#120~ Nevada Newsmakers Annette Whittemore Interview–Transcript

Following is the transcript of the October 26, 2011 Nevada Newsmakers interview with Annette Whittemore, for those of us that have difficulty with online video:

Sam Shad: There have been a lot of things swirling around and one of the reasons I wanted to have you on this program today is to clear up from what are rumor and innuendo to what are actual facts concerning the institute, and concerning the publication in Science Magazine of the study of a couple of years ago. Bring us up to date on exactly what’s going on. 

Annette: Well first of all Sam thank you so much for letting me come in and talk to you today because I know so many of the people out there that are suffering want to be reassured, and I think that that’s the most important thing today that we talk about from a very calm perspective of the work that is still going on at the institute. And you’re right, there have been, a lot of questions that have, that still remain unanswered about whether or not there is a retrovirus that’s associated with individuals who have this disease and many other diseases. And, I can just tell you that the work is still promising, that we are still headed down that direction very very methodically, and in an attempt to actually prove ourselves wrong. And so far we’ve been unable to do that when it comes to human tissue. But there’s several experiments that are left to be done, and so I can just say that we are still thinking along those lines, still looking very much at all pathogen possibilities, looking at the immune system deficits, and also characterizing the information. So, we’re very very much involved. There’s a study that will be starting November 1^st in which we will literally be testing one lab against the other, looking at different methods, and determining which methods are actually the most accurate when looking for pathogens such as a retrovirus. 

Sam: Now, when the article first came out in Science Magazine, the first study, since then, it wasn’t completely retracted. There was one person out of many that retracted a portion of their work. Could you explain that for us? 

Annette: That’s right. Dr. Silverman found in his laboratory that there was contamination of the samples that he had worked on, and therefore he removed his part, and I think he had one figure in this entire paper. However, there still is a lot of confusion about what we think we’re seeing in the actual patients. And what some of the doctors have described as XMRV, that was actually created in a laboratory. And so, at the end of the day, is there just one XMRV or are there several? And are we looking at a virus that’s completely different in our subset of patients versus the ones that were looked at in the tissues of prostate cancer. So far we’re saying “not completely different”… 

Sam: …and that was what was originally found.. 

Annette: Right, right. It was originally found in Dr. Silverman’s laboratory, and Dr. Silverman originally found it in prostate cancer. And the connection that Dr. Lombardi eventually they ended up looking at this together along with Dr. Mikovits and so it’s still an incredible puzzle. But we’re really excited about the fact that what has happened as a result of this has been so much more attention, so much more funding and a very very serious validation of this illness that just hadn’t occurred before the WPI came along. 

Sam: One of the things that I always like to refer to so the people who are not as familiar with this as we might be, that this is kind of like when they came up with, not a cure, but a way to control AIDS through the retrovirus. It wasn’t a one simple thing. It developed over many many years. And now, AIDS is not a death sentence. 

Annette: Absolutely, and it does take time. A process like this takes so much time to go from discovery to actual medicine within the doctors’ offices. But you know, that is what the WPI is all about. We are very much patient centered. We’re here to provide ultimate treatments that are going to be effective for patients, and we’re here to find the truth. So whatever it is, there..I have..I think we’re really trying to keep our egos out of it, and be able to say that t he most important thing, and to keep remembering it, is the patient, and getting effective treatments. So we need to understand exactly what’s causing the problems, and then we can figure out how to solve those problems. 

Sam: One of the problems is that in the field of medical research, there are tremendous egos. 

Annette: (laugh) yes. And it’s been very very difficult as a result. Sometimes the politics and the science…I think we talked about this before…can be extremely difficult. But in this case I really do believe, and I think the majority of people out there are very very sincere when they say that they’re concerned now about these patients. They’re concerned about getting these answers right, and we’re looking forward to working with them. 

Sam: Alright, let’s take a break. With Annette WHittemore when we come back. 

Sam: And back on Nevada Newsmakers we continue our conversation with Annette Whittemore. She is the founder and president of the Whittemore Peterson Institute. Your research director left who’d been on this program many times. What does this mean for WPI and who is the current research team? 

Annette: Well right now we are moving forward with the same research team that we’ve had all along, but I think a lot of people didn’t realize the depth of that team, and the number of people that are working there. So we’re still doing the exact same thing that we have been doing, in a very organized and collaborative fashion. We’ll miss Dr. Mikovits but Dr. Lombardi is stepping in and taking control, organizing and reprioritizing our studies. 

Sam: Now, you’ve been doing a lot of testing over the last couple of years for XMRV, so I mean, this is a real thing. It’s not that you’re testing for people and it’s not showing up. 

Annette: Well this is, absolutely. And you know, Harvey and I were always very very interested in continuing to ask that question every other month pretty much…is it real, is it infectious, has anybody changed their mind at the NCI, for instance. And I recently was up in Ottawa in a conference and asked two researchers up there, not ones that work with us directly. And they both said it’s real and it’s infectious. The question is, where is it in this population. Is it in this population of individuals, and more importantly, how do we develop the most accurate test that we can, so we can look at this particular virus. But I think again that we don’t want to limit ourselves to one particular virus strain, or one particular virus. We want to continue to keep looking at the question..is there an active retroviral infection in the patients that is coming from outside, rather than is there an actual endogenous or internal retrovirus that is becoming active. And you know this is exciting, it’s very very very complicated, and I don’t want to pretend at all to be a scientist. I get the, I’m so fortunate to be able to listen to all of this and be able to talk to you about it, but you know I’m a wife. 

