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Check out the CFS Treatments Infographic at CureTogether.com

Discussion in 'General Treatment' started by richvank, Jan 1, 2011.

  1. richvank

    richvank Senior Member

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    Hi, all.

    On the CureTogether.com site, they have a graphic that plots both the effectiveness and the popularity of a whole range of CFS treatments and lifestyle adjustments:

    http://www.curetogether.com/chronic-fatigue-syndrome/ig/treatment-effectiveness-vs-popularity

    See how the ratings there compare with your own experience.

    I would encourage every PWC to sign in to the site and take the survey, giving your own ratings of the various treatments. You can also post your symptoms and what you think the causal factors were in your case. I think that sharing this information can be helpful to the whole CFS community. I note that this type of thing was done in the autism community by the DAN! project, starting a few years ago, and it turned out to be a key to developing a better understanding of autism and better treatments.

    Of course, this type of informal survey has its limitations in terms of statistical reliability, but I think it can give us valuable clues.

    Best regards,

    Rich
  2. lancelot

    lancelot Senior Member

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    It's always nice to see rich working so tiredlessly for us. It's good to see you here at PR instead of playing around with the bigfool and her witches of prohealth. LOL!
  3. Sunday

    Sunday Senior Member

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    I went and put in my stats. Thanks for bringing this to our attention, Rich. You're right about informal surveys of course, but given the way statistics on PWCs seem to be tampered with in many studies, perhaps the empiric method may prove better in our case. Anyway, it's interesting to do, and to see what's going on with others.
  4. Snow Leopard

    Snow Leopard Senior Member

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    Looks interesting. The only problem is that the response rate differs significantly - if I were doing the plot, I would make the size of the dot be proportional to the number of respondents.
  5. August59

    August59 Daughters High School Graduation

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    Link doesn't work!
  6. garcia

    garcia Aristocrat Extraordinaire

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    Site seems to be down at the moment.
  7. richvank

    richvank Senior Member

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    Yes, it's been down a good part of today. Hopefully it will be back up soon.

    Rich
  8. richvank

    richvank Senior Member

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    Hi, Snow Leopard.

    Good point. Maybe I'll suggest that to Daniel, who administers the site.

    Best regards,

    Rich
  9. helen41

    helen41 Senior Member

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    I did the survey, but the 2 links at the bottom of the pages asking if I had any additions re causative factors or meds weren't working.
    Today I learned a new symptom- I never knew my fingerprints were disappearing. Now if only I had some energy I could start a career as a master criminal- no gloves needed!
  10. garcia

    garcia Aristocrat Extraordinaire

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    In principle this seems good idea. However personally I would remove the lifestyle factors from the treatments, as the fact that lifestyle factors do better than many treatments can be used to trivialize this debilitating illness.
  11. richvank

    richvank Senior Member

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    Hi, all.

    Thank you for your continuing interest in the CureTogether.com survey. There are now over 120 treatments and lifestyle changes listed there for CFS, and data have continued to come in at a pretty good rate.

    Methylation treatments have slipped a little in the ranking as more people have reported their experiences, but it is still near the top of the actual "treatments." Far infrared treatment, low dose naltrexone and Xyrem have pulled ahead of it. Not many people have reported experience with some of these treatments, so the rankings will likely continue to change as more data come in.

    I did pass on Snow Leopard's suggestion about varying the dot size to Daniel Reda.

    garcia, I understand your reason for suggesting removing lifestyle changes from treatments. However, the site includes a large number of chronic diseases and disorders in addition to CFS, and I think that lifestyle changes are about all that are known to help much for some of them. Also, while some of the lifestyle changes listed for CFS seem obvious, such as resting, others are not, such as the specific dietary changes listed, and it would probably be of help to people with CFS who don't know about them to learn that these changes can help.

    Basically, I'm in favor of getting truth out there, how ever it cuts. If some of the lifestyle changes are more effective than some of the treatments that have been tried, so be it, and if so, I think we need to acknowledge it, because then we can learn from it. Hopefully we will be able to improve the treatments, partly based on knowing what works and what doesn't, but to to that, we need to be operating on the best information we can get, and not let it be slanted one way or the other. That's my view as someone trying to figure out better treatments, but I understand your point of view about how this could be interpreted by CFS detractors.

    Best regards,

    Rich
  12. garcia

    garcia Aristocrat Extraordinaire

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    Yes but without proper cohort selection the whole survey is meaningless. You can't mix:

    1. I feel a bit tired - oh I must have "Chronic Fatigue". I get enormous help from X,Y,Z lifestyle factors (e.g. switching jobs).

    with

    2. I have a debilitating neurodegenerative disease. I have been unable to work for a decade. There aren't any "lifestyle" factors that I haven't already tried. Some help, but none affect the underlying disease. I need serious drug/nutraceutical treatments to make a dent in my condition.


    The problem is that group 1 have so far monopolized "CFS". Group 2 are too sick to advocate for themselves and have been left to rot.

    We need to separate the two groups, and give them different names. It's not fair that group2 should have treatments denied based on surveys conducted by group1. E.g. I know of someone who was denied a drug in the UK because of such a treatment survey conducted by the ME Association.

    I think lifestyle factors need to be separated from biomedical treatments, especially given the history of this disease and everything that has gone on for the last 25 years.
  13. richvank

    richvank Senior Member

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    Hi, Garcia.

    I understand your argument, and I did pass it on to Daniel Reda. Here's what he wrote in response:

    "Regarding the point about not referring to lifestyle changes as a type of treatment, we are not trying to shape the perception of any condition in any way. Our intent is merely to gather and list, as comprehensively as we can, and within appropriate categories, the types of interventions and actions people take in their attempts to feel better. Virtually all health conditions include such lifestyle and dietary changes as interventions. It's unfortunate if some people assume that if rest is the highest rated treatment for CFS, then it must not be a "real" condition, but we cannot control that. More importantly, we would not want to deny CFS sufferers the information about rest being so helpful."


    So long as the people who post for CFS on "crowd-sourcing" sites are self-selected, which is inherent in this type of a survey, there will always be ambiguity in whether or not they actually have the more serious disorder you have described for "group 2." However, these surveys will probably become more prevalent, because crowdsourcing seems to be gettting more popular.

    Perhaps the best way to work toward correcting this problem is to encourage more of the people in what you have called "group 2" to post their experiences on CureTogether. If more people from this cohort post data indicating that they did not find the lifestyle changes to be effective in their cases, it will lower the calculated "average effectiveness" of these actions, and they will drop down in the comparative ratings of average effectiveness. Of course, this assumes that there will be treatments that will be found helpful enough to rise above the lifestyle changes. I'm optimistic that methylation treatments are one type of treatment that have that potential, but time will tell.

    I also conveyed the issue of whether "popularity" is appropriately named on the CureTogether site. Here is Daniel's response:

    "Regarding the chart, by popularity we refer to the % of respondents who have tried a treatment, regardless of whether they continue to use it today. The point of the chart is to show that often, less effective treatments are tried by more people than more effective ones - which is a measure of needless suffering. If there was good information out there about what worked and what didn't, we'd expect the dots to be tightly clustered around a smoothly increasing trend line. With more poorly understood conditions, the dots tend to be more scattered. Perhaps we can do a better job of explaining this on the site. I'll think further on this, and welcome any suggestions you may have on how to better label the x-axis."



    Perhaps the X axis could be labeled "% who have tried the treatment."

    I think the ultimate solution to the group 1--group 2 problem is to develop better diagnostic criteria, with good biomarkers. The current case definitions and diagnostic criteria are too muddy to separate these two groups.

    Best regards,

    Rich

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