Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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PatientsLikeMe (

Discussion in 'Lifestyle Management' started by JT1024, Jan 6, 2010.

  1. JT1024

    JT1024 Senior Member

    Has anyone tracked their symptoms/treatments on

    I have been on this site for some time. It is especially helpful for tracking symptoms and treatments. It sure would be great if Phoenix Rising and the PLM FM/CFS communities could link up.

    I've included the link below as well as an overview of the company. The clinical content from the members is no where near as advanced as it is here but the tracking mechanisms sure work. There is so much to learn and share to help everyone GET WELL. Please check this out!!

    Our Promise
    PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.

    About PatientsLikeMe
    Founded in 2004 by three MIT engineers whose collective experience spans from running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

    In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen's care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We're here to give patients the power to control their disease and to share what they learn with others. We're here to help you.

    Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data ( and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.

    Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure. For more information, read our privacy policy.
  2. Jenny

    Jenny Senior Member

    XMRV+ people on Patientslikeme

    Patientslikeme is a website that enables people to track their symptoms and treatments over time. There's a section for FM/CFS with several hundred members. Most have been diagnosed with FM and hardly anyone mentions ME.

    What's particularly interesting is that quite a few people on this site say they are XMRV+, and you can look at some of their characteristics by using the tools on the site.

    I did a quick analysis of these, but on checking with the agreement I made when registering on the site, it seems that I've agreed not to use the info externally so can't post it.

    Anyway you can get data on the diagnoses of people with XMRV and their ratings of symptoms and treatments, length of time ill etc.

  3. Wow Jenny what a find! Thanks for posting...

    Rachel xx
  4. Mark

    Mark Former CEO

    Sofa, UK
    Looks amazing - why has nobody picked up on this yet?...

    PatientsLikeMe Links:

    TED Video about PatientsLikeMe:

    All Symptoms:

    About Fatigue:

    A friend told me about PatientsLikeMe a couple of weeks ago, and I'm surprised this thread didn't generate more discussion, so I'm reviving it...perhaps it got lost amidst all the recent exciting news...

    This TED video explains what PatientsLikeMe is all about, how it came about, and what they have been able to do with it - I hope it will motivate people to see that there's more to PatientsLikeMe than first meets the eye, as it did for me:

    The first couple of minutes contain a few comments which might raise alarm bells with some of us (they did for me), but once the presentation gets going all that is put to one side and you realise that this project is potentially revolutionary, and thinking along exactly the same lines that many on this forum have been thinking about. The sort of things we have been thinking about in relation to using polls and patient surveys to conduct our own research - well, all that stuff is what PatientsLikeMe is all about. They also seem to have the same revolutionary attitude that has been forced on the ME/CFS community - trying to usurp the traditional field of healthcare by using powerful direct web-based information to get direct feedback in a way that was never possible before, and thereby jump forward to a new improved model of health research where all the hour-by-hour patient data is right there, ready to be analysed.

    I think it's a fantastic fit for us, and the only reason I can see for not jumping in there and trying to move to get the entire ME/CFS community to log all their details with PatientsLikeMe, is that we were in the process of doing something similar ourselves, and we might want to keep control. If that were the reason, though, it would be a mistake, because PatientsLikeMe is already quite sophisticated software, and we couldn't hope to be better than it will be...

    I think the first, most exciting possibility, is illustrated on the video where they do some Cluster Analysis of patient groups. With ME/CFS, if you had a large, detailed, patient-entered dataset of symptoms, you would expect that clusters of symptoms would jump straight out of the graphs. If CFS is indeed a heterogeneous condition, you would expect to be able to pull out the different subgroups from this sort of analysis. The exciting part of this is: I would bet that this very specific study has never been done properly before. I'm sure people have tried to analyse and subdivide CFS, and Kerr has identified 7 genetic subgroups of course, but I would doubt that anyone has been able to do so with a dataset similar to what PatientsLikeMe could provide, and anybody who's researched this in the past would have been bound by their definitions of what ME/CFS is, which rather begs the question.

    As an aside, note that the definitive thing about doing science this way is that you are taking the patient's word for it when they describe their symptoms. The only data is what patients enter directly on the computer, with no middleman. To a medical researcher or practitioner, I expect this methodology would be considered to be a fundamental flaw in the study, because such people are well trained to understand that you can't always believe/trust what a patient reports. To those of us educated by our illness, and who have reached the conclusions I have, this methodology would remove the fundamental flaws in most ME/CFS research (at least), because we are well trained to understand that you can't always believe/trust how a doctor will interpret your description of your symptoms....they view it through their own preconceptions. We now have the potential to remove that major source of error and bias - the researchers themselves!

