From Our Readers – Comments & Suggestions 07-27-11

Love to the People of Norway

To Norway: Please know that we send love to you and share your grief. – Y


ProHealth’s New US Weight Loss and Exercise Class Locator

ProHealth now offers an easy-to-use tool to help you locate and contact all kinds of exercise, weight loss, mind-body and healing classes & services in your area. You’ll find options including yoga, pilates, spin and more. You can even book a spa or massage appointment. Just enter your zip code to search, locate a class, and book online. It’s listed in our COMMUNITY resources center and you can try it here –



All Sanctions Against Dr. Sarah Myhill Removed July 26

All temporary restrictions and sanctions against the right of Dr. Sarah Myhill, MD, to practice medicine as usual have been lifted. A physician/researcher and licensed nutritionist with a special interest in mitochondrial dysfunction and fatigue, Dr. Myhill had been sanctioned for such thinking as that vitamin B12 supplementation might be helpful for some patients. The first news we had of this welcome turn of events was from stalwart Myhill supporter Craig Robinson. See “GREAT NEWS: Dr. Sarah Myhill Restrictions Lifted July 26”
For updates, and to review the history of “the Myhill affair” visit:

• The Support Dr. Myhill site –

Supporters of Dr. Sarah Myhill Facebook site

• Dr. Myhill’s website –



Wall Street Journal Migraine Article

Re: “Spotting Often Overlooked Clues Like Nausea, Fatigue, Even Yawns May Help Patients Stave Off Attack”

Lots of us know the triggers, but some of the warning signs described in this WSJ article were new insights for me. – P


If Heat Makes Your Symptoms Worse

For those who are temperature sensitive, here are two helpful blogs:

• Karen Lee Richards’ blog on HealthCentral’s Chronic Pain Connection:
Fibromyalgia and Heat Sensitivity – “As strange as it may sound to some, heat sensitivity is the most life-altering of all my FM symptoms.”

• Kristin Lathrop’s blog on Buffalo Fibro Examiner, from her book Find Your Way: A Guide to Living with CFIDS & FM:
Fibromyalgia and Dealing with Extreme Weather – “Supplements are very important to help rebuild the body and are the first line of defense when dealing with extreme heat or cold.” – J


IACFS/ME Agenda for Ottawa Conference September 22-25

The Biannual Conference of the International Association for CFS/ME should be jumping, with discussions of what will happen now that a team of leading ME/CFS experts have agreed “100%” on the new International Criteria for Diagnosing ME (not ‘chronic fatigue syndrome’). There will be a meeting for patients as well as workshops and presentations for researchers & clinicians, and the event will include at least five presentations specifically focused on Fibromyalgia (diagnostic criteria, genetics/subtypes, treatments).  The deadline for lower-cost early registration is Monday, August 1.

Information on the professional and patient agendas is at the IACFS/ME site – – S


Reducing Exposure to Airliner Insecticide & Disinfectant Treatments

Allergy UK has published an article on “Disinfectant Spraying Aboard Aircraft” with some tips for how to reduce your exposure. National regulations frequently require spraying and cleaning of the passenger cabin (and luggage hold) of airliners with agents to protect against the spread of disease and pernicious insects. If you are chemically sensitive it’s particularly important to protect against residue and outgassing.

Allergy UK (


Patients Feeling Disrespected by Their Doctors

A while back, CNN Health published a doctor’s complaints about patients, titled “10 dumb things you do at the doc’s office.” Fair enough, but there’s another side to the story, and consumer health blogger Steve Wilkins presented it in his article, “How physicians should deal with angry patients.” He summarizes the top themes expressed in more than 700 reader retorts to the CNN article. – B  


More Methylation Protocol Q&A

Re: “Q&A on the Simplified Methylation Protocol with Neil Nathan, MD”

Q: How would this protocol augment or compliment Dr. Pall’s treatment of excessive nitric oxide [“Antioxidant suggestions for down-regulation of the NO/ONOO- cycle”]? And, can different forms of B-12 be taken (e.g., hyroxocobalamin, methylcobalamin) be taken in combination without causing problems? Thanks for your help. – C

Dr. Nathan: While I can’t speak for Dr. Pall, I personally believe that this protocol would dovetail with his NO/ONOO- protocol quite nicely. I have been privileged to hear Dr. Pall argue with Dr. Van Konynenburg about whether the NO/ONOO- mechanism or whether methylation blockade is more central to the pathology of CFS/ME, and it is my opinion that both are brilliant researchers who have contributed a great deal to our understanding, and that both are correct.

As our understanding of the biochemical imbalances underlying chronic fatigue grows, it is clear that a single mechanism does not explain what is going on in every patient. Each patient must be studied individually to assess the imbalances that apply to them, specifically, to achieve their own personal healing. As for the B-12 question, see below.

