Patients Like Me

[eve789]

I'm a fan of Patients Like Me, a Cambridge, MA company that has taken several patient communities by storm.

I don't know if there's been previous discussion of this on this forum (if so, I was not able to find much). They are doing for crowd-sourced, phenotypic research what companies like 23andMe have done for crowd-sourced, genetic research.

Again, I'm a total newbie here, but I've seen a lot of exchange of information about what kind of treatments have and have not worked for different patients with different symptoms, but no attempt to systematically collect or quantify the observational data that comes from all of this self-experimentation.

Patients Like Me has tools for this, and has started collaborating with researchers to produce scientific publications (see this PLM study on ALS in Nature: http://www.nature.com/nbt/journal/v29/n5/abs/nbt.1837.html)

Patients Like Me has a disease category called "CFS", one called "Fibromyalgia," and a combined CFS/ME/Fibromyalgia forum. One cannot choose "ME" as a disease on one's patient profile. My sense from looking at the CFS page: http://www.patientslikeme.com/conditions/27-chronic-fatigue-syndrome and the patient forum: http://www.patientslikeme.com/forum/fibromyalgia/topics is that the typical, big tent definition is being used, and one that may not be as helpful for research.

I think we should petition Patients Like Me to:

1) Create a disease category called myalgic encephalomyelitis which patients can select
2) That the International Consensus symptoms being explicitly used in the description and not the more vague: Chronic Fatigue Syndrome which may also be known as Myalgic Encephalomyelitis (ME) is characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer.
3) That they use language that explicitly distinguishes CFS from ME in their description
4) That if they manage to do it, we all record our symptoms and experiments with conventional and alternative medicine there
5) Then maybe one day, top ME researchers will be able to collaborate with them in the rapid testing of potential therapies.

Email Ben and Jamie Heywood:
bheywood@patientslikeme.com
jheywood@patientslikeme.com

 

[Jenny]

Hi eve

There have been a few discussions on here about Patients Like Me. See for example:

http://forums.phoenixrising.me/index.php?threads/patientslikeme-www-patientslikeme-com.2511/

A year or so ago they started to include the term 'ME' (previously it was CFS/FM), but as you say, they don't have a distinct category. I asked them about this a couple of years ago, but they didn't do anything.

Good idea to have a petition!

Jenny

 

[eve789]

So I just set up a petition here:

http://www.change.org/petitions/pat...parate-category-for-myalgic-encephalomyelitis

Before trying to drum up support for it, I'd love anywhere here who is interested to help edit or offer suggestions for the supporting text:

We ask that Patients Like Me create a separate category for Myalgic Encephalomyelitis consistent with the International Consensus Criteria, and that it be distinguished from Chronic Fatigue Syndrome and other disorders by its hallmark characteristics: neurological, immune, and energy impairments, and post-extertional exhaustion, which worsens the symptoms of those impairments.
Patients living with these disease suffer severe impairment, disability, and occasionally death. This is a devastating illness that is under-researched, and for which there is no standard diagnostic test, treatment or cure.
Research into biomarkers or treatments have been hampered by studies that use either overly-inclusive or inconsistent diagnosis protocols. The result is that in addition to ME, many of the subjects studied may be suffering from other sources of long-term fatigue, such as depression, sleep disorders or post-viral fatigue.
Patients Like Me has the opportunity to be at the forefront of research into this disease by engaging with an active and informed community of ME patients, who are already working with doctors around the world to pursue novel treatment therapies suggested by research in both conventional and alternative medicine.
Help us to quantify and create a record of our symptoms and treatment experiences. Help us to find a cure.

 

[taniaaust1]

Maybe add into that as they probably dont realise, that unlike CFS, ME is historically known for it's epidemics among communites (or something like that.. to make them realise its its more of an actual disease).

Research into biomarkers or treatments have been hampered by studies that use either overly-inclusive or inconsistent diagnosis protocols. The result is that in addition to ME, many of the subjects studied may be suffering from other sources of long-term fatigue, such as depression, sleep disorders or post-viral fatigue.

That part is all making it sound like ME people just have all the same symptoms people think CFS people do and you here are talking about CFS studies. This part isnt at all making it sound like ME is different to CFS .. hence I suggest to leave it out.

Maybe in your post.. you could focus more on the kinds of symptoms often seen in ME.. eg seizures, paralyses, loss of sight, vasculitis, tremors , postural orthostatic tachycardia syndrome etc etc .. There are so many symptoms ME people get which arent usually connected to CFS, which you could use to help distinguish, they are probably different illnesses and not all that alike... along with them having different definations and ME happening also in outbreaks.

best luck.. i hope you get the petition going.

 

[Valentijn]

Before trying to drum up support for it, I'd love anywhere here who is interested to help edit or offer suggestions for the supporting text:

Hi Eve. It's very hard to read the text you wrote against a dark background. I suggest sticking to the default text color, and just using the "Quote" function.