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CDC lost the rest of its Credibility with the American public - GONE!

Discussion in 'General ME/CFS News' started by muffin, Jun 25, 2010.

  1. muffin

    muffin Senior Member

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    The last nail in the coffin of the CDC is the XMRV replication by NIH and FDA. It's about time for the CDC to be downsized by half and funding cut dramatically. What has the CDC done for any of us???
    They hyped Swine Flu and have been doing research on it since the 1970's. On 18 June 2010, they stopped updating the data on Swine Flu on the CDC Swine Flu site and it is now archived. The Swine Flu numbers were so low that it was just to glaring for the CDC to keep updating and tracking the so-called H1N1 sick/deaths. And now we have the XMRV studies that slam the CDC right in the face.

    Time for Congress to hack away at the CDC, reduce its staff and cut its budget. Billions have been wasted by the CDC and what have they done for us??? Anyone????

    Write your Congress people and ask for a full investigation into the CDC as a whole. And yes, make sure that the CDC/CFS program is in that email as well as the XMRV debacle. Time to clean out the CDC and stop it from wasting huge amounts of tax payer dollars.
     
  2. Stone

    Stone Senior Member

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    What if we tried to get the whole story of what the CDC has done to us into the press? It's a big story. I think if we could get a major news media entity on the thing it would be great in lots of ways.
     
  3. Elliot

    Elliot

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    How does the swine flu thing show the CDC negatively? The idea of the CDC is to prevent pandemics/epidemics from even occuring, which was why they hyped it up to be extra safe and to make people be more conscious of sneezing and such? I'm from the UK though so maybe I've missed something about them.
     
  4. Dainty

    Dainty Senior Member

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    As I understand it, swine flu actually wasn't any more deadly than other flus. The only thing that was really unusual was that it was killing mostly children, whereas most flus kill mostly the elderly. So yes, it was an unusual flu, and for that reason there was concern that it would mutate (as all flu viruses do) and become more deadly. The CDC overreacted, which caused everyone else to overreact into near panic. Afterwards a lot of people are frustrated with how the situation was blown out of proportion and the general populace tend to be determined to not let that happen to them again. So say we do actually have a serious flu pandemic (and there will be, we're overdue for one) and now the vast majority of people have trained themselves to take the CDC's paniced declarations of how bad things are with a grain of salt. That ultimately results in a cavilier attitude, not better safety. In essence, the CDC cried wolf, and each time they do that the public becomes less and less believing.

    However, I don't believe the CDC is all that bad. Yes, they've been terrible about this whole CFS thing, but then again, their main concern is public health. A group of people complaining about symptoms shared by many other illnesses is understandably not seen as a public health risk or as something to pay attention to. Hopefully XMRV will change that.

    I disagree with a lot of what the CDC says/does, for example, vaccines and hyping illnesses (did you know that in polio about 95% of the people who got it never even had symptoms? And most of the remaining percentage never became paralysed?) but I have to say, having lived in a third world country for several years, I'm thankful we have them. They're flawed, they share many of the same problems as the government does (since they're government run that isn't surprising) and there's no doubt they have vested interests. But when it comes to taking care of public health risk diseases, they're the right ones for the job, they're capable, and I'm glad they're there.

    Once they find XMRV, they'll do the right thing.
     
  5. jspotila

    jspotila Senior Member

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    H1N1 had some frightening characteristics very similar to the 1918 flu pandemic: it was killing healthy young adults (unlike regular flu); it flared last spring, went away, and returned in the fall; it was similar in terms of viral characteristics to the 1918 flu. H1N1 was also spreading very rapidly around the world, not just here, and it was the WHO that was taking steps on an international level (such as declaring it pandemic, I think).

    None of this has anything to do with the CFS program, but it seems to me politically very unlikely that - in the age of bioterrorism, SARS, swine/avian flu - that anyone on the Hill would want to dismantle CDC.
     
  6. Sing

    Sing Senior Member

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    I feel that putting a focus on punishment for what was mishandled in the past--and I realized that there have been costly mistakes--is a less effective strategy than trying to support the forward action. There are a lot of scientific advances now for ME/CFS and will be. We need to be promoting it in the media and in the minds of those who are ignorant of this information, whether innocently ignorant, or willfully so.
     
