From Our Readers – Comments & Suggestions 06-01-11

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Choose Friendship Over Fragrances Campaign

The cleaner Indoor Air Campaign has launched a new project – the Choose Friendships Over Fragrances Campaign. What can you do to be a good friend to someone living with environmental illness or chemical sensitivities? Where to find favorite products?

There are 9 different posters, and there is a video by Sherri Connell to explain it, which is also shared on The Canary Report blog.

Friend of The Invisible Disabilities Association (


Lists of Side Effects for Prescription Meds Average 70!

A new study in the Archives of Internal Medicine reports on the problem of “mushrooming” lists of possible side effects. [“A Quantitative Analysis of Adverse Events and ‘Overwarning’ in Drug Labeling”] You have to pay to read the article, but here’s a press release about it. The average for the 5,600 drug labels they looked at (with a total of 500,000 potential adverse reactions) is 70 side effects, and for antidepressants, antiviral meds, and new RLS & Parkinson’s meds the average is 100. Some drugs listed more than 500. The lists are long partly for legal coverage reasons. But how can patients and doctors possibly hack their way through this information? The point of the article is that drug companies need to find a better way to offer information to patients and doctors so they can get a grip on possibilities in specific cases. – J


Dyscalculia – a ‘Math Fog’ Disorder, Similar to Dyslexia

I knew there was a reason my mother was the only one in our family who could do math in her head. We might have Dyscalculia. [See “Introduce specialised teaching for dyscalculia in schools, urge experts.”] Maybe my grandkids will get a break. – T


VA Trial of Hepatitis C Antiviral in Vets Taking Antidepressants

The VA is planning a trial of a protocol of antiviral medication and depression management for depressed vets with chronic Hepatitis C. The problem has been that many Hep C patients haven’t been considered eligible for antiviral therapy while on antidepressants or other drugs. The trial will be conducted through six locations initially. Details are at – P


Boston Study of GABA & Glutamate Levels in RLS

Brigham & Women’s Hospital in Boston is running a study to understand the brain chemistry of people with Restless Legs Syndrome. The theory is that GABA levels in the central nervous system may be abnormally low & glutamate high.

[Note: GABA is the number one calming neurotransmitter in the brain. Its function is to keep nerve cells from over-firing. And glutamate is an ‘excitatory’ neurotransmitter that plays a central role in sending signals between nerve cells.]


Gene Study of African-Americans with Rheumatoid Arthritis

A number of arthritis and autoimmune-related clinical trials are always in progress at the University of North Carolina Thurston Arthritis Research Center in Chapel Hill.  Following is one focused on Rheumatoid Arthritis in African-Americans:

This is a study that is looking at African Americans with Rheumatoid Arthritis. This study consists of only one study visit and does not involve any medication. The purpose is to study genetic and other factors to learn more about the disease.

Sponsor: National Institute of Heath

Participants: Must be African American with diagnosis of rheumatoid arthritis.

Contact: Diane Bresch, RN, BSN, Clinical Trials Coordinator – 919/966-0545


Suicide Warnings on Fibromyalgia and ME/CFS Drugs

Adrienne Dellwo has written an important piece on the ‘black-box’ warnings of suicidal throughts on drugs many FM & CFS patients take. [“Suicide Warnings on Fibromyalgia, Chronic Fatigue Syndrome Drugs”] She suggests patients & their families and friends should be aware of this, especially if they might be prone to depression. And the reader comments bring the message home. – S


European ME Alliance, Website, Formed

Who We Are: The European ME Alliance [] is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME. The alliance was formed in 2008 by national charities and organisations in Europe. The Alliance now has representatives from Belgium, Denmark, Germany, Ireland, Norway, Spain, Sweden, Switzerland and the UK… Our aim is to bring together a European lobby of groups to campaign for funding of biomedical research to establish an understanding of the aetiology, pathogenesis and epidemiology of ME/CFS. This should lead to the development of treatments to cure or alleviate the effects of the illness.

Our Web Site: Our aim is to allow our web site to be viewed in any of the major European languages. When [this capability is] activated it should be possible to switch to your language of choice.

European ME Alliance (


Lack of FDA Safety Standards for Sunscreen Reaches 34-Summer Mark

In the United States, consumer protection has stalled because of the FDA’s 33-year effort to set enforceable guidelines for consumer protection. EWG has found a number of serious problems with existing sunscreens, including overstated claims about their perfomance and inadequate UVA protection. Many of these will be remedied if and when the FDA’s proposed sunscreen rule takes effect. But even after the rule is enacted, gaps will remain. FDA does not consider serious toxicity concerns such as hormone disruption when approving new sun filters. The new rules would also still allow sunscreen makers to use ingredients like vitamin A that can damage the skin in sunlight, and would fail to require makers to measure sunscreen stability despite ample evidence that many products break down quickly in sunlight. Read more.

Environmental Working Group (

[Note: See the top-rated sunscreens in the EWG’s Sunscreen Guide, which offers safety scores on 1,700 sunscreens, lip balms, and other personal care products with SPF.]


Patient Demo in San Francisco Protests Low HHS Research Funding

On May 25, a group of ME/CFS patients in San Francisco accepted the challenge issued by a group who had demonstrated two weeks earlier, on May 10, in front of the US Department of Health & Human Services in Washington (see video).

The San Francisco protesters demonstrated and videotaped at the San Francisco HHS building (Federal Building). Positive results included:

• A very helpful article in the San Francisco Chronicle on the event, by Erin Allday (“Chronic Fatigue Patients Protest Lack of Funding” ). Many readers have thanked Erin and the Chronicle for this coverage.

• And a half-hour meeting after the demonstration with Eric Alborg, Regional Outreach Specialist of HHS’s Region 9. The group talked with him about the concerns and needs of people with ME/CFS, and he suggested ways they can raise the profile of these concerns with local institutions and legislators. He also accepted and agreed to deliver letters addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci, and Herb Schultz, Regional Director of HHS Region 9. (Photos of the event and comments by the participants to come.)



Low-Dose Naltrexone for Chrohn’s

88% of Crohn’s disease patients were considerably helped by treatment with generic low-dose naltrexone – a relatively inexpensive drug – according to a study published in the journal Digestive Diseases and Sciences. This plain-language interpretation of the report [“Naltrexone Effective Therapy for Crohn’s Disease”] by Pain Treatment Topics director Stewart B Leavitt may interest Crohn’s patients, noting that 1 in 4 patients might achieve remission. – C


More Evidence ‘Confusing’ the Brain Can Help Pain

Researchers at University College London have found that crossing your arms reduces the intensity of pain you feel when receiving a painful stimulus on the hand. They believe this phonomenon is due to conflicting information between two of the brain’s maps… and that this new discovery could lead to new therapies that exploit the brain’s way of representing the body. See a video ‘mini-lecture’ here.

University College London (

[Note: in an earlier study, the UCL team found “simply looking at your body reduces pain.”]


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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2 thoughts on “From Our Readers – Comments & Suggestions 06-01-11”

  1. Susan63 says:

    This article is the first mention I’ve seen of LDN (low dose naltrexone) on this site. I have wondered why, and still do, since LDN is often prescribed for ME/CFS. I know that LDN has helped me tremendously for those problems.

  2. Minnesota says:

    To find articles on this subject in the ProHealth database, search on Naltrexone under articles in the search box above.

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