tag:blogger.com,1999:blog-5877221018800830362.post2047839653545829105..comments2024-02-22T01:35:03.164-05:00Comments on Cure Strategy (formerly, Serious Medicine Strategy): G-PACT vs. John McCain? Or McCain vs. Cures?James P. Pinkertonhttp://www.blogger.com/profile/06914344842339708576noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-5877221018800830362.post-7507885331457635522010-05-30T22:56:07.759-04:002010-05-30T22:56:07.759-04:00I have SEVERE Gastroparesis for over 5 years. Pres...I have SEVERE Gastroparesis for over 5 years. Presently I am on a feeding tube for 16 hours a day. I have been unable to orally consume food in almost 2 years. This disease affects not only the patient but all loved ones as well. We have no quality of life, ridiculous out of pocket medical expenses, etc. It is a constant struggle to get thru each day; it’s like having a severe stomach virus 24/7. Our feeding tubes, supplies and medication are our life lines. Cutting motility funding is pulling the plug on our life support.<br />EileenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-43390842369940927282010-02-22T15:15:54.199-05:002010-02-22T15:15:54.199-05:00I listened to the Greta Van Susteren interview and...I listened to the Greta Van Susteren interview and it is my understanding of McCain's statement he was referring to $2 million Super Bowl Ad as bad spending and $2 million on IBS Study as good spending. He was talking about Americans wanting accountability. I will admit that I do think he could have made his point a bit clearer to understand.<br /><br />Just my opinion and yes I suffer each day like so many.<br /><br />JaneSheNiteOwlhttps://www.blogger.com/profile/16218960367213550846noreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-26589246689694262472010-02-22T13:26:26.920-05:002010-02-22T13:26:26.920-05:00It is easy for someone who does not know of a cond...It is easy for someone who does not know of a condition to make comments about it as Sen McCain has. <br /><br />There is an old saying "a little information is a dangerouns thing".<br /><br />What does he probably know about gastric mobility issues? That it is a stomach ache... that is probably the long and short of it.<br /><br />The sad thing is that we really can't blame him when if you ask the average nurse or doctor about a condition like gastroparesis they will probably know nothing about it... I was even told by one ER doctor that my gastroparesis was nothing more than 'severe gastritis' and that I just needed to go on a bland diet for a week or two and would then be fine! If many of our healthcare professionals do not know about this condition how can we expect our elected officials to uderstand the impact?<br /><br />If you go to the NIH site and type in "gastroparesis 2004" you will be directed to a PDF of the minutes of a conference held at the NIH on April 4, 2004 where-in the number of an estimated 5 million Americans are affected.<br /><br />If you go to Medscape and search Gastroparesis you will find information from 2008 where the number is stated at 4% of the population being affected, with current census numbers that places it around 13 million people.<br /><br />Awareness is a must... the problem is getting the information out to the Medical profession first so that diagnosis can be done quicker (mine took over 20 years!), then to the Politicians because when Dr's know how common it really is and how little there is out there to treat these conditions they will push those representatives for pharma companies that visit all the time handing out clocks and notepads for new drugs... and the pharma companies will then start to scramble to get into this virtually untapped field... <br /><br />As for McCain... shame on him for making a mockery out of the suffering of so many Americans, ignorance is not an excuse.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-40904794682493735682010-02-20T16:13:51.937-05:002010-02-20T16:13:51.937-05:005 years ago my sister came down with "the flu...5 years ago my sister came down with "the flu." But it didn't go away. 18 months later she had lost 85 lbs. and her organs were shutting down. She lives today via "TPN" (total parenteral nutrition)..fed through a tube inserted into her chest which is inserted into the Vena Cava of her heart. She "hooks up" nightly to get her nutrition in order to survive. A "good" day for her is a HORRIBLE day for a healthy person. Her entire intestinal tract does not operate. Her intestines and stomach are now in complete failure. Senator McCain, try living for a day with 3 tubes in your body...all of which are necessary for survival... Our family lives with constant "tears in our hearts."Marge, Illinoisnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-81617984475780841282010-02-15T13:34:08.380-05:002010-02-15T13:34:08.380-05:00As a sufferer of Gastroparesis I understand the th...As a sufferer of Gastroparesis I understand the thoughts and feelings that people have expressed here. I am not a fan of John McCain, however, he is one of the very few in Washington that has never supported earmarks. His comments that he made were definitly uncompassionate and it made me angry as well to disregard motility disorders. This bill is an earmark and I as a taxpayer do not support this type of funding. However, I think if we can get a message across maybe we can get a bill sponsored specifically for this