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EMAIL THE HEAD OF THE CDC: Dr. Thomas R. Frieden - EMAIL ADDRESS IN POST

Discussion in 'Action Alerts and Advocacy' started by muffin, Jun 5, 2010.

  1. muffin

    muffin Senior Member

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    ftdh@cdc.gov - Dr. Thomas Frieden's email as the head of the CDC.

    Please be GRACIOUS, clear and concise about what we believe the CDC should be doing about CFIDS, XMRV research, funding, education of physicians/public, blood supply, change in PRIORITY UPWARDS to the level of a true CRITICAL state, etc. Frieden needs to understand the issues that have surrounded the CDC/CFS program for the last almost three decades. I have sent him Hilary Johnson's Osler's Web website text and link so that he might read WHY we are so damn mad at the CDC/CFS program.

    Please! Those that think and write well, send Dr. Frieden an email with our concerns. Give him a brief background on the sordid history of CFS. To our British, Canadian, Australian, etc. friends - go ahead and write Dr. Frieden. No need to mention you are not an American, but remember that what the US CDC does, the other parts of the world do follow. I don't think it matters who writes to him as long as the email is clear, concise, and has solid requests - e.g., significantly greater funding than the $3M or so it is getting now, especially in light of XMRV studies (cite those studies); far better accuracy in accounting/surveillance of the CFIDS sick given that there are not enough physicians that can diagnose/treat CFIDS and thus, can not even report the real and true numbers of CFIDS sick.

    My brain is no longer working and I don't want to mess up and write to him anymore. So, I call upon those of you who are brilliant thinkers and writers to go ahead, email Dr. Frieden. Now, although I am a bigger supporter of the private researchers like WPI I do still believe that the Federal agencies must still be involved since they do have the millions and billions of dollars to spend and provide grants to those private researchers. Like it or not, we must keep the Feds involved in CFIDS since they have the money and influence.

    Below is an article on Frieden and what he has done in his job at the CDC. WE must get CFIDS/XMRV on the list of HIGH PRIORITIES for the CDC. Someone who really understands needs to explain why XMRV affects not just CFIDS people, but ALL people and is a known cancer-causing virus. We need to make sure that he is aware of WPI (and use their website link) to show that there is an anti-body test coming out 1 July. Now, if there is an antibody test coming out, does one not deduce that there really MUST be a virus to look for with that antibody test??? Frieden needs to understand ALL aspects of CFIDS/XMRV so that he can get the CDC's priorties changed. Swine Flu was a joke. CFIDS is NOT a joke and we are already a true epidemic and have been for 30 years.

