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ME/CFS and Beating the Clock
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Am I invisible ?

Discussion in 'General ME/CFS News' started by SaveMe, Mar 8, 2011.

  1. SaveMe

    SaveMe *****

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    For some reason, no one can respond to my posts. (disabled feature?)
    testing 1,2,3


    Sacrifice the few to Save the many?

    That is exactly how I feel right now--Im pissed. You all are entitled to your own opinions and biases, but no one can tell me that I didn't suffer from an adverse reaction from a vaccine.
    That adverse reaction is CFS-ME my friends. This illness (as with FM) affects females to males at a ratio 9:1.

    I am a young male--now I suffer from an illness that mostly affects elderly women. I am an anomaly.
     
  2. shannah

    shannah Senior Member

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    Peek-A-Boo - I see you!
     
  3. Orla

    Orla Senior Member

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    It says here that this is your first post. Perhaps the others never got posted properly?

    Edit: OOPS my mistake. The number I was looking at was just saying yours was the first post in this thread not your first post alltogether. Oops. :Retro redface:
     
  4. SaveMe

    SaveMe *****

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    Interesting Orla,
    I sure hope they get posted because I left some very intuitive comments and suggestions for people within the CFS community.
     
  5. SaveMe

    SaveMe *****

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    Thanks Shannah,
    I feel relieved now. Do you see any other postings by me?
     
  6. SaveMe

    SaveMe *****

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    Don't believe the stats put out by the CDC? Dont believe the very institution that has a 5 year initiative to solve cfs? Dont believe the very institution that is investing $5 million dollars on ME-CFS?
     
  7. SaveMe

    SaveMe *****

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    and when the CDC discovers the cause and cure, then you will be running to them. To answer your question, I have been tested for EBV and HHV-6 and Ig-e, as well as all of the standard CDC, thyroid, liver, kidney panels, sleep study, mri(s), lyme. May I ask what have you been tested for ? thanks
     
  8. SaveMe

    SaveMe *****

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    I said that to illustrate my point. You have little faith (if any?) in the CDC, and I responded by saying that when they find answers you would put that behind you and seek their help. Just look at this please Centers for Disease Control and Prevention CFS Public Health Research Program 5-year Strategic Plan
    (October 2009)http://www.cdc.gov/cfs/programs/cdc_research/2009_5yr_research_plan.html

    I dont want to argue with you, but saying that the CDC is lying about statistics is just misleading. They have been conducting a survallance survey over the years to store in their database on the CFS population, and from that data I quote " Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59."

    I will not change my post--- please do the research as I have done, girl.
     
  9. SaveMe

    SaveMe *****

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    Have you had any success with anything? I'm very hopeful about Xyrem and LDN. Im 20 and you ?
     
  10. taniaaust1

    taniaaust1 Senior Member

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    I personally think those statistics are probably screwed. Look about this site.... many probably most of us got CFS/ME when far younger.
    In real life I know 4 who got CFS/ME. One was a teen, two were in their 20s... the third was in 20s or very early 30s. None in age group in which CDC says it occurs most often.

    The CDC has got many of their statistics by doing big random "phone survey" study eg the Georgia one, in which many they diagnosed people with having CFS over the phone which hadnt even gone to their doctors about it. (Those so called CFS people couldnt have been that concerned or debiliated if they havent even bothered going to a doctor over their "tiredness").

    The CDC also uses a CFS definition in which many who dont have CFS/ME but rather other illnesses eg chronic depression, end up being diagnosed with CFS. Definations which mistake other illnesses for CFS, phone diagnoses..... I truely wouldnt trust any statistics coming out from the CDC. The CDC has always been biased with what info it gets out there about CFS.... if you research the history around CDC and this illness, you will see that.
     
