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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Proposal: Create a Comprehensive Treatment Review Program

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

  1. INKY

    INKY Inky

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    To gerwyn, I agree with you to an extent as to one causative agent, but suppose that single causative agent had various forms.
    designed for diferent purposes or tuned to diferent speices, which is how I view it, results would be a core of similar symptoms clearly recognizable. But and a big but, you would also have those with specific accents. Such as those who are photosensitive and those that are not, by photosensitive I mean upon their eyes, not the skin reaction, which is already evident.
    A more positive first step might be to use this site, asking the members to post or advise of any treatments, supplements or therapies, they feel should be warned of to others.
     
  2. Leopardtail

    Leopardtail Senior Member

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    I have seen a few comments on the subject of Test results, one obvious thing needed is (for each Lab) an indication of average results and preferable quintile population distributions. We would then have a better idea what those results meant in 'real terms' and allow them to be better compared. Another option would be 'optimal range' two sub-optimal ranges, and two seriously deviant ranges. Once this data has been offered once per lab, it should not be necessary for each PWC to repeat it.

    With respect to the development - I formerly built very large interactive websites involving data-analysis. The key thing to start with is not 'what you see on screen' but what data you ultimately want to have, and what you want to do with it. A key failure I identified in new clients was that the 'previous version' had not paid enough attention to the design and storage of hard data. This can easily mean that need to 'throw away' old data when improvements are made.
    If that initial phase is done correctly the overall cost of the project will drop significantly, if done wrong, it will rocket. Well designed systems cost more at first production but require less time and less skill to maintain and improve.

    I would estimate that a developer of the right calibre to lead this project would cost more than four times what you estimate per month. Creating a durable and robust system of this type is MUCH harder than creating a system that 'works for now'. Programming practice in the last two decades has also made the level of skill needed in the planning stage much more rare.
     
  3. Leopardtail

    Leopardtail Senior Member

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    I agree in principle with much of this. It also occurred to me that making summary data accessible would be a massive research opportunity. With respect to charging for access - for me a lot depends on who wants the access. Drug companies that will profit from the access are one thing and they probably should pay for the data. Most research projects in academic institutions however are another issue, they typically have trouble getting funds and we do not wish to stifle research. We also need to consider that many unemployed and disabled PWCs do research 'for the good of all'.

    I have been involved in the design and planning of a medical information system and yes using a numeric ID is a good start. Access to a particular record rather than summary information however even using and ID can create legal issues in lots of countries, so care is needed there.
     
  4. Leopardtail

    Leopardtail Senior Member

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    Julia, Cort,

    you are right to be cautious, I made a post about this. It is however possible to work around legislation if you are careful what data you report and are equally careful about consent. Personally I think the value to patients themselves is just as high, knowing for example which symptom clusters most benefit from which treatment.

    We need also to be careful since quite a few people on this site have clearly defined and distinct medical conditions that are not true ME, but other diseases. If data is coming from patients, how will we achieve diagnostic clarity? This might well take a somewhat complex multi-part questionnaire to filter out the various type of fatigue illness on here. The same for people with genuine ME (symptom clusters and developmental clusters as indicated earlier by Cort).

    Perhaps a simpler first project (possible using the site as it stands) might be discussion about those symptom clusters and diagostic groups?
     
  5. Leopardtail

    Leopardtail Senior Member

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    I am all of: a PWC of many decades; a very skilled software analyst and (more recently) involved in research. I may well be able to assist with this (within reason time wise).
     
    Valentijn likes this.
  6. Leopardtail

    Leopardtail Senior Member

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    How much do you know about formal relational database design (e.g. 5th normal form) and so on Andrew?
     

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