Blue Ribbon Campaign for ME/CFS

Call for Candian Government to hold Rituximab Clinical Trials for ME/CFS patients

2011-12-03T23:20:00.001-05:00

Sent to:

Health Minister Hon. Leona Aglukaaq : leona.aglukkaq@parl.gc.ca,

NDP Health Critic MP Libby Davies : libby.davies@parl.gc.ca

Liberal Health Critic MP Hedy Fry: hedy.fry@parl.gc.ca

Interim Liberal Leader MP Bob Rae: RaeB@parl.gc.ca

MP Mauril Belanger (Ottawa-Vanier) : BelanM@parl.gc.ca

Dear Minister of Health, and Members of Parliament,

I'm writing to you all today to ask you to hold Clinical trials for a cancer drug (Rituximab) that has been found to alleviate the symptoms of ME/CFS patients.

In a recent study, 67% of ME/CFS patients taking the cancer drug Rituximab had the symptoms of ME/CFS alleviated and in two cases go into complete remission. You can read the study here: "Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study" (www.plosone.org/article/info:doi/10.1371/journal.pone.0026358).

This is a link to an article in New Scientist about the discovery. http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html

This blinded study was only done with a small number of patients, and larger studies are needed to discover its effectiveness on ME/CFS patients. ME/CFS patients are housebound, bedridden, some unable to talk, read, or write. A moment cannot be wasted to change the lives of these patients.

ME/CFS Facts:

-There are more than 400, 000 ME/CFS patients in Canada.

- ME refers to Myalgic Encephalomyelitis and CFS refers to Chronic Fatigue Syndrome. It is widely known as ME/CFS.

-The World Health Organization classifies ME/CFS as a neurological illness at G93.3

- The cause of the disease is unknown.

- Patients lives are drastically changed by this disease as they lose jobs, homes, spouses, and family support due to the stigma of this illness.

- Patients are often too sick to care for themselves, but there is no standard treatment, no drug, and little to no economic or social support for patients with this illness.

- Patients are a great loss to the economy in lost productivity and cost of care.

- A Drug that actually treats the disease of ME/CFS is needed to treat this devastating a debilitating disease.

The company in Canada responsible for Rituximab is Hoffmann-La Roche.

I would like to call on this government and its opposition to support Clinical Trials for ME/CFS patients in Canada with Rituximab to move this important research forward in hopes that in time there could be a drug to treat ME/CFS patients.

Sincerely,

Andrea Martell

Action Now- UK

2010-10-29T19:10:00.000-04:00

PRESS RELEASE

YOUR TIME IS NOW

For over 25 years, all evidence of viral infections and immune abnormalities in M.E patients has been suppressed. Ignored. Buried.

Instead, the Government shut the files away in a secret Medical Research Council vault, locked for over 70 years, and listened to a group of unconventional psychiatrists, authorizing them to control policy for patients.

NOW THERE IS XMRV

In 1991 a researcher at the University of Pennsylvania discovered a brand new retrovirus in the blood of M.E patients. This information was deliberately buried for 18 YEARS until in 2009 the retrovirus XMRV was uncovered by the Whittemore Peterson Institute in 67% of M.E/CFS patients.

Further evidence of Murine Leukemia Viruses in 86.5% of M.E/CFS patients was confirmed by the US agencies Food and Drug Administration and National Institutes of Health in August 2010.

The Department of Health has BANNED the donation of blood in M.E patients from 1st November –stating it “as precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood" and that “there are no plans to screen already stored blood (Anne Milton Minister for Public Health, October 2010). THEY WILL NOT ADMIT IT IS BECAUSE OF AN INFECTIOUS RETROVIRUS.

WHY?

The current treatment guidelines for M.E were developed by a steering group dominated by psychiatrists, who state of M.E patients:

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service”.

Most M.E treatment centres are funded by mental health authorities within primary care trusts and placed within mental health units of hospitals and headed up by psychiatrists.

We are not mentally ill. We are sick.

Not only is XMRV prevalent in our blood, researchers have also found immune system abnormalities and EIGHT infectious subtypes of M.E. Antiviral trials have been a success in America yet these drugs are banned under the NICE Guidelines in the UK.

YOUR TIME IS NOW

The US NIH has recruited top pathogen hunter Dr Ian Lipkin to carry out further XMRV research.

The UK authorities state “no public health action is required at this time.”

It seems the UK Government is quite happy for this cancer-causing retrovirus to be infecting the blood supply; already it is estimated that between 3% and 7% of the healthy blood supply is infected and cancer has increased by 4% annually since 2008.

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M.E/CFS patient community, sufferers, family members and friends - it’s time to join together once again and demand policy change in the UK!!