    Yes, I'm very excited about the possibilities of all this!

    Here are a couple of interesting links from PatientsLikeMe:

    Fatigue is the number one symptom reported on the site - for all medical conditions. So, not a very good characteristic definition of "CFS" (sic) then, is it?...

    And here's a breakdown of the level of fatigue, and a list of all the treatments being tried by people who have on a treatment and you can see how effective it was, what dose they took, what side-effects are most common, etc...

    For example, most common side-effects of Diet and Exercise as a treatment for Fatigue are "Tired and Sore" and "Vertigo" don't say!...

    So: does anybody else think we should get in touch with these people, and try to encourage all the ME/CFS organisations to get their people to sign up to PatientsLikeMe? Does this thread need a new thread title in order to attract more interest?...
  5. FernRhizome

    FernRhizome Senior Member

    Actually, by coincidence, I just started a profile there yesterday. I was delighted to see it's already updated for XMRV testing! But otherwise it is pretty minimal regarding symptom lists.
  6. JT1024

    JT1024 Senior Member

    Patients Like Me (aka PLM)

    I continue to track symptoms and treatments on PLM ( but find the discussions/content much better on this website.The forum on PLM is not organized anywhere near as well as it is here.

    When I first came to this website, I sent a message to Cort from the sites main page mentioning PatientsLikeMe and the tools available. He may not have gotten that message. The team at PLM is extremely open to suggestions and I've had discussions with a few of them, including one of the founders.

    I still think PLM provides great tools. If more patients associated with the Whittemore Peterson Institute and other key providers in CFS/ME/FM (Cheney, Enlander, Mikovits, etc) tracked symptoms/treatment information on the site, it would be beneficial to us all.

    My brain is really mush right now but I would love to see more people utilize the PLM site. Someone from this website had asked about a particular medication she was prescribed and she wanted to know more about it. I was able to send her a link to PLM's data on that particular drug. All the information was provided by patients. Members can read details about treatments or PM other members for more information.

    Fern, if you have a symptom or treatment that is not listed, you can add them. PLM does try to prevent duplicates to preserve the data that is collected.

    Anyone reading this, please also check out PLM - at least for tracking symptoms and treatments!!
  7. Mark

    Mark Former CEO

    Sofa, UK
    No doubt the forum discussion on PLM doesn't approach the quality here, but heck, who does? Can't hold that against them...

    This is a key point, and one I was hesitating to raise. Because I meant to mention this before in the context of the Patients Survey being developed on this forum, and failed to do so, and I feel a bit guilty about that now. What I've been meaning to say is that the obvious solution to me is to allow patients to enter their own new symptoms if the symptom isn't listed. So if Orthostatic Intolerance isn't there, just add it. The site may not look terribly rich at the moment, but that's up to patients to add more symptoms. It's very deceptive - at first glance it looks merely like a simplistic health-based social networking site, and its approach seems very over-simplified. But watch the video and you realise that its genius is its simplicity: Patients have Symptoms and try Treatments and observe consequences, hour by hour - log all that data and compare the stats. It's a very simple approach that codes no medical model into its structure - but I've been trying to think what this approach misses and frankly I can't think of anything to add. Genius simplicity!

    This approach has many benefits, but one scientific one is that you aren't pre-defining the possible parameters/symptoms; the patients do that themselves, so no preconceptions enter in to bias your research. Of course you (ideally) then have to monitor the symptoms people create, and make sure there aren't multiple versions of the same symptom with slightly different spelling, but I presume PLM has that issue under control somehow.

    Amen to that! And those with senior roles in ME/CFS groups, please consider hooking up with PLM and pushing it to your members, we could potentially take a sudden massive leap forward in understanding if lots of people do this.
  8. hensue

    hensue Senior Member

    If I counted right on patients like me 32 were xmrv positive.
  9. FernRhizome

    FernRhizome Senior Member

    Mark, thanks for letting me know I can add symptoms! I didn't have much time to look around when I was on the site. So at some point in the next few weeks I'll go in and do a more careful review. It looked like a lot of work for someone like me who has been ill 17 years. I actually found it hard to answer some of the questions. For instance I was ill and so many many specialists (doznes) before I got a CFIDS diagnosis 5 years later. But the survey questions didn't really allow for that amount and level of detail. And to go back and recreate the 17 years of treatments I've tried! Whew!!!! I think with XMRV (if I am positive) it will be a cleaner easier thing to track in the future (we all hope)!
  10. Kati

    Kati Patient in training

    I think it would be great to be able to track blood work over time- with the possibility to track whatever test we'd like- This is interesting as we can correlate blood work with treatments- for instance ferritin levels and iron intake.