    PLEASE SMART, INFORMED AND GOOD WRITERS --- EMAIL DR. FRIEDEN AND GET HIM TO HEAR US. THANK YOU --- ---------------------------------------------------------------------------------------------------------------------
    Scientist at Work: Dr. Thomas R. Frieden
    Obamas C.D.C. Director, Wielding a Big Broom
    By GARDINER HARRIS
    Published: March 15, 2010
    http://www.nytimes.com/2010/03/16/health/16prof.html
    Jim R. Bounds/Bloomberg
    SWEEPING Since arriving at the Centers for Disease Control and Prevention in June, Dr. Thomas R. Frieden has scrapped most of the Bush-era changes.
    A year into the Obama administration, only the new buildings remain. Dr. Thomas R. Frieden, the agencys director since June, has quietly scrapped nearly all the administrative changes that the previous director, Dr. Julie L. Gerberding, spent much of her six-year tenure conceiving and carrying out.
    Gone are the nonscientific managers whom Dr. Gerberding sprinkled throughout the agencys top ranks. Gone is a layer of bureaucracy, agency officials said. Gone, too, are the captains chairs with cup holders from a conference room so fancy that agency managers dubbed it the Crown Room.
    In their place, Dr. Frieden has restored not only much of the agencys previous organizational structure and scientific managers, but also its drab furniture. And he has brought something new: a frenetic sense of urgency.
    The C.D.C. is considered one of the worlds premier public health agencies, responsible for tracking the spread of infectious disease, distributing vaccines and monitoring the causes of sickness and deaths. About three-quarters of its $10 billion annual budget is given out in grants to places like state and local health departments, which collectively lost 16,000 positions last year, according to a recent public health survey, making those grants that much more important.
    Dr. Frieden, 49, a former New York City health commissioner, marches around the agencys Atlanta campus so rapidly that staffers have to trot to keep up. He uses his BlackBerry constantly, sending a stream of brief e-mail messages that are so cryptic that recipients sometimes ask for translations. Kmi, for instance, means keep me informed.
    By the end of her tenure, Dr. Gerberding had become so removed from day-to-day management that some top agency officials went weeks without seeing or hearing from her, they said. Dr. Frieden, by contrast, sometimes wanders the agencys hallways and drops in on scientists unannounced to ask about their work, both delighting and terrifying them.
    In an interview last month, in his 12th-floor office, Dr. Frieden said that when he arrived in June, there was near-universal agreement that change was needed, but nobody wanted a repeat of the disruption Dr. Gerberdings years-long reorganization had wrought.
    Faced with that, you pull off the Band-Aid quickly, Dr. Frieden said.
    Within two months, Dr. Frieden eliminated the coordinating centers, a layer of management Dr. Gerberding had added between the agencys scientists and top leadership. The Coordinating Center for Infectious Diseases, with 600 employees, became the Office of Infectious Diseases, with 12. No one was fired; the agencys leadership was simply pared.
    Now president of Merck Vaccines, Dr. Gerberding said in an e-mailed statement: The 9/11 and anthrax attacks, SARS, and other global health threats altered the landscape of public health forever and made it necessary for C.D.C. to work faster and more synergistically to protect health than it had before. That was the intent of the reorganization. Im sure the new ideas that Dr. Frieden is introducing are motivated by the same intent."
    Agency employees and former leaders said in interviews that they were thrilled with Dr. Friedens changes.
    I think hes doing a great job, said Dr. Jeffrey P. Koplan, one of five former C.D.C. directors who had publicly criticized Dr. Gerberdings leadership. He is setting priorities and sticking to them.
    Part of the agencys embrace of Dr. Frieden probably has to do with politics. Despite being in a Republican state, the disease centers staff, like much of the public health world, is overwhelmingly Democratic, so employees tend to prefer directors appointed by Democratic presidents. Also, Dr. Frieden began his career in 1990 as an officer in the Epidemic Intelligence Service of the C.D.C. at New York Citys health department, doing the base-level tracking of diseases that is fundamental to the agency.
    Dr. Frieden said that among his priorities for the agency, the most important are improving its disease tracking and supporting state and local government health offices.
    All of public health starts with more information, he said. We have to analyze what we have better and disseminate it better.
    And with the poor economy and mounting deficits straining budgets, Dr. Frieden has been scrutinizing the C.D.C for savings to pay for his priorities.
    Some agency officials panicked when Dr. Frieden asked each to plan for a 3 percent budget cut. The exercise found few easy cuts and fewer still that could be used to finance other programs.
    We have very little flexibility to move money around, Dr. Frieden said.
    Although he now lives in the South, Dr. Frieden is still very much a New Yorker. He returns from visits to New York with bags of bagels. He speaks longingly of New Yorks neighborhoods, and, in a series of meetings on Feb. 24, repeatedly referred to his experiences as the citys health commissioner.
    One of the lessons from New York, he said, is that many of the programs that have the greatest impact on public health get the least attention. During his eight-year tenure there, for instance, smoking rates among teenagers declined while colon cancer screening efforts climbed, he said. Neither got much publicity, he said, sounding somewhat wounded.
    He promised to continue focusing on basic tasks like getting those people at risk of heart attacks to take aspirin; those with high blood pressure to get treatment; and those who smoke to stop.
    In New York, Dr. Frieden came under fire for, according to some critics, acting like a nanny and a scold with campaigns to ban trans fats, post calorie counts in chain restaurants, reduce salt in processed food and tax high-calorie sodas. He had a supportive boss in Mayor Michael R. Bloomberg and a receptive populace in New York, but if he were to try anything similar at the C.D.C., tough Congressional hearings could be in his future because conservative lawmakers on Capitol Hill often oppose such measures.
    Dr. Frieden rarely discusses his family publicly, and he dismissed questions about how his wife and two children were coping with the move to Atlanta by saying, Moves are always transitions, and they can be difficult. Agency officials said that the stream of e-mail messages from him tapers off between 6 and 9 p.m., when he is with family.
    His days are filled with short meetings in which he quickly makes his points and leaves at the appointed times. When the 25 minutes allotted for an interview ended, he got up, shook hands and left.
    Theres a time to make things happen, Dr. Frieden said, and if you miss the wave, youre not going get stuff done.
     
