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From Our Readers - Comments & Suggestions 10-12-11

  [ 5 votes ]   [ Discuss This Article ]
www.ProHealth.com • October 12, 2011


Dr. Klimas Leads Recruiting for Chronic Fatigue Initiative Studies

“Chronic Fatigue Initiative (CFI)* is recruiting a well-characterized cohort of CFS patients (200 subjects plus 200 healthy controls nationwide). The goal is to help researchers establish a pure population of subjects who truly have the disease, ultimately enabling the discovery of pathogenic pathways.” Nancy Klimas, MD, Professor of Medicine, Psychology, Microbiology and Immunology at the University of Miami School of Medicine is Principal Investigator for CFI Cohort Recruitment.

- Chronic Fatigue Initiative (http://CFInitiative.org)

* Note: The privately-funded Chronic Fatigue Initiative was established recently with a $10 million donation from the Hutchins Family Foundation, for the purpose of advancing biomedical ME/CFS research. See also the recent news that “Part of Hutchins $10M goes to Columbia CFS Infectious Causes Study.” 

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California School District Settles CFS Special Ed Suit for $130K

According to an article published Oct 5 by the San Juan Capistrano Patch news website ("Capo Settles Special Education Suit for $130,000"), “A high schooler diagnosed with chronic fatigue syndrome and his parent sued the Capistrano [California] Unified School District over disagreements about when he should return to campus."

As the article explains, when he became unable to attend 3 partial days a week the school district cut off home instruction services and required 5 days a week attendance. The parents sued and won a settlement of $130,000 to be spent on his educational expenses through May, 2016. A review of the 60-plus reader comments made so far illustrates a range of attitudes and issues on the subject.

- ProHealth

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Naloxone Intranasal Spray as Opioid Overdose Antidote

This article at PainTopics.org ["Naloxone: Still an Overlooked Overdose Solution"] makes the case that broader distribution of a naloxone intranasal spray to patients who are prescribed long-term opioid pain meds could help prevent many accidental overdose tragedies and reduce physicians' worries about prescribing the meds to people who need them.

The article says, “Naloxone has been approved and used since 1971 as an antidote to respiratory failure during opioid overdose, primarily by emergency medical services. Research is accumulating to suggest that this agent administered intranasally by caregivers at home may have even far-greater lifesaving potential.” - J

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CFSAC Meeting Set for Nov 8 & 9 In DC - Preregister for Testimony by Oct 26

The October 5 issue of the Federal Register announced that the next meeting of CFS Advisory Committee will be November 8&9 in Washington - and will be held in a different place (a Holiday Inn). The agenda, which has not been developed yet, will be posted at www.hhs.gov/advcomcfs. The announcement gives specifics on how to pre-register to give oral testimony (by October 26). Note it’s 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” (http://www.hhs.gov/advcomcfs). - H

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Mikovits-WPI Confusion, Promised WPI Q&A Summary, and Petition for Judy

Most ME/CFS patients have been confused by all kinds of speculation since the bombshell news of Judy Mikovits' separation from the WPI hit the Net on October 2-3. WPI has indicated on its Facebook page that it will be putting together and offering a document this week that consolidates/addresses the many questions they have received about the situation and its work. For those who are interested, tthe International ME Association is sponsoring an online "Fairness for Mikovits!" petition at https://www.change.org/petitions/fairness-for-mikovits  Signers are posting comments at the site. - S

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New Book by Jodi Bassett - Caring for the ME Patient

Jodi Bassett has written a book for ME (Myalgic Encephalomyelitis) patient carers, with a forward by the highly respected Canadian ME physician Byron Hyde, MD: (Caring for the ME Patient). Link to the Kindle edition on Amazon -
http://www.amazon.com/Caring-M-Patient-ebook/dp/B005M94CN0 or to the Paperback edition on Lulu.com - http://www.lulu.com/spotlight/jodibassett.

