PatientsLikeMe

http://www.fiercepharma.com/story/fda-taps-patientslikeme-harness-patient-info-drug-safety-monitoring/2015-06-15

PatientsLikeMe has been on a roll, inking deals with biopharma giants such as AstraZeneca ($AZN), Genentech and Biogen ($BIIB) to provide its patient-reported data for the companies’ R&D initiatives. Now the company is shifting gears, planning to work with the FDA to see how its patient reports could improve drug safety.

PatientsLikeMe draws its data from a network of 350,000 patients, collecting information in real time about issues ranging from drug tolerance and adherence to quality of life…

https://www.patientslikeme.com/symptoms/show/6?page=1

Pain Report

This section is a list of different treatments used for pain, with Tramadol being listed as the most frequently used.

https://www.patientslikeme.com/conditions/393-chronic-pain-syndrome

Treatments taken by people with Chronic Pain Syndrome

This shows hydrocodone as the most frequent treatment being used.

http://blog.patientslikeme.com/tag/national-fibromyalgia-and-chronic-pain-association/

The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the community, and now, it’s more than 42,000 strong! They’re donating their data through personalized health profiles and sharing their stories in the forum to help others with fibromyalgia…

http://blog.patientslikeme.com/2015/01/21/patientslikeme-member-tam-builds-first-ever-by-patients-for-patients-health-measure-on-the-open-research-exchange/

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE), a platform that brings patients and researchers together to develop the most effective tools for measuring disease…

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

In the video, Tam describes her first experience with the 1-10 rating scale for pain.  When asked about the worst pain she could imagine (that being a 10), she used being crucified as an example.  So then the doctor said that a 10 would be like having a toothache so bad you feel like you have to call the dentist and get seen that day.

Well, that wouldn’t describe my level 10 pain.  If I used that example, my pain levels would be off the chart.

There appears to be a small group of chronic pain patients using this website.  I’m not sure what the benefit would be for me, as a 30-year intractable pain patient, to join.  But it may help other pain patients, especially those who suffer from fibro.

There’s also a section to search for clinical trials, including by location:

https://www.patientslikeme.com/clinical_trials

3 thoughts on “PatientsLikeMe

    • I don’t know much more about this website except for what I posted. But considering that the most frequently used pain med among its members is Tramadol, which is really popular in the U.K., I assume there are plenty of Brits who are members. Maybe somewhere on the website is a breakdown of where they’re all located? Or try looking for clinical trials in the U.K.?

      I hesitate to say that my latest pain storm has abated, because it seems to jinx it. Just when I think I’m doing okay, it’s like, BAM, you’re wrong! However, I think the last 24 hours hasn’t been so bad. Thanks for asking. 🙂

      Liked by 2 people

  1. Thanks, Jo 🙂

    I was thinking more along the lines of trying to help Cass find a resourcevthat might be useful to her opin Oz.

    Good that you’ve had some respite – even if it’s temporary, a brief break has to be better than none at all, even if it makes it all more frustrating!

    Hey, I understand your $ situation, but when you can, it might be worth trying an amino acid called DLPA – DL-Phenylalanine. Comes as a fluffy powder, or in capsules. Cheap over here. It binds to opiate receptors, so has the same effect as morphine and other opiates. Helps me, and also seems to bestow a sense of general well-being at the same time. One of my old clients, now a friend, started using it on my recommendation, and said wit surprise that it really helped with her depression. I know your pain takes you to some seriously dark places, so if it did the same for you, it would give you some controllable respite – one of the worst things about chronic illness and chronic pain for me is the unpredictability. Oh, it has the same effect on me, too 🙂 My only problem with it is that when I’m in that place, my brain freezes and I forget what helps. I tried writing lists, but I forget where I’ve put them, Lol.

    Re Tramadol. Yes, you’re dead right, it is very popular in the UK medical world. Stupid really, because it’s a nasty toxic drug. Luckily for me, my system violently rejects Tramadol, really makes me competition for Linda Blair, blows my face up, makes me shake, feel terrible, can’t walk, talk, think, nothing. So they have learned that I can only tolerate proper opiates, not synthetic opioids (or whichever way round the definitions go) so I get dihydrocodeine and Oramorph. I used to get oxycontin, too (diff name in US, but what House was addicted to), but could only have the white, short-acting ones and not the coloured long-acting ones, so they stopped it. I could possibly talk my GP round to it again, I don’t know. I also don’t tolerate any of the long-acting patches, which I think are all synthetic too, and think that continuous release products are logically the quickest way to build tolerance, down-regulate receptors, and get you addicted. I’d rather PRN, take as needed.

    I guess Big Pharma makes more out of their analogues than their nature-identicals, or the marketing for Tram wouldn’t be so intense. UK drs are always fretting over possible addiction to natural opiates, but happy enough to script toxic analogues instead – and who’s to say those aren’t just as potentially addictive as the naturals?

    L. X

    Liked by 1 person

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