very disease. There are many road blocks and one specifically is the FDA. Why is it that there has only been 1 drug to specifically treat gastroparesis in the past 20 years? Blame it on the FDA...this is where the grass roots efforts need to take place and make our voices heard! The funding that this $$$ would go towards would be research on a new antibiotic to treat IBS with an overgrowth. Before people make a comment they need to read the entire bill that was presented and the research that is needed to be funded. We need more research as in the causes of Gastroparesis and it is time for people start. Look at the Breast Cancer Awareness movement...they too started at the grass roots level and look at where they are now..All of the money that they have raised is from private donations. How did they get private donations...by increasing awareness. It can be done!<br /><br />-Andrea, MarylandAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-84174558819970197922010-02-15T11:12:41.600-05:002010-02-15T11:12:41.600-05:00Dear Mr. McCain,
I am sitting hear crying, to wri...Dear Mr. McCain,<br /><br />I am sitting hear crying, to write down my feelings, all I can ask is that you look really take a look and see how we suffer, I can not longer work, I got down to 82 lbs and now live by feeding tube. I would love to eat, all the medication and shots I have to take to just have a good day, which is far and few between. I had a life.. Your are a "Hero", and I thnak you for serving our great country all I ask is that you please get all the facts.<br /><br />Thank you,<br />Stacey Cowell, NJAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-55590511371711563442010-02-11T11:26:08.056-05:002010-02-11T11:26:08.056-05:00Mr. McCain perhaps if you looked further into what...Mr. McCain perhaps if you looked further into what Gastroparesis causes to human life, you might change your mind, as a person who respected you, I think you need to investigate what a devasting illness this is and not use it as a joke for unwarrented earmarks you are. My daughter has suffered with it for 3 years now, she once had a life,a job, and a smile, that has changed. Would you make a joke of research for cancer? I don't think so.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-63180100543758346662010-02-11T09:34:23.867-05:002010-02-11T09:34:23.867-05:00McCain is attempting to exploit a disease for poli...McCain is attempting to exploit a disease for political gains at the expense of millions of very sick people simply because IBS and gastro failure are not widely understood and sound funny. How cruel, crass, and juvenile of McCain. Politics are literally keeping people sick b/c the FDA refuses to approve new drugs for motility disorders, and to add to that set back McCain has decided to make gastro motility disease his whipping boy. <br /><br />Thank You John McCain for being such a fine human being.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-34463915241662924962010-02-10T23:43:53.168-05:002010-02-10T23:43:53.168-05:00I am shocked to hear this kind of disregard for a ...I am shocked to hear this kind of disregard for a common illness (gastroparesis and IBD) from someone who is generally rational (although penny-pinching) with funding medical research. Sen. McCain's attitude towards this all-too-common disease is ridiculous.<br /><br />Sen. McCain: Beef might be what's for dinner. But for those of us with gastroparesis, we have to deal with it at breakfast as well. Literally.StillTherehttp://onein23.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-30596397769719349822010-02-10T20:55:27.995-05:002010-02-10T20:55:27.995-05:00In the past five years, I have lost about 85 lbs w...In the past five years, I have lost about 85 lbs without trying. Nausea, abdominal fullness, gagging, vomiting, pain, bloating, etc. Really, this is what I deal with every single day as I struggle to maintain my weight so I can continue to work. I have to work because my husband was laid off and is in school full time. He can't find a job anywhere in Maine. In this economy of increasing cost of living everywhere and now only my income to hold us down, how do I continue to go to work? There are no more treatment options for me. And, I am only 28 years old. Please think about this...just for one minute.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-81693661744331375672010-02-10T18:46:52.700-05:002010-02-10T18:46:52.700-05:00I wonder if John McCain would feel different if th...I wonder if John McCain would feel different if the money was going toward cancer research? I know that he has battled that himself on a personal level. I wonder how he would feel to not be able to eat like a normal person without worry of feeling sick afterward or not to be able to eat at all. My grandmother said never judge a man till you walk a mile in his moccasins. Well Mr. McCain I am really to walk in your shoes, are you ready to walk in mine?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5877221018800830362.post-78519836805657233542010-02-10T18:46:51.846-05:002010-02-10T18:46:51.846-05:00Bravo! I voted for McCain and have always conside...Bravo! I voted for McCain and have always considered him a hero. My 2.5 year old daughter suffers from chronic intestinal pseudo-obstruction and I felt like he was almost making fun of her with his comments. I couldn't believe it.Anonymousnoreply@blogger.com