Sam: You’ve become a sponge for this information. You’ve absorbed it and passed it on. But it’s interesting as time has developed now that you’re seeing that it may take more than one form. 

Annette: Absolutely. You know we see that, I like to tell some of the patients this, that we see the head … my understanding is that we see the head, we see the tail basically, if we were to see an animal…as a virus…but we don’t see the entire body. We’re not sure what’s going on, so the next step really is to get this material and get it deep sequenced so that we can fully characterize what it is that we’re seeing. 

Sam: One of the things, you know, in this economy obviously everybody’s taking a huge financial hit. But NV Energy, the power company in Nevada really stepped up to the plate with a huge donation. 

Annette: They absolutely did. They were phenomenal. Recently they donated a hundred thousand dollars to the cause. We’ve had Vivint and Chase Community Giving which are online community voting grant programs. I think we’ve raised about a hundred eighty five thousand dollars through that. And then just recently we had our fundraiser at the Atlantis. The Farahis who hosted that event were just phenomenal and they even donated back the proceeds from the event. 

Sam: That was here in Reno 

Annette: That was here in Reno, in September. I’ve got to say it was one of the best events we’ve ever had. There was so much love in that room. And even all the way down to the individual who came out from Nashville, Suzi Oravec, and gave her time, donated her time to provide music for all of us. It was an outstanding evening. 

Sam: Now, you started out as an ordinary mom. I shouldn’t say ordinary mom..a mom..
Annette:…Mom of 5 children 

Sam:…you were a spectacular mom. But your daughter Andrea contracted this. And when you were last on the program, you were saying that the treatments that are coming from the clinic are, were helping her. Is she still progressing in a good direction? 

Annette: She is. And you know we’re just really very very thankful that that’s occurred. And we’re trying very very hard to take a look at that, and Andrea thank goodness is willing to be a donor so that we can frequently check to see what are the differences between the times that she’s ill and the times that she’s well so that we can determine what is it exactly that’s going on, what are the treatments that are being most helpful, and why. We really don’t have all those answers yet. Those are things that we’re studying and I guess I’m just happy that she’s close by and she’s willing to donate her blood to that particular research. 

Sam: How are you being helped at this point by the National Institute of Health? Are they being helpful at this point? 


Annette: Well I think they are, because they’ve got a lot of researchers internally that are taking a look at this. And beneath all of the controversies that are going on in this particular virus, there’s some really good work. There’s some solid work that’s coming out. Not long ago there was a paper that said XMRV can infect neuronal cells for instance, or neurons, in the brain. And that was a key paper. I think there was a paper that also explained how easily it was transmitted, which would be, it’s very very unusual that a retrovirus could be transmitted potentially airborne. So there are some very interesting facts, and some good research is going on inside the NIH on this particular virus right now. 

Sam: Alright, so I always like to ask you to tell the folks out there who are watching, literally all over the world, what your advice is to them about where everything sits at this point in time. 

Annette: Well I think my best advice is to be able to remain calm, and to be reassured that the changes don’t mean that anyone’s going away, or that any way our commitment has been lessened. Or that the commitment of others has been lessened. In fact, it’s just the opposite. So there are more federal dollars today going into research in this particular disease. There are more individuals committed. An individual by the name of Glen Hutchins just committed ten million dollars to what he calls the Fatigue Initiative, and he’s brought new researchers into the field. Dr. Peterson has started a foundation and brought additional researchers into the field. So we’ve got some outstanding retrovirologists and virologists and immunologists that were never in this field before, that committed to helping us discover the answers. That is really the message… 

Sam: What’s your level of optimism over the next couple of years? 

Annette: Oh my goodness. I’ve got to say that we are making progress at a rate that is phenomenal. And ..on the one hand. On the other hand, we have to be patient. This is not an overnight process. I don’t expect it’ll take 20 years. I’m too impatient for that and I don’t think that’s appropriate. But it’s not going to happen tomorrow. So people need to sit back, take a deep breath, be reassured, and be hopeful. But, you know, let’s watch, let’s see what happens. Let’s be right about this. Let’s be good about this. 

Sam: That’s the most important thing, to be right about it. Always a pleasure. Thank you so much for being here.

***
Reprinted with gratitude and permission from Khaly:
http://cfsuntied.com/blog2/2011/10/27/nevada-newsmakers-annette-whittemore-interviewtranscript/

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#112~ "If this was HIV, it would be 1983"

For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost  it for everyone to read.. cuz this needs to be known.. 

I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created. 


The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???


And Now~ Here's Judy ♥ 
from the NIH State of Knowledge April 8th, 2011
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Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.

But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.

I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all. 
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Thank You Patricia Carter of the  http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
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If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while 

"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness"  ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.