  2. muffin

    muffin Senior Member

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    This was Mike Dessin's testimony given at CFSAC. Mike did an outstanding job of really telling our/his story. I hope that Mike sees this and sends Frieden an email with his story. If Mike could also send those horrible photos of himself when he was so terribly sick, that would be great. Those photos shocked even me. I was stunned at how a big, young, good looking guy could be so terribly sick and I would like Frieden to see this for himself. I also would like Frieden to see that MEN GET CFIDS and that most probably CFiDS is horribly under-reported in men for many stupid reasons. Mike is a perfect example. Ditto for Cort and the other men on our site who have CFIDS. It's NOT just "neurotic women" who get CFIDS. It's the real men who get it too.

    Mike, Cort and all other men: Please email Frieden with your quick story and make sure your male name is there clearly. Frieden needs to know that MEN GET CFIDS. Men also are the only ones to get prostate cancer as well......the XMRV hook.....


    Recovered CFS/ME Patient Goes to Washington, D.C.
    MIke Dessin testifies for the CFSAC about his remarkable recovery

    Last year around this time, Mike Dessin almost died from severe myalgic encephalomyelitis. He credits his recovery to a physician in Ohio who treated him with an experimental twist on a time-tested treatment from Germany: neural therapy. Neural therapy usually entails injecting Procaine (Novocain), a common local anesthetic, into certain areas of the body. This doctor uses homeopathics rather than anesthesia. The treatment is based on the theory that trauma can produce long-standing disturbances in the electrochemical function of tissues.
    MIke’s story is well documented on Cort Johnson’s excellent new forum “Phoenix Rising” here: New Day Treatment.
    Since recovering much of his health, one of Mike’s goals has been to help educate physicians about CFS/ME through his own experience with this poorly understood disease. Below is his recent testimony for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, D.C.:

    Here is the transcript of this speech, including the part that he was unable to read at the end due to time limitations:
    Hi my name is Mike Dessin, I’ve had Myalgic Encephalomyelits for 14 years, a disease that is unjustly named Chronic Fatigue Syndrome in the U.S. I had one of the most severe cases of ME/CFS ever recorded, with subsequent remission.
    At the worst stage of my illness, which was about a year ago, I suffered beyond what most humans can comprehend.
    I was completely bedridden and unable to lean up more than a few inches. I was unable to read, write, understand words when spoken too, or complete a thought process. Even a bit of thinking would hyper stimulate my nervous system too much. I had severe dementia. I couldn’t see the walls around me. Neurological dysfunction too obscure to put into words. In the last month before my recovery I was unconscious an estimated 90% of the time, not sleeping but literally unconscious. I was basically comatose.
    I’m nearly 6’3, and last December I weighed 102 pounds. I had heart failure, severe pancreatitis and my lungs collapsed. My body was producing just enough energy to sustain a heartbeat.
    To make things even worse, I was confined to a pitch black room isolated from the world. Unable to tolerate the slightest bit of light or noise much of the time. I had sensory overload so bad, I couldn’t be touched, as it was too stimulating. The consequences of being over stimulated resulted in further exhaustion and seizures.
    In addition, I had EXTREME chemical and Electromagnetic Frequency sensitivities. Needless to say, I had to be in a very special environment to stay alive. It is painstakingly difficult to care for someone in the condition I was in.
    I was as sick as an end stage AIDS and MS patient put TOGETHER. Immune deficiency similar to what an AIDS patient presents and more nervous system abnormalities than most MS patients. But I don’t have MS or AIDS. I have a disease called Chronic Fatigue Syndrome, which merely describes a symptom these diseases share.
    I was left for dead; I was left withering away in my dark room. I was left to die due to the extreme lack of knowledge, compassion or regard by our medical community.
    I had spent 10 years searching for help from doctors. I would hear, oh it’s JUST allergies, it’s JUST chronic Epstein Barr, it’s JUST depression, oh it’s JUST chronic fatigue syndrome and there is nothing we can do.
    In the fall of 06’ I fell down in a hotel lobby in New York, I was suffering from CFS related exhaustion. My dad called 911 and the ambulance came to pick me up. On the way to the hospital, I told the tech “I had severe exhaustion and I had Chronic Fatigue Syndrome,” some know the disease as Myalgic Encephalomyelitis. The tech said there was no such thing as Myalgic Encephalomyelitis.
    When I arrived at the hospital they said my vitals were normal and they put me in the psychiatric unit. I spent 24 hours there, where I was strip searched, repeatedly questioned about my personal life and given a cocktail of psychiatric drugs. Shortly after, I went into my last relapse that would nearly end my life.
    Now who’s to blame for all of this? Clearly this disease and its millions of sufferers have been shortchanged in an EPIC way over the last 20 years by the government, medical community and the public at large. There has been a false stigma attached to the disease created by lack of research and inaccurate information disseminated by the CDC.
    One major cause in this disease not getting the proper recognition stems from the naming and definition. The CDC wrongly changed the name of Myalgic Encephalomyelitis to CFS, in an attempt to undermine the serious nature of this disease, in favor of politics and economics.
    In saying that, I am just one of thousands upon thousands of ME/CFS patients who are currently suffering near the extent I was. The only difference, they most likely won’t live to share their experience, unless things change. Many ME/CFS patients succumb to cancer, heart failure, pancreatitis and other co-morbid conditions that come along with having this disease. Many will die from suicide, committing suicide at a rate, double that of MS patients.
    They are not committing suicide because of depression or stress. They are committing suicide for multiple reasons which include.
    Suicide from decrease in quality of life, created by this disease. Their committing suicide because, the medical community, family and friends, don’t understand what is happening to them, and there is little hope for a cure.
    They are committing suicide because they can’t bare the extreme physical and neurological dysfunction. They are committing suicide because many of them are inundated with toxic poisoning. They are committing suicide because they have dozens upon dozens of infections that human beings are not supposed to get. Their committing suicide because they have no safe place to go, no special facilities that have staff trained to care for ME/CFS patients. No special facilities that are free of chemicals or sensory stimulus. These patients have NO WHERE TO TURN.
    So while these patients are being suffocated by toxins and destroyed by viruses, suffering greatly, the CDC’s answer, let’s spend money to research the effectiveness of cognitive behavioral therapy and graded exercise therapy.
    I’m alive and speaking to you today because I got proper treatment. A treatment that focuses on the true biomedical basis of this disease rather than the MYTHS created surrounding this disease.
    Myths, such as treating this disease with cognitive behavioral therapy (CBT) and psychological intervention should be primary treatments and coping mechanisms. As well as using Graded Exercise Therapy for increased exercise threshold. These therapies do not even come close to a real cure and can be extremely dangerous UNLESS they are integrated into a therapy that addresses underlying issues.
    I realize that this is the easy way out for Reeves and his side kick Simon Wessley in the U.K.. If we think this is an effective treatment, why do I speak with thousands of ME/CFS patients who feel differently? Why is there no person in this room with true CFS …..who has been helped by these therapies?
    Why have ME/CFS patients died from extreme relapses brought on by these therapies? They die, because if done at times where they have difficulty processing information, cognitive input can put them into extreme relapse. Yes, it actually progresses the disease. They die because they think graded exercise is beneficial. In reality, exercise in many cases can lead to further damages to their body and a downward progression of the disease. Yes, pacing is a good thing, and that is what ME/CFS patients should do….on their own terms.
    Blaming stress and depression instead of looking for a legit biomedical explanation of this disease seems to be another easy way out for the CDC. It’s highly unlikely ENTIRE outbreaks have been caused by stress and depression. Entire towns just suddenly get ME/CFS because there stressed and depressed. Truth is, due to abnormalities in the nervous system brought on by this disease, stress or depression can cause disease progression, just as with most other diseases.
    You’ve been listening to patient testimony for years, If you really thought this is a serious issue, why do most doctors still have no idea what CFS is, and many have never heard of ME.
    Why have government funds for the study of this disease dwindled over recent years?
    Why is this disease not taken serious by our researchers?
    Why do our peers not take this disease seriously?
    Why hasn’t the name chronic fatigue syndrome been changed, to accurately reflect the nature of this disease?
    Why does the U.S have the most watered down definition of Chronic Fatigue Syndrome?
    Why are there no facilities equipped to take care of severely ill ME/CFS patients?
    Why are patients not covered by insurance when they seek the help of alternative minded doctors, when these doctors are the ones saving the lives of ME/CFS patients?
    These issues still remain, because they solely reflect what you are NOT doing for our community.
    I nearly lost my life, and many others are suffering and will die prematurely, if we all don’t step up, and do the right thing.
    It’s time for a New Day to begin.”
     
