Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Proposal: Create a Comprehensive Treatment Review Program

Discussion in 'Create A 'PatientsLikeUs' ME/CFS Treatment Program' started by Cort, Apr 27, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Thanks JT - at some point when we feel we have our act together the plan is to contact the major organizations - WPI, CAA, IACFS/ME as well as major UK organizations and see what, if any, role they would like to play or any resources they would like to offer. The IACFS/ME would be a great resource for research inputs as would the CAA (particularly since they are building a databank on the research end and Suzanne Vernon is big into data mining - they have a similar project going a different level, I believe), the WPI is, from what we hear, working overtime on XMRV (actually everybody's working over time - we hear that the CAA is as well :)), but it would be spectacular if they wanted to play a part. Certainly they're very innovative technologically and so committed to the patients.

    We'll certainly explore all feasible means of gathering expertise and funding (including applying for grants)
  2. JT1024

    JT1024 Senior Member


    Regarding security concerns:

    1) Patient Access Free - Access can be locked down so only patients can view patient data

    2) Access for a Fee - Access by researchers, drug companies, doctors, etc can be made available as defined by PR. For example, a report exported to a file could be provided for a fee. More extensive access could be made available based upon a fee structure to be determined.

    3) Unique Patient Identifiers - By assigning a unique patient identifier to each patient entering data, data made available to non-patients would decrease the risk of exposing patient identifiable information to non-patient groups. This functionality is already used extensively in industry. Most healthcare organizations utilize a Master Person Index (MPI) in order to link data from disparate sources to one person.

    More ideas to come and much to be fleshed out!

    Cort, tracking all these thoughts and ideas is a lot of work. If I didn't need to work full time, I would love to help. There are a lot of great writers on this forum and I bet more than a few have experience writing grants or proposals.

    Love this idea! ~ JT
  3. Gerwyn

    Gerwyn Guest

    hi Cort

    I think i can get hold of a neurocognitive questionairre and Agree that the CCC algorithm would be inclusive of all the symptom profile and should at least reveal some patterns
  4. OverTheHills


    New Zealand

    I'm horribly relapsed the last 5 months but just want to echo Otis' enthusiasm and expand on two of his suggestions

    1) getting Dr Leonard Jason's team at DePaul involved early on. I don't know if you had time to watch the recording of his webinar(which is excellent) but I'd say he is a key contact for you at this stage of a very big, ambitious project. He is already developing questionnaires for CCC to operationalise it, and he might be able to share some of this work with you. That would mean our data would be more useful in any future research project.

    He may even have some smart ideas on uses of the data that will help us immediately or the research effort in general. Is it too optimistic pehaps to imagine getting a grad student to work on this for their PhD?

    2) Software - never reinvent what you can get off the shelf. Getting a copy of PLM to modify to our needs could be a great low-risk approach to deliver good bang for your buck at early stage, if they are prepared to play ball.

    :In bed:OTH
  5. Cort

    Cort Phoenix Rising Founder

    Sorry to hear about the relapse OTH! And thanks for your support.

    GREAT idea on Dr. Jason (and the grad student - what a fantastic thing that would be :) Great idea :))

    Jerry is looking for and committed to using off the shelf software. Thanks for the ideas.
  6. Andrew

    Andrew Senior Member

    Los Angeles, USA
    A few more thoughts.

    Before you posted this, I was thinking of creating a list of medications that have actual studies done on CFS patients. Because I'm too sick to do this myself, i was thinking of having a wiki where anyone could upload a medication and citation(s). The information would also cover whether it was a double-blind study or not. This would not contain anecdotal recommendations. It would have to be a study of a group of patients. And as for anecdotal recommendations, they could be handled a differerent way because they require more tabulation.

    Here's an example of a tabulation project.

    Here is a medication "database."

    BTW, it would make for easier reading here if instead of quoting an entire message (when it's not needed) is to simply quote the first few lines.
  7. Cort

    Cort Phoenix Rising Founder

    Here are some comments from someone from a PM

  8. Cort

    Cort Phoenix Rising Founder


    Thanks for thoughts Maarten,

    Agree far too much for the PR participants given debility; we'll incorporate Otis's ideas in the overall plan with the programmer/s.

    I'll pass on the idea about FreeBasic to Jerry (glad to hear its easier than C#!) and check it out myself (which, given my ability to program doesn't mean much)

    This was interesting:

    I agree that there is a great advantage to being able to tweak, extend and alter as we wish - a great advantage.

    How about the statistics end - if say we were going to do rigorous statistical analyses (patterns recognition, anova) - is that kind of stuff available on the web?

