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From Our Readers – Comments & Suggestions 07-07-10

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Join the XMRV Webinar July 15 & Hope for Fireworks

The CFIDS Association of America has an XMRV webcast coming up next Thursday, July 15. With all that’s going on, it could be EXCITING, so get signed up ASAP [link no longer active].

The event will be hosted by CAA Scientific Director Suzanne Vernon (who ripped the CDC’s new study reporting no XMRV in CFS patients’ blood this week, commenting it was “designed to not detect XMRV”).

Presenters are Columbia University virologist Vincent  Racaniello, PhD, and XMRV researcher Lucinda Bateman, MD. If you miss the webinar don’t worry, the CAA offers videos of all its past programs at – S


Do Lemon Balm & Other Herbals Inhibit Herpes & HIV Replication?

Several weeks ago I bought some lemon balm to help with sleep. I’d taken preparations before which had lemon balm as part of a combo, but this time I got straight lemon balm. Well, I think I took 2 capsules in the middle of the night and maybe another one early a.m. That day I felt like I’d been hit by a truck, totally wiped out. I know lemon balm is sedating, but this was different, not just sedated. I couldn’t figure out what was going on until I realized it felt similar to herx reactions I had had before. [Herxheimer reaction is flu-like fever, chills, etc. that occur when large quantities of dead bacteria, viruses, etc. are released into the bloodstream for clearance.]

So I Googled lemon balm and found that it has effect against the herpes virus, and also – and this is really amazing – HIV, which of course is a retrovirus. Here’s one link: “Aqueous extracts from peppermint, sage and lemon balm leaves display potent anti-HIV-1 activity by increasing virion density.” – M


Mikovits & Ruscetti’s File Patent Application for XMRV Antibody Test

Drs. Judy Mikovits at the Whittemore Peterson Institute and Francis R RuscettiSandra Ruscetti at the National Cancer Institute applied on July 1 for a patent for the XMRV antibody detection test they developed. Here is the application: Is it the first? – K


Purely Parody – CDC Spokesperson Admits “It wasn’t easy”

“This virus is getting harder and harder not see all the time,” according to an imagined CDC press release following publication of the negative XMRV study by Whittaker, Reeves, et al. THANKS to a witty poster on the Whittemore Peterson Facebook. – P


Pre-existing Condition? Sign Up for State High-Risk Insurance Pools ASAP

In the US, Obama’s health bill allocated $5 billion to operate high-risk health insurance pools in every state. Sign-up started July 1 in many states. Some estimate there’s only enough money to cover 0.5% (1/2 of 1%) of the uninsured, and enrollment is first-come, first-served. If you don’t enroll before the money runs out, you may have to wait until 2014 to get health insurance.

The government’s new website with more information about these pools and other health insurance options is These new high-risk pools cover all pre-existing conditions right away.

The majority of the premiums are paid for by taxpayers. You may only have to pay about 1/3 of the cost. Premiums can vary widely depending on which plan you choose, your age, and location. For example, in Colorado premiums are between $120 to $551 per month. In PA, there is only one plan and the cost is $283.20 per month regardless of age.

The website allows you to click on your state and get more information about premiums and plan options there. – F


UK Petition – “Justice for ME/CFS Sufferers”

This petition, which will be sent to Parliament, begins, “After suffering with CFS/ME for so long and after lack of treatment, support and help for this condition I have decided to draw up a petition to send to the Health Minister over our concerns with lack of funding and awareness of CFS/ME.” The petition is at – L


Transcript of Chat on Trying to Have a Social Life with ME/CFS or FM

[Chronic Pain Connection’s ME/CFS/FM patient expert] Karen Lee Richards hosted an e-mail chat last week on the problems we face when we try to plan some social activities around our unpredictable pain & exhaustion. The transcript is interesting and has some good ideas. I found it at – G


Centers for Independent Living Help Disabled in Many Ways

There’s an international directory of Centers for Independent Living (CIL) at on a US state or Territory to find the location & contact info for a CIL near you. (Off to the side are links to Canadian and International CILs as well.)

