infuriorating poll

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jan 6, 2010.

  1. AuntTammie

    AuntTammie New Member

    In a UK (of course!) newspaper, there was an article re the very blitzed (I mean fast - not other possible interpretation of the word blitzed) study that was done in the UK that failed to find XMRV....article was bad enough - of course it put all the blame on the US and tried to completely discredit WPI (even though we know at this point that there could be many reasons for the different results; some that would not invalidate the WPI findings at all, and some that would)

    However, apparently attached to the article was a poll asking if people believe that ME is a "real" illness.......I am so furious!!!! Actually I don't know why, bc I totally expected this type of thing coming from the psych camp as soon as they possibly could, but still, the poll really pi$$es me off. It was removed bc someone called and complained, but still......! I am not sure whether to be happy or really upset with what the results were prior to being pulled.....only 67% thought it was a real illness which is appalling on the one hand; however, I also tend to think that 67% have overcome all the awful, inaccurate propaganda and the way that the UK treats ME, and that is a higher number than I would have expected, in a good for those 67%, and shame on the evil ones who have caused it to even be debated like that!

    One good thing is that the comments under the article were mostly quite good - a couple were bad, but they were immediately countered

    I don't have the link rt was part of something from co-cure and I don't have the time or energy to go back and pull it up at the moment.....may do so later.
  2. pumkinhead

    pumkinhead New Member

    I agree with you. Last summer a close friend for over a decade looked me in eye and said are
    you really that sick? Then she bashed pharmaceuticals as if maybe i just want the drugs which is far from the truth. It almost cost our friendship.

  3. Elisa

    Elisa Member


    I feel your heartbreak - it is so upsetting...

    But I belive our time has come and there is no stopping the truth...nothing can stop it!

    God Bless,

  4. AuntTammie

    AuntTammie New Member

    yeah, you can't win either way really - if you are like me and have bad reactions to almost every med out there and do not want to try more meds, then people think that you must not really want to get well, or else you would be taking those drugs (even though they are not a cure)....and if you are taking meds, like you, then it is the meds fault and you just want the meds .....frustrating

    sorry that a close friend said that, hurts so much more when it's the people we thought knew us better
  5. fight4acure

    fight4acure Member

    Boyyyyyyyyyyyyyyyy oh boy, they are sure glad I did not see that!!!!

    I heard my blood pressure in my ears as I was reading this post! No joke, as I can hear my blood pressure in my ears when my blood pressure rises.

    Think of it this way... the good pengys have the good fish, so the bad pengys are jealous of the good pengys, so they try to fish in the same fishing hole as the good pengys, but the bad pengys never get up in time to fish for the good fish. Oops, maybe the 'never getting up on time' shouldn't be used, lol. Let me come up with another scenerio. Well, maybe not. Anyway, so the bad pengys are selling fish for (oh darn, what is the currency over there?, in the UK?) anyway, the good pengys dont have nothing to prove... but the bad pengys want to be just like the good pengys, so they try to prove themselves but fail each time.

    Oh ok, a scenerio for the poll. Is there a north pole? Apparently, the north pole is right up the north poll.

    Okay, I'll stop while I'm ahead and confusing...

    Fight :)
    [This Message was Edited on 01/06/2010]
  6. AuntTammie

    AuntTammie New Member

    You are probably rt - and thanks for writing.......I have become better and better at not letting that sort of thing get to me, but today it just really did.....first I got super angry and then I just felt totally sad and discouraged.....I am just so darn tired of all this, and feeling so rotten is bad enough w/o being so put down for it and questioned if what you have is even "real" - they don't even question if mental illness is real, let alone any other physical illness

    i think it was also getting to me, bc I took a survey by a college yesterday (and already forgot who put it out)....anyway, they were supposed to be researching the fatigue part of CFS and it sounded like they were part of a grp who actually believe that this is a physical illness....many of the questions were pretty good, although there were some that were worded a bit oddly and didn't leave room to explain your answers.....however, there were a couple that really bugged me and one grp of questions was talking about "managing" your fatigue and different ways to try to cope with it (along the lines of using CBT in the good way it was originally intended; not the evil way the UK does it)

    ....but one question in particular asked something about trying to put it in perspective by realizing that others are worse off than you (ie more disabled).....I did not answer that one, but where there was a small place to put other comments, I told them about studies that show that people who have severe CSF are more disabled than any other illness....I did not have room to write more, but would have loved to tell them that even if there were others way worse off, focusing on that does not help - it just discounts and invalidates the suffering that one is experiencing (if some has a broken leg do people go around telling him/her that there are amputees out there, so they should focus on that and minimize their own pain?!)

