From Our Readers – Comments & Suggestions 10-26-11

Task Force Concludes XMRV Not a Problem in US Blood Supply

As presented at the American Association of Blood Banks conference and reported Oct 22 by Bloomberg, the task force that tested 17,249 blood donor samples for evidence that XMRV might be transferred through the US blood supply suggested:

• “XMRV is a real virus, there’s no question…. The issue is whether it naturally infects humans and causes a health problem.”

• And of the samples tested, “We found none that showed convincing evidence of antibody reactivity to XMRV”…”(Less than 1 percent of the samples were positive for either antibody test, and none were positive for both.)”



Vitamin D Breast Cancer Prevention Trial to Involve 1,000 Worldwide

GrassrootsHealth, a public health promotion organization, is especially interested in low vitamin D as a factor in preventable diseases, and is sponsoring the first breast cancer prevention trial – focused on determining whether women tested to maintain optimum vitamin D levels will reduce their risk of breast cancer.  Sign up by Oct 31 to receive the trial test free at

Your enrollment includes a complete vitamin D test kit, your new questionnaire entry and reporting of results to you. You will get a follow up email every 6 months reminding you it’s time for your next test and health survey. Must be age 60 or older, no current cancer or cancer treatment.

Grassroots Health (


Most MDs Lack Knowledge of MCS & its Diagnosis & Treatment

A survey of physicians practicing in the state of Virginia reports only 7% were very satisfied with their knowledge of chemical sensitivities, 6% had a treatment protocol for it, and less than one half had received any relevant training. They do tend to see MCS as real, linked to chemical exposures, but most say they “only rarely” consider chemicals as the cause of a patient’s illness. See “Physicians’ Perceptions and Practices Regarding Patient Reports of Multiple Chemical Sensitivity,” published by ISRN Nursing.


Natural Killer Cells Spring Into Action: First 3-D Video

Scientists at Imperial College London have captured a high-resolution 3-D ‘movie’ of Natural Killer (NK) white blood cell proteins (green) moving rapidly to detect a diseased cell (a cancer cell in this case), organizing into a ring around it, and delivering ‘killing granules’ to the diseased cell. Click here and scroll down to view the video. – J


“Voices From the Shadows” Film Online Free Through Oct 30

I wish as many people who can will watch “Voices From the Shadows” and share with family. It’s a follow-up from the lost voices INVEST IN ME book… Not suitable for children and quite hard hitting. People in the US (and Canada?) can watch it for free through Oct 30 at: – S

Note: Following is the Mill Valley Film Festival synopsis of the hour-long film, which won their Audience Favorite Award:

“This compassionate and moving exposé bears witness to the tragic consequences of psychiatric prejudice and medical ignorance concerning one of the most prevalent illnesses of the 21st century. The film foregrounds the riveting stories of several British families confronting what must be everyone’s worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure.

“But what if the medical establishment made the situation worse instead of better? Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome. Firsthand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs – and underscore the urgency and frustration around this issue.

“A call to action for anyone who cares about the health and wellbeing of their community, this powerful film is equally a tribute to those whose voices must be heard.” – MVFF


A Few of the Many Reader Comments on the Rituximab ME/CFS Study

Re: “BIG NEWS: CFS remissions on Rituximab suggest autoimmune aspect – for subset at least” 

I wish all the very best on the remissions! But, please note, the side effects of Rituximab / Rituxan, including the boxed warning by FDA: “Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab…” And the warning goes on, which I did not quote. For full reading, see: – C

However, it does open the door for other drugs in this area and show that ME is, as we all thought, probably an autoimmune illness. This is a big development for ME as now it can be considered as autoimmune, not all in the mind. It should prompt further research in this area, so this is big, big news. Other drugs that target this area would be interesting to hear about. – S

For some it is indeed an autoimmune disorder, for others the exact root of their illness may be attributed to something else. It has also been found that some patients who are diagnosed with CFS/ME then go on to get Chronic Lymphocytic Leukemia (CLL). More research is required to see if using Rituximab for suitable CFS/ME patients will not only help them but also reduce the ever increasing number of people being diagnosed with CLL who previously had been diagnosed with CFS/ME. – L


American Pain Foundation Coping Survey Needs Your Input!

Please complete this survey by October 30, if you are living with pain. The American Pain Foundation is committed to you. By contributing to this survey on Coping Techniques ( you will help APF better serve you and provide information that is pertinent to meet your needs. We will report back to you with the results.

American Pain Foundation (


Social Security Benefit Increased 3.6% for 2012

The Social Security Administration has announced that SS recipients will get a 3.6% benefit increase in January 2012 – their first increase in benefits since 2009. The hiatus was the first since 1975. (In 2009 benefits rose 5.8% because energy/gasoline prices spiked in 2008.) For some Social Security recipients, however, an increase in Medicare premiums (deducted from Social Security payments) will offset the increase. Here’s a printable fact sheet on “2012 Social Security Changes.” – P


New Book –
What Nurses Know About Chronic Fatigue Syndrome

There’s a brand new book out in the What Nurses Know series – What Nurses Know… Chronic Fatigue Syndrome. The author, Lorraine Steefel, is a Doctor of Nursing Practice (DNP) with three other nursing degrees who teaches at UMDNJ School of Nursing. Her daughter was diagnosed with CFS at age 12, and she has focused ever since on gathering and sharing information that can explain and aswer questions about dealing with CFSl for nurses, patients and their families. – T


Mass CFIDS & Fibromyalgia Assoc Public Forum, Sat November 5

The Massachusetts CFIDS/ME & FM Association will hold its Fall 2011 Educational Conference on Saturday, Nov 5, from 1-3:30 p.m. at the Massachusetts Department of Public Health, U. Mass.-Hinton State Laboratory Institute in Jamaica Plain, MA. Meeting registration begins at 12:30 p.m.

Read about the event and register online now at

Mass CFIDS/ME & FM Association

Note: If you join the Association or renew by Nov 5, the $10 fee will also be your ticket to attend! (Pay now or at the door.) Discuss the new Rituximab study, be first to learn about the new ME/CFS Physician’s Primer, hear what patients and physicians need to know about the diagnostic code changes, share Dr. Komaroff’s take on the IACFS/ME conference, and much more.


CFSAC Meeting November 8-9 in Washington, DC

The October 5 issue of the Federal Register announced that the next meeting of the CFS Advisory Committee will be November 8 & 9 in Washington, DC – and will be held in a different place (the Holiday Inn Capitol). The agenda, which has not been developed yet, will be posted at The announcement gives specifics on how to pre-register to give oral testimony (by Wednesday, October 26). Note testimonials are first-come first-served, with priority given “to individuals who have not presented public comment at previous CFSAC meetings.”

Apparently there will be real-time audio coverage of the proceedings and “the meeting will be recorded and archived for later “on-demand viewing” on the CFSAC Web site ( – H


“Fibromyalgia: The Patient who Hurts Too Much” (Free CME Credit Course)

“The Patient Who Hurts too Much” is a free online fibromyalgia education module for healthcare professionals – or anyone who wants a basic medical understanding of fibromyalgia. Created by the nonprofit Foundation for Care Management, the module uses a typical case study to step through the logic of best practices for diagnosis and treatment. Good for credits until August 2012. A description is HERE, and the module starts at

Foundation for Care Management (

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 plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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