3 posts from May, 2009

Fibromyalgia Awareness Day 2009

Posted May 13th, 2009 by

Did you know that yesterday was Fibromyalgia Awareness Day?

The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.

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This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.

With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement – “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”

If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.

PatientsLikeMe member moakes


PatientsLikeMe at 2009 Parkinson’s Unity Walk

Posted May 7th, 2009 by

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PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s research. As Lori said last year, “Unity” is the perfect word to describe this event. People from all over the world came together for a common cause and the results were staggering!

Getting to meet PatientsLikeMe members in real life is always a treat, and this year we saw old friends and met some new faces too! For me, one of the highlights was getting to see the amazing quiimg_73903lt made up of squares created by our PD members. Not only is it a stunning piece of craftsmanship, but it represents the spirit of collaboration that is so central to PatientsLikeMe. Members from across the country, many of whom have never met each other, shared their own artistic talents in their individual squares and the final product represents their collective strength, wisdom and passion. It was a great symbol of the power of our PatientsLikeMe community and all their efforts this Parkinson’s Awareness Month.

Great work Team PatientsLikeMe!

PatientsLikeMe member moakes


Gambling in online PD patients higher than previously reported

Posted May 1st, 2009 by

When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex).

In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote:

“I am spending a lot of money that i should not spend.  I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.”

We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated problem gambling with dopamine-agonist drugs, we wanted to find out if gambling might be elevated in other patients with a neurodegenerative movement disorder; maybe gambling was just an outlet for boredom or something that someone with physical disabilities could take pleasure in as a hobby. Therefore, we used a control group from our ALS community. Because users of our site are, by definition, web users, we were also interested to see if our users were more likely to be using online gambling websites than other reports in the literature. Finally, we wanted to know more about what was driving patients’ gambling behavior.

Because of the size and levels of engagement in our patient communities, we were able to receive responses from more than 400 patients in about a week. Normally, a study of this size would take several years and a team of researchers to carry out, showing the potential power of sharing and openness.

What did we find?

  • We found a higher level of problem gambling in our PD population (as defined by the South Oaks Gambling Scale) than previous studies; 13% of PD patients as opposed to previous estimates of around 4%.
  • Patients with ALS were much less likely to gamble; only 3% of ALS patients scored above cutoff for having a gambling problem, compared to estimated rates of 0.25-1.7% in the general population.
  • The average “problem gambler” with PD had spent nearly $3,000 on gambling in the past 12 months, and an estimated $24,000 in their lifetime.
  • The most common forms of gambling behavior were the lottery, slot machines, or visiting a casino. Gambling online using the internet was uncommon; only 2% of PD patients reported ever having gambled online, and just 2 out of 27 problem gamblers with PD.
  • PD patient with problem gambling were more likely than ALS patients with problem gambling to say that their gambling was distressing or out of their control.
  • In our study, problem gamblers with PD were no more likely than non-gamblers to be on a dopamine-agonist drug.

We were interested to find that our study produced a higher estimate of problem gambling in PD than previous studies. It could be that our population is biased or unusual in some way; we have a slightly higher proportion of young-onset PD patients, who may be more prone to gambling. We also suspect that people are more willing to admit to distressing or embarrassing behavior issues in an anonymous online survey as opposed to discussing it in the doctor’s office.

As more of these cases have come to light, warnings about compulsive behavior have appeared on the label of dopamine-agonist drugs such as Mirapex.  It is the responsibility of everyone involved in the care of people with PD to warn them of the risks. The more patients like those in our community share their real-world experiences of treatments and side effects, the more researchers, drug-makers, doctors, and other providers can learn to help minimize the risks and maximize their quality of life.

Wicks P, MacPhee G (In press) Pathological Gambling amongst Parkinson’s Disease and ALS patients in an online community (PatientsLikeMe.com), Movement Disorders (more…)