Check out the CFS treatments infographic at

Discussion in 'Fibromyalgia Main Forum' started by richvank, Jan 1, 2011.

  1. richvank

    richvank New Member

    Hi, all.

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

    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,

  2. richvank

    richvank New Member

    ***Hi, kjm.

    ***Happy New Year, and thanks for checking out the CureTogether site!

    I don't see anything that actually shows effectiveness of treatments -- 14 people said methylation treatments helped, 10 said that ionic footbaths helped, a whole slew, 105, said rest helped. Is rest a treatment for CFS? Gatorade is also mentioned as an above average treatment. Yes, you are right this kind of informal survey does have definite limitations.

    ***This is a survey of what patients have found to be the effectiveness of treatments and lifestyle changes in their own experience.

    ***They are using the word "treatment" in the broadest sense, to include everything people try to better their condition, including lifestyle changes, such as resting.

    ***This approach to collection of data has come to be called "crowdsourcing." It is not a substitute for orthodox epidemiology, or use of the scientific method. Nevertheless, I think it is interesting and can give us some helpful clues.

    ***I think that to determine a measure of effectiveness from these data, they take into account an average of the results reported, including those that found that the treatment or lifestyle helped, and those who found that it didn't, with the gradations in between. So the effectiveness is not determined just from the total number tried it. Some of the 14 people who reported on methylation treatments rated them in the "brown" categories, for example. It's the average effectiveness experience that determines the rank for each treatment or lifestyle change, and they are listed in order of this calculated effectiveness.

    ***It looks like the total number of people (or maybe the fraction of the total number who participated) who tried a particular treatment or lifestyle change is being used as a measure of its popularity.

    ***So then they plot their calculated measure of effectiveness against their measure of popularity, and that's what goes into the "infographic."

    ***Ionic footbaths are claimed by some PWCs to help with detoxication.

    ***Gatorade and other electrolyte drinks are used to increase the total blood volume, which is low in many PWCs, because of the diabetes insipidus that is part of this disorder (not the same as diabetes mellitus). Some PWCs find that this helps with their orthostatic problems.

    I don't believe DAN has added a better understanding of autism nor have they provided better treatments.

    ***Well, I hate to start the new year with a disagreement, but I can testify that I have met many parents of autistic children, who, based on their personal experience, would not agree with this assessment. I have personally seen quite a few children interviewed onstage at autism conferences who have been helped considerably by the DAN! treatments. In some cases, the parents showed "before" videos of their children, and the transformations were dramatic. The same is true of Dr. Yasko's treatment program, which uses much of the same biochemical basis as the DAN! treatments.

    ***Best regards,

  3. richvank

    richvank New Member

    Hi, kjm.

    Yes, I should have written detoxification. That's what I meant.

    My understanding of "detoxication" is that this word is indeed used in the sense you described, but it is also used to describe the body's inherent system (mostly in the liver, kidneys, intestine and lungs) for removing toxins, i.e. the "detoxication system." I agree that detoxification is treatment designed to help the body's detoxication system to remove toxins from the body.

    Thanks for helping me straighten that out.

  4. richvank

    richvank New Member

    Hi, all.

    The CureTogether site was down for quite a while today, but I see that it is back up now. If you tried and were unable to raise it earlier, I suggest that you give it another try. I think it is worthwhile.

    Best regards,