  7. Dainty

    Dainty Senior Member

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    Well said. I agree.
     
  8. camas

    camas Senior Member

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    If this article is to be believed, the new director of the CDC seems to be making some needed changes.
     
  9. Sing

    Sing Senior Member

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    Wow, what an inspiring article--on the new Director! Thank you, camas. A new broom, indeed--Well, there is a window of opportunity now for us, I'd say.
     
  10. Carrigon

    Carrigon Senior Member

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    I had the Swine Flu, it's nothing to take lightly when you have a compromised immune system. It took from October all the way through May for my sinuses to clear. It took from October through February for my lungs to clear. And because I barfed for a month and a half straight, it did some kind of permanent damage with my acid reflux and it's worse now than it's ever been and I have problems with mucus from it now that will not clear up without a strong ppi that I can't even take.

    What I will say about the CDC is that when I got sick in 91, my mother called them. They told her that it was a virus. That CFIDS was a virus and that it was more debilitating than AIDS. I was right there when they told her. What I want to know is, have they been covering up XMRV for more than twenty five years, and have they let us all be typhoid marys of a prostate cancer virus? That's what I want to know.
     
  11. muffin

    muffin Senior Member

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    My question to those who say they had Swine Flu is?

    WERE YOU TESTED FOR H1N1 or did your doctor just assume you had Swine Flu as the CDC told doctors and hospitals to do and to stop testing as of 31 August 2009.

    Were you tested for Swine flu????

    Now why would the CDC tell doctors and hospitals to STOP testing for Swine Flu and instead, just ASSUME it was Swine Flu and treat accordingly? Because the CDC did NOT want the public to know the real numbers of sick and dead from this faked/hyped Swine Flu. They played this game with CFIDS for 30 years as well. Don't keep track of real numbers of sick because the public will really see what the true situation is. If the public had known the true numbers of CFIDS sick all these years, there would have been hysteria, action, and a probe into the CDC and the CDC does NOT want anyone messing into their business. No, I don't trust a single thing that comes out of the CDC and apparently much of the public stopped listening to the CDC as well. Crying wolf so many times will prove to be most deadly when finally there is a real viral epidemic. Oh, and when the XMRV virus that is already known to cause cancer is OUT and the figures and realities of this virus are known to the public, here and worldwide.
     
  12. muffin

    muffin Senior Member

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    The pandemic that never was: Drug firms 'encouraged world health body to exaggerate

    The pandemic that never was: Drug firms 'encouraged world health body to exaggerate swine flu threat'

    By Fiona Macrae http://www.dailymail.co.uk/news/art...-health-body-exaggerate-swine-flu-threat.html

    Last updated at 11:49 PM on 4th June 2010

    Widespread warnings were issued about the swine flu 'pandemic'
    Declaring a swine flu pandemic was a 'monumental error', driven by profit-hungry drug companies spreading fear, an influential report has concluded.

    It led to huge amounts of taxpayers' money being wasted in stockpiling vaccines, it added.
    Paul Flynn, the Labour MP charged with investigating the handling of the swine flu outbreak for the Council of Europe, described it as 'a pandemic that never really was'.

    The report accuses the World Health Organisation of grave shortcomings in the transparency of the process that led to its warning last year.

    The MP said that the world relied on the WHO, but after 'crying wolf', its reputation was in jeopardy.
    The report questions whether the pandemic was driven by drug companies seeking a profit. Mr Flynn said predictions of a 'plague' that would wipe out up to 7.5million people proved to be 'an exaggeration', with fewer than 20,000 deaths worldwide.
    Britain braced itself for up to 65,000 deaths and signed vaccine contracts worth 540million.


    The actual number of deaths was fewer than 500 and the country is now desperately trying to unpick the contracts and unload millions of unused jabs.
    The focus on swine flu also led to other health services suffering and widespread public fear.
    Pharmaceutical companies, however, profited to the tune of 4.6billion from the sale of vaccines alone.
    Mr Flynn said: 'There is not much doubt that this was an exaggeration on stilts. They vastly over-stated the danger on bad science and the national governments were in a position where they had to take action.
    'In Britain, we have spent at least 1billion on preparations, to the detriment of other parts of the health system. This is a monumental failure on the WHO's part.'