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#74~ The Politics and Science of Blood~FDA Style

Informal Report from the FDA's Blood Safety Advisory Committee Meeting

"It’s All About the Prostate, Folks."

Reprinted with the permission of the author 

Heidi Dunlap Bauer.

reported ~ July 26, 2010

I’m sure there will be much more reporting regarding the FDA Blood Products Advisory Committee meeting from today, but since I did make the effort to attend, I thought I would try to report as best as I can from my experience. My plan was first to tape Dr. Judy Mikovits speaking. I was under the impression that she would be allowed to speak somehow at the last minute. I had planned on taking a camcorder, but decided against it and took a voice recorder instead. I didn’t even use that though because all slides were copied onto handouts to be picked up at the door. The room was huge and filled with scientists, press and very few patient advocates, or at least very few who used the public time to speak. Kim McCleary was there, but I recognized few familiar faces aside from Wanda Jones. Even in the fourth row back from front, I was half a room away from the committee. This was far different than the CFSAC meetings I’ve attended with their cozy, cramped storage rooms. I was fortunate enough to see Dr. Mikovits enter and forced myself over to greet her and introduce myself. She graciously allowed me to glue myself to her for support, meaning she allowed me to sit with her during the meeting. I found out quickly that there were no accommodations made last minute for her to speak. She was sent to be a presence in the audience, and I hoped, a reminder that the good guys are still vigilant about our government finally getting this right.


The chair, Blaine Hollinger, M.D., opened with a statement I had previously read in an email. He stressed that the XMRV portion was information only and no recommendations or decisions would be made during this meeting. This seemed reasonable given that it was being videoed by the FDA along with a transcript being released eventually. My general impression afterwards is that this was simply a show for the public, a nice, safe, production meant to dispel “public panic” and focus almost solely on Prostate Cancer when XMRV was mentioned. To me, it is still reprehensible that prostate cancer (PC) receives respectful nods of approval and NIH funding when they have at best a 23% positive XMRV rate, and they only have found that in a highly specific type of PC that affects young men with a particularly aggressive form of PC. Add to that not even one replication study that backs those figures up (plus a couple negative studies) and they are in a worse situation than the Science study, which had a 67% positive rate, 95% with improved assays, and has a positive replication study pending publication. Yet, it is all about the prostate.


First up was Dr. Indira Hewlett. She presented an overview of the upcoming speakers and topics - three positive studies, including the Science paper, Silverman’s work and the German study, which found XMRV in respiratory secretions. Then the several negative papers are mentioned. As scientific courtesy dictates, the possible reasons for discrepant findings were listed, including the study populations, geographic differences, and “other unknown factors”. I mentally inserted, power, money, and politics as the “unknown” factors.


Dr. Silverman spoke next and disclosed his affiliations with Abbott Laboratories as both his research support and patent licensing and consulting. I’m going to move on past this one since there was nothing new presented here. I have read about that paper much too often. I’m starting to think I’ve read too much in general, because over 50% of the topics and slides were familiar information to me.  

Next, was Dr. Peter Ganz of Health Canada. Overall, they are not convinced that XMRV is the cause of ME/CFS, but they have employed what he called “Regulatory Perspectives” meaning “Lack of consensus does not require adherence to the status quo” and “What are the potential risks to blood recipients?” He called for further studies to establish XMRV as the underlying cause of human diseases in infected individuals. Hear, hear! Get the assays right, fund the studies and get on with it already. Prove the causative aspect so we can move on to answering the dozens of other questions this discovery brings about. How about - How is it transmitted exactly? How does it reach the brain? Is one person more at risk than another? What determines severity? All I could think of is what a waste of time this all is when researchers could, and SHOULD, already be in their labs, well funded, to hammer out the details. And, give the majority of the money to the WPI while I’m making my wish list. If anyone can pull a miracle out of a shoestring budget, they can. They’ve done it before.


Dr. Michael Hendry from the CDC study was up next. We all know the paper. We all know the Publisher’s Clearing House manner of patient selection used. If my cat could speak and answer a phone in Georgia or Kansas, I’m sure he would have been chosen for the study, providing that he could also pull off being female. Sometimes I’m surprised it’s the mouse and not the cat that XMRV derives from. Cats seem to naturally have the CDC version of a fatiguing illness. I was happy to see Dr. Suzanne Vernon pull the CDC paper apart quite well with a critical blow toward the CDC assuring patients this was a study designed NOT to find XMRV. No one expected anything other than that, of course. At least, no one with both eyes open. Dr. Vernon’s emphatic statement also leads me to believe the tides are changing. Compared to the harsh, critical blows Dr. Vernon gave to the Science paper early on, none of which could find fault with the virology, only a harping on the need for more patient information, her attack of the CDC paper at least momentarily could lead one to believe she is aligning herself with the burgeoning group of believers that XMRV is strongly linked with ME/CFS and is likely causative.


