October 17, 2013

StripSafely & Tim Gunn's Sports Jacket.

Who doesn't love a sequel to a summer block buster?

OK it may be a stretch to call StripSafely a summer block buster but a guy can dream right?

DSMA's Blog Carnival is revisiting the Strip Issue with this prompt:

What would your comment be on meter accuracy at the Diabetes Technology Society meeting? 

I actually commented as a panelist at the meeting.

Here s a little video clip.

So since there are already comments on record, I will share some of my hopes and make a confession. Let's start with that confession part. I had an ulterior motives creating the campaign.

I wanted to see if we as a community could come together and make a difference through action. 

We can.

We should do it a lot more often.

Here is how I know. The FDA called me, on a Friday evening well after business hours. Nobody work late on Friday unless the boss has bee in their bonnet. Also I got a letter back from my Congresswoman and it was very clear she reached out to FDA and got the official FDA response.

An official response and after hour calls on a Friday are an indication that we, the DOC, managed to get their attention. We need to keep it and use that attention for good. Good to means getting tighter accuracy standards AND requiring all meters systems sold to meet the new standard. No old stuff at or not quite at the old standard still sold. Yes - they could pass a new standard for new products but leave all the old stuff approved in the market. No we should not sit quietly if they do.

Keep int attention to me means moving to include positive feed back into the program. Show the regulatory process some lovin' when they take positive steps. Those of us outside the beltway (and the FDA campus is outside too) know the truth of what the great political commentator and sage Mick Jagger said, "you can't always get what you want, but if you try sometime, you just might find, You get what you need."

We are not going to get everything we want as fast as we want it from FDA. We are more likely to get it if we ask, often. It is a revolutionary concept in DC process, I know but saying thanks will help.

So, I think, we the DOC will need to keep writing about StripSafely. DC has it little temper tantrums and forgets everything outside their little ticky tack world. We don't have to play that game. We may have differences politically but we all speak BG and all will benefit form better meter systems.

There are other issues too. Ones maybe a little more complex than StripSafely, like approving new insulins or better devices. Our voices as patients can help policy makers serve us, their constituents. Let use some of the lesson learned form StripSafely like;

  • serious and solemn are the same thing so we can have fun with our advocacy 
  • policy makers listen if enough of us speak up
  • it helps to have a central source of information and base request on peer reviewed papers
  • it is a marathon not a sprint 

I'll close with an idea I heard from a leader of a community leader. We have more skin in the game than anyone. We need to learn to wear our emotion not as our heart on our sleeve but as sports jacket. Something that adds a professional appearance to the stature of the facts we present.

Yeah I know a fashion metaphor. I am a regular Tim Gunn (bet seriously, who knows better how to wear a jacket?)

“This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/09/october-dsma-blog-carnival-3/“

October 15, 2013

Munchausen by Internet

Health Community Forensics and What to Do
Health issues can be isolating. For many the comfort of online connection with other patients in similar situations is critical to staying emotionally strong enough to engage with care. Communities of patients who “get it” are valued across a variety of health conditions. These communities breakdown isolation and help patients feel understood. Sadly these communities occasionally also deal with individuals who pretend to have the health issue the community cares about.

Munchausen by Internet
There are a few names for ‘faking it’  behavior, some call them Trolls and others use the term Catfish after a 2010 movie and MTV series.(1) There is also a more specific scientific term, Munchausen by Internet. Maia Szalavitz has written articles at Time on the the topic that are a good way to understand the phenomenon; Munchausen By Internet: Faking Illnesses Online, Nov. 30, 2012 (2)  and Phony Cancers and Self-Inflicted Acid Attacks: A National Outbreak of Munchausen’s? Sept. 22, 2010. (3) Faking it, it seems is it own form of illness.

Pulman and Taylor write that, “Munchausen by Internet occurs when medically well individuals fake recognized illnesses in virtual environments, such as online support groups.” (4) Their paper, Munchausen by Internet: Current Research and Future Direction, “focuses on the aspect of Munchausen by Internet in which individuals actively seek to disrupt groups for their own satisfaction.”

This behavior exists and online health communities need to be able to identify and appropriately deal with occasional cases of Munchausen by Internet. While anger, stemming from a deception that belittles communities members value is a natural response, it may not be the best recourse. But before talking about what to do maybe it is a good idea to chat about how to spot it.

