Diabetes Forums in and out of Trouble

Yes, diabetes forums come and go. The good ones seem to be able to survive, but they do have ups and downs and many recently have created problems for themselves with the way they have changes their formats.

http://www.dlife.com/diabetes-forum/ This link will take you to dLife, but the forum no longer exists, at least I have not been able to find it. I don't know when the forum disappeared, but it did during 2015. There are many ads on the site and different pages and there are a few good bloggers still writing for the site. On a rating of 0 (lowest) to 10 (highest), I would rate this site as a 2.

http://www.tudiabetes.org/ This site is still very active and has many features appreciated in a diabetes forum website. There are ads, but not an unreasonable amount, but they still can be a distraction. Using the rating system above, I would rate this site a 7.

http://www.diabetesdaily.com/forum/ This site is still very active. It has a decent forum and an excellent blog site. Just beware of not using hyperlinks. Try not to create them accidentally as you will be warned and then on continued use, you will be banned. This is an area where this site has little or no tolerance. It does have a recipe area. David Mendosa does also post a monthly blog on this site. Because of the hyperlink problem, I can only rate this site a 4.

http://www.diabetesforums.com/forum/ Another decent forum, but be careful as they are not too tolerant of links and hyperlinks, but a little bit nicer about letting you know and explaining where you went wrong. I would rate this site a 6.

http://www.diabetesforum.com/forum.php I will be writing a separate blog on this site.

http://www.dailystrength.org/c/Diabetes-Type-2/forum I am not familiar with this site and most members are women. It is not as active as it was years ago, but does have daily activity.

http://forum.americandiabeteswholesale.com/ This is basically a dead forum with only posts of a newsletter that shows in November the most recent post since May 2015. Rating = 0

http://forums.joslin.org/ Another forum that I thought had been pulled, but it was just that my URL had been overwritten. The last post is in January 2016 with the previous post in October 2015. Rating = 0

http://www.diabetesnet.com/forum/forum.php This forum is active, but basically for people on pumps and it is good for that. Unrated.

http://www.diabeticconnect.com/ This site has discussions but no more forums and has mainly participation by people with type 1 diabetes. Type 1 people do need a place and this may fit their needs.

There are other forums, but they are closed to people from the United States and are in other countries. I am surprised by a couple of them as we have many of the people from their country as members in the forums here. Oh, well, such is life.

SMBG – A Right Being Denied

Why are our insurance companies, doctors, and medical researchers focusing so heavily on self-monitoring of blood glucose (SMBG) and trying to discredit the good that it can do? I may not have the answer, but I will propose at least two possible theories.

Most people associated with the medical field including insurance are supportive of prescribing medications on top of medications. This I did not understand until I remembered Big Pharma and the ACCORD studies. Are our doctors so comfortable in bed with Big Pharma that they will not consider other approaches? Are the payoffs so great for them that the patients' well being is put on the back burner? Is the American Diabetes Association (ADA) so beholden to Big Pharma that they do not want to back potential patient centered aids that could reduce dependence on medication?

Is the above reason enough that doctors for the ADA want to do nothing about pushing a clear status for prediabetes and clearly recommending a strong course of action? Alternatively, is it our medical insurance companies that are pushing for inaction to keep current profits up in hopes that the profits will continue to go up? It is plausible, but not as sound as the above paragraph.

My second theory is that the current generation of doctors is so intrenched in the past and only want to treat something that is clearly a disease, that they do not want to promote preventive medicine. They want patients that are sheep, and not capable of thinking for themselves. When patients with diabetes do self-monitoring blood glucose (SMBG) they are not taught what the readings can mean or how to interpret the readings, or even when to test.

It is no wonder that knowledgeable people with type 2 diabetes become alarmed with these doctors. They search the internet for information that will assist them to learn how the test, when to test, and how to interpret the readings. Some will become successful at SMBG. The rest will become discouraged and continue testing, but not understand why. Then when their doctor ignores the readings, they may look further or give up completely.

The people that give up completely or are not interested in SMBG are the group that studies look for to participate and give the insurance companies and Medicare reasons to reduce the testing supplies. As a patient and a person with diabetes, I consider this criminal and demeaning toward patients.

