Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Agree, here, to it is weird! Having been ill some ten years + it defies common sense. Dr. Cheney made a comment at a conference over a year ago, that pertained to a PWC's question, as to why more docs do not acknowledge its existance with all the proof. It is similar to the old belief that the world was flat. They just aren't ready to except that this exists! For the many who are suffering with multi-symptoms involving neuro-immune-muscular systems, it is a reality. After a recent support group meeting for anyone with immune-type illnesses, etc, I felt validated oncemore, as those who attended spoke the same language. Active, thriving, involved in living their lives, struck down in the prime of their lives, all sharing the fight for diagnoses, having to almost become a medical expert themselves to narrow the search for answers. With what remains of my life, with all the uncertainties of where this illness is going, I have to focus on those medical practitioners and researchers who know the most about it, believe that it is a real threat and are actively involved in diagnosis and treatment and research. We are survivors, yes but add courage to the mix as your determination and efforts to maintain quality of life despite the disbelievers, helps us all. Sue > > After a few years of hearing " Your illness is impossible because we > never heard of anything like it " , it sure was weird to hear the > argument shift to to total opposite: " Your illness is nothing special > because EVERYONE has it " . > What are people thinking? Why are they so determined to contradict > sufferers by using any excuse at all? > Having a bunch of teachers and students fall ill was nothing unusual, > but having them fail to recover, lose their jobs, careers, hobbies, > friends, interests, abilities, future and everything else was not > something any of us had seen before. > And you'd think that would be a bit difficult to totally forget, no > matter how hard people try. > > So when people say " CFS has always been around " , I'm not so sure this > statement can be trusted. It seems like people are seizing upon a few > overlooked prior cases and extrapolating this out to portray a > prevalence that is not reflected by the total unfamiliarity that ALL > doctors, " friends " , family and the whole world SHOWED when this illness > blasted into the media - and by the way sufferers crossed the USA in a > futile effort to find any doctors at all who knew what this was. > > If " CFS has always been around " and " Everyone already knew about it > before Dr called the CDC for help back in '85 " then I suppose > they would have to explain why " everyone " kept it such a secret when we > were looking so hard for ANYONE who recognized the illness. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Dear Sue, I was very moved by what you wrote about trying to make medical professionals believe that our illness is real. I have come to understand that just because someone studied and got through a lot of classes does not mean that he or she is intelligent. They did just that, they passed exams and got grades, what were their grades for these classes is not for us to know. As far as we can tell from the diplomas on their walls they were all brilliant students. Doctors are people who think inside the box almost all of the time, if they learned something in medical school years ago then the medicine that the absorbed is the only kind that is valid. They are also a bunch of conformists by nature and in a way their training makes them even more so because there is always pressure from the older doctors to diagnose the way that they in turn were taught decades ago. I think that most doctors that we come in contact with are at least 20 years behind modern medicine, no wonder that they do not see CFS or FM as a legitimate illnesses. There should be system that forces doctors to study the latest research and then tests them on it every few years. Right now most of us are seeing doctors who are anachronisms in the field of modern medicine. Mira From: dandylion183@... Date: Fri, 28 Sep 2007 19:43:57 +0000 Subject: Re: another weird thing Agree, here, to it is weird! Having been ill some ten years + it defies common sense. Dr. Cheney made a comment at a conference over a year ago, that pertained to a PWC's question, as to why more docs do not acknowledge its existance with all the proof. It is similar to the old belief that the world was flat. They just aren't ready to except that this exists! For the many who are suffering with multi-symptoms involving neuro-immune-muscular systems, it is a reality. After a recent support group meeting for anyone with immune-type illnesses, etc, I felt validated oncemore, as those who attended spoke the same language. Active, thriving, involved in living their lives, struck down in the prime of their lives, all sharing the fight for diagnoses, having to almost become a medical expert themselves to narrow the search for answers. With what remains of my life, with all the uncertainties of where this illness is going, I have to focus on those medical practitioners and researchers who know the most about it, believe that it is a real threat and are actively involved in diagnosis and treatment and research. We are survivors, yes but add courage to the mix as your determination and efforts to maintain quality of life despite the disbelievers, helps us all. Sue > > After a few years of hearing " Your illness is impossible because we > never heard of anything like it " , it sure was weird to hear the > argument shift to to total opposite: " Your illness is nothing special > because EVERYONE has it " . > What are people thinking? Why are they so determined to contradict > sufferers by using any excuse at all? > Having a bunch of teachers and students fall ill was nothing unusual, > but having them fail to recover, lose their jobs, careers, hobbies, > friends, interests, abilities, future and everything