Amy Docker Marcus

bullybeef

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Has anyone thought to contact Amy Docker Marcus from the WSJ?
http://online.wsj.com/public/resources/documents/SB111263120089597221.htm

I felt compelled to: amy.marcus@wsj.com

Hello Ms Marcus,

Can I first congratulate you on everything you are doing to expose a prominent threat to compromise the US blood supply, and your continued vigor to report on this blatant attempt to silence the new human retrovirus XMRV from the public. Just that fact there is a chance that up to 7% of the blood donor population is infected is highly worrying. Could we really be talking about civilized ethic cleansing by keeping this issue from the general public. And I don't think that opinion is too strong a statement to suggest. The dealings that have occurred over the last 48 hours are nothing short of malfeasance. But personally this issue effects my future, and possibly my families future if I am found to be positive. Not to mention, the future of millions of other sufferers around the world.

I have suffered with ME (I'm afraid I cannot bring myself to use the acronym C.F.S.) from anything from 6-10 years, and continue to suffer today. For most of that time I ignored it, remained undiagnosed, and wondered why my body was changing. I wasn't even in my thirties. It wasn't until 2006 that I decided to seek medical help. I am in the UK where ME is considered, like most places around the world, a physcological, or somatoform condition. But to try and get that in writing from the likes of the UKs Department of Health is as unlikely as me dancing on the moon. I have numerous email responses from the UK Dept. of Health, and although they do concur that ME is a neurological disorder as recognized by the World Health Organization, we all know otherwise. I went on to be misdiagnosed with bowel disease (Dr. Mikovits has anecdotally mention bowel diseases may also be linked to the virus), which was later retracted, and I never discovered why. The point to this short history was, during that 8 years of being undiagnosed, and misdiagnosed, I could have quite easily donated my blood, and on many occasions too. The fact I could so easily contaminate the blood supply is based upon the poor diagnostic measures used to prove someone has ME, and many people with the condition have ample opportunity to donate their blood during these periods of limbo.

Dr. John Coffin, the eminent retrovirologist, has suggested XMRV could have been within humans for 50 years. That would tell me it would be an amazing stroke of luck if this virus has avoided any nations blood supply. With no approved diagnostic test to screen for the virus within the blood supplies, how many people a day are becoming infected with XMRV? That is a scary thought.

So why are the likes of the CDC behaving so irresponsibly, and not giving XMRV the benefit of doubt? Could XMRV prevalence reached such a tipping point that the likes of the CDC have conceded defeat in that this is something they cannot control, treat, and more realistically, afford? Post global recession, and we could have the biggest health issue ever known to man. 7% of the global population is over 400 million people. I'm not surprised the CDC is worried, and they have many more reasons to disprove the ME/XMRV link, than to show it to be fact.

When the ME/XMRV association was first announced last October, I'd only been officially diagnosed for just over a year; in ME terms, I was a baby. But I have since researched, asked questions, found mountains of inflammatory evidence and information that would make a AIDS patients toes curl. The ME story is drenched in controversy, and someone is making an awful lot of money to dodge the truth, and keep our status quo.

Please could you keep up this pressure on the CDC etc, for the future health of not just ME sufferers worldwide, but our children, and the people being unknowingly infected via blood transfusions. In respects to blood transfusion and ME infection, I do have some evidence that this has been very much suspected: http://www.mefmaction.net/Portals/0/docs/Blood Transfusions and CFS.pdf

Also people need to understand that ME is fatal, just as AIDS was before it was discovered: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes of Death - CFS Patients.pdf

People wont listen unless they fear it. I live in fear everyday that my heart will give in. My fear is not being able to say goodbye to my wife and children, and yet according to the UK NHS, my heart is fine, but only because I will not receive the relevant tests as part of the service:
http://heartdisease.about.com/od/livingwithheartfailure/a/diastolic_HF.htm

And will I go on to be a silent voice in a sea of tragedy and scandal: http://www.ncf-net.org/memorial.htm

Apart from one person in the UK whom receive the autopsy her mother quite bravely fought for: http://www.sophiaandme.org.uk/
One of the very few people to receive ME as an unwanted cause of death on their death certificate.

We live in hope that Dr. Alter upholds his reputation by delivering a defiant blow that would rock the CDC to its knees. His study needs to be published, as it was, and as he already declared in Zagreb. I really hope you will continue to seek the truth on our behalf. We need you, more than youll ever know.

Your sincerely,
 

Otis

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Bravo bullybeef. I sent her an email when the funny-business came out with Alter's paper to see if I could get any clarification on the status of the acceptance of the NIH paper given that she was the source of the initial report of that report. I heard nothing back but it's time to try again!

Thanks, Otis
 

justinreilly

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Bullybeef-

Thanks for writing to the WSJ. This is crucial for us. One point- this was an oversight i am sure- you said ME is fatal and of course it is sometimes fatal. Maybe you could email her a quick correction. people grab onto the slightest errors we make to discredit us and i hope WSJ doesn't do this.
 

muffin

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I too thanked her

After her first article I sent an email to her address and thanked her for a great article. I also told her that this could be (should be) a huge story and one that will affect billions of people and that she should stay on top of it and keep digging.