The “UK POLICY CHANGE: NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy:

1. Address your email
2. Inform the campaign: Bcc: ukpolicychange@gmail.com
3. Message: copy and paste our message
4. Start over: repeat these actions once each day.

Sample message: (adjust as necessary)

Dear …...,

"Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW, patients and their families are waiting."

Jane Smith, Newcastle
Housebound and bed-bound since 1999

Send to:

1) Andrew Lansley, Secretary of State for Health
2) Sally Davies, Chief Medical Officer at the Department of Health
3) John Savill, Chief Executive of the MRC

Contact info:

1) Rt Hon. Andrew Lansley, Secretary of State for Health
Email: lansleya@parliament.uk, DHMail@dh.gsi.gov.uk
Bcc: ukpolicychange@gmail.com
Telephone: 020 7210 4850 Fax: 020 7210 5952

2) Dame Sally Davies, Chief Medical Officer, Department of Health
Email: CMOweb@dh.gsi.gov.uk, sally.davies@dh.gsi.gov.uk
Bcc: ukpolicychange@gmail.com

3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
Bcc: ukpolicychange@gmail.com
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369

NB. Please use Bcc (instead of Cc) when copying us in and create your own subject titles. These actions should reduce the number of emails stopped by those pesky spam filters.

Many thanks,

ACTION NOW

UK: Strategy to get through information blockade on viral link to ME/CFS

2010-08-25T20:01:00.000-04:00

There has been a lot of concern about how little news is trickling out of the U.K. concerning the new viral link to ME/CFS. The reason for this lack of news is better known to those who live there. It is obvious from the lack of coverage that journalists either can't or won't publish the news, leaving the public in the UK ignorant of this important news. This is advice which you can take or leave. It's only my intention to help.

ACT

Contact Andrea Pring at XMRV Press Releases to take part in this effort http://www.facebook.com/#!/group.php?gid=112160662164471&ref=ts

1.Join groups where healthy people from the UK public gather on Facebook. Groups about politics and sports.

2. Choose the best of the U.S. news coverage of the viral link. Lift the best quotes from the articles to make your point.

3. Work as a team to post these different articles and quotes hourly.

4. You want to reach the people who tweet a lot, who facebook a lot. The electronic equivalent of the coffee house. Except people are now sitting in the coffee houses tweeting and facebooking. :)

5. Get Joe and Jane Public to start talking about the articles, and the news. Get them asking questions, and you have bypassed whatever procedures are in place to keep this out of the news.

6. If you cannot reach the people in power, take it to the people.

7. The people are on facebook and twitter who will in turn talk to their neighbors and people in pubs et cetera.

8. Go where the healthy people are.

9. If you would send an article out to your ME/CFS friends, send that article out on a political, news, sporty fan/group page on Facebook.

Groups to Join and Begin this Process

http://www.facebook.com/democracyuk?ref=search#!/democracyuk?v=wall&ref=search Democracy UK (200,000 members)
http://www.facebook.com/topic.php?topic=15103&uid=148007467671%EF%BB%BF ITV News
http://www.facebook.com/pages/Swimming/21117208001 Swimming (600,000 members)
http://www.facebook.com/thenational?ref=search&v=wall#!/pages/Hiking/131532787045 Hiking

That's how you start a conversation.

Good luck!

Andrea Martell

News Digest: FDA/NIH find MLV's in blood of Chronic Fatigue Syndrome Patients.

2010-08-23T16:29:00.008-04:00

I am not well enough to write the prose and poetry that such a day deserves. We are still at the beginning of things. We do not have causation but we now have a confirmed association between CFS and murine leukemia viruses. Here is the news of the day. It will be continually updated to reflect publications on this discovery for August 23rd.

Follow on Google

New mouse virus found in chronic fatigue patients

http://in.reuters.com/article/idINTRE67M55S20100823

Mouse virus link to chronic fatigue is studied

http://hosted.ap.org/dynamic/stories/U/US_MED_CHRONIC_FATIGUE?SITE=CAGRA&SECTION=HOME&TEMPLATE=DEFAULT

Scientists Find Traces Of Virus In Chronic Fatigue Patients

http://www.npr.org/blogs/health/2010/08/23/129383111/scientists-find-traces-of-virus-in-chronic-fatigue-patients

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

http://www.pnas.org/content/early/2010/08/16/1006901107

Copy of the Full Paper

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf

Statement of Editor-in-Chief of PNAS on publication of controversial paper

http://www.pnas.org/content/early/2010/08/16/1012027107.full.pdf+html

Second Paper Supports Viral Link to Chronic Fatigue Syndrome

http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

Statment from the WPI on the Finding

http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf

Study: Presence of murine leukemia virus related gene sequences found in CFS patients