    I would also suggest (maybe it already exists, and don't know about it) e-mail reminders to enter our symptoms with the interval of our choice. Brain fogged like I am I may remember once every 2 weeks, if I'm lucky.

    Thank you.
  11. Jenny

    Jenny Senior Member

    We've talked a bit about this on other threads and JT1024 has mentioned it several times. This site is just amazing! I registered a while ago.

    The tools are just what's needed (though of course most people are on so many different treatments it'll be hard to say which are helping over time.)
    Interesting that gluten free diet has high ratings, though only a small number of people have tried it. Seems that getting a great dane is good for anxiety!

    My only disappointment with this site is that the closest thing to our illness is the category 'fibromyalgia and cfs'. I would never describe my condition as CFS. No mention of ME. And most of the people in that category seem to have FM as their primary diagnosis. Also the emphasis is on the effectiveness of various treatments for pain, stiffness and fatigue. Many of us get all these of course, but I would say my worse symptoms are the extreme flu-like malaise and 'poisoned' feeling and the awful vertigo I sometimes get and these aren't mentioned in the pre-set categories.

    The main treatments evaluated are pain medications. Nothing much on anti-viral drugs (valcyte and ampligen don't appear for example).No-one's mentioned Rich's methylation protocol though B12 is there. Low-dose naltrexone's been evaluated by a handful of people, with positive ratings. Some of the treatments we're talking about currently (eg Savella (sp?) are rated by over a hundred people.

    But there are over 700 people on there charting their progress.

    Using the tools on the site you can do all sorts of things. I looked at the XMRV positive people and did an analysis of their symptoms, diagnoses etc. I was about to post it here but then realised that when registering you agree not to communicate any info from the site externally. But anyone can register and do these analyses.

    It would be great if more ME people registered - I think the reason it's mostly FM people at the moment is that they have only recently changed this category from FM to FM/CFS.

    They do offer email reminders Kati.

  12. FernRhizome

    FernRhizome Senior Member

    Maybe you could e-mail the site and ask them to ADD ME to the diangosis name. Though I am in the U.S. my case resembles the UK's M.E. cases. And since we can add in symptoms you could get your symptoms covered as well? ~Fern
  13. JT1024

    JT1024 Senior Member

    I already put the request in for the name change Fern!

    Also, there are over 11,000 patients registered. Not all are tracking symptoms/treatments but the more that do, the better off we all are.

    ~ JT1024
  14. JT1024

    JT1024 Senior Member

    Please take a moment to check out this website: While it was originally developed for ALS (Lou Gherig's Disease), it has expanded to include many "life changing" illnesses including FM/CFS.

    This is an extremely valuable tool (IMHO) and other members on this site have agreed.

    It has been on other threads and this is one great site for us all to capture our symptoms, treatments, and outcomes. We can even view a comprehensive report of what patients report on this site as well as PM anyone we want to contact.

    We have been through a lot of crap and traditional medicine is limited in what it has provided. This is one tool we can use to show what works, what doesn't, and we mean business!

    Just my two cents...

  15. Samuel

    Samuel Senior Member

    What is it with sex ratio and patientslikeme?

    I have not signed up or even gone beyond this one page, but 94% female in a population of about 12,000 is surprising.

    I like the concept of patientslikeme. Does it define diseases by you selecting that you have the disease? That would be a serious problem unless it uses, for example, Canadian. (Possibly completely useless because most people say "I'm tired too.") Or does it cluster symptoms?

    I do hope that it does not stop our own efforts, however. We (by which I mean Kim et al.) put a lot of effort into the symptom survey, and we have a lot of knowledge and possibly a more coherent, or at least different, population. We also know one another.
  16. JT1024

    JT1024 Senior Member

    Hi Samuel,

    Patientslikeme is not specific for one illlness and it is not restrictive to the people posting to its site regarding the criteria they were diagnosed by. I find the website is extremely helpful in its ability to track symptoms and treatments. I believe the guys the started the site are well aware of the difficulties in diagnosis and treatment for most of the illnesses represented. While Patientslikeme has a great concept, not all "members" are active.