    I'll pass your ideas on.
  9. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Considering our limitation, don't you all think the data should come before the program. We could get so bogged down coming up with software we don't get any information to use. As long as our data is available in a tabular or separated format, it can be imported into any database system. So maybe a first step would be to decide what data we want and what type of conclusions we wish to draw from the data.
  10. Cort

    Cort Phoenix Rising Founder

    Yes, these are three important intermingled issues - deciding (a) what data we want to gather and then (b) how to collect it, store it and present it effectively and (c) how to analyze it.

    I'm just plodding with my great interest but very limited experience with these issues.

    The Community profile post and the Brainstorming posts has some preliminary ideas on what kind of data to gather (which I need to update). The questions we want to ask will, of course, inform our programming and statistics needs. So in an important sense those are first altho I think we should certainly proceed on all tracks as they we do have some ideas.

    There's the programming issue - of putting together a PatientsLikeMe Plus site together. Several estimates I've gotten suggest it would take about 400 hours of programming time by a professional programmer to do a PatientsLikeMe (minus site actually:)) - which does make me worry about our ability to get it up and running. Certainly if we could do it - it would be hugely helpful in terms of our ability to tweak it later as we surely would want to as new ideas present themselves and new findings come out.

    However the form ends up in the end I hope there are people in the community who can educate themselves in the program and help to tweak it when necessary. I'm certainly going to try my best. I know my talents in that area are limited, however.

    The other issue is the statistics end. I believe most computer languages have basic statistics functions we can easily use to get averages, proportions, etc. which we can use to visually display (via piecharts, etc.) interesting, if not statistically rigorous information.

    Gnumeric provides much more advanced statistics. I'm always wary about the difficulty of transferring programs to the web. How difficult would it be to hook up a function in gnumeric to datapoints in our relational database and then display it on the web? Is that simple, complicated but doable, problematic???? statistics is certainly our weak point in this venture at this point - thanks for your insights :)

    Absolutely we will wait until we have clarity with these issues before we jump forward. I think we're more at the beginning of the beginning than anything else. We're in the exploratory phase.

    I'm going to start advertising this project more and see what that turns up.
  11. oerganix

    oerganix Senior Member

    Forgive me if this is a dumb question, but if all this input is self-reported by patients, what's to prevent the influx of fake patients reporting results for drugs or treatments just to skew the results in favor of said drug or treatment?

    And maybe doing it more than once?
  12. lucysun


    stopping treatment - anecdotal info can be useful as well

    hi cort,

    another thought - when patients stop a treatment certain symptoms may go away or re-emerge - this can offer insight on what the treatment was addressing.

    for example, after withdrawing from a ssnri someone may find that they no longer need 5 cups of coffee a day to stay awake - perhaps that med was making them overtired! but they didn't ever associate the med with being the cause of the over tiredness while on it.

  13. JT1024

    JT1024 Senior Member

    Another thought for you all....

    Rather than start from scratch....

    What about a collaboration between PR and PLM and PATIENTS?

    It is quite obvious that many on PR are highly educated in the key areas of medicine, research, software programming, statistics, etc. Rather than work independently, why not be collaborative?

    PR's forum is great, PLM has symptom/treatment functionality...

    The two groups working together could "be the change" as Koan states! The talents of the participants of this forum are nothing short of phenomenal.

    Any more thoughts?
  14. Cort

    Cort Phoenix Rising Founder

    Thanks Nancy. I was just talking to somebody who improved greatly AFTER he stopped doing a very common (and usually thought innocuous) treatment for CFS. There are all sorts of permutations this project could take. thanks for the idea.
  15. Cort

    Cort Phoenix Rising Founder

    That would certainly be advantageous in many ways. We have an idea here with some clear differences and similarities to PLM. CFS would be a nice study ground for an approach to looking at treatment efficacy in more poorly defined disorders where subsets are likely. As diseases like CFS and even FM and MS and others are studied more it becomes clearer and clearer that there are different types of disorders hidden within these broad categories. They obviously have an enormous amount of technical proficiency. We have a group and forum setup that they might like to work with. We at the 'looking at all options' stage. :)
  16. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Cort

    Lots of great ideas, hugely amibitious but still doable, and with great potential to adapt to future needs! I would like to point out that the hardest part of any programming effort is to work out what you want, and what you need. Analysis is critical in any approach other than rapid prototyping, and even then there is a huge need for informed input on the prototypes. This is the stage where it is probably most likely that things will go wrong.