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm

Chronic Fatigue Linked to Virus Class

http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1

Study Finds Retroviruses in Chronic Fatigue Sufferers

http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj

Q&;A: Why I delayed XMRV paper

http://www.the-scientist.com/blog/display/57628/

New evidence that virus may cause chronic fatigue

http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html

THE FDA/NIH/HARVARD “XMRV” STUDY: THE SAME THING,
ONLY DIFFERENT

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients

http://www.prnewswire.com/news-releases/study-presence-of-murine-leukemia-virus-related-gene-sequences-found-in-cfs-patients-101316939.html

There is much work to be done before there is a FDA approved test, and clinical trials. Yet, with this vindication of the Science of the WPI, the great work can begin to discover if these MLV's are indeed the cause of our disease, and with that real treatments to lessen our suffering and return some of what we've lost.

Our way in to the hearts and minds of the public is through the safety of the blood supply!

Andrea Martell

Founder

http://BlueRibbonCampaignforMe.org

Why we need to think of public concern first, and our concerns second.

2010-08-09T18:01:00.000-04:00

We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.

Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.

If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us.

What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?

We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.

Here are some of those issues the public is going to care about:

1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.

Now these things don't say anything about patient care, problems with the CDC website, problems with our name and diagnostic criteria. Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.

In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society. We can't do that while we're telling the public only what concerns us.

To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.

How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family? Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?

Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before. The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply. You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after. At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.

Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do? Hopefully, you are saying "yes, yes." and nodding as you read this.

Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.

Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?

We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters. How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?

To get the public to care about us, we have to talk about their concerns as it relates to us first.

Those concerns are XMRV and the blood supply.

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

2010-07-27T19:19:00.001-04:00

Written and shared with permission of Heidi Dunlap Bauer

It’s All About the Prostate, Folks.

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.

Letters to Erin Brockovich- Letter from Michele Krisko

2010-07-26T03:00:00.001-04:00

Contact Erin Brockovich here and send her your letters concerning CFS and the CDC cover up

The following letter was written by patient Michele Krisko. She would like others to join her in writing Erin for help.

Hello Erin,

I am a person who has suffered from Chronic Fatigue Syndrome for almost 18yrs. During this time I have lost my health, my two small companies I began and which supported me and my now grown two sons. I became sicker and sicker until I could barley get up. I am on disabiltiy now. I have $6,000 left of my entire life's work at the age of 53!

I have been housebound for 5 years and bedbound for most of the last 2. Even the ability to talk has been taken from me as my throat turns to fire and swells followed by an exhaustion that of someone who just ran a few marathons in a row.

My days consist of laying in bed with a laptop over me on a table that sits over my abdomen. If it were not for the internet I would be totally isolated. I cannot have people visit me as it takes too much energy. I cannot shower but once a week and that is because I must. I can do nothing but lay flat with eyes closed for the entire day after that shower. What an existance. This is not how my life should be.

I am writing not to complain about my lot in life but because it could have been prevented long ago had the Center for Disease Control not played politics with our lives. PLEASE GO TO www.oslersweb.com and see for yourself the history of corruption regarding this disease and the CDC.

Why should you care? Because Chronic Fatigue Syndrome was linked to a new human retrovirus XMRV in Science Journal in October of 2009. Soon a new study that replicated the XMRV link to CFS will be published in another scientific journal that was conducted by the NIH & FDA. The findings were leaked and said to be stronger than even the previous study.

However the CDC which has more than 20 yrs of covering up this illness and stealing appropriated funds from the government for CFS research recently published a study showing no link between CFS and XMRV. They purposely did not do an actual replication study so they would not find the virus and then were able to publish their findings along with two European non replication studies who did also. All of the negative studies were done by those who have been responsible for the suffering of millions of people for over two decades. Again for facts I refer you to www.oslersweb.com and the book Osler's Web by Hillary Johnson.

The estimates are 10 million people infected with XMRV. That is ten times more than the previous retro-virus HIV which we know causes AIDS.

Tomorrow July 26th the FDA Blood Advisory Committee is meeting in Bethesda Maryland to discuss the XMRV Retro-virus within the US blood supply. Estimates are up to 7% of the blood supply could be infected already and yet no one is talking about it. No one is warning people of this retro-virus that once inside your body can NEVER be gotten rid of according to today's scientific knoweldge. Just like AIDS currently can only be controlled with anti-retrovirals. This is serious stuff!

On September 7th the National Institute of Health will be holding a workshop on XMRV with top virologist and doctors from the world speaking there. We need some eyes watching for us. We are too sick to do anything much but type letters and we have, to one official after another all around the globe. Even that has put many of us into a deeper state of relapse. Imagine a relapse of deeper pain, exhaustion, cognitive issues, central nervous system dysfunction, etc gotten just from typing some letters like this one and from a reclined position mind you! Imagine all our families pain and loss. So much loss.