While it may seem that I am overstating the above, please read this study, which clearly states the same accusation. I quote “The Cochrane review is a review of previously run studies, across a number of different countries, which have analyzed self monitoring and its effect on HbA1c levels. People with type 2 diabetes have previously noted the various limitations of the studies included in the review. Studies, included in the Cochrane review, have notably excluded participants who had previously demonstrated interest in self monitoring.” I added the emphasis. Please read the short article for further revelations.

Even though I write about some of the problems on diabetes forums, there is much good that can be had on some of the better forums. The problem is that you cannot be a timid participant on these forums. You must ask questions, but be sure to give enough information for people to make reasonable answers. If you do not, some will ask for additional information. Others will make assumptions and try to answer based on what their experience is.

The following are web sites that may be of value to you. They are not in a particular order or personal preference.

http://www.diabetesforum.com/forum.php

http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-diabetes

http://www.diabetesforums.com/forum/

http://www.tudiabetes.org/forum

http://diabetescommunity.dlife.com/go/forum/viewboard

Please remember that these forums are not chat rooms and you cannot expect an immediate answer. It may take several hours to receive several answers. I think a couple of the forums may have chat rooms, but finding people using them that will answer your questions may be problematic. Normally chat rooms are used by several people that invite each other and they want to discuss one topic among themselves.

What Is So Discouraging About Diabetes Forums

I am talking about diabetes forums in general and not pointing out any particular forum. Diabetes forums can be a source of some valuable information – when people do not take offense to the information given. What people need to understand, but seldom do, is there are many ways to approach any given topic and you will find many of them in answers to some inane questions.

On several of the forums lately, there have been some excellent questions and many equally good answers. However, for three questions on three different forums, the persons asking the question were looking for answers they thought they should see. When the answers were not what they were looking for, they dropped out of the discussion. All the questions were for people with type 2 diabetes

Two of the questions were about carbohydrates and fat content of foods. They were looking for confirmation of some information they believed in and that is promoted by the American Diabetes Association. This did not happen; all answers were low to medium carbohydrate and medium to high fat answers. The original posters came back with the studies have shown that fat was bad for us and whole grains were good for us. None of the responders agreed and so the discussions ended on both forums.

The third forum had a question about insulin and when to go on insulin. I thought this could be an interesting discussion, but for every answer, the original poster would ask about another insulin myth. There were some good responses, but the person was not convinced. Finally, one person listed many of the insulin myths and the correct answers to them. This infuriated the original poster and she said there had to be some truth to the myths. She then stated that was the reason she would avoid insulin as long as she could as insulin was only for people with severe complications and near the end of life.

I had not participated in the discussion about insulin since the other answers were good and to the point. The last statement above is the myth to end all myths. This is because insulin for people with type 2 diabetes is thought to be the treatment of last resort. Many doctors and most type 2 patients hold this to be true. By doing this, they are diminishing their quality of life and their lifespan by possibly years if not a decade, or longer.

People with type 2 diabetes should become knowledgeable about insulin and the myths so they can understand the value of insulin and how it can enhance their life and prevent the complications from gaining a foothold in their lives. I have now been on insulin for a full eight years and am very happy that I have this medication to hold the complications at bay. Yes, I have neuropathy, but I had this several years before the diabetes diagnosis. I can say that it has not gotten worse since diabetes and going on insulin.

So if you are an active participant on any diabetes forum, be aware that many that come to the forums do so only for confirmation of what they believe and not for the truth. They believe in many of the myths about diabetes and are fearful of insulin. Some are more fearful of the needles, but they can learn to overcome this. Insulin can be a very powerful tool in the battle to manage diabetes. There is a need for education, but the information is available, whether in printed form, or online.

The Problem Side of Diabetes Forums

Since I was kind to diabetes forums, I just had to meet the bad side. When people with initials behind their name (titles) and others that must not contradict the position of their professional organizations get involved and state the position, they bring many thoughts that are not always the full truth into the discussion and leave people new to the forums wondering who is right.

