@anon92548039 I can only assume that you did not practice and did not get your education in the United States. Nor does it sound like you’ve ever participated at one of the many research institutions in the United States.
This particularly bothers me. Would you ever think that a doctor asks you if “your diabetes is well regulated” that he might be interested in your perception of what he already knows? In this country I can’t go to a doctors appointment without the doctor being privy to my medical records for the past ten years, so he doesn’t need to ask for me to make a diagnosis.
And it is not the job of a doctor to be burdened “with the daily care” of MY T1D. That is my burden, with the guidance of my diabetes team.
It seems to me that you are quite combative in your relationship with your doctors and medical colleagues.
In my experience as a clinical scientist with a PhD, very few doctors (MDs, DOs) are well trained in research (exceptions being the dual MD-PhDs), so there is good reason for their not being taken as seriously as such. MDs simply don’t have time in their training for the rigorous study of research methods and statistics the way PhDs do.
I guess you are right. I just can’t stand the way some doctors in the Netherlands make decisions about me, using their title as doctor to declare my unfitness to drive, but not using sound evidence based knowledge, but a little paragraph in Dutch law that nobody knew about (not even my own healthcare provider) and all because I have type 1 diabetes and this is known by the Dutch authorities because I got type 1 diabetes before I passed my driving test.
It’s made me a bitter person and I can’t seem to slip out of it
@anon92548039 That is outrageous! I assume that you control your diabetes well, and that you don’t have an undue number of debilitating lows. If my doctor advised that I lost my driving privileges I would be combative too😊
I lost my driving privilige because of a depression! Not because of my T1D, that’s what’s been so frustrating to me. Because of the way driving fitness is put into law in the Netherlands, I was singled out, but about 5% of Dutch people are depressed each year. I always say: traffic jams would have been resolved if everybody who had a depression was declared unfit to drive up to 1 year after remission of the depression!
I have been watching and reading for awhile and am very sad to see many have given up. I know, I know, we all have heard the cure in five years line over and over.
My parents and I bought it way back in 1970. We were all in on fund raising causes and believed we’d help find that cure.
And over the years I lost hope. I was cynical and very unhappy.
But I have realized where I am now is because of all the research that has happened over the years. Better insulins, blood testing strips followed by meters vs urine testing in my little chemistry set, insulin pumps, CGMs. All of these advancements have made my life easier.
And I have also realized, if I want a cure, I need to help.
So I volunteer whenever I can for trials. I have done, drugs trials, meter trials, CGM trials, infusion set trials and this past two years my biggest was the ViaCtye stem cell study. I do believe that once we can find a way to keep those insulin producing cells happy and always from the antibodies, we will be free of all this crap we deal with day in and day out.
Not sure if it will be in my life time, but being in a number of trials have made me realize how hard this process is and a better understanding why it takes so long.
I can let my diabetes beat me and make me very unhappy, or I can just realize it is what it is and I must keep fighting the fight. I need to be in good shape so when that cure does happen, I will be healthy enough to get in line.
Please, don’t give up. There are many, many people out there who are working very hard to help us. They are very dedicated and very passionate about their goal. A cure for diabetes.
You are clearly not well informed on the laws in the Netherlands regarding fitness to drive! This has (almost) nothing to do with the EU!
I regard the doctors as “witnessing professionals”. I have never met a doctor in clinical practice who agrees with the way fitness to drive is regulated and determined in the Netherlands. Doctors at the CBR are the ones who should be ashamed of themselves!
Anyway, Boerenkool, I’m done with your comments. It seems to me you are not really here to listen, only to be cynical and throw in some remarks without much knowledge while I’m baring my soul over here.
Yes, you are right Sally7! There has been a lot of progress! My life with T1D is so much better than it was 25 years ago!
I feel like I’m in sort of a midlife-diabetes-crisis, somehow trying to get to terms with the fact that it’s been 35 out of 45 years of living with T1D and the realising that it’ll probably stay with me the rest of my life.
Anybody else who can relate to this midlife-diabetes-crisis?
For many diseases, you can pick any doctor you like. But not psychiatrists and I read lots of complaints about them on the internet.
Okay, fine.
Actually, most of the time I am here to read. But sometimes I’m here to have a conversation and sometimes I may disagree with someone. That’s not cynicism. I’m sorry you feel that way.