    The Council of Europe inquiry heard allegations that the WHO had downgraded its definition for declaring a pandemic last spring - just weeks before announcing there was a worldwide outbreak.
    Critics said the decision to remove any need to consider the deadliness of the disease was driven by drug companies desperate to recoup the billions of pounds they had invested in developing pandemic vaccines after the bird flu scares.

    But the WHO said its basic definition of a pandemic never changed.
    Mr Flynn said: 'It doesn't make any sense as to why they should have changed the definition a month before declaring an outbreak.

    'In this case, it might not just be a conspiracy theory, it might be a very profitable conspiracy.'
    A Daily Mail investigation earlier this year revealed more than half of the swine flu taskforce advising the Government on its strategy had ties to drug companies.
    Eleven of the 20 members of the Scientific Advisory Group for Emergencies had done work for the pharmaceutical industry or are linked to it through their universities.
    Concerns about drug companies' influence are also highlighted by a separate investigation by the British Medical Journal and the London-based Bureau of Investigative Journalism.

    It found that key scientists behind the WHO's advice on stockpiling pandemic flu pills such as Tamiflu had financial ties with the drug companies that stood to profit. The WHO last night firmly rejected all the criticism. Spokesman Gregory Hartl said: 'There is no question of this being a fake pandemic. If fits the criteria for a pandemic, which is a new virus to which human beings have little or no immunity and which has spread around the world.

    'It spread from zero to 74 countries in the space of 9 weeks - that's a pandemic.'
    He said that not all ties to drug companies were necessarily conflicts of interest.
     
  13. muffin

    muffin Senior Member

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    United States still has 71 million doses of H1N1 swine flu vaccine not used

    http://www.reuters.com/article/idUSTRE6425HW20100504

    --->>>The American public figured out this was a hyped Flu and quickly realized NOT to bother with a potentially damaging/deadly vaccine. So, the US now has 71 Million doses of unused H1N1 Swine Flu Vaccine. I would say that the American public no longer trusts the CDC and anything that comes out of the CDC. Let's remember all the other "deadly" viruses that weren't. But of course, the CDC hyped them all too. And NOTHING happened. Yet we have had a true epidemic for 30 years with CFIDS and the possibly TWO Retroviruses (DeFreitas and WPI Retrovirus) that research and funding were killed off on.<-------

    WASHINGTON (Reuters) - The United States still has 71 million doses of H1N1 swine flu vaccine that have not been used, but it is not yet time to throw them out, the federal government said on Monday.

    States and other providers should hang on to the vaccine and continue to offer them to people until drug companies can start distributing seasonal vaccine for the coming influenza season in the autumn, said Health and Human Services Department spokesman Bill Hall.
    Senator Chuck Grassley, the ranking Republican on the Senate Finance committee, released a letter on Monday that he sent to HHS secretary Kathleen Sebelius asking her how much vaccine was left over and when it would expire.

    H1N1 swine flu is still technically causing a pandemic and health officials say anyone who has not been vaccinated should still try, in case it causes a third wave of serious disease.
    Health experts consider swine flu likely to join the mix of seasonal flu viruses and it will be included in the seasonal flu vaccine for 2010-2011, which will also contain two other flu strains.
    When the H1N1 virus started spreading in April, HHS and its agencies, along with commercial flu vaccine makers, rushed to formulate and make a vaccine.
    Influenza vaccines are made using old and unwieldy methods that require incubating the virus in chicken eggs, and the process always takes months.
    Vaccine started rolling out in October and the U.S. eventually ordered 229 million doses from its five licensed makers -- Novartis, AstraZeneca unit MedImmune, Sanofi Aventis, GlaxoSmithKline and Australian vaccine maker CSL.

    Sebelius said last month that 162 million doses were produced and distributed, but only 90 million actually got into people's arms or noses.
    VARYING SHELF LIFE
    "Depending on the vaccine manufacturer, the shelf life of the H1N1 vaccines range from 18 weeks to 18 months, with some due to expire on June 30, 2010," Grassley wrote in his letter to Sebelius.
    "I understand that it is not uncommon for some seasonal flu vaccines to be discarded each year, but the H1N1 vaccines were paid for with taxpayer dollars," he added, asking: "How many doses of vaccine are due to expire on June 30, 2010?"