    .....the question rt after that said something about focusing on what you CAN do - and that one also made me mad - I can barely do anything, should I focus on dragging myself out of bed, should I focus on finally managing to get to the grocery store only to almost pass out and not be able to even get the groceries in the car? yep, I should be sooooo glad bc I can still do those things! Grrrr

    ok sorry for venting - I think that the combo of the survey I took and the one in the UK paper just put me over the top for awhile
  7. AuntTammie

    AuntTammie New Member

    TY for responding and I really hope that you are rt....if you read what i wrote to elisa, it explains a little more about why I was so upset
  8. AuntTammie

    AuntTammie New Member

    I absolutely know what you mean about blood pressure.....I can tell, too, when mine is going up (used to be nearly perfect, now it is all over the place)....funny thing is that i actually just got a blood pressure cuff and was monitoring mine before coming on here and then again when I started reading and replying to this thread, and mine totally went up just thinking about this again (& I am MUCH calmer rt now than I was when I first saw info about the poll)

    I woudl avoid this stuff but I think it is important to be informed, and usually it does not get to me as much as it did today (always bothers me, but I have learned to try to remain calm)
  9. fight4acure

    fight4acure Member

    Good news, my favorite doc is going to do his professional attempt at replicating the WPI study, and he is the best of all of the best doctors! Have you seen his research? If not, you'd be amazed at how good he is and how detailed too!

    What's his name??? Dr. Jonathan Kerr!

    I'm so glad for WPI!!! Now I hope Dr. Kerr's research not only shows it to be true, but that there are other things that are true as well, which he will let us know indeed.

    This just made my night! I guess we are going to have a great new year now that he's involved again!

    Fight :)
    [This Message was Edited on 01/06/2010]
  10. AuntTammie

    AuntTammie New Member

    very good to hear - I needed to hear that....TY for telling us : )

    do you know his patient selection criteria?
  11. fight4acure

    fight4acure Member

    I thought you lived closer! Didn't you tell me you were going to find out, lol?

    I'm in Wisconsin, miles and miles away. Aren't you somewhere in Europe? If not, you're as bad as me at getting to bed early, lol.

    Fight :)

    P.S. I don't have a clue, but you should check out his research on the research threads here! He is amazing!

    I just checked your thread... looks like we both are night owls, lol.

    Tammie, p.s.s.s.s.... It was Quayman who posted about Dr. Kerr doing research, please read his post!!!

    Hugs :)[This Message was Edited on 01/07/2010]
  12. AuntTammie

    AuntTammie New Member

    I live near Chicago....I get to bed quite late bc I have a circadian rhythm disorder and NOTHING seems to make that much difference.....tanning and lt box do keep me from winding up going to sleep at 7 AM and sleeping the whole day, but nothing seems to make it so that I can sleep before 4AM

    I have read some of Dr Kerr's other research and think that he is quite good.....will have to look for more info re this particular study (Quayman's thread)

    hugs to you too : )
    [This Message was Edited on 01/07/2010]
  13. fight4acure

    fight4acure Member

    I'm just heading to bed. I like the silence the night brings.

    You still live closer, if he lives somewhere in Europe, lol, as you are further east than I am, lol.

    Yes, I cannot wait to hear Dr. Kerr's research. The fact is though, not only does he check up on other's research ideas, but he also creates additional knowledge while doing so, and he continues to research things as well. It's been a few years since we've heard from him. It's about time that we hear from him again. I can't wait!

    Fight :)