The worst part of Dr. Hendry’s presentation for me was after it was over. We are used to the lying, the manipulation and the sheer audacity to give false information as though they are facts. But, when asked by Dr. Hollinger if the PCR gag was the same as the Lombardi study, he said “Yes.” A bold faced lie. It’s one thing to read about these moments, but it’s quite another to see the lying in person, not to mention the slight swagger of Dr. Hendry as he walked back to his seat. It was during the questioning that Dr. Mikovits rose up to answer a question that I unfortunately missed. Dr. Hendry’s one slide had written on it “Developed sensitive mouse sequence specific qPCR to detect contamination with mouse DNA. XMRV positive DNA samples tested for mouse contamination.” Dr. Mikovits stood up and made sure everyone knew that these were sequenced and isolated. All 20 samples sent by the WPI were confirmed positives. It was hard to judge by body language what the reaction was. I kept looking over at Coffin though, who is so easy to pick out with the beard, hoping he’d ask a question or get involved. This meeting seemed to be about keeping things stiff and calm though. I half expected the Queen of England to show up with that much composure to go around. But, the only one deserving of a royal title in my book is Dr. Mikovits and she wasn’t even invited to speak. I was happy she was there as a reminder to all who the queen bee really is in the XMRV game.


And, so we continue and see Dr. Hewlett appear again with information on the assays they are using. I really need to sit down and talk with someone soon about assay development to understand that all better. Right now, I simply trust that Dr. Mikovits and Dr. Frank Ruscetti know what they are doing better than anyone else in the world, because as of yet, good assays seem to be eluding most scientists. I kept thinking, Judy’s made this insanely easy for them. She says here, try this. It will work. They say, no. We’ll do it our way hoping we can trump you. So, basically, there is still a problem with assays. Period. Then why, please, would Dr. Hewlett want to examine HIV patients in Cameroon and Uganda with an assay that has yet to be proven? Why would the other study that searched for XMRV in over 560 HIV+ patients in Chicago use an ineffective assay as well? Not one HIV+ patient in either study had XMRV. I’m fine with that if that is true. An HIV patient doesn’t need another hit like XMRV. However, with 4% of the healthy population carrying XMRV, does it not seem likely that at least a few HIV patients would be able to contract it as well? I’m not a scientist though, but I’d like to make sure my tax money goes to the right place to find those answers out. In my dreams I think of filling out my next tax form and seeing a place that says, “Would you like to donate $3 to WPI?”

Next up was the Blood XMRV Scientific Research Working Group report by Graham Simmons. This group has just about all the names we are familiar with and then some: Harvey Alter, Jerry Holmberg, Frank Ruscetti, Roger Dodd (you remember him from the May transcripts referring to the “perception” of an XMRV emergency rather than a real emergency), Suzanne Vernon, Judy Mikovits, John Coffin, Shyh-Ching Lo, Bill Switzer, etc. Presently, the main thrust of this group seems to be to find agreement on an effective assay. Graham Simmons concluded that "the study was too small to conduct meaningful statistical comparisons" and "more work on analytical panel development will need to be performed." The main labs in this group are WPI, FDA (Lo), FDA (Hewlett), NCI and BSRI.

Last up and the most interesting to me was the man with the Scottish accent, Dr. Stuart Le Grice. He said their goal is to create a group of 6 assays (Viral, DNA, RNA, Western blot serological (antibodies), serological (antibodies) and immunihistochemistry) that they are completely satisfied with and then go head to head with other assays to compare. If I’m not mistaken, he talked about a need to find XMRV directly from the sample as opposed to growing it in a cell line. I might have to wait for the transcripts to make sure of that one, but that seems like a fairly important leap in assay development.

I was impressed by one of his first slides:

"X-SCA: Single Copy XMRV DNA or RNA Detection – HIV DRP

Current status:

72 blinded samples of donor plasma, spiked with known quantities of XMRV DNA or RNA were tested using the X-SCA assay

*XMRV detected with SINGLE COPY sensitivity

*XMRV detected in plasma and whole blood with 100% accuracy

*No false positives or negatives"

It’s good to hear someone finally say they can find XMRV with this sort of accuracy. I often feel scientists are playing hide and seek for XMRV with their hands over their eyes saying, “I can’t find you.” In regards to a viral assay, which I believe looks for viral load, they have reduced the time on this to 3 days, and announced that there is information coming down the pipeline that it is now 1-2 days. The name of this assay is Viral DERSE (der’-see). All I could say is, “Wow!” I pictured the future where patients go to the doctor to find out if the retroviral is working and the test they got two days ago, covered by insurance (I dream big), gives an accurate picture for the doctor to consider. I’m not sure if I’m right or wrong on being impressed, but I caught Dr. Mikovits nodding quite a lot, so I must not be too far off.