  11. SaveMe

    SaveMe *****

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    taniaaust,
    I appreciate your comment, but I see you live in Australia, so you might have baises about our govt. that are outside of the realm of CFS-ME. I understand. However, this agency is doing more than http://www.mecfs.org.au/

    In addition, people with depression dont have abnormalities in immune response--cytokines, nk cells. Im sure the CDC caught onto this by now. They have an entire dept dedicated for ME CFS. All I read now is people smashing the CDC, because who else is there to blame? You know? They can only do so much. Pretty soon CDC reps will see the nasty comments about them on here, and it will have a negative impact on research or funding--you watch. So lets respect them and encourage further collaboration and research.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Where on earth did you get that figure from as its not as bad as that thou women do get it more. Please provide referance for that ratio
    .......

    and yeah, I certainly do have bias over your government as far as CDC is concerned as some naive doctors over here, do look at the CDC info on this illness not realising their poor definition and poor studies, rather then going with what our CFS societies over here push and the Canadian consensus definition we want to see offical here. My bias towards the CDC is due to a good reason and due to much research.

    What good exactly has the CDC done??? I can think of so much bad from misuse of funds which were meant to be for CFS/ME to many other things.
     
  13. SaveMe

    SaveMe *****

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    thanks the moon is blue,
    you have been very helpful and kind. I really appreciate that. I couldnt find that survey on http://www.wpinstitute.org/ though. will you give ldn another try? were you doing 3.5 mg?
     
  14. SaveMe

    SaveMe *****

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    First my statistic 9:1 Results from a physician-based surveillance system in four US cities 30 enabled prevalence to be estimated for different ethnic groups (whites and blacks), and demonstrated the impact of different case definitions on prevalence. In the group of patients defined according to the CDC definition, the overall prevalence was 59 per 100,000 population, whereas in a group with a less restrictive definition the prevalence rate was 91 http://webcache.googleusercontent.c...d=1&hl=en&ct=clnk&gl=us&source=www.google.com

    Next, what has the CDC done? ?
    Just look at the some 5K publications!! These have all been funded by NIH/CDC....even WPI is funded by the US Govt.

    More credit is due here man.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    The CDC has been choosing to try to silence CFS since the 1980s. Please get and read Hilary Johnsons book on the history of our illness and all the goings on including the things the CDC has really done. sorry i cant remember right now what it is called.."Olslan's Web" or something.. someone else would be able to tell you.

    (Ive had CFS since my mid 20s.. almost 14 years now... please research more this illness)
     
  16. SaveMe

    SaveMe *****

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    Oh thanks!
    I was about to ask for 3.5mg too. I heard it has virtually no side effects and is a miracle drug for so many. Have you been to any cfs- me specialists. Like the big names?
     
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    1) your figures are wrong, more like 1:3 male/female
    women get more autoimmune issues due to more effective immune system which can alas, bite them back :/
    and many men do not report such issues from fear/machismo etc

    2) I was built like a brick sh*thouse, used to bench press my pals for a laugh etc ;)
    Definately male, definately young(ish) at 26 or so, still got me, as well.

    3) As folk say go read OSLER'S WEB buy a copy from Amazon, and also websites like "A Hummingbirds Guide", to find out how we've been screwed over.

    4) Realize we are lied to day in day our by our controlled, manipulative, ignorant media.

    5) There are 5 year old kids with ME/CFS !!!
     
  18. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    LDN is worth a try- MAY be a miracle drug for some-maybe even YOU- but it does have side effects and intolerable ones for some people! I couldn't sleep, but felt like I'd taken a horse tranq., just sat there feeling poisoned, my menstrual cycles went wacky (won't be an issue for you obviously), it was bad. I would defininitely start at .5 or 1 mg.

    SilverbladeTE- You say it like it is! :)

    Yes, Read Osler's Web......you can buy it on Amazon, or maybe your library has it.
     
  19. SaveMe

    SaveMe *****

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    they are not my figures. this stat was taken from a reputable source.
    So you benched 150 lbs? (avg buddy)
    what do you speculate threw you under the bus, so to speak?
     
  20. SaveMe

    SaveMe *****

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    I really wish I could help people with this illness, but to do so, I would need to be helped first, if you know what I mean. My latest/ most bothersome complaint is this dizziness. Im afraid at any min. im going to faint. To be brutally honest, I dont know how much longer i can take this.
     

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