    Hall said the department would respond to Grassley.
    "There are approximately 71 million doses, held by states, the distributor or the manufacturers, that remain unused, and have varying expiration dates, some as long as early 2011," Hall said by e-mail.
    "We have asked states to hold on to any vaccine that has not expired, in case we continue to have regional upticks in disease, another wave, or another early start to the flu season. We are holding onto that vaccine (and advising states and vaccinators to hold onto theirs) until there is sufficient seasonal vaccine (which includes coverage for the 2009 H1N1 virus) to replace it."
    The U.S. Centers for Disease Control and Prevention estimates that H1N1 has killed at least 12,000 Americans and put more than 265,000 in hospital. People with chronic diseases such as asthma or diabetes, pregnant women and children were at highest risk.
    Grassley also asked Sebelius whether HHS would try to increase distribution of seasonal flu vaccines.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I agree with some of this, but I am not so sure of the last statement.

    A group of people complaining about symptoms that are shared by other illnesses and which involves a variety of systems and which symptoms are also associated with some psychological conditions, mostly happens in women in their 40s, with varying symptoms,and for which no known striking abnormalities are presented in objective tests is certainly a problem.

    The conclusion from the beginning is the severe were likely misdiagnosed and actually have something else, and the mild have just hoodwinked alarmist doctors into believing their condition is not psychological, imagined, exaggerated or psychosomatic. Once that conclusion was made, it was going to take a big ugly bug under the microscope to change that conclusion.

    CDC is not alone, many think science is about proof through evidence. Actually, much of science is belief based on evidence. Some things can't be proved, so there is a preponderance of the evidence that leads to a consensus, which is then considered to be truth, and any who diverge are wacko.

    The problem I have with the CDC is that they never really talked to the patients at length in their investigation. As Hillary pointed out beautifully, talking and listening to the patients used to be considered important part of the evidence. Once microscopes and blood sampling was discovered, especially for researchers, that model was replaced. A key part of the evidence in this illness was hearing the patients recount their story, step by step. Hillary pointed out a few doctors who had preconcieved notions whose thoughts changed after they saw, patient after patient after patient. Any doctor, or researcher, who takes a little time to hear patient after patient after patient will see a pattern emerge. It isn't perfectly matchy - matchy in each patient, but you can see the pattern. I notice it with patients. As someone said, patients themselves can notice when someone has something else or is faking it.

    Another problem with the CDC is that they formed their conclusions and would not consider new evidence as it emerged from Incline Village. As Peterson and Cheney started noticing abnormal MRIs etc, they did not put these features together. Again, it was going to take a big bad bug under the microscope to change them then, everything else was considered just within the range of normal or likely another illness. The failure is that any new piece of evidence was taken and analyzed on its own and not put together with the other evidence to see a new picture. It was just seen as, "that can't explain it all and it doesn't show up in all." Each piece seen individually is true, but put together all the pieces present a different picture. CDC in their tunnel vision, could not see the big picture.

    And they also did not see the big picture of other or previous outbreaks of similar illnesses. The Key West thing, the Lyndonville thing, the ME in the UK put with Incline Village paints a different picture than just looking at Incline Village alone. They failed to take the investigation to that level. They failed again to see the bigger picture and what evidence could be discerned by these other outbreaks of an illness that represents with similar symptoms.

    And of course, then we had misspending of funds, normal overall government beaurocracy where it takes $4 million to accomplish something the private sector could do in half the time at half the cost (just the nature of government) and then you have that government funding is scant. The CDC is partly to blame for this. They did not see it as an overall public health threat (no big bad bug under the microscope) so why put it up high on the priority list for funding.

    The fact that CDC included studying childhood trauma as part of their investigation in recent years shows where their beliefs were. I am not saying that might not be useful, if for no other reason than to eliminate that as an issue, but the evidence from other researchers seems to have been put on the "not credible" side while the CDC went forward to prove what they believed.

