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Methylation treatments moving up on CureTogether effectiveness ratings for CFS

richvank

Senior Member
Messages
2,732
Hi, all.

On the CureTogether.com site, "methylation treatments" have now risen to 16th position in effectiveness out of 95 treatments for CFS that are ranked there. A few weeks ago, they were not even listed. Cerefolin-NAC (a prescription methylation treatment) is also doing well. I encourage more people to report their experiences with various treatments there, good or bad or in between:

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

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Hi, all.

Methylation treatments have now moved up to 15th position on the CureTogether
CFS treatment effectiveness ranking out of 95 treatments listed. Low-dose naltrexone is in tenth position.

This is like a horse race! :)-)

I encourage everyone to take the survey there, and report your results with the various treatments, good, bad or in between. I think this could be very helpful to others.

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

Best regards,

Rich
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I tried to take this survey, but I can't get the stars to register. They all just stay empty when I try to click on them.

Am I doing something wrong?

Thanks for any help that folks can give.

Best, Lisa

P.S. Oh, you have to register on the site before you take the survey. It just takes a minute to register though. And you don't have to fill out the regular survey -- you can skip directly to the address above.

http://www.curetogether.com/
 

richvank

Senior Member
Messages
2,732
Hi, Lisa.

Yes, the trick is that you have to sign in to the site in order to report the effectiveness of treatments. I just checked it again, and after taking a big nosedive, methylation treatments have come back up to ninth position, and mold avoidance is ahead of it! They hop around quite a bit when there aren't many reports on them to average together, so hopefully they will settle down some after more people have reported in. I also added the Pall protocol, since it was not on the list, either. I didn't see any reports on it yet.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Hi, all.

Methylation treatments have now moved up to sixth position, with 10 people having rated it.

I appreciate people continuing to add ratings to the survey. Note that you must sign into the site in order to rate the treatments there. Anyone can add additional treatments to the list.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Methylation treatments now in fifth position at CureTogether.com

Hi. all.

Twelve people have now rated methylation treatments on the survey at CureTogether.com and these treatments are now ranked fifth in effectiveness for treating CFS. The current front runners are

1. Ignoring people who think CFIDS is not real.

2. Take frequent short rest breaks to avoid exhaustion.

3. Personal development (e.g. learn to say "no", care less about opinions of others, letting go of "shoulds" and "musts," acceptance, become more relaxed and balanced)

4. Meditation


Therefore, methylation treatments are now the frontrunner for all other treatments, of which there are currently 93 others listed beside the above.

I encourage more people to go to the site, sign in, and take the "survey," whether your experience with these treatments or others were good, bad, or in between. You can also post comments there, or add treatments that are not currently listed.

Currently there are no ratings for the Pall protocol, which is listed.

Here's the url for the CFS treatments page:

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

Best regards,

Rich
 

Joopiter76

Senior Member
Messages
154
Hi Rich,

I dont think that

1. Ignoring people who think CFIDS is not real.

2. Take frequent short rest breaks to avoid exhaustion.

3. Personal development (e.g. learn to say "no", care less about opinions of others, letting go of "shoulds" and "musts," acceptance, become more relaxed and balanced)

4. Meditation

can be "named" "Therapy" they are just an "add on" and some are a kind of a "natural" reaction like ignoring people who bother you by ignoring the illness.

so the Methylation Treatment is the first ranking real "Treatment" as I would say.
I still continue to improve. I just moved back to my own appartment, as I lived with my parents because of my disability the last 1,5 years. I didnt thought I would be able to do that 6 weeks ago. It is imprtant to understand methylation and it is important to combine this with avoidance of gluten, glutamate, milk products and so on. Just like the autism treatment.
As Yasko says I think shes right when she says that in CFS this will take years and improvement will continue over years. I think your study showned that long term improvement takes time. And I guess its so important to never stop methylation cycle treatment even after recovery. There are so many people who became ill again, but I think they stopped any kind of therapy. I didnt hear of anyone who became ill again although he took all the important nutrition.

Its so great that you found the link !!! I didnt do the survey so far. But I will.

So Im looking forward to a very better New Year 2011.
And this is wha I wish everybody.
 

richvank

Senior Member
Messages
2,732
Hi Rich,

I dont think that

1. Ignoring people who think CFIDS is not real.

2. Take frequent short rest breaks to avoid exhaustion.

3. Personal development (e.g. learn to say "no", care less about opinions of others, letting go of "shoulds" and "musts," acceptance, become more relaxed and balanced)

4. Meditation

can be "named" "Therapy" they are just an "add on" and some are a kind of a "natural" reaction like ignoring people who bother you by ignoring the illness.

so the Methylation Treatment is the first ranking real "Treatment" as I would say.
I still continue to improve. I just moved back to my own appartment, as I lived with my parents because of my disability the last 1,5 years. I didnt thought I would be able to do that 6 weeks ago. It is imprtant to understand methylation and it is important to combine this with avoidance of gluten, glutamate, milk products and so on. Just like the autism treatment.
As Yasko says I think shes right when she says that in CFS this will take years and improvement will continue over years. I think your study showned that long term improvement takes time. And I guess its so important to never stop methylation cycle treatment even after recovery. There are so many people who became ill again, but I think they stopped any kind of therapy. I didnt hear of anyone who became ill again although he took all the important nutrition.

Its so great that you found the link !!! I didnt do the survey so far. But I will.

So Im looking forward to a very better New Year 2011.
And this is wha I wish everybody.

Hi, Joopiter.

I'm very happy to hear that you are continuing to improve, and that you've been able to move back to your own apartment. I hope the new year will bring you even more improvement.

I appreciate your being willing to post at the CureTogether.com site. I think it will be helpful to others to hear about the methylation treatments, and how they are helping a lot of people now. This type of treatment does not seem to be the total answer for most people with this disorder, but it does seem to be a significant help to many.

Best regards,

Rich
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
Hi Rich,

Did you ever learn what Dr. Audhya thougt about my S-Adenosylhomocystein was so low. Could it be a mistake? I remembert you saying it could not posivbly be that low. Is there anything I can do to bring it up.

I often wonder waht the panel would have shown if I had not been on the Meth protocol for over a year when the test ws finally done.

I did the survey.

Margaret
 

richvank

Senior Member
Messages
2,732
Hi, Margaret.

I appreciate your doing the survey.

I phoned Dr. Audhya earlier today, but haven't made contact yet. I'm sorry that I dropped the ball on persisting until I got an answer about your spurious SAH result. When I called him about it the first time, he was out of his office, but he agreed that there was an error somewhere to produce a value that was impossibly low. I have been away from home working on a house remodel for my son and daughter-in-law since early October, and have not been able to focus on CFS matters much lately, until we took a break for the holidays. I'll be going back to the house project starting on Saturday, but I'll try to get an answer on this from Dr. Audhya.

Yes, we'll unfortunately never know what your results would have been if the lab had not been shut down and unable to make the measurements in a timely fashion. I guess we just have to start from where we are.

Best regards,

Rich