I will admit I am very passionate about the issue of the medical community dismissing prediabetes. Part of the reason is from my prior blog here. The consensus does state that damage occurs earlier than previously thought. It is unfortunate that no actual determination has been made for the blood glucose levels when damage can be the most severe.

First, when a person openly disputes a doctor's request of a patient, this really upsets me. Granted in this case there is some potentially harmful information missing that those of us that posted did not ask for. In getting to the A1c of 5.7, we don't know what medications the original poster was taking. We also don't know the number of lows this person experienced, if any. We can only guess that the doctor knows the facts and when he suggests getting an A1c of 5.5 he knows that this is possible.

The medical community needs more doctors like this person and less people that quote ADA (and AADE) that A1c's of 6.5 being okay. That means that a blood glucose average of 140mg/dl which tells us that damage is being done. An A1c of 5.7 means a blood glucose reading of 117mg/dl. My reaction would be to pay attention to the doctor and ignore the rest. This is between the patient and doctor and is the individuals choice.

Having said that, there are people that should not try to get that low because they are unable to control their levels and have some dangerous lows when trying to get down below 6.0. This action needs to be done according to what the patient is capable of managing, desires to do, and if the patient keeps an open line of communication with a doctor. Even though this is on a diabetes forum, most of us suggest and most take it as such, people with titles behind their name often forget themselves and advise against doctors.

The second incident is where we seem to get a dismissal of the seriousness of prediabetes. Prediabetes is technically not diabetes, however, if the medical community continues to ignore the need to treat prediabetes with counseling and letting people know how serious this can become, they are taking a pass on their responsibilities.

There is much that can be done for people with prediabetes to assist them in taking advantage of this diagnosis and preventing the onset of diabetes. If they are medically capable they should begin exercise under a doctors direction and make some good lifestyle changes which will likely prevent diabetes for a number of years or possibly decades. Some will even prevent diabetes altogether.

For the blood glucose and A1c conversion table from the American Diabetes Association click here, and if you will be using it, bookmark the page.

Types of people you will meet on Diabetes Forums

This topic is just for fun and done to lighten the mood before going back to more serious matters about diabetes.

There are many different types of people on forums and discussion boards. You may not need to know them, but you need to recognize that they exist and you will encounter them if you participate in a forum or discussion board. Moderators (or those chosen by the administrator or forum owner to keep the forum on the straight and narrow) are not included.

Type 1. The first responder – No, not the people who come with the emergency rescue vehicles. They are people that have to always be the first to respond to any new post. They will not say much to make sure they are first. I consider what they say as spam, no content and done just to raise their post count. They will lurk on a forum to ensure they are the first to answer. Some forums ban these people or delete their useless posts. I sincerely wish that post count was not a part of any forum.


Type 2. The self-promoter - For lack of any other term, this person is a self-promoter. Wants people to think that they know everything and should be the one consulted. Always has something to promote, a product, a survey, or just his own knowledge. When put to the test, they will not respond. These people are also known as hijackers because they will do this anywhere and to anyone.

Type 3. The preacher – This person will use any excuse to change the discussion to his favorite topic and then proceed to pronounce his judgment for all to read. The preacher and the expert are sometimes lumped together, but should not be as the preacher always has a ready and lengthy response for any argument. They can be like the expert when talking down to people.


Type 4. The expert – These people talk down to the rest of the posters. Also known as the smugly superior, they often have some excellent suggestions and points that are on target, but they are hard to follow. If you offer something that is not their position, you will be corrected back to their position. They will use quotes and cite references in a long essay to prove their points. They seldom use an original thought of their own. Often these people are the purveyors of low carb way of eating and/or supplements that have little known or questionable benefits. Although low carb is a popular and useful topic, the preacher and the expert diminish the value with their long winded arguments. On the topic of low carb, the preacher is the worse of the two in his pronouncements.


Type 5. The antagonizer - The can’t let it go person will pick a point to make a stand on and anyone who dares disagree, will probably be flamed on, called out, or just downright disrespected. They sometimes seem to agree with everyone until they are ready to make their stand. These people are difficult to avoid and they tend to drive the good people from the forum.