    I have noticed a pattern in CDC though. They seem to be very good at detecting, investigating outbreaks of KNOWN infectious agents. But do we know of any new pathogen that the CDC discovered? HTLV, done in private labs; HIV, done in private labs; that bacteria that causes ulcers, done in private labs. So, in that, we are not alone. It is evidently a systemic problem. If anyone knows of one they "discovered" please post it here.

    And, I have also been thinking, I think we could make a strong case for gross lack of funding that is entirely inappropriate to the public health threat that was evident in the late 80s and 90s, based on the big picture. But, there are illnesses that cause severe suffering that deserve attention too. From a human suffering level, total number of people in that severe state, there may be some other illnesses worse than us.

    Huntington's disease. One of the cruelist diseases there are. I have a high school classmate, salutatorian, who is institutionalized, has been since his mid 30s. It is horrible.
    ALS. How awful is that.
    I have a friend, a woman, only 44 years old who is bedbound from a stroke.
    Some cases of MS
    Lupus. My employer's mother has lupus and is in and out of hospital. Some cases are severe and the body actually attacks internal organs. It often leads to death.

    Well, you get the idea. We have some of us that are suffering terribly, seizures daily, etc. But number of our severe cases to number of other illnesses that cause similar suffering, well, we are not alone. They have known of these other illnesses and can pinpoint much more about the epidemiology of these other illnesses, yet, is there a cure? How many breakthroughs have their been in these illnesses in the last 10 years?

    The difference with CFS is the outbreaks and the number involved. This is why it is more of a public health threat than the other illnesses, which are lower in numbers and seemingly not infectious. The CDC deals with the overall public health threats more than which illness causes more suffering.

    Sad, but true.

    If they had taken off their blinders, they could have seen that CFS posed a real public health threat to the public at large. Sometimes a person will only see what they want to see.

    Considering this case, I don't think we can trust the CDC to "do the right thing." They have just as much of an interest in covering their own failings to save themselves in this situation as they do protecting the public. They are part of the problem, so it would take some real balls to stand in front of the camera and admit that. Is it possible there is a real man of integrity there? One who is willing to put the public health above their own reputation and the reputation of their institution? We will see. I have had close dealings with people in government for years, the instinct is to protect oneself from accountability from the public's outrage. Cover up is considered safer. Ironically, it almost always makes things worse.

    Does anyone remember Bill Clinton? "I did not have sexual relations with that woman." He lied (or did not tell the whole truth) under oath and did the same looking straight at the camera at the public who had their trust in him. What would have happened if he had fessed up. It would have been a scandal for a month. Instead, his cover up led to more and more sins and an impeachment, and further disgrace.

    Perfect example is King David in the Bible.

    It is so difficult to say, "I (we) made a mistake. We are sorry. We will do better. Please forgive me." But failing to do that, you just give more tools to your enemies to use to kill you.

    Tina
     
  15. Carrigon

    Carrigon Senior Member

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    Yeah, tested for Swine Flu at the hospital. Most of my town had Swine Flu and it took a long time for alot of people to get better from it. I don't think there were alot of deaths, but alot of people were very sick for a long time.
     
  16. muffin

    muffin Senior Member

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    Thanks Carrigon for that response. Curious. I wonder if the rest of the folks were tested as well. Sorry you went through all that.
     
  17. boomer

    boomer Senior Member

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    I was just thinking to myself, how it would have played out if instead of the announcement to pledge $7 billion to women in poor countries for maternity and their babies (including billions from Bill Gates) was made the week after the big announcement about xmrv. There would have been people screaming that they never got money for cfs or xmrv research. Then a couple of days later, Bill Gates and the G8 announce funding of $9 billion to women of Africa. It would have been more difficult to make those pledges. The Canadian Government is very good about the timing of its communication announcements.
     
