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CDC Contempt for ME Sufferers: the "Dear Sirs, I am SICK" joke letter

Discussion in 'Action Alerts and Advocacy' started by justinreilly, May 8, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    As the CFSAC meeting is coming up on May 10, let's remind ourselves of the historical attitude of CDC toward us.

    This link is to a joke letter written by CDC staff about ME sufferers which was posted on a bulletin board at the Viral Exanthems Branch for a year and a half:

    http://oslersweb.com/files/dear_sirs_I_am_sick0001.pdf

    The letter contains gems such as:
    Here is background by Hillary Johnson about the letter:
    http://oslersweb.com/files/dear_sirs_I_am_sick0001.pdf
     
  2. Koan

    Koan Be the change.

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    I am sickened.
     
  3. starryeyes

    starryeyes Senior Member

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    Good job bringing this up right before the CFSAC, Justin. Osler's Web is such an amazing read but many here are too ill to read books let alone a big, heavy one that needs an accompanying dictionary in order to understand it.

    I recall in Osler's Web, Hillary said that people with CFS were encouraged at one point to write in to the CDC and she witnessed a hallway filled with letters from PWC. My guess is that this joke letter is a satire of how the CDC felt about what was in some of the letters they had read.

    It's very important that we learn our history, investigate our history, remember our history and teach our history to others.

    I wish this was just history. Unfortunately, nothing has changed.
     
  4. Kati

    Kati Patient in training

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    I have mentioned before that we could as a group or individual request information under the Freedom of Information Act. Perhaps we could request what has been done to the perpetrators, if anything at all.

    It would also be VERY relevant to request formal and public apologies.

    I would also be curious to see documentation from the initial visit of Holmes and his buddy's ski trip errr investigation of the Incline Village epidemics.
     
  5. jimbob

    jimbob ME/CFS84-XMRV+

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    I thought the you tube guy had me worried about the state of mankind, but this letter takes the cake! maybe we can write similar ones about them when we finally get the recognition we so very much deserve.
     
  6. starryeyes

    starryeyes Senior Member

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    I like your idea Kati. I just don't know how to go about it.
     
  7. dsdmom

    dsdmom Senior Member

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    I get so angry reading things like that. I truly just hope that the truth comes out some day and these people are put to shame. It is disgusting that people who are ill are treated this way.

    Or, maybe better, I wish these people get ME/CFS themselves. Oh wait, that's too evil of me...
     
  8. Stone

    Stone Senior Member

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    It's understandable to feel like that sometimes. Here's my evil thought: I would like to challenge every doctor, scientist and researcher who thinks CFS is psychological to put their money where there mouth is and sign an agreement to allow themselves to be transfused with blood donated by a known CFS patient in the event they ever need a transfusion. I wonder if any of them would do it? (NOT THAT THIS SHOULD EVER HAPPEN UNDER ANY CIRCUMSTANCES, OF COURSE!!!) I'm just wondering how many of them would sign the thing and carry a card in their wallet stating so. I'll post an ad inviting them to do so in the next issue of the International Journal of Medical Evil to which I'm sure many of them subscribe.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Straus: "Goddamn Patients"

    Yes,

    CDC was receiving overwhelming numbers of letters often containing desperate pleas for help and detailing the severe symptoms, a disproportionately large number from doctors and nurses. I seem to remember it was for a lengthy period the condition receiving the most requests for information, eventually surpassing AIDS. This was at a time when CDC was claiming there studies showed there were about 10,000 pwME in the US (now they claim 4-10 Million).

    They're obviously expressing their contempt and frustration that so many thousands of us psychotics (Haldol is used to treat schizophrenia and Thorazine for amphetamine psychosis) are writing in to alert them of cluster outbreaks and requesting information about a non-existent illness.

    This wasn't some renegade who posted this and it was "ha, ha" and taken down the next day. This was posted on the community bulletin board for one and a half years and only reluctantly taken down by Schoenburger after Walter Gunn pleaded with him that it would cause bad publicity now that a reporter was aware of it.

    You're right, too bad this isn't history; they've just gotten more savvy about not openly declaring we're crazy while still persecuting us. As Stephen Straus, the researcher in charge of NIH's 'cfs' 'program' for many years, would say to himself over and over at a medical conference when Komaroff's Tahoe study paper was presented "goddamn [ME] patients". (according to Byron Hyde, MD; Osler's Web p.321).
     
  10. Athene

    Athene Never give up

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    How do we know this letter is specifically mocking people with ME/CFS?
    I didn't see those illnesses mentioned in the letter.
     
  11. shiso

    shiso Senior Member

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    I never had a clue about how downright arrogant so-called medical elite were about how much they think they know until I got this god awful disease. To think this was written so many years ago, and that the CDC hasn't changed its attitude to this day...
     
  12. Stone

    Stone Senior Member

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    But I still don't understand why. What's the payoff for the CDC to sweep this under the rug? I would think some young upstart there would want to make a name for himself and figure this damn thing out. The answer to these questions us usually "money", but can anybody explain who gains anything monitarily (or otherwise) by not 'solving CFS'?
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    "CEBV" was the name in the US at the time for ME

    "I'm so tired..."

    "...it took me 6 days to dictate this letter to my secretary." and "physicians (the more expensive the better)" refer to "Yuppie Flu" and are in line with NIH's Straus' comments to an audience of physicians that 'we apparently have to help them get behind the wheel of their BMW's.'

    "Haldol... and Thorazine [anti-psychotics] only work when I take them" are a reference to CDC's position that ME was simply mass hysteria.