CILs aren’t places to live – they are “nonresidential private nonprofit agencies operated within local communities by and for people with disabilities, to provide an array of services in support of independent living.” They’re funded by the Department of Education’s Rehab Services Administration, and offer advice on everything from educational grants to low-cost food. Their “core services” include:
• Advocacy
• Independent living skills training
• Information and referral and
• Peer counseling – J


World Thyroid Register: Join to Highlight Diagnosis & Treatment Issues

Mary Shomon is a thyroid patient advocate and author. She has mentioned on her Facebook page that a doctor in the UK has established a confidential World Thyroid Register, and she says she has joined it. The idea is that by joining forces hypothyroid people can muster an effective campaign to press for acceptance of diagnostic tests and prescription practices that better reflect our true thyroid status. – R


Rik Carlson has Released the ME/CFS Documentary, “INVISIBLE”

Rik Carlson, president of the Vermont CFIDS Association, has created a documentary featuring ME/CFS patients that tells our terrible story from our point of view. It’s titled “INVISIBLE” ( and it hammers home the reality of ME/CFS/FM patients’ debilitation and struggles, for the “edification” of the public and healthcare community. “I made my family sit down and watch INVISIBLE with me… They treat me differently now,” one patient says. The price is only $19.95. – Y


Statin Drugs & ME/CFS Relapse?

Re: “Unintended effects of statins in men and women in England and Wales”

I’m glad that additional studies on the effects of statins are being done, and think there should be more. As I’ve commented before on this website, I descended into severe ME/CFIDS after being put on statins when my cholesterol had skyrocketed by 100 points in six months despite excellent diet and exercise.

I learned in other research that it is not uncommon for this to happen with this illness before major relapse, and that the theory is that the body is producing more cholesterol needed for healthy cell membranes to inhibit viral replication and improve cellular metabolism.

I also question if the standard liver function tests are enough, that maybe endocrine function should also be measured because the liver doesn’t just metabolize lipids/fats, it also fights pathogens and creates most of our hormones.

I had the double injury of being put on birth control pills at the same time to manage other health conditions, but on reflection I see that my poor liver could not handle all of those tasks at once.

In subsequent cholesterol research, I’ve learned that tests on statins have been more common with men (aimed at how heart disease presents in them), and not in women, which could be a big factor in this lack of vital info about side effects.

My aim here is to help my fellow patients have information and questions I wish I’d had before being knocked out of the working world and into disability. – C

Note: See also the article in ProHealth’s July 7 ME/CFS Newsletter, “Cholesterol-Depleted Brain May Account for Statin Drug-Related Anxiety & Depression.”


Twin Study Concluded Environment is “Predominant Influence” in IBS

A study that examined 1,870 twins found identical rates of IBS (27%-28%) in identical versus non-identical twins and concluded, “Genetic factors are of little or no influence on IBS where the predominant influences appear to be environmental.” [See “Genetic Influences in Irritable Bowel Syndrome: A Twin Study”]

That’s good news because non-genetic causes can be treated. Many people have found that probiotics (good bacteria) were able to CURE their IBS which is consistent with antibiotics (which destroy bacteria, including beneficial bacteria) being a risk factor for IBS. – F


Benefits of Grape Seed Extract? Check PubMed…or Ask the Bridge Group

Everyone who takes GE in my circle of friends all have improved health and will never go off it. Another friend recently got on it since I talk about it every chance. That’s now 4 of my bridge friends, they are hooked on it. She mentioned it to her rheumy and he said “by all means take it, I take it.” She felt more reassured as she has a lot of faith in this doc. Yes, Grape Seed Extract definitely works on our circulation from head to toe. – (undaunted GE booster) J

I don’t take GSE myself. However, for those who doubt its worth, check out PubMed []. There are over 200 articles about this antioxidant. Once I’ve used up my vast collection of vitamins and supplements, GSE is one that I am seriously considering adding. – T


Vote to Capture Chase Community Giving $$$ for Invisible Illness Causes!

This opportunity to vote online can really help the charities that help us! Anybody in the world can vote if they have or create a facebook account, and the voting ends Monday, July 12. Any organization in the top 200 wins at least $20K. The winners will be announced July 13. Whittemore Peterson isn’t technically eligible this year, but “Patient Alliance for NeuroEndocrineImmune Disorders” [zip code 33134] is. Anything they win will help fund the envisioned NEI research center in New Jersey. Go to and cast your vote! – N

[Post Script: On July 13 P.A.N.D.O.R.A. placed 162nd in the contest, winning a $20,000 donation that will go toward the envisioned NEI Center in New Jersey. Thanks to 1,571 people who voted!]

Note: This information has not been evaluated by the FDA. It is generic and anecdotal, 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 program or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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