Jodi Bassett defines ME as “a specific type of acquired damage to the brain caused by an enterovirus,” which always involves “post-encephalitic damage to the brain stem.” Based in Australia, she is founder of an international patient advocacy group - The Hummingbird’s Foundation for ME (www.hfme.org)  - P

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DePaul ME/CFS Researchers Announce New Site & Patient Survey

The DePaul University College of Science and Health in Chicago, Illinois, has a new webpage for their Chronic Fatigue Research team (http://csh.depaul.edu/centers-and-institutes/ccr/research-and-publications/cfs/Pages/default.aspx). The page contains links to publications, press, and copies of research instruments developed by the team to measure variables relating to ME/CFS. – K

Note: Right now Dr. Lenny Jason and his team are actively seeking volunteers to fill out questionnaires for their “Project to Improve ME-CFS Classification / Subgroup Criteria.” Dr. Jason and DePaul have long focused on training students in community health research and service, with a particular focus on studying, advocating for and meeting the needs of people with chronic illnesses such as ME/CFS.

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A Source of Help If You're Uninsured and/or Can't Afford Your Meds

NeedyMeds (www.needymeds.org) is an online information resource of programs that provide assistance to people who are unable to afford their medications and health care costs. Please note that we do not run any assistance programs, we do not have a NeedyMeds application, and we do not supply medicine or financial assistance. We do maintain current information about many sources of assistance that anyone can use without registering or entering any personal data. All of our information is provided at no cost and is updated daily.

The NeedyMeds menu, in English and Spanish, includes Patient Assistance Programs (PAPs, each with its own qualifying criteria), Additional Programs, and Information About Government Programs.

- NeedyMeds (www.needymeds.org)

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Dancing with the Stars Winner's Story of Chronic Pain

HealthCentral patient pain expert Karen Lee Richards has posted a video of her recent phone conversation with Jennifer Grey on her experience “Living with Chronic Pain.” Jennifer starred in the movie “Dirty Dancing,” was the 2010 “Dancing with the Stars” winner, and is a spokesperson for Partners Against Pain®. Karen’s article & the video are at www.healthcentral.com/chronic-pain.

- ProHealth

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Research Institute's Pain Costs/Solutions Report

A new study by the economic research firm Laffer Associates reported that the cost of untreated chronic pain plus the cost of prescription pain drug abuse adds up to more than $323 billion a year in the US. Their key recommendation, based on 1 year's results of urine drug tests in 260,000 pain patients, is that widespread physician use of these UTIs would pay for itself three times over (saving more than $25 billion a year).

The tests can help the MD determine if a pain patient is taking a drug as prescribed, or is taking other non-prescribed and inadvisable medications. Routine testing should also help physicians manage their worries about prescribing pain drugs, a situation that in many cases can leave patients to suffer needlessly with untreated pain. - C

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Arthritis for Young Adults Symposium: "Making My ‘Work’ Work"

The Arthritis in Prime Time Symposium in Long Beach, CA, on Oct 22-23 will feature expert information and resources to help arthritis patients in their prime years (school age through 50’s) to figure out ways to handle the work they are involved in - whether it’s at school, college, on disability, home, private business or as company employee. For people (& their families) with arthritis, rheumatic disorders, fibromyalgia, Lupus, Scleroderma, Spondylitis and more. For iformation about the symposium and to reserve a place, go to www.arthritisinprimetime.org

- Arthritis In Prime Time (www.arthritisinprimetime.org)

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Moms with Chronic Fatigue Syndrome and Fibromyalgia

Re: "A clinician's guide to the implications of ME/CFS for women during their childbearing years"

I was diagnosed with chronic fatigue syndrome and fibromyalgia in 2002. Despite this I went on to get married and have two children. Raising two children is a challenge in itself but add CFS & fibro to the mix and some days seem like mission impossible. I formed this online support group for moms with CFS/FM (http://www.cafemom.com/group/12347) in the hopes of meeting other moms dealing with these illnesses. Let's give each other support and encouragement for those really tough days, and let's share tips and ideas on how to be terrific moms to our kids despite our limitations. - J

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What Is Prolotherapy, Anyway? (Video)


Here’s a video titled “Prolotherapy Can Relieve Pain” by Mark Darrow, MD. To simplify his explanation, pain can be caused in an area where there is collagen injury or breakdown, and injections in those areas can help the pain by stimulating creation of new collagen. - W





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