Health Community Forensics
There are some signals be aware of in health communities. Maybe the first is simply to understand the condition and be aware of comments that seem to lack first hand experience.  Another clue may be participation strictly in the heath community and have no other social media presence and / or strictly participating on the topic of the disease in social media, no favorite song, movie, book or other sign of a real life outside the disease. Look at the time line to see if there is a digital footprint before the time a possible troll joined a health community. These are signs, not proof and there are legitimate community participants who may choose to limit other social media activity.

The highly publicized case of Notre Dame linebacker Manti Te’o inspired a number of news stories on how to identify a catfish. Forbes writer Kashmir Hill offers some good advice:

  • “Beware of tales of ‘devastating accidents or illness.’” Ok by definition some of these are in communities of devastating illness but keep an eye out for the accidents. Not that they don’t happen to people with devastating illness but it may be a clue.
  • “Do a reverse image search on the photos they send Use TinEye or Google Image Search.” That the empathetic patient may be someone else photo.  Savvy catfish might make this difficult though.
  • “Get your digital stalk on.... If the digital trail is sparse, be suspicious. Do those friends look real?”

Feldman (5) as cited by Pulman and Taylor suggest as means of detection:

  • Posts consistently duplicating material in other posts, books, or health-related websites.
  • Characteristics of the supposed illness emerging as caricatures.
  • Near-fatal bouts of illness alternating with miraculous recoveries.
  • Fantastical claims, contradicted by subsequent posts, or flatly disproved.
  • Continual dramatic events in the person's life, especially when other group members have become the focus of attention.
  • Feigned blitheness about crises that will predictably attract immediate attention.
  • Others apparently posting on behalf of the individual having identical patterns of writing.

These fake cases can damage the trust of online communities and so risk the credibility of peer to peer support. Pulman and Taylor state:

A troll can disrupt the discussion on a newsgroup, disseminate bad advice, and damage the feeling of trust in a Web community. Furthermore, in a group that has become sensitive to trolling—where the rate of deception is high—some honest but na├»ve question can be quickly rejected as trolling. This can be off-putting to a new user who is immediately bombarded with accusations when venturing a first post.

The last, a distrust of new members threatens the very reason why peer to peer communities exist. Communities should be as aware of to the risk to communities from over vigilance to potential cases of Munchausen by Internet as the trolls themselves.

What to Do:
Admit it, you have been thinking, is there something wrong with this person? Apparently there is. Focus on your community’s need to respond to protect the integrity of peer to peer support. Pulman and Taylor summarize suggestion by Sabino and Fordtran: (6)

1. Let the patient know what you suspect but without outright accusation.
2. Support the suspicion with facts.
3. Provide empathetic and face-saving comments.
4. Avoid probing to uncover the patient's underlying feelings and motivations so as to minimize disruption of emotional defences that are essential to her function.
5. Assure the patient that only those who need to know will be informed of the suspicion of factitious disease.
6. Make sure the staff demonstrate continued acceptance of the patient as a person worthy of their help.

I fear that public confrontation may create a challenge.  It may create an interest in the troll coming back and trying again. The point is not to confront, out , punish or harm the person faking it. The goal is to protect the integrity of patient communities, to help peers support peers. A flame festival with a troll risks burning down the home of real peer support. I suggest that focusing on nurturing what is real should be the goal when dealing with Munchausen by Internet.  

What matters is the real community.

Related Links:


1 http://en.wikipedia.org/wiki/Catfish:_The_TV_Show
2 http://healthland.time.com/2012/11/30/munchausen-by-internet-faking-illnesses-online/
3 http://healthland.time.com/2010/09/22/phony-cancers-and-self-inflicted-acid-attacks-a-national-outbreak-of-munchausens/
4 Andy Pulman, MA and Jacqui Taylor,BSC, MSc, PhD,  Munchausen by Internet: Current Research and Future DirectionsJ Med Internet Res. 2012 Jul-Aug; 14(4): e115. Published online 2012 August 22. doi:  10.2196/jmir.2011
5 ‎Feldman MD. Munchausen by Internet: detecting factitious illness and crisis on the Internet. South Med J 2000 Jul;93(7):669-672. [Medline]
6 Savino AC, Fordtran JS. Factitious disease: clinical lessons from case studies at Baylor University Medical Center. Proc (Bayl Univ Med Cent) 2006 Jul;19(3):195-208. [Medline]

JDRF in Start Up with Venture Firm to Fund T1D Companies.