  3. biophile

    biophile Places I'd rather be.

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    The CDC will not care

    I doubt the CDC will care, especially when they read about "electromagnetic sensitivity" and being successfully treated with "homeopathic Novocain".

    Mike's severe weight loss did not really concern the medical professionals he encountered in person, so what are photos going to do? I have been almost as skinny as Mike due to complications of CFS, and I was wrongly accused of just being depressed and having an eating disorder.

    From here: http://aboutmecfs.org/Story/MECFSRecovery.aspx

    Maybe I am being cynical due to my own experiences but the CDC is not going to take any of this seriously. Mentioning these treatments to the CDC could even be detrimental.
     
  4. dannybex

    dannybex Senior Member

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    Well I think it's worth a shot, but if you write, keep it very short and to the point as he clearly sounds like a disciplined, structured sort of man, with a LOT on his plate.

    "His days are filled with short meetings in which he quickly makes his points and leaves at the appointed times. When the 25 minutes allotted for an interview ended, he got up, shook hands and left. “There’s a time to make things happen,” Dr. Frieden said, “and if you miss the wave, you’re not going get stuff done.”

    Thanks for posting Muffin.
     
  5. muffin

    muffin Senior Member

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    Frieden's email back to me - He does respond to emails

    First, for very obvious reasons, I am NOT a fan of the CDC. I also am aware that they are a big, bloated, slow moving bureaucracy that now exists solely for its own self-preservation. I do believe that the CDC’s “marketing” and “public relations” departments are really running the show instead of the scientists and physicians that should be picking up on true issues. In my opinion, Swine Flu and the other viruses were hyped and overplayed to maintain and up CDC’s funding. However, it does appear that Frieden is for real and is moving fast and cutting away the dead-wood, which is good. He was somehow involved in moving Bill Reeves out of the CDC/CFS program. That's good too. So I do think that our best writers like Parvo, Cort and others should write short, concise and informative emails to Frieden on XMRV and all of its implications for the population of the US and the world.