We need someone who is not afraid to ask the tough questions, expose the truth and get us help.
We are not looking for a payout we are looking for the truth and a treatment. Though I would be happy to be part of any lawsuit filed against the CDC if that is even possible in this country. In the UK in a short time I saw they gathered almost 9000 signatures to start a lawsuit for their governments coverup of CFS. This has been a worldwide problem this coverup but as The United States goes so goes the world. The CDC started this coverup and has kept it going to the detriment of all of us still suffering and to those who have died.

There are many diseases out there that have been maligned and ignored. But has there been one since the AIDS epidemic that has the capability of infecting 10 million people with a retro-virus? No! Everyone could be in danger. We know so little about how it is spread except the studies that show blood transmission, organ donor transmission. This XMRV retro-virus could be involved in many disease that no current cause is known such as Autism, A Typical MS, Lymphomas, Neuroimmune diseases etc. It has been connected to aggressive cancers. Again I will say THIS IS SERIOUS.

You have my e-mail. And you have my plea. My Husband, Sons and Friends all miss me. What I would give to be able to make one Sunday family dinner or to have a long visit with just them. I cannot. I live in a small bedroom mostly in the dark silence that has become my prison due to severe CFS. There are so many of us living this existance and we connect on social network sites such as Facebook. For us it is a validation of the pattern and severity of the disease to get online and find hundreds of people who are in the same shape. We were told via the CDC that we did not have a true disease but it was an emotional problem. But we knew better. And now that we hold hands across the virtual world of the internet we really know the truth and the truth is we are sicker than words can describe.

Please grab hold of our hands. Please help us get heard. Please help us attain some form of justice!

Thank you for your ear and your time

Michele Krisko -Just one of the CDC's victims

Campaign to have Dr. Mikovits invited to speak at XMRV conference

2010-07-22T23:47:00.003-04:00

http://www.facebook.com/pages/XMRV-Global-Action/216740433250?ref=ts&v=wall#!/note.php?note_id=421411181796

FROM XMRV GLOBAL ACTION: The 1st International Workshop on XMRV , co-sponsored by the NIH and organized by Virology Education, will be held on September 7, 2010 at the National Institutes of Health in Bethesda, Maryland, USA. The objective of this scientific workshop is to assemble an international group of scientists, physicians and epidemiologists to present and discuss the latest XMRV studies, including topics such as virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.

While we at XMRV Global Action are very excited about the workshop, we believe the list of invited speakers is incomplete and it is imperative that Dr. Judy Mikovits of the Whittemore Peterson Institute be among the invited speakers. We feel that it is incomprehensible to omit the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with ME/CFS.

The list of invited speakers as of today, July 22, includes:

• Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors
• Dr. Sam Chow, UCLA, Los Angeles, USA –Viral Integration
• Dr. John Coffin, Tufts University, Boston, USA –Basic Virology
• (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA –Prostate Cancer
• Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA –Animal Models
• Dr. Ila Singh, University of Utah, Salt Lake City, USA –Pathogenesis
• Dr. William Switzer, CDC, Atlanta, USA –Assay Development
• Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA –Chronic Fatigue Syndrome
• Dr. Ellen Sparger, University of California, Davis, USA –Vaccine Development
( http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0 )

We are urging all our members to send an email to the Science Committee contact, Wilco Keulen wilco.keulen@vironet.com from Virology Education, and Dr. Francis S. Collins francis.collins@nih.gov, Director of the NIH, to request that an invitation be extended to Dr. Judy Mikovits as a featured speaker. We also encourage you to send this message on to your friends and family. It is up to our community to ensure that ME/CFS and XMRV continue to be an important part of the conversation.

Below you will find a sample letter that you are welcome to use.

Thank You!

(sample letter)
To all involved in the 1st International Workshop on XMRV,

Congratulations on mounting the 1st International Workshop on XMRV. Bringing researchers and medical professionals together in this way is a critical step in understanding XMRV and its impact on public health and in moving the state of the science forward.

When this workshop was first announced I noticed Dr. Judy Mikovits was included as part of the workshop’s Scientific Committee. However, I was very surprised to see that she was not one of the speakers, let alone not the keynote speaker.

It was the October 2009 publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome that reignited and expanded global interest in XMRV as well as the role it might play in disease after its initial discovery in some prostate cancers by Silverman and Klein et al in 2007.

This paper, linking XMRV to ME/CFS, was authored by scientists from the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic. The National Cancer Institute is represented by Dr. Frank Ruscetti and the Cleveland Clinic is represented by Dr. Robert Silverman. However, Dr. Judy Mikovits from the Whittemore Peterson Institute is nowhere on the program. The omission of the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with CFS is incomprehensible.

Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Dr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.

The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV” and Assay Development.

I do not believe the stated objective of the 1st International Workshop on XMRV “to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies” can be accomplished without including Dr. Judy Mikovits of the Whittemore Peterson Institute among its scheduled speakers.

I will be following this conference schedule with great interest as it develops. I request, and strongly urge, that Dr. Judy Mikovits be invited to be an important part of this conference and its presentations.

Sincerely,

It's time for ME/CFS to have its own PR Machine

2010-07-15T03:56:00.002-04:00

I think we should be doing more. We should be suspicious of the power of the CDC PR machine.

I think a fund should be started to take out a full page ad in the Washington Post with a letter to the American Public from ME/CFS patients telling them that their government is supressing information which confirms a link from XMRV to ME/CFS. I think the letter should be written concisely without emotion. Several paragraphs, just enough to explain what is going on. Every advocacy organization who wants to be a part should sign on to that letter, and start pushing towards funding that ad. It should be stipulated that if the paper is published before funding for the ad is complete, that the letter should slightly change to inform joe and jane public of that association. This is not 1993, and with the power of the internet, together with funding a well written letter as a full page ad in the right paper we could blow the lid off of this.

We do not have the energy or mobility like ACT up for demonstrations. Our advocacy organizations need to start acting together, staying on message, and co-ordinating their message to the public.

Monroe's comment to the NY Times was an insult. We are not well organized. If we were, a full page ad detailing this entire scandal would have run in the Washington Post, the NY Times, and the Wall Street Journal on July 6th. American Joe and Jane public would have been spitting out their java at reading there's a new retrovirus in town.

But that didn't happen.

One organization needs to step forward to set up a PR fund and the heads of all advocacy organizations for ME/CFS need to co-ordinate to fund it and run it.
It needed to happen 20 years ago, but yesterday will do.

At the end of the day, even with all the research in the world, this is still a Public Relations fight. It's time we fought it.

Time for the leadership to step forward. Time for patients and their carers to put their money into PR. This chance may never come again.

Andrea Martell
Founder
http://BlueRibbonCampaignForME.org

XMRV International Letter Writing Day

2010-07-07T18:50:00.001-04:00

With permission from http://www.dancingwiththesandman.blogspot.com/

MAY BE REPOSTED

Now's your chance to get involved. Using the templates and email addresses provided (see links below) send as many letters to media and government officials as you possibly can. The aim is to get the interest of the media and reach the main government officials. So far, the XMRV scandal has been under-reported. If we don't get the information to the appropriate people this important study will be buried. It may be hard to believe, but the very same thing happened 18 years ago to a young researcher named Elaine DeFreitas, who also discovered a link between a retrovirus and ME/CFS. The CDC destroyed DeFreitas' chances of funding and the research languished.

Here is the link to the templates (please note you will need to be a member of Facebook), kindly donated by members of the ME/CFS community. Please feel free to add your own letter.

http://www.facebook.com/group.php?gid=112160662164471&v=app_2373072738#!/topic.php?uid=112160662164471&topic=39

Here is a link to various email addresses (please note you will need to be a member of Facebook). Please feel free to add to this list.

http://www.facebook.com/topic.php?uid=112160662164471&topic=38

Please add this information to any blog posts you are writing and forums you visit. We want to get as many people involved as possible.

Andrea Whittemore has reported that the researchers are being distracted from their work due to the volume of mail they are receiving. Please refrain from writing to them. The aim of this campaign is to get the media onboard and reach the main government officials TODAY.

Happy writin

Action on the NIH/FDA and CDC Papers Scandal - What you can do

2010-07-04T19:28:00.006-04:00

Updated July 6th, 2010 Stay Tuned for more updates

Patients with ME/CFS are often too sick to leave their homes or their beds so it is only natural that when news was released that BOTH the NIH/FDA paper and the CDC paper were being held from publication there was immediate response across the internet to "let the papers go".

However, the CDC paper was published in Retrovirology on July 1st, and now all efforts are to have PNAS release the unedited version of Dr. Harvey Alter's NIH/FDA paper which was reported to confirm the findings of the WPI that XMRV and ME/CFS are associated. You can follow chronology of the NIH/FDA and CDC papers Scandal by clicking here.

Action- What you can do

Petition started by Judson Wallace for all U.S. residents to sign.

"Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies (already picked for publication in the Proceedings of the National Academy of Sciences) are being WITHHELD, as the CDC was unable to duplicate the findings as well."

