Hi Freddd,
My own focus on treating this illness is as broad and open-minded as I have possibly been able to be, and I've tried just about every different type of treatment available. (I will say that I have my doubts about Rituximab and am really glad I went a different route from that one though.)
I've been pursuing methylation for five years now, starting with Rich's protocol and now using something much closer to yours. It feels to me like it's been a really important component of my recovery. And like you, I feel like I'm getting closer and closer to getting the whole thing resolved, with more and more reactivities falling away over time.
Where avoidance belongs on this board, I don't know. In looking at the data from the CureTogether site (summarized below), it seems to me that the majority of the top-rated treatments involve avoiding one thing or another (mold/biotoxins, gluten, sugar, chemicals, EMF's, allergens, high stimulus environments, stress), and that perhaps having a separate section just for "Avoidance" on the board would be a good thing. I think at some level, people tend to think that having to avoid things is a sign of personal weakness, or is just something that they would prefer not to do. Giving it legitimacy as a true CFS treatment type might help people to see it in a different light and thus consider it more seriously. If you lived in a moldy house yourself, then I suspect that you agree that regardless of how helpful methylation support may be, those living in really bad places are not going to be in the position to take full advantage of it.
That's not why I haven't written much on this board recently though. I've been involved in a number of other projects designed to help to create awareness of CFS (amongst media, physicians and the general public), of toxic mold (amongst the same groups plus in schools), and of mold avoidance as a treatment for CFS. I do have a summary of my previous writings from PR for those interested in the topic though, and am happy to answer questions from those who want further information.
Thanks much for your work in this area. Like others, I have found it very interesting and helpful in my own recovery process.
Best, Lisa
*
Some new data on treatments.
Below (for understandability) I reorganized responses from the Cure Together site by the % showing improvement.
http://curetogether.com/chronic-fatigue-syndrome/treatments/
About 1600 people with CFS responded.
I was surprised that half said that mold avoidance was helpful, since for most people this just means moving. Biotoxin avoidance was higher (likely because only informed people know that word).
Ampligen and LDN (both immune modulators) scored 50%. It really does seem like those treatments _should_ work on this disease, and its frustrating that theyre not more consistent. My hypothesis is that its because people are getting so much inflammatory stress that it overwhelms the positive effects, and thus am excited to see this blog from an extreme avoider about to start Ampligen:
http://ampligen4me.wordpress.com/
Id like to see more reports on oxytocin, the top-rated hormone. T3 also rated highly.
Antidepressants, CBT and GET helped about 20%. Thus, my guess is that of people diagnosed with CFS, about 1/5 actually have plain depression.
From 9/4/2011
% Reporting Mild/Moderate Improvement
80%+
Low stim environment.
70%+
Frequent rest breaks. Oxytocin (10).
60%+
Rest. Personal development. Mindfulness.
T3. Avoid biotoxins. Wheelchair.
50%+
Ignore people who think ME/CFIDS is not real. Meditation. Change job.
LDN. Ampligen (6).
Stimulants. Ritalin. Klonopin.
Avoid mold. Avoid allergens. Diet changes. Reduce sugar.
Orthomolecular. Sinus treatments. FIR sauna. Invert body position.
Qi Gong. Massage. Lymphatic Massage.
40%+
Go to bed early/sleep longer. Recuperation.
Treat yeast. Probiotics. Treat methylation.
Avoid alcohol. Avoid gluten. Avoid dairy.
Baclofen. Immunovir. Xanax. Antivirals. Ultramadol. Ibuprofen. Guaifenesin.
Oral magnesium. B12 Injections.
Stay well-hydrated. Electrolyte beverages.
Diaphragmatic breathing. Cranial Sacral. Chiropractic. Yoga. Stretching.
HBOT (7).
30%+
ARVs (7). Antibiotics.
Tylenol. Naproxen. Aspirin.
Provigil. Benadryl. Cymbalta. Trazadone. Neurontin. Wellbutrin.
D-Ribose. Myers Cocktail. Malic acid. Topical magnesium.Vitamin D. 5HTP. Sublingual B12. Cerefolin. Betaine Hcl. NAC. Liposomal glutathione. Testosterone. Melatonin. Cortef.
Kinesiology. Reiki. Tai Chi. Orthostatic conditioning. Soak feet in cold water. Cool shower following exertion. EFT. Distract attention from symptoms. Amygdala retraining. Ayurveda. Eat more produce. Root canal/cavitation removal.
20%+
B Vitamins. Omega 3, 6, 9. ALA. CoQ10. DMG. Carnitine. Iodine. Chinese herbs. Homeopathy.
Xyrem. Altenol. Celexa. SSRIs. Effexor. Amitriptyline. Antihistimines. Caffeine.
Detox foot baths. Chelation. Ionized water. Skin Brushing. Osteopathy.
Neurofeedback. Lightning Process. CBT. Psychotherapy. Exercise. GET.
10%+
Doxycycline. Doxylamine. Zoloft. Prozac. Paroxetine.
Gingko Biloba. GABA. Glucosamine/Chondroitin. EPA. NADH. MSM. Monolaurin. Inosine. Undenatured whey. SAM-E.
Brainwave CDs. Rolfing. Rebounder.
Less than 10%
Vitamin E. Cats Claw. Garlic. Alcohol.