    Below is an email that Frieden sent me after I sent an email to Dr. Mitchell Cohen, Dr. Ali Khan and Dr. Frieden. His email to me came after I had sent him several emails on the topics of CFIDS, removing Reeves, etc. Eventually Frieden did respond to me and his email did show he was pretty well informed on the XMRV study. Or, if someone else wrote it for him he had to have at least read the letter before sending it off to me under his signature. But I would bet that he wrote the letter himself as it seems to "fit" his personality as profiled in several articles written about him and his actions at CDC thus far.

    Again, email this guy. He is just a Federal employee and is paid by American taxpayers. Inform and update him on all that WPI is doing with XMRV research and testing. Voice your concerns about the direction that the CDC is NOT going in with regards to real CFIDS research and funding. Take a shot --- you never know what will stick in someone's mind that pushes them to go and see what the heck is going on and then makes the necessary major changes because they have the brains to understand what the real situation is. Frieden may be that guy with the brains.
    ---------------------------------------------------------------------------------------------
    Thomas R. Frieden (CDC) to you -
    Thomas R. Frieden (CDC) <ftdh@cdc.gov
    Wed, Mar 10, 2010 12:07 pm
    Response to Inquiry


    Thank you for your e-mail to Dr. Mitchell Cohen, Dr. Ali Khan, and me at the Centers for Disease Control and Prevention (CDC) regarding your concerns about CDC’s chronic fatigue syndrome (CFS) research program. In particular, you expressed concerns about our response to the recent study published in Science that described the detection of the retrovirus XMRV in blood cells of patients with CFS. Please excuse the delay of this response.

    Please be assured that CDC and others have worked considerably to find associations between infectious agents, including retroviruses, and CFS. The recent publication in Science illustrates the benefit of exploring all options related to the causality and pathophysiology of CFS, and CDC looks forward to further research that will be stimulated by these findings. It is premature, however, to speculate about a causative link between XMRV and CFS. The results from this study will need to be compared with those from similar studies that are under way in other laboratories around the world.
    CDC is investigating XMRV in collaboration with other agencies within the Department of Health and Human Services (HHS). For example, at the National Institutes of Health (NIH), the National Heart, Lung and Blood Institute (NHLBI) is leading the XMRV Blood Scientific Research Working Group, which includes key scientists who are working on XMRV. The NIH’s NHLBI funds the Retroviral Epidemiology Donor Study that is developing a specimen panel for standardization and validation of the current research test. Similarly, the National Cancer Institute has retrovirus experts who are working to validate and standardize research diagnostic tests. CDC’s Division of HIV/AIDS Prevention (DHAP) developed assays for XMRV detection after the first reports of XMRV-associated prostatic cancer. CDC’s CFS Research Program has provided DHAP with specimens from well-characterized CFS patients and appropriately matched healthy controls for testing.

    In addition, CDC is engaged in efforts to determine the potential for transfusion transmission of XMRV infection. Because infectious XMRV has been found to be present in plasma and blood cells, blood-borne transmission is a possibility that is being investigated further, including the risk for transmission by blood or blood products and any disease that may result from transmission to transfusion recipients. CDC’s Office of Blood, Organ, and Other Tissue Safety coordinates our response to threats to the blood supply with HHS’s Assistant Secretary for Health, who is the nation’s blood safety director. Through committees convened by the Assistant Secretary for Health, public health agencies—including CDC—are taking steps to investigate the blood safety threat from XMRV to ensure transfusion and transplantation safety.

    Thank you again for your letter and for your interest in this important public health issue. We believe that our current approach will ensure scientific objectivity and an appropriate perspective as we learn more about XMRV and possible disease associations.