    I would like to propose that some part of this project be dedicated to tracking XMRV off-label treatment. Perhaps a specific database for the DOCTORS of patients, which of course they could be refered to by their patients. Maybe this could be done just by a doctor-only forum for XMRV treatment, maybe as part of the combined project, without even the database, but a database would help. This could enable medical professionals to exchange information, ask for advice and report results. If you are considering a staged production of this project, I would make this a priority in stage one, or even the entirety of stage one. It would enable the doctors of the heroic or just desperate patients undergoing XMRV treatment to exchange info easily, and also help provide data (with consideration to data consolidation and privacy issues) for any applications for grants for a proper clinical trial of XMRV treatment. I would defintely allow this facility to be extended to doctors who are being treated for XMRV, even though they are patients.

    I was trained as a programmer several decades ago, before we even had Windows95. There are many millions of CFS patients on the planet, and many must have been professional programmers, we have a huge untapped resource. They should even be easy to contact, since most will be on one of the major forums or receive online newsletters etc. It is also not an issue as to the language - simple is better to allow for brainfog, but most programmers will have no trouble adapting to a new language, CFS permitting. It is not the programming language that will create problems, it is the CFS itself.

    Alex Young
  17. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    First off. I think this is a great idea. I was actually a little concerned when the XMRV+ questionnaire was being developed (what ever happened to it?) as I felt it was a real waste of an opportunity to gather patient generated data on the symptoms of ALL forum members.

    Getting from A (the idea) to B (the product) is the problem (he says stating the blindingly obvious)

    What I would suggest, as others have, is that there is a project itself in developing a rigorous specification of what is required before even thinking about its implementation. I appreciate that implementation, particularly cost, is a major issue but having a well thrashed out spec will only help to determine the feasibility more accurately.

    There are obviously many issues to consider as regards the spec, e.g:

    The questions asked will determine the data collected so - do we have an agreed description of the illness and its symptoms (CCC seems to come closest but is it truly fully representative and complete?)

    Can we collect all the data needed without overwhelming or discouraging participants - there may have to be a trade off between ease of use and comprehensiveness;

    Security, privacy and data integrity are fundamental;

    How do we standardise test methodologies and results? many in the UK for example are not offered any tests and low/high normal is interpreted as normal but may in fact be part of the ME problem;

    Lots more of course which I need to think about.

    But would a first stage be to set up a project specification team to list the desirables and thrash out the issues, in consultation with other forumites? The 'rapid protoyping' could be done as a pen and paper exercise up to pseudocode before technical implementation needs to be considered.
  18. Cort

    Cort Phoenix Rising Founder

    Thanks Alex and Marco for your valuable suggests. A rigorous early analysis is clearly called for. Let's create a team/break up the project up into its parts and develop a plan. Anyone who wants to be a part of that let me know.

    we need to figure out the right venue to do that and we do have some suggestions from the other thread.

    Thanks for your help.
  19. OverTheHills


    New Zealand
    Spot on. An initial analysis/requirements project is exactly the right thing to do. You will get a better result this way, more projects fail from lack of 'thinking' than lack of 'doing'
  20. Julia Rachel

    Julia Rachel

    I think this is a noble, understandable and note worthy approach and I commend your idea. However, I feel restrictions by the AMA, will prevent progress with such a project unless it is done in a clinical setting. There is potential for lawsuits to hold this project up, due to various licenses needed to pursue such a project; if not done within legal parameters. I believe (my opinion only) that Licensed Physicians, Scientists and Researchers need to be implementing these future systems you mention; and I believe these will definitely be instituted through medical and political reform in the near future. For now, I believe our time, energy and donations should go towards advocacy, research and outreach programs to help those who are actively coping with symptoms. As far as the program you mention/outline, there are patient privacy rights to be considered plus a greater understanding of biological and medical training needs to be understood that can only be obtained through intensive education and practice which is essential to gain perspective on this and all diseases. Becoming a board certified physician and specialist takes every ounce and energy and time of a 10+ year process, if not a lifetime of understanding. To skip this educational process in order to set up a medical research project, the understandings and needs of the biological processes at hand needed for such a project involving patient procedures would lack imperative substance. I feel Pheonix Rising has created an incredible network for disseminating information, for sharing opinions and viewpoints and for getting information circulated about Fibro/ME/CFS/CFIDS. THis accomplishment alone is an incredible gift and has furthered advocacy for our disease. I believe that the more we unite as a group through our available web site forums, the more shifts and progress that will be made towards progress for our disease. Cort, you have made an invaluable contribution through this site and I am very grateful for your work, this site and the information provided. Getting back to your ideas....It may be that a committee will be formed at some point through one of the newly formed institutes and that your ideas and plans will be put into place by physicians, researchers and scientists. I think it is possible that you will be a part of one of these teams which will put into place new systems, etc.....

See more popular forum discussions.

Share This Page