else was not > something any of us had seen before. > And you'd think that would be a bit difficult to totally forget, no > matter how hard people try. > > So when people say " CFS has always been around " , I'm not so sure this > statement can be trusted. It seems like people are seizing upon a few > overlooked prior cases and extrapolating this out to portray a > prevalence that is not reflected by the total unfamiliarity that ALL > doctors, " friends " , family and the whole world SHOWED when this illness > blasted into the media - and by the way sufferers crossed the USA in a > futile effort to find any doctors at all who knew what this was. > > If " CFS has always been around " and " Everyone already knew about it > before Dr called the CDC for help back in '85 " then I suppose > they would have to explain why " everyone " kept it such a secret when we > were looking so hard for ANYONE who recognized the illness. > - > _________________________________________________________________ News, entertainment and everything you care about at Live.com. Get it now! http://www.live.com/getstarted.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Mira Ghoshal < wrote: > There should be system that forces doctors to study the latest research and then tests them on it every few years. Right now most of us are seeing doctors who are anachronisms > in the field of modern medicine. > > Mira A couple of years ago, a survey showed that 20% of gastroenterologists and 50% of GP's STILL hadn't heard of H Pylori - more than twenty years after Barry Marshall and Robin Warren showed that the bacteria was responsible for ulcers - and could be cured. (They are enjoying their Nobel Prize very much, after all the denial from the medical profession they were subjected to) It appears that there is no formalized mechanism to pursuade doctors that they cannot ignore research that was developed after they graduated medical school simply because the first time they heard it was from an informed patient. These H Pylori patients have been forced to pay for a useless appointment and go elsewhere - without recourse. Evidence has shown that doctors feel free to ignore individuals over and over, dismissing each one in turn without regard that they are all saying the same thing and citing recent medical research. My proposal was that support groups carrying reams of evidence should accompany CFSers to new doctor visits to firmly ensure that the illness is taken seriously. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 It's got to be awfully tempting to dismiss their patients' reports of this illness. Think of the alternatives they'd face if they respected their patients and acknowledged their illness: A. YOU REALLY ARE SICK, I've heard about some reports about this, this is for real... 1. But basically I am just ignorant about it. So go home and remain sick. I'll write in the record: " Patient really sick. I did nothing about it. Too ignorant. " Or... 2. I have a list of medical specialties. It tells me whom to send my patients to. I also have a list of drugs. It tells me what to prescribe for them. You are not on either list. I read these two lists very carefully, which is what we call a high standard of medical care. Medicine can do nothing for you. Go home and be sick. Or... 3. I have medical integrity. So, I am going to spend my nights and weekends reading up on this, so I can find out how I can help (even if my colleagues laugh at me for doing so, and I won't get paid for my time). Or... B. YOU REALLY ARE NOT SICK. Go home, improve your attitude, maybe you'll feel better. Second visit: " Stop bellyaching! That's your problem. " -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Sounds like the building is having a leak problem. Do you heat with gas or oil? I have gas because even the oil delivery makes me sick from the fumes. It's possible the oil you smell is a spill somewhere in the basement after delivery. > > is last week ithought i smelled gas. my stove was off. then it smelld like oil. > all my plastic storage comntainers are oily. i don't know why. > > they all of a sudden now have been working on the apt downstairs but i already > took pics of how they had pipes laying on the floor stove in mioddle of liviung > room etc so i'm wondering if gas could change color of bnug? the last people > that klived there were also ssi and the dad had a nervous breakdown and the > paramedics were always here for the son. they also evicted those poor people i > think they'e been gone for a year or longer > > > something feels wrong can't put my finger on it quite yet. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 I believe that if your body smells something, and it's not flowers, food, or some other natural, beautiful, healthful fragrance, it's a warning. If the off-gassing was bearable, and your body could easily deal with the toxic-burden, you would not smell it. The more you smell it, the more of a warning it is. Yes, something is off. You are right, and the sooner you act, the better. God gave us these amazing senses for a good reason. It's time we use them to our own benefit and not put our blind faith/trust in the doctors, clergy, professors, scientists, industry leaders, & politicians. Hence, the phrase " see with your own eyes. " > > is last week ithought i smelled gas. my stove was off. then it smelld like oil. > all my plastic storage comntainers are oily. i don't know why. > > they all of a sudden now have been working on the apt downstairs but i already > took pics of how they had pipes laying on the floor stove in mioddle of liviung > room etc so i'm wondering if gas could change color of bnug? the last people > that klived there were also ssi and the dad had a nervous breakdown and the > paramedics were always here for the son. they also evicted those poor people i > think they'e been gone for a year or longer > > > something feels wrong can't put my finger on it quite yet. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.