Smart woman. She is on top and seems to have contacts in place. I bet she does come out with the first real heavy-hitting story on just what is going on behind the curtains at CDC and why.

So, keep thanking her for a job well done. We need the smart journalists who seem to understand that this could be one of the biggest news stories in medicine for quite some time. Never know what this little bugger XMRV may cause cancer wise and diseases wise.
 

Recovery Soon

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I just sent this to her (subject heading- PULITZER):

Ms. Marcus,

Thanks so much for your continued pursuit of the XMRV connection to CFS, and the recent suppression of science.

I know you are being bombarded by patients, so let me be brief:

I was a very successful television writer/producer (specific networks included in original email) and in terrific physical shape, when one day I abruptly felt flu symptoms nearly four years ago.

Thousands upon thousands of wasted dollars, and untold suffering later, I am still very sick, and have been forced to leave that prestigious/lucrative career behind me.

I cannot tell you all that I have sacrificed throughout this nightmare- it would bore you- and depress me.

However, I do want to say from one media person to another that you are on the trail of something huge.

I believe you are poised to be the Bob Woodward of an appalling Government scandal, which has left millions sick, forgotten, branded and blamed.

The thought of blood contamination on this scale makes Watergate look like a traffic offense.

If you continue following this trail to the end, and continue speaking truth to power, I believe you will send shockwaves around the world with what you uncover, and help end massive suffering on a scale that is simply unimaginable.

After all- That's why one becomes a journalist in the first place, isn't it?

In the years that I have had this disease, it is clear we are at a tipping point.

Please Keep Pushing.

Best Wishes,
 

muffin

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RS: Great letter and the truth. If she keeps on this she really well could be on track for a number of the big media awards. In addition to helping billions of people worldwide. What a coup that would be for her.
 

jimbob

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excellent bullybeef and recovery soon! I hope you convinced her to stay on board. bullybeef hang in there buddy, the scales will tip our way soon. We all have such horrific tales to tell, don't we! I'm 9,584 days since acute onset, enough is enough!!!
 

bullybeef

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Bullybeef-

Thanks for writing to the WSJ. This is crucial for us. One point- this was an oversight i am sure- you said ME is fatal and of course it is sometimes fatal. Maybe you could email her a quick correction. people grab onto the slightest errors we make to discredit us and i hope WSJ doesn't do this.
Thanks for the heads up, justin, I see now I should have said "in some cases ME is fatal..." Completely noted, and I've already sent Ms Marcus a correction email.

And thanks for the kudos everyone, after reading that Amy has already reported on other medical matters previously, and won a Pulitzer, I'd like to believe she's in this for the long haul.

Her interested may make it difficult for Dr. Alter to backtrack on his original statement/slide, and if he does it would scream a conflict of interest with the whole department (CDC and HHS). In other words they all have very plausible reasons why they don’t wish to find XMRV. I keep using the phrase malfeasance, because that is exactly what is going on here, and you'd have to be blind not to see it.
 

Recovery Soon

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Recovery, nice to meet a fellow Fourth Estate warrior.

Tina
Ditto Tina.

I really think this reporter is standing at the edge of a journalistic gold mine. She seems to get that from her articles thus far. I just hope she is willing to go the distance.

I also think she's the one to help get us to 60 MINUTES- which is the real goal in my eyes. That happens- Game Over.

Just think about the Whittemore Angle- Mother saves sick daughter and millions of others while fighting a Government coverup- which threatened the Nation's Blood Supply.

Erin Brockovich only saved a town- and THAT won an Oscar.
 
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yeah, I sent letter to 60 Minutes in January. No response. But a lot more news now.

I did mention " How could a lab less than three years old find this virus but not the CDC that has been studying this illness for over twenty years?"

And I agree, the personal drama story of Anne is a great angle.

As for a movie, I think Peterson's story is more compelling. He is a true hero.

Tina
 

ixchelkali

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Just think about the Whittemore Angle- Mother saves sick daughter and millions of others while fighting a Government coverup- which threatened the Nation's Blood Supply.

Erin Brockovich only saved a town- and THAT won an Oscar.
So, do we get Sandra Bullock to play Annette Whittemore in the movie version? ;)
 

muffin

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Let us hope and pray that Ms. Marcus

is going deep and getting more dirt on all of this. Feed her as much solid info as possible. Send her medical documents, links to good/valid stuff, etc. The more we can give her without overdoing/overwhelming her, the better background and info and tips to contact for another great story by her.

She is out in front and we need her to stay out in front. She wins when this thing hits and we win having her do a great job.

Let's hope that she gets great info and hit the next one way out of the park.
 
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Of all the stories in Osler's Web, I found Dr. P's most compelling. He is the biggest hero among us for he has no family members who have the disease, but his sacrifices in reputation, career, and financial as well as personal were for his patients. And it has been a very long battle.

Tina