Write Letters - Blogger Toadlily provides a letter to write to government agencies concerning the interference of the government in the publication of the NIH/FDA paper and the CDC paper. She also provides addresses of who to send the letters to. A valuable resource for patients and the public to act for change.

XMRV Writing Campaign Patients are organizing to to write letters to the media and their governments. This link contains writing templates and email addresses for you to contact.

Tips
1. Change the Subject line so it won't be picked up by spam filter
2. Be respectful in the letters you write. To the media, put a face on the story. Describe cases of ME/CFS, describe what it is like waiting for a validated XMRV test, mention the outrage of government suppression of science. To the government, concentrate on facts and the horror at the suppression of science. Also emphasize, government exists to serve you. Public servants are accountable to the public.

The Profile Pic Campaign
This profile pic is free for distribution. Activists are asking patients and the public to upload this profile pic up to their facebook, twitter and blogs in order to draw attention to XMRV.The hope is that the more it spreads that people will begin to ask the question.

A video made to inform the public about the danger of XMRV and it's link to ME/CFS asking that the both papers be published. This is a video you can pass on though it would be correct to say "CDC paper published, NIH/FDA paper is still being held". You can pass this video on through the internet and inform the public about XMRV and that the government is interfering in the publication of results regarding its association to ME/CFS

We hope that demonstrations and leaflets will follow at bloodbanks and hospitals by the families and friends of those who are ill, and those who are still well enough to demonstrate. Meanwhile, the housebound and bedbound will continue to use the internet to put pressure on the government and public to release the paper.

(Actions taken by the ME/CFS community to see the NIH/FDA paper published will be tracked here)

Chronology of the NIH/FDA and CDC paper scandal

2010-07-03T08:25:00.009-04:00

Updated July 10th, 2010

This is a play by play of every conflicting statement from sources throughout this scandal!

June 22, 2010- Ortho releases a press release claiming that the FDA and NIH have independently confirmed in a soon to be published paper the WPI findings linking XMRV (a new retrovirus) to ME/CFS.

“ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.”

June 22, 2010- Hillary Johnson, author of Osler’s Web posts on her blog
“I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science.

June 30, 2010- Wall Street Journal reports that the NIH/FDA paper are being held back from publication because the CDC was unable to find XMRV in their study

“The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal. She had no further comment.”

“Kuan-Teh Jeang, editor-in-chief of Retrovirology, said the Switzer paper went through peer review and was accepted for publication when he got a call from the authors earlier this month. They asked that the Retrovirology paper be held.”

"My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said. “

June 30, 2010 Science magazine confirms that the papers are on hold

“Science has learned that a paper describing the new findings, already accepted by the Proceedings of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC). That paper, a retrovirus scientist says, has been submitted to Retrovirology and is also on hold; it fails to find a link between the xenotropic murine leukemia virus-related virus (XMRV) and CFS. The contradiction has caused "nervousness" both at PNAS and among senior officials within the Department of Health and Human Services, of which all three agencies are part, says one scientist with inside knowledge.”

June 30, 2010 Dr. Vincent Racaniello writes in his blog that the papers must not be blocked

“It is senseless to block publication because the two papers reach different conclusions. If both manuscripts were subjected to proper peer-review, and were deemed acceptable by the referees, then they should be published. The journal editorial offices must respect the opinions of the reviewers. By overriding their decisions, they have compromised the entire peer reviewer process.”

July 1st, 2010 early morning CDC paper published in Retrovirology The study finds no XMRV, however, it found its “CFS patients” through phone surveys rather through those diagnosed by a doctor. Unlike the WPI study, the Canadian Criteria for ME/CFS was not used to select patients.

July 1st, 2010 The CAA posts a message on their facebook fan page that conflicts with all other existing reports. The information reportedly came from the NIH,

“Statement from Dr. Harvey Alter, transmitted by the NIH Office of Communication and Public Liaison: "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey Alter, M.D

The question remains why the NIH allowed the CAA to speak for it, when the NIH could have released Dr. Alter’s statement to the media through a press release to the media. This July 1st statement conflicts with all previous statements that the NIH/FDA paper had been accepted before the involvement of the DHHS and CDC.

July 1st, 2010 Wall street journal publishes article about CDC paper

“John T. Burklow, a spokesman for NIH, says the FDA-NIH paper has been accepted for publication but that the authors decided to pull it back to conduct additional experiments. Publication will depend on how long it takes to fully address questions. “It’s a matter of getting it right,” he says”

July 1st, 2010 Dr. Suzanne Vernon of CAA publishes critique of CDC study

"There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS.” Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria."

