)

http://www.xmrvweb.co.uk/

 

[Andrew]

considering that xmrvweb is already doing this, maybe we should submit our questions there. That way we consolidate instead of duplicate. OTOH, I wonder how many questions they are sending a week. I hope it is not too many.

 

[citybug]

The xmrv uk site says it is for questions relating to the UK study. I think we need general questions from the readers here. It may not be answered often, but we'll have our most popular questions available.

 

[Forebearance]

Aw, thank you Stone. I've been waiting almost four months now for my test results.
Forebearance