From Our Readers – Comments & Suggestions 01-19-11

The WPI's Jan 17 Update on XMRV & Neuroimmune Illnesses

Many, many thanks to Lannie in the Lymelight for posting her blog summary of the Mikovits-Whittemore presentation on XMRV's relationship to not just CFIDS but MS, fibro, chronic Lyme, and cancer. Here's a link to PART 1. [And here's a link to PART 2, added later, on "Biomarkers specific to XMRV, Treatment Discussion, and The Future of XMRV"] – T


Dr. Enlander on UK Attempts to Debunk XMRV

Here is a video mentioned on the Whittemore Peterson Facebook site. An interview with Dr. Enlander, discussing "How the UK scientific community tried to bury the notion that XMRV is related to ME/CFS."

Note: Dr. Derek Enlander, MD, is a fibromyalgia, ME/CFS, and Lyme specialist and researcher with a private practice in New York City. He is a native of Belfast, Northern Ireland and has seen many ME/CFS patients in the UK.


Don't Refer Me to A Psychologist!

Why is it so easy for some doctors to shunt us to psychologists? I have been diagnosed with fibro, thoracic myopathy, and chronic fatigue. Recently I had to visit a new doctor who suggested a psychologist. I am so sick of this.

The problems that I am having are physical. Why is it so easy for some Dr.'s to automatically believe that the pain and problems associated with fibro are "all in your head"? – G


Trial of Food Supplement for Hay Fever Recruiting in UK

Do you suffer from hayfever (Allergic Rhinitis)? If so, would you be interested in taking part in a single blind placebo controlled study? Allergy UK [] is currently recruiting 200 hayfever sufferers to take part in a 4 month study. The study will begin in the spring of 2011 and is being carried out by Scandinavian Clinical Nutrition (SCN) and Vital Life. During the trial, participants will receive either a placebo product or a food supplement called Immulina and you will be asked to take two capsules a day as part of your everyday diet. The capsules will be sent to you in the post free of charge and every 3 weeks you will be required to complete an online questionnaire to record your progress. If you are aged 18-65 and otherwise healthy, living in the UK and have computer access, this is an excellent opportunity for you to help to evaluate new treatments to relieve the symptoms of hay fever. If you are interested in taking part in this study please click on the following link to register:

Vital Life International,


Chromium 6 and ME/CFS/FM – Any Connection?

Q: Recently in the news, some cities have been found to have Chromium 6 in their water supply. Is there any connection with this and chronic conditions such as Fibromyalgia and Chronic Fatigue? – N

A: Regarding this news, click here to see a video interview on the findings of this stunning Environmental Working Group study report, released in late December, and a map highlighting toxic chromium-6 levels in the US, by area/county.

Importantly, chromium-6 is a toxic industrial pollutant, not to be confused with the trace mineral chromium-3, which is essential for human health and found in brewers yeast, meat, whole grains, and some fruits, vegetables and herbs.

As for toxic chromium-6’s possible role in chronic conditions, it is known that inhaled chromium-6 can cause cancer, as in industrial settings, and the EPA is conducting “a scientific assessment” of its effects when ingested orally. According to the following information by a Dutch water treatment solutions website, it may have immune and genetic effects:


CFS Advisory Committee Meeting Minutes

The minutes of the October 2010 CFSAC Meeting are now up.

If anyone wants more information, the videos are still available at

Tom Kindlon (Co-Cure Listserv)


Question Regarding Breast Inflammation & Breast Cancer Research

Re:"Shutting Down Breast Inflammation Stops Cancer Onset & Progression in Historic Animal Study."

Q: On 12/20/10 a staff writer wrote a synopsis of a very interesting study which stated that reducing inflammation in the breasts selectively could prevent breast cancer. Also stating that reducing inflammation systemically could cause side effect. I found the information very important, BUT: What are the side effects of the systematic anti-inflammatory program (which I am on) and how do you reduce inflammation just to the breast? – B

A: You ask excellent questions. Actually this was a press release on a report of a breakthrough animal breast cancer trial, with strong implications for the potential benefit of future work to study and address such treatment in humans with breast cancer. As a first step perhaps you might direct your questions in an email to the report's corresponding author, Dr. Richard G Pestell, MD, PhD, at the Jefferson Kimmel Cancer Center in Philadelphia.


Join NIH's New ME/CFS Listserv Now – Numbers Indicate 'Interest'

The Trans-NIH (National Institutes of Health) ME/CFS Working Group is constructing a new website [ – Note: if it is still under construction, check back later], and has already established a listserv for sharing news to all who sign up. The NIH has announced it will be tracking the number who sign up “to gauge interest,” so ME/CFS patients & advocates do join all those who’ve signed up already. Following is the announcement from the Chair, Dr. Dennis Mangan. – J

* * * *

Dear ME/CFS investigators, patients, advocates, writers, families and friends:

An email listserv has been set up to enable information to be sent to you quickly and more frequently regarding NIH ongoing activities associated with ME/CFS research and the NIH ME/CFS Working Group activities. This will include informing you of new postings on the soon-to-be-released NIH Working Group website (, still under construction).

If you wish to subscribe to this free list service, please do the following:

1. Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV. The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

2. You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time. Please note that this is an information only email list service… not an Internet discussion forum.