    "trendiness": people were supposedly claiming to have ME because it was trendy.

    "I.M. Zappode... Wornout, CA"

    I'm pretty sure the Viral Exanthems/CVD Branch has only ever handled a small handful of illnesses (ME and HPV/ cervical cancer are the ones of which I know), and none of the others were held in contempt.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As bad as this letter is, my major problem is the misunderstanding that is behind it and the sexism and arrogance behind it.

    I am also shocked at the fairly public display of it. I mean, it is one thing to pass it around in the cubicles (pre-widespread use of Internet), but to have on bulletin boards is brazen. It seems to reflect an assumption and same opinion of those in CDC. (I am sure a few individuals felt differently at CDC, just quietly so, and obviously not those in power to have influence over CDC research into the disease.)

    Making fun of patients you think have a psychological problem is likely not uncommon. I mean, comedians sometimes make fun of sick people, such as "retarded" people.

    I have had close contact behind the front doors with detectives. You should hear what they say of victims and suspects. It doesn't mean they don't care, it just means they have to deal with challenging situation and coping includes humor. You can't be serious every minute of every day you work in a difficult job.

    Heck, we make jokes here about some who believe it is psychological. Some of these jokes border on calling him the devil. Of course, this is from a patient group which is using humor to cope with a difficult situation.

    And I am a news reporter. The things said in editorial meetings, including jokes about those in the news, are best kept in the editorial meetings.

    I know, CDC didn't have difficult situation. But the flood of people contacting them about the illness likely did cause a difficult work situation. So the erroneous thought is the problem behind this letter. And that error is based on sexism and arrogance and of course, the invisible nature of our symptoms.

    If only our pee was blue.

    On another note, some have commented here about the difficulty in getting patients to show up for advocacy efforts. We thought this might be because of the difficulties people have because of symptoms.

    But some posts on this thread brings up another issue. Notice how patients put forth a lot of effort in trying to get help from CDC. Makes me think of the multiple doctors I went to, contacting insurance company trying to find a knowledgeable doctor, then haggling with the insurance company on claims (I couldn't even do this. My mother had to do this for me. But she told me of the hours she spent trying to get the claims straight with them.) I remember trying to learn about all the supplements I needed to take. And the trips I have to make to the doctor, in addition to trying to keep up my work and do some household duties. I also remember having to take medicine or supplements when I wake up, when I eat breakfast, between meals three times a day, one right before the meal, another right after, some with supper and some when I went to bed. It took me an hour to fill up my little pill container.

    I think the problem with patient activity in advocacy efforts is not just the symptoms and lack of money, it is the extra load we have to deal with. It's like having a car starting to have trouble right as they lay you off at work. That is not the time to start remodeling the house.

    Tina
     
  15. Robyn

    Robyn *****

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    Let's just say the letter would be grounds for disiplinary action now days. It would not be tolerated today at least not in local government. There are very strict rules we have to follow in how clients are treated now and that is with dignity and respect and not violating any civil rights.. Who did they think they were to pass judgement on sick people? How disgusting is that, oh I don't understand what's wrong with these people so they must be nuts. So instead of doing their job which was to figure out what was going on and help us, let's just make fun of the situation? It would be like the people that call in to me asking for help because their kids are hungry. Would I post something on the bulletin board laughing at them at their misfortune and and joking about the fact they need help. Or say something like they are bringing it on themselves? That would be grounds for dismissal. They should have been fired on the spot. But it was a different time then. That is why we need to demand that we are heard now. It is our right they now have to listen. We just need to figure out the best course of action.
     
  16. Forbin

    Forbin Forbin

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    Thank you, justinreilly, for citing that footnote at the bottom of Page 321 in Osler's Web. I've been looking for that reference for a while but I did not want to re-read the whole book to find it. There is a lot more to it than the use of the phrase "goddamn patients."

    Dr. Byron Hyde's account of Stephen Straus' bizarre reaction to Gary Holmes' 1987 presentation at the CDC (a presentation which, apparently, cast doubt on Straus' 1985 paper that had suggested EBV as the cause of the disease) is one of the most disturbing accounts in all of Osler's Web - which is saying something.

    One could certainly be forgiven for thinking that this was the turning point that influenced how the government (led by Straus) would persue the disease for years to come. It's amazing that it only shows up in a footnote.

    Forbin
     
  17. Robyn

    Robyn *****

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    There are a few good reason's I can think of. No disability payouts, keeping money in the area of psychiatry and medication. They don't want to get off their rearends and actually do some work to figure this out. This condition afflcts a large majority of women which is easier, as history reflects to blame on hysteria. Take a look at ovarian cancer. It is one of the deadliest cancer's for women yet there is still no test to find it in early stages. And it's a horrible death. Funding for women's health issues have always come in dead last.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Now you can search books on amazon for text by clicking on the image of the book cover (if it says 'look inside' above the image). To find this I searched for "Straus goddamn patients".
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Why would they keep looking to find the cause when they found it? It is hysteria, neurosis. I mean, like detectives, once they get a little bit of evidence, they form a conclusion. Then, they will make all other evidence they get fit their conclusion. Does the Ramsey name ring a bell?

    In this case, CDC took a little bit of evidence, put forth token effort, and formed a conclusion. Once conclusion was formed, answer found in their view, why keep looking?

    This is why they don't allow jurors to discuss the trial until they hear all the evidence. The discussion may make them close their minds to the evidence that comes later in the case.

    Tina
     
  20. Gerwyn

    Gerwyn Guest

    I also think that the past history of our treatment by the CDC means we cant trust any of their work now or the work of any organisation connected to them in any way
     

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