    Sincerely,
    Thomas R. Frieden, M.D., M.P.H.
    Director, CDC, and Administrator, Agency for Toxic Substances and Disease Registry
     
  6. jimbob

    jimbob ME/CFS84-XMRV+

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    Not being judgemental here, but what's wrong with my bombardment idea?
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Your bombardment idea is great!
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    IMO the chance that Friedan himself wrote the email to you is nil. This was probably a form letter on XMRV and "CFS" tweaked by a staff member. and the chance it was reviewed by him before being sent out is extremely low (though i would think he probably at least was briefed on or approved the substance of a general form letter on XMRV and CFS).

    I am not encouraged by this email. there is nothing to indicate to me that there is any intention of doing anything other than business as usual. It says blood bourne transmission is a 'possibility' for example, which is much more conservative than what even Jerry Holmberg said at the last CFSAC meeting.

    As a competent administrator i am sure his office keeps track of how many letters come in on what topic and staffers may be asked periodically what the gesalt is from the public- what are people saying in general, what's 'hot'? So it certainly is worth it to write in. Thanks alot for pushing this!
     
  9. boomer

    boomer Senior Member

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    Could you please post his email address? Thanks.
     
  10. muffin

    muffin Senior Member

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    ftdh@cdc.gov - Dr. Thomas Frieden's email as the head of the CDC.

    ftdh@cdc.gov - Dr. Thomas Frieden's email as the head of the CDC.

    EMAIL HIM!!!
     
  11. muffin

    muffin Senior Member

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    Certainly possible it is a form letter but he did cite the other two men that I also wrote to in the email. Who knows. Just keep emailing him with the facts and figures on CFIDS, XMRV, etc.
    Again, you never know what will smack someone in the head and get them to go and do something about a problem that has been "hidden" pretty darn good for 30 years.
     
  12. bakercape

    bakercape Senior Member

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    done

    emailed him.
     
  13. muffin

    muffin Senior Member

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    Bakercape: Thanks! ALL of those people at the CDC, NIH, DHSS and so on work for US. Never forget that and never let them forget that either.
     
  14. biophile

    biophile Places I'd rather be.

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    I wish to add to my earlier comment, I am not against emailing go for it but please take care in sounding credible in their perspective. Talking about homeopathy and acupuncture etc is not going to impress them at all.
     
  15. JillBohr

    JillBohr Senior Member

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    I emailed him as well.
     
  16. muffin

    muffin Senior Member

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    Jill: Thanks for doing that! Frieden needs to hear from us. I actually do like the idea of a "bombardment" that was quickly posted here and then removed. Why not? Let him see just how many CFID sick there really are and who are paying strict attention to the doings of the CDC. Keep emailing --- the Feds work for you.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  18. muffin

    muffin Senior Member

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    COPIED FROM JUSTIN'S POST ELSEWHERE. I THINK THIS IS ACTUALLY BRILLIANT! LET'S DO IT. THANKS JUSTIN!!!!

    "Let me know what you think? We compose a letter to the CDC asking them what they are doing in regards to the recently discovered retrovirus , the millions of people who may be suffering worldwide from it's involvement, and the potentially dangerous situation it may cause to our blood supply! etc. etc. Then once a day, everyday indefinately we each e-mail this and also forward cy to a major news network, possibly the same one?"
     
  19. muffin

    muffin Senior Member

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    In addition to the CDC..

    I have also spent a fair amount of time emailing info to the major news media. Has it had any effect at all? Who knows. But I want to spread the word just in case they have a "no news day" and need filler. Plus, WHEN the CDC Replication study comes out these people will have some background info to write up a decent article on. I do cite Osler's Web (www.oslersweb.com) since Johnson does the best job of giving the whole sordid CDC/CFS story in her WHY speech in London. I direct them ALL, even Frieden, to that WHY speech. They ALL need that sordid 30 years of CDC background and the games and waste of money and lives in order to really tell the whole CFIDS story.
     
  20. citybug

    citybug Senior Member

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    I emailed too.
     

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