    One option is to contact the founders directly. You have that option on Patientslikeme and I have done so...repeatedly. I do not post on the forum much because most of the posters are no where near the caliber (intellectually speaking) of the posters on Phoenix Rising. I use the symptoms/treatment tools for tracking and to learn what others have experienced regarding treatment. I know which patients are knowledgeable and consult with them pretty much exclusively.

    Regardless, all patients deserve to be heard. While some are more educated about their condition and anatomy and physiology, that should not be a barrier to effective treatment.

    ~ JT
  17. Jenny

    Jenny Senior Member

    Hi Samuel - as JT says this site's usefulness is in the tracking of specific symptoms and treatments. We don't know whether people on the site really do have FM or CFS of course, but people are asked about whether they have been formally diagnosed. The same could be said of people on this board or other groups of patients. But focusing on specific symptoms and how they may change or not with certain treatments to some extent lessens this problem.

    I don't think there's much overlap with your questionnaire. You's sounds as if it has a lot more detail of symptoms. And one of the problems with the patientslikeme site is that because it started for just FM patients, most people on there have FM rather than ME. The main symptoms you're asked to track each week are pain, fatigue, stiffness and sleep. I think this may be the reason that there are so many women there - the sex ratio for FM seems to be even more skewed towards females.

  18. Samuel

    Samuel Senior Member


    Here is an old idea I was too sick to implement and commentary on

    === clustering ===

    The idea of clustering as I propose it is that there are
    such things as diseases (and spectra and what might be
    called fields or spaces of diseases, and pathologies that
    correlate) -- not just symptoms by themselves. We can
    achieve insight by looking at patterns.

    That is, people don't just get uncorrelated symptoms out of
    the blue; instead, they get biological abnormalities --
    underlying pathology -- that tend to cause symptoms and

    This is important because those symptoms and signs alone
    will lead you astray. Also, if you tie them to preconceived
    diagnoses you perpetuate errors by the medical

    For example, if you look at fatigue and treatments for
    fatigue, you don't get to the root cause (e.g. pathogens,
    toxins, etc.). Many things cause fatigue. It is not a
    specific and sensitive symptom of a single pattern of
    biochemical abnormality at the level that we need. It's
    just that your reticular activating system (or whatever it
    is) is not working. Well, there can be lots of reasons for
    that, including adenosine issues and physical trauma. It's
    pointless to think of that as the disease to pay attention
    to. You can sometimes "fix" it with stimulants, for
    example, but if you have oxidative stress and mitochondrial
    damage, there are huge risks.

    And we know that if we just have a category for "CFS" we
    will get "I get tired too" people.

    === denialists ===

    We all know that, of course. The denialists rely on
    avarice, amorality, and stupidity to promote the idea that
    "fatigue" is a concept below which it is not necessary to
    look (except in vague and nonsensical ways that are useful
    for their careers like beliefs and deconditioning and

    This is one reason they use "fatigue", CF, and CFS
    interchangeably. And it is one reason why they don't pay
    attention to other symptoms and signs and water down ME.
    They promote the idea that fatigue is either a disease by
    itself, or a normal human experience blown out of proportion
    (which they promote as a neo-Freudian disease by itself).

    But it is just a symptom. And the character and seriousness
    of our "fatigue" is different enough that it deserves a
    different word anyway.

    Even if we do so knowingly, we should not ourselves look at
    signs and symptoms alone.

    === ===

    The following is based on a priori impressions about that
    website. I would have to play with for a
    while to see how it works, but I'm getting the impression
    that it doesn't cluster symptoms, given this thread.

    What this means in practical terms is that treatments will
    be all over the place. They will not be appropriate for
    everybody. Hidden patterns will be obscured. Rare diseases
    will be obscured. Diseases that exist but have not yet been
    discovered remain undiscovered.

    This is the problem that I see with as I
    understand it.

    === the idea of bottom-up clustering of signs and symptoms ===

    But if you programmatically infer that there is a cluster of
    signs (e.g. test results) and symptoms in the data, you can
    be more confident that there is underlying pathology that
    underlies the cluster, and start to make automated
    hypotheses. This can be done without preconceptions or
    definitions of any type.