And, so ended my four hour stay in Gaithersburg. After two brief public comments, one by an HIV patient and another by a CFS patient who calmly took 30 seconds to ask that the Alter paper be released, we were let go for lunch. I had no interest in their talk on Babesia. I hope it went well. At least this time the agenda didn’t have it pitted against XMRV as though it has to be a choice. I’m unsure if I will return to another FDA Blood Advisory meeting, but I am happy I went this time. I appreciate the friends who wished me well and wanted to hear my report. Thank you for reading and your continued support through this journey we’re all on. We strengthen each other every day just by being available. I hope we all continue to spread that support to the WPI and specifically to Judy and Annette, women we have assumed a first name basis with because of our appreciation for their sacrifice and dedication to ending our suffering. They are truly women of truth and integrity, and they deserve so much better than what they have received at the hands of the media, science and our government. They will win though. It’s imminent. 
*******************************


I would like to add my personal Immense Gratitude to Heidi for attending and being able to come home and write up such a Fantastic detailed and realistic report for us all to comprehend. She is truly a Gem and I was SO Happy that she was able to sit next to Dr. Judy Mikovits. Thanks for helping keep the patients and public informed in a timely manner.  There simply is not enough ways  for us to show our Appreciation to you for taking upon this task and following it up with your wonderful report back to us. Bless you !!!

#66~ PR Results of Awareness WEEK-Worldwide so far.

OK, this article might seem a bit DRY, and granted I am in a not very pleasant mood
because the ONE organization that is "supposed to" BE "OUR VOICE" in the USA and HELP "THE PUBLIC HEAR" US... That's what Grassroots Campaigns DO... 
No one has Heard ONE Peep from them, not seen one PSA on any cable or
satellite radio station they sponsored, haven't heard one Spokesperson they 
have attracted to Represent us to speak for us TO 
THE PUBIC., NO handout brochures passed out to Dr's.

So using a British term... I'm bloody well ticked off...because the 
PR TEAM for the USA was ABSOLUTELY   "AWOL"... AND SINCE THERE IS ONLY
ONE National Group that claims that Title.. You can guess whom I mean.


So I have a funny feeling that the Grassroots Volcano is about to ERUPT......


Here is ALL I have been able to gleen with the help from MANY friends from around the WORLD to help me take note of ANY "Awareness WEEK PR articles"....
So here goes.... I have tried to divide it up- by Country or Continent 
when I wasn't sure...Hope it makes some sort of sense to you....


*****************************


PUBLISHED Results of Awareness Day/Week PR around the world.

Kansas,USA~ Well, the newspaper in my town had an article about a lady in town with LYME disease, but no mention of ME/CSF/FM.

Utah, USA~ Nothing that I know of in Utah. It gets frustrating...and I know my doctor and others have tried to get the media involved.

Nevada, USA~
Got signed proclamations from both the Nevada Governor, and the local Mayors in Reno, NV, and Sparks, NV, that May 12th is now recognized as ME/CFS/FM day!

Michigan, USA~
Sent out a Press Release to over 20 different places: TV, radio and print media....not a peep :(

California, USA~
I Sent out emails to many TV stations = nada

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Ireland, U.K.~ RTE...Irish TV station...
interviewed an M.E. sufferer.
It was pretty well done but not long enough.

Northern Ireland~ The Down Recorder, Downpatrick, Co. Down, N.Ireland are doing an article every week for the next three weeks...written by Mary Cardwell. I got it today and they have inserted an informative introduction to the article and stated that it will start next week.

*********************************************
England, U.K.~
Solicitor rides from Hampshire to Edinburgh for CFS Research Foundation
http://www.thisishampshire.net/news/8119155.Man_s_marathon_bike_ride_in_brother_s_memory/http://

VPO Press Release-
Statement on Behalf of Dr Sarah Myhill Concerning GMC Hearing of 29 April
http://www.virtualpressoffice.com/publicsiteContentFileAccess?fileContentId=289920&fromOtherPageToDisableHistory=Y&menuName=News&sId=&sInfo=

IlfordRecorder24
Hainault mum rebuilds life as she battles M.E.
www.ilfordrecorder.co.uk/content/redbridge/recorder/news/story.aspxbrand=RECOnline&category=newsIlford&tBrand=northlondon24&tCategory=newsilford&itemid=WeED14%20May%202010%2015:38:51:530

Gazette~
Mother and daughter from Thornbury speak about the effects of ME
http://www.gazetteseries.co.uk/news/8130415.Mother_and_daughter_speak_about_the_effects_of_ME/

Toronto Star~
A host of other chronic disorders often accompanies fibromyalgia
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808949--a-host-of-other-chronic-disorders-often-accompanies-fibromyalgia
The Daily Record
ME sufferers battle to raise profile of condition during National Awareness Week -
http://www.dailyrecord.co.uk/news/2010/05/10/me-sufferers-battle-to-raise-profile-of-condition-during-national-awareness-week-86908-22247881/
The Guardian
The Trouble with M.E.
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome

BBC Radio 2: Jeremy Vine Show
http://www.divshare.com/download/11342188-0d6 
Interviewed kay gilderdale, local radio in newcastle. Interviewed an ME sufferer and I did a tv news interview for central news. ( though still waiting for them to air it, ME association also involved in that interview ).
DailyMail~ RIP Sophia Mirza.
Two policeman broke down her door so she could be sectioned by a psychiatrist, a doctor and a social worker. She died aged 32, the first person in the UK to have ME recorded as a cause of death.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html

~ UK
GMTV~ http://www.gm.tv/lifestyle/health/48865-me-awareness-week.html


************************************************************
New Zealand, East Coast~ none here sorry and I'm in New Zealand, on the East Coast, in Hawkes Bay, Napier

New Zealand, Dunedin~ I spoke on radio pacific for NZ plus radio toreoa in Dunedin. Most support groups here in NZ are putting article in the newspapers. I have put one in the Dunedin area and know of most others doing the same. We are also doing displays in the hospital for next week plus have a display in the warehouse which we will be having people there all day.
***************************************************************
Netherlands~ Heard or saw nothing in the Netherlands :-((
BTW, I've send letters to the media as well - not a peep.
But......I'm sure somewhere this year it's going to be front page news!

