From Our Readers – Comments & Suggestions 07-08-09

Please Contribute to this New International Good Doctors Database

My name is Garrett from I recently built a searchable database of CFS doctors. It contains over 500 doctors in 4 countries (US, UK, Canada, and Australia), including quite a few I found in the ME/CFS/FM Message Board.

Right now the results are mostly ME/CFS-friendly doctors, but the listing will include FMS and MCS doctors also. I need your help to make the database as complete as possible. If you have a doctor that you would like to recommend to the CFS/FMS or MCS community, go to:, scroll down to find “Leave a Comment,” and enter the doctor’s name, address, phone number, and any other info you have, such as email address or website. I will make sure to add it to the database, a.s.a.p. – G


Ideas for Surviving on Reduced Income – Online Patient Resource Guide

The Chronic Fatigue, Fibromyalgia & Chemical Sensitivity Coalition of Chicago (CFCCC) has suggestions for surviving on a reduced income. The CFCCC members worked with DePaul University’s Chronic Illness Initiative to get business-sector sponsorship and build an online database that includes info on hundreds of resources, contacts and quick links that can be helpful to CFS/FM/MCS patients with limited income. The focus is Chicago, but a lot of the resources are national, too. – L


Dr. Lapp’s Comment on Amygdala Retraining Program for CFS/ME

[In response to my e-mail question to Dr. Charles Lapp, he responded] “As for the Gupta Amygdala Retraining Program, we have found it very helpful, especially if you have difficulty with stressors or coping with this awful illness. It is not a cure, of course, but another tool for handling the many symptoms of CFS/ME.”… When I read Dr. Lapp's words that it's not a cure my heart sunk a little. I've always explained my condition on a scale of 1 [worst] to 10. Most of the time I'm a 2. So if I could get to a 5 or 6 it may be worth it. – T


Dr. Lapp’s Partner Says Amygdala Retraining is Helping Her Fibro

I spoke to Dr. Lapp's partner, Dr. Black, during a phone appointment, and she recommended Amygdala Retraining. She said that she has Fibromyalgia and that she has been doing the retraining herself, and that she feels a lot better. I've always been suspicious of panaceas, or "cure-alls." Before I spend that kind of money when I'm really broke (she said it was a good investment), I'd like to hear from those who took the training, specifically, how they felt, say six months to a year or more after the training. Success anyone?

Of course, I'm addressing people who didn't just blow off the exercises but who took the training seriously. – L

Note: to learn more, join other patients in the Live Chat Q&A with Ashok Gupta THIS FRIDAY, JULY 10 (12 Noon, California Time, 3 pm Eastern) in ProHealth’s Community Chat Rooms. For the time where you live, use the World Clock Time Zone Converter. Not registered for Chat? Visit our Chat Rooms and do it now; it takes only a moment. The Ashok Gupta room will be in the top position on Friday.


Neuro-Linguistic Programming Didn’t Help Daughter’s Symptoms

…I took my daughter to a Harley street clinic specializing in neuro linguistic programming [one of the techniques learned in Amygdala Retraining], and whilst it reduced the anxiety caused by having ME, 6 years later she is not in any way cured. In fact she believes NLP was counter-productive, as it left her feeling that if she only tried harder, she would "beat" this illness & be well again. I've read about ME being called atypical polio. Would anyone recommend NLP or reprogramming of bits of the brain to cure polio? Sorry to sound so cynical, but I have spent lots of money on so-called cures, and none of them work. ME is like a jigsaw puzzle, and until we really know what causes it, how can we hope to cure it? – C


Finding Help for Shopping and Cooking – Outside the Box

[This] idea may help with both the too tired to shop and too tired to cook problems. I don't know about your neighborhood, but I know in our neighborhood there are a lot of families where one or both of the adults has lost a job and is at home a lot, and is looking for odd jobs to help stretch their budget. Also there are a lot of high school students with driver’s licenses, and college age students home for the summer who probably have not been able to find work this summer like usual.

Perhaps you might be able to find someone friendly and helpful who would be willing to take your list to the store and do your shopping, bring home the groceries and get them put away for you, and then help make up a few dinners to freeze and a few to keep in the fridge for the week? It wouldn't have to be anything fancy, just regular cooking that anybody can do, but it would be healthier than take out or convenience food….

If you don't know anyone you could maybe call a nearby church that could recommend someone, or a local Girl Scouts chapter (they go all the way up to 16 or 18 years old, I'm pretty sure)… Maybe you can even give them some cooking lessons (if there's a non-exhausting way you can do this) that they can use when they go away to college, as a partial exchange for their help? [My babysitter] is a 16-year-old who I started training to be a babysitter when she was 12, at the time there was no one in my neighborhood who could babysit, so I found a teenager I thought would be responsible and good with kids, and I trained her myself. Now she is the envy of all my friends (they all wish they had such a good babysitter), and she is very loyal to our family. Sometimes the help you're looking for is right in your own neighborhood. – E


Should the CDC Change Direction on ME/CFS Research & Education Strategy? Selected Comments on Question of the Week

• We need more primary physicians educated in both FMS and CFS. I find myself knowing much more than my doctors do because they haven’t been trained in these disorders.