    You don't even have to say what you have been diagnosed with
    or go to a special place on the website. It might add a
    little information if you do the former -- it's the
    equivalent (in the algorithm) of another sign or another
    symptom -- but it is not necessary.

    The automated hypotheses won't have names at first. They
    are just "cluster 257895" or whatever. Names are and should
    be labels for reality, not the other way around.

    There is a flaw in most doctors' thinking about disease:
    they think that a diagnosis is a thing, but it is reality
    that is the thing and a diagnosis is just a label to use as
    a handle to talk about it. The bottom-up approach does a
    needed end-run around "labelist" (for lack of a better term)
    attitudes and perceptions.

    Once you have enough data, you can then look at your
    clusters and don't need to worry about the people who are,
    for example, just tired all the time vitiating your
    experience navigating the data.

    === commentary ===

    To me, this is really essential for our diseases. I don't
    think will be very useful for me without
    something very similar to what I propose above.

    Sure -- if you have restless legs you can look up treatments
    and that would be useful. Or sinuses. But that is just
    treating, for RLS, probably a specific pathology (at a
    medium level) and, for sinuses, a small set of symptoms
    caused by any of several biomedical abnormalities. It will
    not get at any root causes. For example, with sinuses,
    consider the role of fungal infection. I have not checked,
    but it is possible that those do not show up strongly in the
    data in the current scheme, even if they are the root cause
    for you.

    I don't think ME/CFS (if they were to use that diagnosis as
    a symptom- or sign-like thing) would be useful either unless
    it were based on strict Canadian. Likewise for the part of
    the website devoted to it. The data are corrupt unless you
    use strict Canadian or do bottom-up clustering.

    === back to ===

    Of course will still be useful for many
    diseases. Many diseases are not denigrated, the waters have
    not been muddied, they are not multisystem, doctors know
    better how to diagnose them, there is better education about
    them, research informs the diagnoses, the public is aware of
    them, and many other things obtain that our diseases lack at
    this time.

    I did see the TED talk and the people
    might or might not have thought about this, but, for
    whatever reason, apparently (at least according to this
    thread and the TED talk IIRC) they have not done it yet.
    Please verify.

    === more commentary ===

    Some work has been done in this area for "CFS" and FM, but
    the one study I saw was small. They didn't start with
    symptoms and go from there; they used definitions IIRC.
    They ran a bunch of diagnosed people through an
    off-the-shelf statistics program to see if there were
    natural clusters.

    This is not nearly ambitious enough for me. It is not what
    I want to see happen. What needs to happen IMO is what I
    propose above.

    Of course, Kerr clusters stuff. Perhaps mostly gene
    expression. I do not know what algorithms he has tried.

    The sign and symptom questionnaire is not due to me. A lot
    of people are putting a lot of work into it on this site. I
    think it's worth continuing.

    It can be used to do some of what I propose if there are
    enough of us who participate. It's not difficult to run
    statistical software that will cluster symptoms. I'm sure
    we can get that going once we have enough data.

    In short, is promising and I wish it
    well, but speaking just for myself, I would say that it will
    not be useful unless it does bottom up clustering or uses
    strict Canadian. I have other issues and areas of interest
    with it, but they are less important here.

    === that's it, take a break ===

    I'm fogged, but I hope the above sparks a little interest.

    WillowJ likes this.
  19. JT1024

    JT1024 Senior Member

    Hi Samuel,

    I agree with your clustering theory. I am in contact with the President of patientslikeme (aka PLM) and have asked him what he and his research team think of your clustering/bottom up approach. The three founders of the organization are not from the medical establishment and are MIT trained engineers with extensive experience in a variety of areas. Because they are "outsiders", I think they will be able to see the value in the bottom up clustering. Perhaps you should contact them yourself! They really love to hear from patients.

    Ben Heywood is very busy but I usually do get responses quickly - sometimes the same day, sometimes, within a week. The PLM team as a whole is extremely busy and have taken on quite a few patient populations. They are also dedicated to helping patients.

    You might want to check out the links on Jamie Heywood's page: Jamie is the Chairmen of the company and the one that presented at TEDMED.

    You've obviously put tremendous effort into your work. I need to investigate the sign and symptom questionnaire since I'm not aware of it. Would it be in the projects area?

    I am also exhausted and need sleep.

    Thanks again for your post!

    ~ JT
  20. Samuel

    Samuel Senior Member

    Maybe somebody should put a link to the questionnaire thread here and vice-versa. Or perhaps just to my previous post. I cannot do so now.

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