****************************************************************
Australia~
http://www.metaversejournal.com/2010/05/10/mecfs-awareness-art-exhibition/

Australia~ I haven't heard a zip..had a letter from our local state society letting us know that had stuff that they could post out if we were planning a stall ....sadly it came half way throught the week .......a bit late .......

******************************************************************
Canada:

Toronto's awareness day event at the Ontario Legislature has made the news!
http://www.montrealgazette.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3019292/story.html

(same story published in Vancouver, B.C.)
http://www.vancouversun.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3023364/story.html

BC News
http://www.bclocalnews.com/okanagan_similkameen/vernonmorningstar/lifestyles/93470524.html

Morrisburg, Ontario
http://www.morrisburgleader.net/story/international-mecfs-and-fm-awareness-day-may-12

Peterborough
myKawartha.com
A love story rewarded
http://www.mykawartha.com/community/article/813563--a-love-story-rewarded


*************************************************************************
The ‘fibromyalgia wars’ rage on May 13, 2010

Quote:
While there’s finally agreement on what to call it, not everyone in the 21st century agrees that it exists as a “real” illness, focusing instead on the psychosocial aspect of it. Naysayers, writing in the Journal of Rheumatology, have called FM “the medicalization of misery” and declared that “pain is real, fibromyalgia isn’t.”

University of North Carolina professor and rheumatologist Nortin Handler has called FM “a social construction” and suggests that it’s a case of how “a person with widespread chronic pain … chooses to be a patient with widespread chronic pain.”
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808945--the-fibromyalgia-wars-rage-on
 
****** May 14, 2010**********
Jamie Fox Show- Satellite Radio about Fibro !!! 

Lynne and Tony on "The Jamie Foxx Show"

Big thanks to Jamie Foxx for talking about fibromyalgia on yesterday’s “The Jamie Foxx Show” on Sirius Satellite Radio, which has over 25 million listeners. The Academy award winning actor, singer and comedian featured special guests Lynne Matallana, President of the National Fibromyalgia Association and Tony Terry, R&B recording artist and new NFA spokesperson. 

Lynne and Tony talked about the importance of raising awareness of fibromyalgia, and the free benefit concert with Tony Terry at today’s Fibromyalgia Awareness Day at Cal State Fullerton. 

Also on the show was Larondra Terry, Tony’s wife, who has fibromyalgia. The Terrys are featured on the cover of the new issue of Fibromyalgia AWARE magazine.
By:National Fibromyalgia Association

Here is a link to Jamie Fox's show from last night.
They start talking about Fibromyalgia at 7:10 into the audio:
 
http://www.youtube.com/watch?v=3XFbG-hG2ok
it continues at this video
http://www.youtube.com/watch?v=2CWX4xQtuRs

**********************************************************
ME/CFS/FM Awareness Blogs + Newsletters~

UK~
http://southdownsliving.blogspot.com/2010/05/me-awareness-week-at-burgess-hill.html

USA~
EmpoweHER
NO/ONOO Cycle May be Cause of CFS, MCS and FM
http://www.empowher.com/news/herarticle/2010/04/26/noonoo-cycle-may-be-cause-cfs-mcs-and-fm

Planet Thrive~Special Guest~Lyme
http://planetthrive.com/2010/05/a-poem-to-kick-off-lyme-disease-awareness-month/
*********************************************************
An Overview of the Latest bio-medical research being done
from the U.K. and IiME
http://www.investinme.org/ResearchCurrentProjects.htm#WPI

This is what we are fighting against. Sectioned by two policeman, a psychiatrist, a doctor and a social worker (all of whom were cleared of wrongdoing), Sophia died aged just 32.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html#ixzz0o2QNKtoW

The NCI ~CFS/XMRV Connection revealed.
http://ccr.cancer.gov/staff/staff.asp?profileid=5518

June 18th, 2010, Tulane University, Special Conference on XMRV: 
Lessons from studying XMRV and
Infection in Human Blood Products
http://tulane.edu/cid/special.cfm
********************************************

********************************************
ALL of the May 2010 CFSAC- hhs.gov USA meeting are on youtube NOW for your EASY viewing... 
THANKS HEAPS to the TEAM that made this possible!!


http://www.youtube.com/user/CFSACvideos#p/c/131A8EEA7ECD72CD


As Daffy Duck use to say ~ "That's ALL Folks"

#45~ Happy Holidays and More CDC bad news

*Report finds "Poor Ethics" 

policing at CDC*

By MIKE STOBBE (AP) - 18 hours ago
(see link below)


Many of us have "ALREADY" known about 
this with regards to ME/CFS,  "and" I am 
Glad that maybe with our CFSAC meetings
a little more light has been shed on the 
shananigans that have been running
rampant at the CDC for WAY TOO LONG
now... I will ONLY be giving you tidbits

of this article to wet your whistle as a 

Promo teaser so as NOT to abuse any
© infringements, AND because I want

you to read the article, OK?