All the best, Dennis

PS: please share this announcement with others on your email lists who might wish to join!

Dennis F. Mangan, PhD

Chair, Trans-NIH ME/CFS Research Working Group


Trial of FDA-Approved Malaria Drug for Melanoma at UMDNJ

Building upon recent laboratory discoveries on resistance by cancer cells to therapies that attempt to starve cancer, scientists at The Cancer Institute of New Jersey (CINJ) are conducting a clinical trial that further explores how to prevent that action. The goal is to discover if an anti-malaria drug approved by the Food and Drug Administration is able to block a cellular process that acts as a survival method for malignant cells in human melanoma.

Go here for more information and to inquire about participating:

Cancer Institute of New Jersey, UMDNJ


Bipolar Trial Site Launched at Case; First Trial Enrolling Now

The Mood Disorders Program at Case Western Reserve University School of Medicine and University Hospitals Case Medical Center [Cleveland], along with the Bipolar Trials Network, is launching Bipolar CHOICE (Clinical Health Outcomes Initiative in Comparative Effectiveness).

The 10-site nationwide trial is evaluating the real-world advantages and disadvantages of quetiapine, a widely prescribed second-generation antipsychotic mood-stabilizing medication, compared to lithium, the gold standard mood stabilizer, for the treatment of outpatients with bipolar disorder.

The study is funded by a $600,000 grant to Case Western Reserve University School of Medicine from the Agency for Healthcare Research Quality. The trial will begin enrolling patients January 11, 2011.

Prospective study participants can receive more information by calling 216-844-2869 or at More information about the Mood Disorders Program may be found at
Case Western Reserve University, Jan 11, 2010


Getting Through the Bad Days (With ME/CFS/FM/MCS)

Just posted (Jan 13): a new featured success story on the Lapp-Campbell website "Treating Chronic Fatigue & Fibromyalgia" ( "Getting Through the Bad Days": One person's strategies for handling relapses.

Explaining the new website, Dr. Lapp said, "What you'll find here is the combination of the Stepwise Approach I developed many years ago with Dr. Paul Cheney and the tools taught in Dr. Campbell's classes. This is the same integrated approach I now use with my patients. We have found that with encouragement, lifestyle changes, and targeted medications, more than 80% of people we treat can improve significantly."

Bruce Campbell, PhD, Executive Director
CFIDS & Fibromyalgia Self-Help Program


2011 Rings in the MCS News Australia Social Network

The MCS News Australia Social Network site is a volunteer site that is open to the public and is a place for people to connect and to share MCS knowledge and experiences. It is for those living with MCS, their families, carers and friends, and for those with an interest in MCS.

MCS News Australia
Moderator, Harry


Changes in Medicare Payment for Injected Medications

Please be aware of Medicare changes and ask questions ahead of time so you are not stuck with a lot of costs [for migraine patients especially].

My neurologist informed me of a new change to Medicare that very few of his patients know about. As of January 2011, if a doctor injects you with any type of medication – you are responsible to pay not only the office visit charge/co-payment, but also you must pay 20% of that drug/medication you are injected with no matter what plan you are on. I am on a Medicare Advantage HMO plan and for a while have gotten occipital neural blocks for my migraines and all I have paid is the office visit co-pay. As of January I will have to pay the office visit co-pay PLUS 20% of the cost of the injected drug/medication.

Impact to you: If you are on a Medicare HMO plan or other plan, you will have to pay 20% of any medication injected.

My neurologist told me that Medicare is considering approval of Botox for migraines. That would mean that anyone with 15 or more migraines a month would be eligible even if you are on a Medicare HMO. There is a chart my neurologist already has for all approved injection sites for use of Botox for migraines, and there are many. He said he will probably know by February if Medicare has approved this. BUT, the cost of Botox for this is about $800 (at this time and it could go up) so you could be looking at paying your office visit and then 20% of the Botox cost even with an Medicare HMO.

Impact to you: So if you see the doctor and he injects you with the injectable Imitrex migraine solution, you are responsible for the cost of your visit, and then 20% of the Imitrex cost.

Vaccines are up in the air, and my neurologist did not know if you will get the office visit for free, then have to pay 20% of the vaccine cost. – T


After the Diagnosis: Facing Life with Fibromyalgia

Karen Lee Richards, a chronic pain patient expert with HealthCentral, says her first reaction on being diagnosed was relief, after seven years of suffering without having the name of something she could learn about and try to combat. But now that it’s often diagnosed faster, many people tell her their first response is fear. Read more here. – W


Cort Johnson's Article on Studies of Rituximab for ME/CFS

I have trouble reading text on a gray background, so was happy to find that the European Society for ME website has reproduced Phoenix Rising Founder Cort Johnson’s article on studies of Rituximab for treating ME/CFS (“A Drug for ME/CFS? The Rituximab Story”). Retuximab is a 'chemo' drug now used to treat various types of lymphomas, leukemia, and some autoimmune illnesses including RA.

According to Cort's research, interest in the drug for CFS sparked when several people who had CFS before developing Hodgkin’s Lymphoma underwent rituximab chemotherapy for their cancer in Norway, and found that their CFS symptoms improved for up to 6 months before relapsing. More trials are underway with a scheduled end-point in December 2013. Read the article on Cort's site to see or add comments – S

Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness 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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