July 2nd, 2010 CDC calls it’s holding back of paper a ‘strategic pause” published in Nature news

“Monroe called the delay a "strategic pause", initiated after CDC officials learned of a contradictory study by the NIH and FDA team, reported at a meeting by NIH researcher Harvey Alter. Although a PNAS spokeswoman reportedly told The Wall Street Journal that the study had been accepted for publication, press officers at PNAS refused to comment on the matter today. One scientist familiar with the issue said that the journal's editor-in-chief, cell biologist Randy Schekman of the University of California, Berkeley, sent the paper out for further review after government agencies requested the publication delay. That review came back with requests for additional studies, the scientist says.”

July 2nd, 2010 Press release from the WPI regarding the CDC paper

July 2nd, 2010 Science Magazine updates its story on the publication of the CDC paper

“UPDATE 2 July: The authors of the PNAS paper have decided it needs more work. Corresponding author Harvey Alter of the NIH Clinical Center, who is in Berlin this week, issued this statement on 30 June: "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." NIH spokesperson John Burklow explained to Insider that the paper had been accepted, but Alter and his co-authors decided to "pull it back" and revise it in response to questions raised by reviewers.”

July 3rd - Q and Spin with the CDC by Mindy Kitei for CFS Central

"CFS Central:

“Why did the CDC request the FDA/NIH study be put on hold pending more research?”

Dr. Steve Monroe, director of CDC’s division of High Consequence Pathogens and Pathology:
“When CDC, FDA, and NIH learned that separate studies had been conducted with differing results, a collective decision was made to try and account for these differences.” "

July 6th. Mindy Kitei, freelance Science Reporter for CFS Central reports "CFS Central has learned that it was the CDC that made the initial request to pull the FDA/NIH XMRV paper after the Proceedings of the National Academy of Sciences (PNAS) accepted it. Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up ... See Morethe study. In addition, insiders said that HHS can keep any government study from being published—no matter how solid—and that it is anyone’s guess whether the FDA/NIH paper will eventually be published."

July 6th Hillary Johnson, author of Osler's Web gives us a clearer picture of the events surrounded the FDA/NIH Paper

It is interesting to note in her report that the Alter paper after undergoing extensive peer review was in galley-proof (near final version) .

She writes, "Three months prior (probably in March) the authors were invited by scientists at the Centers for Disease Control to brief the CDC about their study. Although the CDC scientists asked these authors for all details of their study as well as a full description of the scientific methodology they used, the CDC chose not to inform Alter and Lo that the CDC had a negative study in press. When the authors learned this information very recently, they were surprised."

July 8th, The Independent in the UK reports of the NIH/FDA study being blocked This is the most interesting part of the story:

"However, the CDC paper has been published online by the journal Retrovirology after intervention by senior virologists concerned about it being held up."

"However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV."

"But in May, at a blood safety meeting in the Croatian capital of Zagreb, a respected virologist, Harvey Alter of the US National Institutes of Health Clinical Centre, gave a talk where he told the audience that he and his colleagues have independently confirmed the Mikovits' study, which is "extremely strong and likely [to be] true".

"It is this study, led by Shyh-Ching Lo of the FDA laboratory in Bethesda, near Washington DC, that was submitted to and initially accepted by the Proceedings of the National Academy of Sciences. However, when officials from the Department of Health and Human Services heard about it they took fright that it would contradict the only other American study into XMRV and the syndrome that was ready for publication, according to sources."

"Shelly Burgess of Proceedings of the National Academy of Sciences said: "The FDA/NIH paper has not yet been accepted for publication. The paper is currently undergoing a rigorous scientific review process."

The FDA declined to comment."

July 9th, the CFIDS Association of America (CAA) announces the FDA/NIH paper will be published within weeks.
"The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks."
July 9th CFS Central reporter Mindy Kitei
"Sources to CFS Central say that the researchers' conclusions have not changed. PNAS Editor Dr. Randy Schekman is on vacation and could not be reached for comment."

July 12th Mindy Kitei of CFS Central reports that newer version of FDA/NIH paper not accepted for publication yet.

"Dr. Randy Schekman, editor-in-chief of the Proceedings of the National Academy of Sciences (PNAS), where the FDA/NIH XMRV ME/CFS paper had been accepted, gave CFS Central an update. The NIH's Dr. Harvey Alter, one of the authors of the study, told Schekman that he'll be returning the paper to the journal "within weeks." After that, the PNAS editorial board will consider the paper, which, Schekman says, is "standard procedure." The FDA/NIH study found the retrovirus XMRV in the majority of ME/CFS patients that it tested."