It is not just my view that medical progress has been slowing down. See, for example, the Aeon Essays article by Michael Hanson, “Has Progress in Science and Technology Come to a Halt?” and the article in Forbes Magazine by Michael Gibson, “The Big Shrug: Both Democrats and Republicans Accept Technological Stagnation in Medicine.” In 2008 the FDA noted that for the first time since its founding, the number of applications for new drug approvals had declined, and of those submitted, a large number were just minor variants of existing drugs, trying to circumvent patent protections. The New York Times reported in 2011 that the “Obama administration has become so concerned about the slowing pace of new drugs coming out of the pharmaceutical industry that officials have decided to start a billion dollar development center to help create medicines” (issue of January 22). I think the slow progress toward a cure for diabetes is part of this general slowing trend.
I never said or implied that HIV/AIDS was cured, so it is hardly necessary, Cardamom, to scold me by saying that “first, HIV has no cure,” since I never said it had, but rather, I deliberately phrased the contrast between the relatively rapid development of a “treatment” for HIV/AIDs by speaking of the comparatively quick development of “effective treatments” for HIV/AIDS after its discovery compared to the much greater gap between the discovery of diabetes and its treatment. An Ancient Egyptian papyrus described type 1 diabetes, while HIV/AIDS came to general attention in 1981 and its cause was found in 1984, and Matthew Dobson didn’t demonstrate sugar in the urine and blood of diabetics until 1776. It wasn’t until 1889 that von Mehring and Minkowski showed that diabetes resulted from the lack of something produced by the pancreas, and it took till 1906 for Zeuzler to find that an extract from the pancreas could treat diabetics, though he rejected it when he observed the first iatrogenic hypoglycemia. Only in 1922 did Banting and Best bring about a treatment for diabetes 1500 years after its first description and 33 years after the cause of diabetes in the lack of something from the pancreas had been found in 1889, but the first anti-retroviral treatment for HIV/AIDs emerged in 1995, just 14 years after it had been described. So progress in finding a treatment for diabetes has been slower than me, noted the faster finding of a treatment for HIV/AIDs than for diabetes, and I never said that
Uhhhh, you don’t think being in 1980-2000s has something to do with the more rapid progression toward effective treatments for HIV compared to diabetes? That seems like the super obvious reason… if diabetes were first observed in 1981, I’m sure its progression would have been way faster too. HIV just doesn’t make sense as a parallel. My point re: the cure aspect is that they have gotten fairly quickly to a point where progress on that front has slowed considerably as well—for many diseases finding effective treatments may be much easier than finding cures.
Perhaps if Type 1 diabetes was caused, like HIV/AIDS, by one identifiable and isolatable virus, progress could be rapid. Establishing the link between simian immunodeficiency virus and human immunodeficiency virus, and then isolating that virus and finding ways to keep it in check, was a fairly straightforward (though not easy) connect-the-dots progression. Meanwhile, despite decades of work, researchers remain uncertain exactly which viruses trigger the autoimmune response that leads to Type 1 (or even if viruses are ultimately responsible), and why, and further why the T cells attack the beta cells. The Type 1 disease mechanism is nowhere near as clear as it was with HIV.
Cardamon: Both type 1 diabetes and HIV/Aids were known to be serious health problems in 1981, so why was the response since then to the seriousness of AIDS so much more rapid and successful than to the seriousness of type 1 diabetes? Actually, a English sailor treated unsuccessfully in Liverpool in 1959 for tuberculosis, who later died, has since that time also been found from study of his preserved samples to have had AIDS, but as a clinical entity AIDS was unknown. Interestingly, I once found a whole series of East German medical journal articles on the subject of ‘immunodeficiency in homosexual males’ published in the 1970s, so the clinical syndrome of AIDS was recognized by some, though the links, established by studies of Kaposi’s Sarcoma in gay men, were not clear.
Still, my point is that the progress in AIDS research was much more vigorous than in type 1 diabetes, and a lot of that was because of political pressure, especially since everyone assumed it would soon be spreading to the non-homosexual population. Every night Dan Rather used to begin the CBS Evening News with some AIDS story, and you would never see anything like that for type 1 diabetes, which most of the public simply confuses with type 2 diabetes or thinks was cured long ago by insulin.