• I think the CDC should not even be allowed to continue their so called research, and the money they receive should go to other valid research groups who are actually doing some good. The CDC has proven repeatedly that the only group it hopes to benefit is itself. Its renaming and redefining has only served to confuse Drs and the general public and to defame CFS patients. What they are supposedly studying at this point does not even remotely resemble the original and real illness that patients with CFS have. Their aim to follow in the UK's footsteps will only cause further harm to CFS patients by continuing to ignore the real science that has proven that CFS is a biomedical illness, rather than the psychiatric construct that the CDC has invented. Hillary Johnson's recent speech to the Invest in M.E. conference explains very well all the damage that the CDC has done and most likely will continue to do if left in control.

• I am greatly concerned that their recent direction seems to be emphasis on the "psychiatric" and "behavioral" approach to ME/CFS. Furthermore, I am concerned that Dr. Reeves seems to be greatly influenced by Peter White of the UK. I am greatly concerned that the CDC seems so insular regarding ME/CFS research and do not cooperate with researchers outside their "little kingdom." These attitudes can greatly cause us to slide backward in our attempts to legitimize ME/CFS as an organically based illness. They seem so out of touch with the rest of the field. New leadership is GREATLY needed.

• I'm definitely for replacing Reeves.

• Undecided – will CDC really develop research plan “without representation”?


GABA, L-Theanine and Insomnia

Re: “In Primary Insomnia, a Brain Low on GABA Can’t Shut Down, Night or Day”

L-theanine (amino acid) is a great way to get GABA. I think it works better than taking straight GABA, as L-theanine crosses the blood-brain barrier and helps the brain produce GABA. It's very relaxing. You can take it during the day or at night – I take 200 mg. before bed, and sometimes more in the middle of the night if I have trouble sleeping. The Japanese spike many products with l-theanine, it produces a state of calm alertness and helps produce alpha waves in the brain. – A


EU Think Tank – An Idea That Could Generate Practical Help We Need

Re: “European Think Tank Forms to Generate Research Establishing ME/CFS as Organic Illness”

This is truly exciting news. Is anyone in the English-speaking world paying attention? Instead of tooting one's own horn and fighting over who gets to be the only one who is right, wouldn't it be better to band together and work on better communication of findings to the medical communities, beating down the doors of insurance companies, helping prepare briefs for legal battles, etc.? – J


Connecticut Passes New Law Protecting Doctors Who Treat Lyme

Congratulations to all the people in CT who worked hard to get this passed, and who will benefit from this wonderful bill. We're moving in the right direction. – N

Note: see “Conn. House Votes 137 to Zero to Protect MDs Prescribing Long-Term Antibiotics for Lyme"


Medicare & Insurance Coverage of Vitamin D Testing Threatened

The following info is on the front page of Insurance companies and Medicare are considering not covering Vitamin D testing. There are two emails to send – one to Medicare and one to Dr. Kimball, who is on the AMA board. Please see below or go to the website directly (whichever is easier). It is well worth your time and will take only about 5 minutes! Thank you! – E


“Soon, Medicare's newly proposed guidelines for restrictions on vitamin D testing will be adopted by every major insurance company in the country. The restrictions would forbid screening, the most important use of the test. This means that although vitamin D deficiency treatment is still covered, your doctor will not be able to order the test to find out if you suffer from low vitamin D in the first place!

“We encourage people to send their comments to Medicare by filling out this form on their website ( When filling out the form, the proposal's LCD number is DL30273. The name of the proposal is ‘Vitamin D Assay Testing’.

"If you would rather send a letter, which is more effective, send it to:
Ms. Anna Gene Risoldi
Senior Research Analyst
Highmark Medicare Services
1800 Center Street, 1AL3
Camp Hill, PA 17089

“Comments may also be sent to Dr. Daniel B. Kimball, Jr. at He is on the AMA board that is reviewing this policy.”


My New Website on Mold-Free Home

I'm happy to report that my website on 'Ideas for building a mold-free home' is finished. Here is the link: It's a work in progress, so there may be additions or corrections as time goes by. – F


Check out the UCLA Center for Neurovisceral Science & Women’s Health

The website is They’re researching the neurobiology of pain, stress, urology, and digestive health, and have two patient clinics for women.

One clinic is for diagnosis and treatment of digestive health ( – IBS and other bowel disorders, pelvic pain & IC, as well as migraine, depression/anxiety.

The other clinic is for integrative treatments for women. Each person gets a tailored program of counseling on nutrition, stress reduction, yoga, etc. ( – M

Note: This information has not been evaluated by the FDA. It is anecdotal and generic, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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