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From Our Readers – Comments & Suggestions 04-27-11

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“Petition – Change the Way Media Portrays Our Disease!”

Like many others, CFS Untied blogger Khaly Castle is fed up with the continuing headlines parroting the notion that exercise and psychology will ‘cure’ ME/CFS, and referring to it as ‘chronic fatigue’. “Our window of opportunity to educate the press is upon us,” Khaly says, and “a small number of independent advocates have worked together to create a petition asking the press to take a harder look at our illness and the politics at work.”

You can review the key points in the petition and how it will be used at CFS Untied, and sign the petition at www.change.org.



Urinary Tract-Related Clues to Health

I wanted to share this article on urinary tract symptoms in men and women that can be signs of unexpected health problems. [“10 Things Your Bladder Says About Your Health” ]  In my case one of the signs, which I dismissed as just getting older, turned out to be connected with my developing a low thyroid condition. – B


Whittemore-Peterson Awarded 2-Year Foundation Grant

“Nevada foundation (NV Energy Foundation) approves Whittemore-Peterson Institute’s $100,000 grant request to support its comprehensive medical research program.”

“This is Reno” news release, Apr 20, 2011


Sleep Lab – There Was a Lab, But No Sleep

Re: “Screen your sleep lab when evaluating your insomnia”

This sounds like my first unproductive sleep lab experience. They’re not all this way. Check out the facility you might be using and ask for an description of what to be prepared for. – C


B-12 Deficiency Documentary – “Living With the Fog”

The documentary film “Living with the Fog” [see the trailer here] is an investigation into how a deficiency in an essential, but often overlooked, vitamin leads to what has been described as “an epidemic of misdiagnosis.” B-12 Deficiency is a master of disguise and the current method of diagnosing it often results in patients being misdiagnosed as suffering from Depression, Chronic Fatigue Syndrome, ME or Multiple Sclerosis. The film will premiere in South Wales on June 8.

Pernicious Anaemia Society (for further details visit www.pernicious-anaemia-society.org)


ME/CFS Good Health Basics Video

Video: “The Basics of Good Health for Those Afflicted with ME/CFS”
[See the video here. ]
Dr. Herbert Hyman, MD, Paula Hayward and Dan Moricoli in an Around the Kitchen Table Q&A discussion for those afflicted with ME/CFS, also known as chronic fatigue syndrome, ME, myalgic encephalomyelitis, and CFIDS among other names. (An estimated 60% of those so afflicted also suffer from fibromyalgia.)

ME-CFS Knowledge Center (www.cfsknowledgecenter.com)


Japanese Advocacy Group Gets Media Attention in TV Sement

Saw this in the IACFS/ME Newsletter for April 2011. It is excerpted from a letter to the IACFS-ME on behalf of a Japanese CFS patient advocacy/support group founded in 2010. It describes a segment on ME/CFS that aired in January on Japanese TV. – L

“In late January, the Japanese television station NHK (the Japanese equivalent of BBC) aired an approximately eight-minute news segment on CFS that centered around the group’s advocacy efforts, including a direct meeting between Ms. Mieko Shinohara [founder of the new Japanese support group] and the Japanese Senior Vice Minister for Health held in December 2010.

“During which Ms. Shinohara urged that Japan immediately step up its efforts to conduct serious research into CFS, conveying information regarding the recent research focus in the United States and other countries into a possible retroviral cause of the disease.

“The segment also portrays the extent of disability experienced by a severe CFS patient (Ms. Shinohara), the first such television coverage to ever air in Japan, and includes an interview with a Japanese retrovirologist who discusses the urgent need for Japan to join in research efforts on XMRV/MLVs in CFS (and who has initiated such efforts).


Most UK Neurologists Ignorant of ME/CFS?

Re: The article “Chronic Fatigue Syndrome: Labels, meanings and consequences”

FYI, this survey of the Association of British Neurologists found 84% of the respondents do not view chronic fatigue syndrome as a neurological condition, which “is at odds with current classification in ICD-10” (International Classification of Diseases) under diseases of the central nervous system. – K


Drop the Iodide & Nobody Gets Hurt!

On the subject of people rushing to get potassium iodide to avoid having radioactive iodine (from the Japanese nuclear plant) affect the thyroid, here’s a Q&A that About.com Thyroid expert Mary Shoman posted on the subject the week after the tsunami. A key point is that potassium iodide is good to have on hand in case of an accident at a nuclear plant accident in your region, but it isn’t harmless. It becomes iodine with oxidation and can worsen both hyperthyroidism and hypothyroidism, or borderline situations, so it’s essential to balance the risk vs. the radiation threat.* At some point supply will exceed demand and the price will come down again. – O

[* Note: To help you keep track of any fallout threat, here is a link to the website of the EPA’s RadNet nationwide air, water, and milk radiation monitoring system (www.epa.gov/radiation/rert/radnet-data-map.html). The map shows the locations of monitoring stations in every US state & territory. Click on “monitors by state” to find local data.]


Rise Above CFS Song Site

The “Rise Above Chronic Fatigue” song site (http://cfssongs.bandcamp.com) by Dean Brantley and Friends features a digital album of “songs of hope and understanding” for those with ME/CFS, FM, Lyme, GWS, MCS, etc. So far there are nine high-quality songs. You can click on any song to read the lyrics (really poetry) or listen. You can download the album for a $1 minimum donation – 20% of which goes to the ‘Rise Above” charitable organization of the month. Currently that is Action for ME in the UK. There is a video of the “800 Yards Around” song at  www.youtube.com/ChronicFatigueSongs – B


Caffeine – Blood Sugar Pro or Con?

[HealthCentral Diabetes Patient Expert] David Mendosa really gets into the facts about new research. Here’s his fascinating thinking on a new study that seems to show caffeine can cause a jump in blood sugar – ONLY IF you eat a carbohydrate when you take the caffeine: (“Caffeine and Diabetes”). Bottom line, blood sugar control problems mostly involve carbohydrate metabolism & defects in it, not so much the caffeine. Good news for coffee fans! – Y

[Note: While David wanted to get the antidiabetic effect of green tea, he says when he switched to drinking decaffeinated green tea it tasted so bad to him that he threw out the package. That’s why taking taking a caffeine-free Green Tea EGCG supplement can make sense; not to mention recent research showing that the EGCG supports both genetic and dietary weight reduction mechanisms.]


Doctors Uneducated on MCS!

This syndicated MD columnist says he receives 6,000 letters from readers each month. In a recent column he stated that multiple chemical sensitivity is ‘controversial’ and that very little new research has been done for more than 10 years. MCS patients don’t deserve this uninformed response, and he needs to be educated! Here’s an article that does it, on www.TheCanaryReport.org. – S  


ME Posters for International Awareness Month 2011

Invest in ME offers two posters for May Awareness Month that you can print and distribute. The theme is: “People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble. A bubble formed from ignorance…. BURST OUR BUBBLE.”

For Poster #1 (black background) click HERE.

For Poster #2 (white background click HERE.

Invest in ME (www.investinme.org)


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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