  18. CBS

    CBS Senior Member

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    Cross post - Switzer, XMRV and Prostate Cancer - underwhelming - CROI -2010

    This posted in the FDA/NIH XMRV thread as well;

    Here is W. Switzer's paper from CROI 2010. All he could find was "evidence of sequestered or cleared infections" in 2 of 165 prostate cancer tissue samples. In conclusion, he doesn't question his methodology, he questions the "prevalence and significance of XMRV in prostate cancer or other diseases." Switzer's prostate cancer paper was presented months after the Science paper.

    http://www.retroconference.org/2010/Abstracts/37160.htm

    Paper # 149
    Prevalence of Xenotropic Murine Leukemia Virus in Prostate Cancer
    William Switzer*, H Jia, H Q Zheng, S Tang, and W Heneine
    CDC, Atlanta, GA, US
    Background: Recently, a xenotropic murine leukemia-related virus (XMRV) was identified by virus-generic microarray and polymerase chain reaction testing in 40% of prostate cancer tissues with the homozygous R462Q (QQ) variant of the antiviral RNase L enzyme. Two subsequent studies confirmed XMRV sequences in prostate cancers at a lower polymerase chain reaction prevalence (1.5% and 6%) independent of R462Q polymorphism. One of the studies also reported higher detection of XMRV proteins by immunohistochemistry in 23% of cancers. To further evaluate the prevalence of XMRV in prostate cancer and better define markers of infection, we developed new molecular and serologic assays and used them to screen tissue and plasma specimens from patients with prostate cancer.
    Methods: We developed both a xenotropic murine leukemia virus-based Western blot assay for antibody detection, and new gag, polymerase (pol), and envelope (env) polymerase chain reaction assays for sequence detection. To detect contamination with mouse DNA, we also designed a mouse-specific mitochondrial DNA (mtDNA) polymerase chain reaction test. Following assay validation, prostate tissue (n = 162) and matching plasma (n = 120) from anonymous US prostate cancer patients were tested. Phylogenetic analysis by neighbor-joining methods was used to infer evolutionary relationships. RNase L R462Q polymorphism in all patients was determined using a commercial test.
    Results: Of 165 prostate tissues, 2 (1.2%) were positive by pol and env polymerase chain reaction and had undetectable mouse mtDNA. Phylogenetic analysis showed distinct sequences that clustered with other XMRV. Plasma from both persons (5956 and 6203) were negative by reverse transcriptase-polymerase chain reaction indicating absence of viremia. Both patients were Western blot-negative. Plasma from 118 additional polymerase chain reaction-negative patients tested Western blot negative. Of the patients, 45.1% were R462Q RR homozygotes, 45.6% RQ, and 9.3 % QQ. Person 5956 was RR homozygous; patient 6203 was heterozygous (RQ). Both had intermediate-grade tumors based on Gleason scoring.
    Conclusions: Our results demonstrate a low prevalence of XMRV sequences in prostate cancer patients that is not likely associated with R462Q RNase L genotype. Infection with XMRV is confirmed by phylogenetic analysis and absence of contaminating mouse DNA. The finding of undetectable antibodies and viremia in 2 patients is noteworthy and may reflect sequestered or cleared infections. More studies are needed to better understand the prevalence and significance of XMRV in prostate cancer or other diseases.

    "Hey Guys, I have an idea. Let's put the guy who couldn't find XMRV in prostate cancer patients in charge of the CFS study." I can't help but wonder if this brought a few chuckles amongst the same staff that posted the infamous "Dear Sirs, I'm Sick...." letter (posted on Osler's Web at http://www.oslersweb.com/files/dear_sirs_I_am_sick0001.pdf).
     
  19. judderwocky

    judderwocky Senior Member

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    If you're angry with the CDC.... sign the petition i made :)

    sorry if you already saw me pluggin it... just trying to get it out to people. :)
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    My husband had the flu in October. Right afterward, I had it. I considered it a sign that my immune system was much better. For five years before that, I had not had any flus or colds.

    As flus go, it wasn't the worse I had ever had. Kind of mild, actually. And, for many, news reports said it was not real bad. The way you can tell is that it wasn't killing the older and infants, way usually does. But, it seemed to kill younger in some sort of fluke. This is why it got so much attention. Not that more were dying, just a different group.

    Of course, other conditions would certainl affect the severity.

    I assumed I had H1N1 because of the timing and catching it right after my husband had it. Bad part is that I ended up going into a full fledged relapse after that flu, after having made improvements for three years.

    Tina
     

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