Beacher: I agree that type 1 diabetes is an intrinsically more difficult disease to understand than AIDS, but it should only logically be comparably difficult to cure if the cure has to unravel the causal process by which type 1 diabetes develops. I don’t think it has to. Instead, I think the ‘cure’ can be profoundly superficial, such as implanting pancreatic beta cells from pigs in immunological shielding capsules, so that type 1 diabetics can respond physiologically to glucose levels. The only thing that needs to be done to perfect this approach is to find a way to ensure that the encapsulated cells get sufficient oxygen, and this seems like a relatively simple bioengineering problem. But, the usual listlessness and carelessness with diabetes research has let progress fade away on this line of development.
(for entire article - go to the link. select paragraphs below)
David Carr remained a medical enigma until the early 1980s when it dawned on the three doctors that their patient had symptoms similar to those beginning to appear in medical literature due to a mysterious new illness: Aids. In 1983 they wrote to the Lancet posing the question: Did our patient have Aids?
However, it was the tenacity of one member of this committee - David Ho, director of the Aaron Diamond Aids Research Centre in New York City and professor of medicine and microbiology at New York University School of Medicine - that has now cast grave doubts over the scientific validity of the case of the Manchester sailor.
Professor Ho’s lab, however, was a specialist Aids centre and was accustomed to performing difficult PCR tests and rapid genetic sequencing. Soon after being sent processed DNA from kidney tissue - which had been left over from the 1990 experiment - Professsor Ho was able to isolate the entire sequence of HIV ``with ease’'.
The sequence, however, began to puzzle Professor Ho following a discussion he had with Gerald Myers, director of the HIV Sequence Database at the US’s Los Alamos National Laboratory, in New Mexico, and a world authority on the genetics of the virus. "Gerry told us his concerns about the possibility that it was a contaminant. All the calculations and analyses Gerry did suggested that it could be a contaminant . . . [The virus] did not make any sense based on everything he has known about them,‘’ Professor Ho said.
Dr Myers was well aware from nearly a decade’s work on the Aids virus that it is one of the fastest evolving life-forms. Its speed of change is dramatic. He estimated the strains of HIV circulating in the world alter their DNA sequence by about 1 per cent per year. This would mean the "1959 virus’’ - which presumably must have infected Carr years earlier - should have differed from 1990 strains by 30 per cent or more.
The essential problem Dr Myers had identified is that the virus supposedly dating back to 1959 was to all intents and purposes identical to strains of HIV circulating in North America and Europe in 1990. "You couldn’t distinguish it from a 1990 virus,‘’ Professor Ho said. Dr Myers dismissed the 1959 virus as an "aberration’'.
As a final check, Professor Ho employed a sophisticated DNA test to see whether this set of tissues all came from the same person - they did. However, when he compared them against the DNA sent to him earlier, he was shocked to discover that this HIV-positive tissue was from another person. Furthermore, the size of fragments of a gene the scientists used as another check on their PCR technology indicated the two sets of samples from Manchester were from tissues of significantly different ages.
AIDS seemingly sprang up from nowhere, and in the beginning nobody knew what is was or how it might spread, only that it was devastating and a certain death sentence, and so there was a high degree of panic. It has often been said that, at the height of the AIDS crisis, in the mid-1980s, men were “dropping like flies.” I was in my mid-20s then, and became so drained by attending at least one funeral a week that I moved to a different city, where I wouldn’t know anyone – or at least not anyone who was about to die. We lost a huge swathe of several generations to AIDS.
It would be hard to argue that diabetes is a comparable crisis. It is a treatable chronic disease whose workings are understood. Diabetics are not exactly dropping like flies. There is no crisis about losing entire generations of diabetics. Nobody is afraid of catching diabetes from waiters or doorknobs or their next date. Doctors and nurses do not refuse to treat us, and our families do not cast us out. Preachers do not say God is judging us, and politicians do not threaten to quarantine or tattoo us.
So of course the drive to find a cure is much less vigorous. Nevertheless, many researchers around the world are dedicated to finding a cure.
Seydlitz “The only thing that needs to be done to perfect this approach is to find a way to ensure that the encapsulated cells get sufficient oxygen, and this seems like a relatively simple bioengineering problem.” There you go you should work on this right away and make diabetes history…