I feel after you read this article I HOPE

it will motivate you to WRITE those letters

we have been talking so long about to 

President Obama with CC: to ....

Sec. Sebilius of HHS, the Surgeon General,

Your Federal Senate & House Reps, Your

State Governor, Rep. Rosa DeLauro, D-Conn.

Please also remember the "shadie" 

History of the CDC that has ALREADY 

been documented AND "investigated by 

Congressional hearings and the GAO" 

and reported in the Osler's Web Blog....

In case you forgot or Never Read the 

corrupt history please read THIS First

then the New article from yesterday, OK?

 and now on to some article tidbits:

ATLANTA

"The government's top public health 

frequently failed to police its outside 

experts for conflicts of interest, 

according to a new government report 
released Friday."

"The report concluded that the CDC 

failed follow-up with some of the

experts who disclosed potential 

conflicts: 

85 because of jobs or grants, 

28 with stock ownership and 

13 who received consulting fees."

Ok, that's all I can tempt you with...
but please read the other History FIRST
and then read this "in context" so you
can see that this is NOT a new issue
and WHY the entire CDC needs a 
HUGE OverHaul... 

So that the Interests of ALL USA citizens 

and the rest of the world that pays 

attention to what the USA does... 

Will be based on  REAL Honest, 

non-corrupted opinions based

ONLY in Science.. not kick-backs.

That is a BIG part of WHY we have ALL
respected SO MUCH the recent research
done by Whittemore Peterson Institute

in conjunction with the Cleveland Clinic

and the National Cancer Institute....

At least these were 3 reputable facilities

working "together" and had the SAME

Results... and thus have MORE Validlity
and has made such a HUGE Splash in the
News.... cuz they are MORE trustworthy
than an agency already guilty of corrupt
actions NOT based in the Best Interest
of the citizens they are suppose to 
be working for and Representing...


In addition, the WPI has been given 
research grants and lab space to work 
for the last 2 years and will be building
a research facility on the grounds of the
University of Nevada, Reno...


~ recent CDC article ~

*Source Link*

****************
I have been working on trying to 
create my own Holiday Miracle but 
want to give it TIME and don't want
to jinx anything... so I will report to 
you about this in a Future post and 
until Then...


May you all be having a Holiday
Filled with LOVE and Merriment
and a time for you to Feel the Joy
of those that LOVE you.... and if even

just for a few days... forget as much

as possible about the PIA that our

illnesses cause us... and Feel Blessed

by the Good Things we DO have 

in our lives.. Just as in the timely
movie of the season.....
"It's a Wonderful Life."

No Matter HOW bad we think we have it

most of us do NOT realize just how much 

we touch each other's lives also...

and bring Joy and Hope to them..

Share your "one candle of Light" with 
the World this Season and together we
can Shed some Light on the World and 
Help bring Joy to many that need even 
MORE than we already HAVE....


One of my learned talents is photography
and my local ME/CFS Group had our 
Holiday party this last weekend...
I have run the online forum for 2 years
but have been too sick to EVER even
attend even ONE meeting....until NOW.
I went and offered to make portraits
of anyone that wanted one....
Many did want them and one lady

even admitted that she had no family

and had NEVER had a portrait made....

THAT was why I did it... for HER....

If we can make ONE person feel Loved
and Worthy and Bring them JOY this 
season...
THAT is the Reason for the Season..

Be the LOVE you want to SEE..

Not EVERY Present is bought or wrapped.

One's from the heart are Priceless and 

many times Worth a LOT More....

YOU are NOT your illness....

Your Heart & Spirit speak 

to who you ARE inside...

Let your Love Flow and no matter

what your body says... 

Please "Listen"/Read these words and 

let them sink in and OWN them

and Radiate them... as this Really 

IS.... the Time of Our Lives...


How many Remember Mattie Stepanek
and HOW MUCH he accomplished
in his "far too few" years on this earth?
But the Love & Joy he brought to 
everyone either in Person or those
who read his poems and books
called his "Heartongs" ??

How is your Love waiting to be 

expressed to the world?

We ALL have a way to let it out...

Find your Special Gift and this 

year "Give it Wings" and 

as you share YOU will feel an 

Inner Glow of LOVE that will

let you ride the wave of love

even further...

May you be blessed this Holiday Season.

#27~ XMRV Interim Guidelines from the NCI

Interim XMRV Guidelines from 
National Cancer Institute


Following the Oct. 8 publication by
Lombardi et al in Science linking CFS 
and xenotropic murine retrovirus (XMRV),
the CFIDS Association of America 
requested guidance from the National
Cancer Institute about XMRV for persons
diagnosed with CFS, their loved ones
and the general public. 