(This post will be updated regularly as the story unfolds)

Science and Consensus

2010-07-03T07:55:00.000-04:00

"We live restricted by walls, but if all of us with M.E./CFS were to connect, and focus on one objective at a time, we would become the wall our enemies would smash themselves against."- Andrea Martell

“Let's be clear: The work of science has nothing whatever to do with consensus. Consensus is the business of politics. Science, on the contrary, requires only one investigator who happens to be right, which means that he or she has results that are verifiable by reference to the real world. In science consensus is irrelevant. What is relevant is reproducible results. The greatest scientists in history are great precisely because they broke with the consensus. There is no such thing as consensus science. If it's consensus, it isn't science. If it's science, it isn't consensus. Period.”- Michael Crichton M.D. and Author.

Dr. Alter’s paper had been accepted for publication before it was pulled to “get it right” while the CDC paper was published unchanged. This is highly unusual, and if the NIH/FDA paper is not published, as it was originally accepted, not only will the results of the paper be suspect, but the government’s agenda regarding the lives of M.E./CFS patients should become apparent to all.

There is no consensus in science. Science is strengthened by debate. Studies are designed stronger and better because of conflicting results.

The science of XMRV and its link to M.E/CFS must be able to stand or fall on its own without the interference of government. There are millions of lives at stake here.

Our lives are a life sentence. We are isolated in houses, in our rooms, with few to stand up to speak for us when we cannot speak for ourselves.

The story of what is in our blood and in our tissue must be told without influence or interference from politicians or bureaucrats.

It is amongst ourselves that we must build consensus. We have become so polarized and so fragmented over the subject of what to call this disease and how to define this disease that even while we are fighting for seemingly the same goals: treatment, awareness, and research funding, we are sitting in judgment on each other based on our diagnoses.

This is so prevalent that even our leaders consistently feel the need to justify their disease. This justification either comes in the description of tests taken, who we were diagnosed by, or words used to exclude people by diagnosis or definition of this disease. This exclusion only serves to divide us further and that division is what keeps us from becoming what we need to be in order to truly fight against psychiatric lobbies, an apathetic public, and governments who seek to keep us sick, divided, and in the dark.

Our division often reminds me of the story told about the death inquest of Sophia Mirza. Her story is well known to those of us in the M.E./CFS community. Her story can be found here if you are not familiar with it http://www.sophiaandme.org.uk/ .

Taken from http://www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm . Her cause of death: 'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS'

“Two pathologists could not agree which name to use - CFS, M.E. or M.E./CFS. In the end it was stated that CFS is a modern word for M.E. This is why CFS was used on the death certificate.”

This must be made clear: these two pathologists were not debating the illness that caused her death. They were debating what to call it on her death certificate.

That debate is manifested everyday around the world amongst patients; and between advocates. We use terms like ‘pure’ to describe our illness to make sure that the whole world knows we are not associated with that other group or we simply say ‘I don’t have CFS.’ Each of these statements, and words are used like knives to divide us from each other.

Who does that serve? Who does this division and discrimination serve? The origins of these words do not come from us. The origins of these statements come from psychiatrists and doctors who have twisted words and facts to try to get even you the patient to define a physical disease as a psychological one.

The World Health Organization classifies M.E., CFS, and PVFS all at G93.3. Yes, there is controversy because of differing definitions, politics, and the psychiatric lobby. But what does that really have to do with us? That is for science to sort out.

Raise awareness about our plight, and raise funding for biomedical research and scientists will sort out the definitions and their controversies through science and debate. Let the scientist’s debate. It is we who must build consensus!

The reason is that no matter how twisted the wording and definitions of M.E./CFS become it does not change simple facts. Whether your diagnosis is M.E. or Chronic Fatigue Syndrome, you are invisible.

You face the same discrimination from doctors, from family members, from workmates, from spouses and lovers. You face the same trials daily of managing this disease. You face the same humiliations in admitting your body was not like it was before. You face the dark each night wondering what the future will bring. You cower from the pain of the light, and the noise. You measure your words, because you do not know for how long you can speak. Your body pays the price of strong emotion and heavy mental lifting whether it’s reading, writing or both.

We face the same fight because we are all sick. All of us deserve compassion and understanding from doctors, politicians, friends and family members. More importantly, we deserve it from each other because we fight the same fight every day.

Whether our diagnosis is M.E. or CFS or M.E./CFS or PVFS, we fight the same fight everyday.

We are in the midst of a war for our very survival. Governments have been interfering with M.E./CFS research for decades and that interference will continue as long as we are divided as a community.

We must find common ground, and build bridges between organizations, and build connections between patients. We're all in this together. If we fight the same fights together, we will win this war together.

We live restricted by walls, but if all of us with M.E./CFS were to connect, and focus on one objective at a time, we would become the wall our enemies would smash themselves against.

“If we do not hang together, we shall surely hang separately.” Thomas Paine

Andrea Martell
Blue Ribbon Campaign for M.E./CFS
http://www.BRCforME.org/

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