LDN, yeast treatments, and methylation treatments running strong on CureTogether.com

[richvank]

Hi, all.

On the crowd-sourced CureTogether.com site, apart from lifestyle changes, the actual treatments for ME/CFS that are currently running at the top of the rankings for highest average effectiveness are Low-Dose Naltrexone, Yeast Treatments, and Methylation Treatments, in that order.

I would encourage more people to join this site and share your own experiences with the various treatments and lifestyle changes listed there. You can also add to the list if you've found something else that helps. Here's the url.

http://curetogether.com/chronic-fatigue-syndrome/treatments/

This is not orthodox epidemiology, but I think it's very helpful to get information about how well the various treatments actually work "from the horse's mouth," so to speak.

Note that treatments and lifestyle changes that never cause a worsening of symptoms (such as getting more rest) will tend to rank higher in this ranking, because
worsening counts against the effectiveness. However, the more effective treatments may produce some worsening at first, such as initial sleep problems with LDN, dieoff of yeasts from the yeast treatments, and detox and die-off related symptoms from the methylation treatments. These rankings also do not reflect whether a treatment produces limited temporary improvement in symptoms, vs. whether it has the potential to produce greater longterm improvements.

Best regards,

Rich

 

[garcia]

On the crowd-sourced CureTogether.com site, apart from lifestyle changes, the actual treatments for ME/CFS that are currently running at the top of the rankings for highest average effectiveness are Low-Dose Naltrexone, Yeast Treatments, and Methylation Treatments, in that order.

I think calling it "crowd-sourced" is over-hyping it. Its an anonymous internet survey, that's all.

This is not orthodox epidemiology, but I think it's very helpful to get information about how well the various treatments actually work "from the horse's mouth," so to speak.

IMHO a better way is forums such as this one where you can actually get meaningful information direct from people (rather than from a misleading aggregation of anonymous internet survey data).

Note that treatments and lifestyle changes that never cause a worsening of symptoms (such as getting more rest) will tend to rank higher in this ranking, because
worsening counts against the effectiveness. However, the more effective treatments may produce some worsening at first, such as initial sleep problems with LDN, dieoff of yeasts from the yeast treatments, and detox and die-off related symptoms from the methylation treatments. These rankings also do not reflect whether a treatment produces limited temporary improvement in symptoms, vs. whether it has the potential to produce greater longterm improvements.

Exactly! Garbage-in, garbage-out as they say in Computing.

 

[richvank]

I think calling it "crowd-sourced" is over-hyping it. Its an anonymous internet survey, that's all.



IMHO a better way is forums such as this one where you can actually get meaningful information direct from people (rather than from a misleading aggregation of anonymous internet survey data).



Exactly! Garbage-in, garbage-out as they say in Computing.

Hi, Garcia.

Your points are well-taken here. I still do think it's worthwhile to look at surveys of this type, so long as you are aware of their limitations and take them into account. All data have their limitations, and we often have to work with what we have. But I agree that we must not do so blindly, and it's important to keep in mind the uniqueness of each person in terms of what will help them.

Best regards,

Rich