Q: I may be wrong, but er… where is the METHYLcobalamin in the Methylation Protocol pack? I’m pretty sure the protocol is dependent on taking methylcobalamin. Hydroxy[cobalamin] is only good for NO scavenging and to prevent anemia. No? – B

Dr. Nathan: You accurately note that the protocol does not use methyl cobalamin. This is by design. There are some serious questions about whether methylcobalamin can be utilized properly when methylation blockade is present. While this concept has been debated and discussed by some of the biochemists who are on the cutting edge of this information, many practitioners are not aware that this may be a problem. Methylcobalamin is a standard part of some protocols, including some of the work done with autistic children, and it is often assumed that it is the “best” (sometimes “only”) form worth taking. We are not convinced that this is true, and a lot more research is needed to clarify this issue. What we can say, with some certainty, is that in our protocol the use of hydroxycobalamin (not methyl) has been quite effective. To say that hydroxycobalamin is only good for NO scavaging and anemia is not correct.


Pain Patients’ Comments Needed

American Pain Foundation (APF) would like to share with you a well-written and balanced article, “Giving Chronic Pain a Medical Platform of its Own,” that appears on The New York Times website.

This comprehensive article, written by Tara Parker-Pope, highlights the Institute of Medicine’s (IOM) recent report on the prevalence of pain in the U.S. and stresses the need for better pain training in medical schools, more research about pain and improved education regarding the importance of early treatment.

APF believes it is not only imperative to reach out to media outlets that inaccurately report on pain, but also to applaud those that help advance pain management and access to care and encourage them to continue to highlight and address pain.

Take Action! Join APF and tell The New York Times and Ms. Parker-Pope how important such articles are to you and the millions of people who live with or are affected by pain.

Click here to submit your online comment. Follow the instructions on the page, which will require you to register before submitting your comment. Registration is free.

Thank you so much for your continued support!

American Pain Foundation (


Funny Things We Say & Do When Foggy

One evening I popped a couple of frozen pizzas in the oven for dinner; well one of my girls went to take them out of the oven and when she did was laughing hysterically. I pulled myself up to go see what was so highly amusing… I’d put the pizzas in upside down! Ah well, scraped the cheese off the cookie sheet, plopped it on the pizzas and it was good to go. I on the other hand, will NEVER live that one down! – M

Yesterday, I treated myself to a Starbucks as a reward for getting a lot of errands done. I drove up to the window, gave my order and drove away! By the time I realized what I had done, I just circled around and came back to the window, where the woman had my order in hand. With a straight face she commented, “Hon, it looks like you need this!” – G


My Hypothyroid Diagnosis and Prescriptions, Done the Right Way

I have hypothyroid and have had it for over 30 years and have been on Synthroid for over 30 years. I was living in a rural community and originally was referred to a bone doctor who was one of the top three for the three surrounding states. In his exam he found I had a goiter (lump) in the thyroid area and referred me to an excellent endocrinologist in my state.

The endocrinologist did a full physical exam and found my hair thinning all around the front, my skin very dry, I told him I was tired, and I was hungry all the time. He palpated the goiter and sent me for a full battery of tests, among them was even an 8 hour glucose-tolerance test. He found I was hypothyroid and was hypoglycemic. He treated both and I felt good. He put me on Synthroid and we had to do periodic blood testing to see the levels and if it was too high, my heart would start to race and we would have to reduce the level. He warned me that people take too high doses of thyroid meds as weight loss methods and we don’t do that. So I became aware of reasons why people may want to up the dosage of their thyroid meds against the recommendations of a doctor and it could be dangerous.

We found the right balance and the goiter reduced and is gone and I lost weight and gradually my hair was okay. I still feel I am a little bit of thin hair on the sides of my head, but I also lost some hair after my son was born. I have to be checked for thyroid level once a year to make sure the level remains okay. At times, it has changed, particularly after my hysterectomy and when I moved to totally different areas and climates.

Getting treatment made a huge difference for me. I had depression before I was diagnosed and treated for hypothyroid – treatment for thyroid did not change that depression or decrease it. THAT ONLY WORKS IF THE DEPRESSION IS DUE TO THE HYPOTHYROIDISM. But chronic depression, situational depression, bipolar or other mental health ailments will not be cured or decreased by being placed on thyroid medication. I continue to take antidepressants and have had/and will have to long term. Treating the hypothyroidism with Synthroid and the depression with antidepressants have worked for me. – T


GABA-Fibromyalgia Report Suggests New Avenues of Research

Re: “Possible role for GAD [enzyme that limits calming GABA production] in fibromyalgia symptoms”

Suggesting the report raises these issues: “Do people with FMS have lower GABA or lower functional gaba? Are their GABA(A) or GABA(B) receptors functionally different from “normals” or is it just GABA production that is affected? Is the GAD gene dysfunctional?

We know that in Parkinson’s disease, direct infusion of the GAD gene into the brain relieves some PD symptoms in about half PD patients. Could this be tried with FM patients?

Is the gene in FM an inherited polymorphism? Or has the gene function been affected by a pathogen or by another immunological dysfunction? (About half of people with ME/CFS fit the criteria of FM.) I doubt this is a true co-morbidity but that the FM is a symptom of ME/CFS. FMS researchers and clinicians often forget this strong association with ME/CFS. – I


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant for 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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