From http://www.xconomy.com

PureTech Ventures, JDRF Team Up to Form Type 1 Diabetes Startup Creator 

Disease foundations often give money to startups working on treatments that might help the people they advocate for. But it’s not too often you’ll see a nonprofit foundation join with a venture firm to create their own company, as JDRF andPureTech Ventures are doing today. 
Boston-based PureTech has secured a $5 million investment from New York-based JDRF (formerly known as the Juvenile Diabetes Research Foundation) to spawn T1D Innovations. The new entity is described as a company-creation vehicle that will help form, and provide seed funding, to startups that develop innovative therapies for type 1 diabetes. The plan is to funnel as much as $30 million from other non-profits, strategic and financial investors, into T1D, and use the cash to start eight to 10 projects. Many may go by the wayside, with a few surviving and becoming new independent companies. 
“The goal is not to make a quick buck, that’s not why we’re doing this,” says David Steinberg, a PureTech partner and TID’s initial CEO. “It’s really to lower the activation energy of getting these things out of academia and out of the realm of more basic research into that translational development pipeline.”
More: http://www.xconomy.com/boston/2013/10/15/puretech-ventures-jdrf-team-form-type-1-diabetes-startup-creator/?utm_source=rss&utm_medium=rss&utm_campaign=puretech-ventures-jdrf-team-form-type-1-diabetes-startup-creator

It will be interesting to learn more about this and the relationship to JDRF's IDDP program.

October 11, 2013

Ryan Read get a full 2014 Ride

Good news out today for T1D Racer Ryan Reed:

Roush Fenway Racing Announces Ryan Reed As The Driver Of The No. 16 American Diabetes Association Drive To Stop Diabetes SM Presented By Lilly Diabetes Ford Mustang For The 2014 NASCAR Nationwide Series Season

Concord, N.C. (Oct. 11, 2013) -- Roush Fenway Racing (RFR) announced today its partnership with Ryan Reed and the American Diabetes Association Drive to Stop Diabetes SM campaign, presented by Lilly Diabetes. Reed will drive the No. 16 RFR Ford full-time in the 2014 NASCAR Nationwide Series season, competing for a championship and rookie-of-the-year honors. Reed, a NASCAR driver making his dreams come true while living with type 1 diabetes, collaborated with the American Diabetes Association for the Drive to Stop Diabetes SM campaign in 2013, driving for RFR in a limited schedule.  
It also was announced today that Lilly Diabetes has joined the campaign. Lilly, a leader in diabetes care since 1923, will be part of three NASCAR Nationwide Series races in 2013, Charlotte, Phoenix and Homestead and the entire 2014 season.


October 8, 2013

Tom Hanks goes on Letterman and talks about type 2 diabetes and I was watching Colbert.

Tom's conversation with Dave is an opportunity to talk about type 2 without the association of the obesity blame game. Tom Hanks is not the picture of obesity in America. More he is literally the picture of how typical Americans views themselves. A star. An Oscar winning, motion picture everyman.

He (like a lot of us, including me) has faced elevated glucose for an extended period of time (aka pre-diabetes). For Tom, those blood sugars have progressed. That is what T2D does. It progresses. Let's not blame Tom (and by extension every T2D) for that progression.

He has been aware, has worked with his physician to slow the progression to a full type 2 diabetes diagnosis to years - decades. Still those blood sugars have progressed. Tom had the courage to stand up and say Doc, your weight loss suggestion isn't realistic so, "I'm gonna have Type 2 diabetes, because there is no way I can weigh as much as I did in high school."

This isn't Tom failing and being T2D. This is him keeping it as just elevated BG, as pre diabetes, for a long time. Then, and with some humor moving, to the next step in the progression.

Also nice to hear Dave say he has had issues with high blood sugars. Here in lies the point. Type 2 isn't just some stereotypical obese person that media can offer up, and we collectively can look down on for not going to the gym. Not some imaginary fatty (who isn't 'us') to blame.

Look at Dave and Tom as the new poster boys of pre-diabetes and T2D. Think decades of talking with a physician about type 2 and working to slow the progression. If and when it does progress to type 2 diabetes, blame the rat bastard diabetes and honor the success of the patient, like Tom, who for the efforts made to keep it as elevated BGs and slow his progression to type 2.

I hope Tom can be just successful in the next phase of his progression with diabetes. Be successful working with his care team to do what he can to be healthy. When and if he hits another step, another medication, with the same humor move to the next step confident in the success that slowed the progression to it.

Type 2. It is a disease not a character flaw.

You can judge me for choosing Colbert over Dave, that may be a reflection of character.