The following are interim guidelines
excerpted from a letter received from 
NCI director 
Dr. John E. Niederhuber.


Interim XMRV Guidelines from 
National Cancer Institute


We at the National Cancer Institute
(NCI) have great interest in these initial 
research findings. At present, we agree 
that a critical issue to be addressed is 
whether the exciting recent results 
obtained using samples from the Nevada
cohort can be reproduced in additional
cohorts of CFS-afflicted individuals.

The NCI is striving to develop tools so 
that the general prevalence of XMRV in 
the population can be ascertained, and
the association of  XMRV with disease
can be examined.


In the meantime, it is very important to 
reiterate what we do not know at this 
point, specifically:


1. We do not know whether XMRV is a 
causative agent for CFS, prostate cancer, 
or any other disease. Even if a causal 
association can be established, it may be
only one of many causes, and there may 
be other factors, genetic or 
environmental, that determine the 
outcome of infection. At the moment, 
there is no evidence of CFS
transmission between family members, 
even though XMRV appears to be an 
infectious agent. Thus, it is unclear 
whether XMRV alone underlies CFS.


2. We do not know how XMRV is 
transmitted from individual to individual. 
Recent suggestions of sexual or salivary 
transmission are not based on direct 
evidence, and conclusions regarding 
transmission are not credible at this 
point. Given the frequent isolation of 
virus from white blood cells, 
blood-borne transmission is a real 
possibility, and, while we are not in a 
position to establish firm guidelines, 
prudence would dictate that potentially
infected individuals refrain from
blood donation at this time.


3. We do not know how many apparently
healthy individuals are infected, and 
what the distribution of infection is 
within the U.S. and
in the worldwide population. 

The National Cancer Institute is involved in
coordinating a global effort to study 
these issues.


It is very important to keep in mind that
there is no evidence for a new increasing
or  spreading XMRV infection. 

Further, no credible evidence exists for 
direct transmission of either CFS 
or prostate cancer.


John E. Niederhuber, M.D.
Director, National Cancer Institute
National Institutes of Health
U.S. Department of Health and 
Human Services
October 23, 2009




Note: According to Dr. Wanda Jones 
of DHHS, these issues will be discussed 
by representatives from DHHS, NIH and 
other federal health agencies at the 
upcoming  federal CFS Advisory 
Committee meeting
on Oct. 29-30, in Wash DC.


THAT's the meeting BELOW  I have been
asking your to turn your computers ON
to watch or at least RUN and then watch
the arcived reply later..but we need the 
"head count" by the NIH.....Thx

#19~ Recent "Spin Dr" papers published

Thought you might like to see some of 
the papers that have recently been 
published "AFTER" the NCI, CC, WPI 
paper were published about XMVR... 
So these seem to be papers published 
to counter the "new" NEWS Headlines...
and IMHO these papers are..well... 
you know.. what's the phrase??  FOS?


Here's one that deals with the whether 
the patients chosen had to be determined 
IF they had some other disease "actually"
besides ME/CFS ..and of course, done 
on "rural" folks, not those of us that are
highly education, type A-s that were 
leading Productive BUSY lives and NOT 
depressed and NOT are NOW, even with 
this sucky illness....

"NEED" I "bother" to state that Reeves 
is  part of these?????? nuff said....

http://www.biomedcentral.com/1741-7015/7/57

The 2nd one even goes MORE into the 
issue of whether there are Depressed 
Issues that need to be considered when 
dealing with CFS. IMHO... it is another 
re-directed  issue of "DENIAL" that needs 
to be addressed by these folks that 
"hand-pick" the patients that choose to 
interview, cuz maybe the ones that 
"KNOW the difference" & I, personally,
ReFUSE to deal with anything that 
includes Reeves in the title... 
always will... I don't give Private
Info to Spin Dr's that are in Denial 
and have already pro-conceived 
notions instead of remaining OPEN to 
the looking for NEW/REAL answers and 
"actively" looking for the TRUTH that 
contradictes the answers they 
Denied 25 years go..at Incline Village !



CDC do U need 2cents to "Get a Clue" ??

http://www.biomedcentral.com/1741-7015/7/58

NOT sure "IF" Enjoy is the correct 
word. However, please read these and 
let me know if I am way off base and
feel free to share your
comments, OK?


...and have a Great weekend where ever 
you are, and KNOW that YOU are NOT 
your illness and that you ARE "worth" 
MORE than the sum of your parts...
There IS a HUGE Group of us out here
that Support you... and we are NOT
Depressed, we are Angry at the Lack of 
Intelligent Research done by the CDC
over the last 25 years..and hurt by the 
denial and "choosing to mislabel" the 
28 million of us that have worked HARD
to stay SANE in the face of 
Federal Ignorance, by the Agency that
is charged with looking out for 
"OUR BEST INTEREST."

Can I Please request that those that 
have "not yet" signed the petition
for the CDC to "remove" the OLD
definition of CFS, please sign this
petition.....ASAP before the CFSAC
meeting Oct 29th !!! Please circulate
as much as you can, OK? *hugs*


CDC- "change the definition"



*cheers*