Type 6. The moderator – This self-appointed person sits on a forum and if anyone happens to open a topic that was covered anytime in the past, you will be sure to hear about it with appropriate link and comment about doing your research. If you dare stray off in a topic, they will be right there to remind you what the topic is about and if you are new to the forum, you can count on being properly chastised and put in your place.


Type 7. The peacekeeper - Another long-standing character common to forums is the peacekeeper. This person has been a regular at a particular site as long as the proprietor, but his goal as a participant has somehow devolved from saying something interesting to keeping the peace--and he has no problem peppering every thread with his efforts to intervene.


Though the peacekeeper's intentions are good, his actions end up clogging the forum with pages of useless and often long-winded discussions of propriety that are every bit as annoying as the attacks themselves. Worse, unlike the antagonizer's antics, the Peacekeeper's contributions can be virtually impossible to silence, even if you are the site's administrator. After all, how do you tactfully tell someone to stop pacifying?


Type 8. The smarty-pants (know-it-all’s) - If the peacekeeper is on a search-and-destroy mission against offensive content, the Smarty Pants' goal is to find and expose inaccuracies--no matter how insignificant--solely as a means to demonstrate intellectual superiority. A Smarty-Pants constantly runs a fine-toothed comb through both a site's posts in search of nits to pick, factual errors, grammatical errors, typos--it does not matter. The instant he finds one, pounces on the offending poster, telling all about the error and how not to make them. Some of these hair-splitters will spend their days doing the spadework necessary to prove a minor mistake in someone else's words. The most obnoxious--and yet most grimly satisfying--kind of smarty-pants, though, is the one who bases his corrections on his own "infallible" knowledge base.


Type 9. The drama queen/king – This person is maybe known as the too much information person as they lay out the situation in extreme detail with as much drama as they can. They expect everyone too agree with enthusiasm and can’t handle any disagreement. Look out when the moderator, the peacekeeper, and the smarty-pants come to this person’s defense. This combination can divide a good forum.


Type 10. The troll – conspiracy theorist or alarmist. They exist on every forum. Always post about something that is troubling and sees it as his duty to awaken everyone to a problem and draw their sympathy. Their favorite comeback if challenged is how can you allow this to go on, can you not accept progress, or the facts are on my side.


Type 11. Signature hound – This person has to detail every reading, one reading per single line and goes for the maximum – never heard of tables or condensing. A real pain for readers to scroll past his page of signature items to get to the next post. Fortunately, some forums have clamped down on these people, either by limitation of characters allowed or by editing out.


Type 12. The one time poster – These people are the problem of many forums and diabetes forums are no exception. They think they want to participate, but when they actually post, they never return. Or, when they do not get the answer or sympathy they were expecting, never post again. And most forums keep them as members to keep the member count inflated for advertising purposes.


Type 13. The needy – The people that have posted that are crying out for help. They do not always know how to express themselves, but the sincere cry for help is there. That they are often ignored is sometimes the shame of some forums.


Type 14. The contributor – These people are for real. Normally they are on target and offer valuable advice and positive contributions to real problems. On most diabetes forums, these are the valuable participants. Sometimes they are actually under appreciated.


They are often under attack by the preacher, the expert, the antagonizer, and the smarty-pants. They are often defended by the moderator and the peacekeeper.


Type 15. The advertiser – The pain of every forum. Most forums do an excellent job of removing them shortly after posting. They do not read the rules and if they even care, they will ignore the rules as their only mission is to advertise a product and make sales. Generally, they will come back and do more posting until their site address is banned or until the forum puts an approval in place for each first post or first few posts.


Yes, there are other terms for some of the types above. There are also some types that have been left out on purpose as I do not wish to acknowledge these persons. Some forums are excellent in minimizing the efforts of the worst offenders.


There are times when it is enjoyable watching some of these types at work and other times when they grate on our nerves.


Other types: The below types can be part of any of the above types except types 11, 12, 13, and 15.


Too little information person.


Copy-cat


Satirist


Humorist


Poet


Comic
The last four can make for interesting discussions and sometimes be beneficial members.


If you have types you would like mentioned, let me know.