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From Our Readers - Comments & Suggestions - 09-01-10

  [ 8 votes ]   [ Discuss This Article ]
www.ProHealth.com • September 1, 2010


De Meirleir & van der Meer Talk About NIH/FDA Paper on Dutch TV

Re: The news piece, “Key Backer of Psychological Theory of ME/CFS Responds to NIH/FDA Findings on Dutch TV - Not a 180, But Not Rejection Either?” 

Watching the YouTube featuring a Dutch ME/CFS patient who had to go to Belgium to see Dr. De Meirleir makes me sad that there are so few doctors who have a knowledge of ME/CFS anywhere, but especially in the EU, and patients have to travel far to see the few that there are. Let’s hope this is the beginning of change! - E

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Collaborative XMRV Study in Canada Recruiting

An article published August 26 by the Calgary Sun newspaper announced that three researchers in Canada are recruiting for a study to look for evidence of the XMRV retrovirus in blood samples of 50 ME/CFS patients and 50 healthy controls. The three are: Dr. Eleanor Stein, MD, FRCP(C), one of the world’s best known ME/CFS doctors (based in Calgary), and two noted immunologists -  Dr. Lorne Tyrrell, MD, PhD, the founding director of the Li Ka Shing Institute of Virology at the University of Alberta (Edmonton) and Dr. Michael Houghton, PhD  also at the University of Alberta.

Depending on results of this preliminary blood analysis, they say they plan to apply for funding of a larger study in 2011, so if you don't get in this one, there may still be a chance to participate. Phone contacts for those interested in participating are: in Calgary 403-287-9941, and in Edmonton 780-492-8415. – K

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Rich Van K Describes WPI Open House for Those Who Couldn't Attend

For the many others like me, who were unable to attend, Rich Van K [Konynenburg] was kind enough to write up  a report on his day at the August 21 Community Open House for the Center for Molecular Medicine/Whittemore Peterson Institute in Reno. His description includes a lot of the details that make it come alive. Thanks a million for the great job, Rich! - P

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Submit Best Slogan for ME/CFS Patient-Awareness Campaign & Win $50

The latest on the "ME/CFS Worldwide Patient Alliance" publicity campaign to raise awareness of ME/CFS patients' severe unmet needs (http://www.causes.com/causes/511536) is that one of the collaborating patient organizations - P.A.N.D.O.R.A. - is offering $50 to the person who comes up with the best slogan for the ad campaign. See the August 28 post by P.A.N.D.O.R.A. Communications Director Tina Marie Tidmore on the slogan contest HERE. She says the patient campaign will have new dedicated website up soon, and some examples of ads, so stay tuned. - T

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WPI Grand Opening Day Videos

The WPI has put up video coverage of the speeches at the Grand Opening on Saturday, August 21 - Dignitaries, Annette Whittemore, daughter Andrea & more. Pride and Jubilation! - H

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Let's Get Our Comments Ready Now for Oct 12-13 CFSAC Meeting

[Note: The upcoming CFS Advisory Committee meeting in Washington, DC, is scheduled for Tuesday, Oct 12, beginning at 8:30 am Eastern Time, and Wednesday, Oct 13, beginning at 9:00 am. The event will be videocasted live at , and an invitation for advance submission of 'public comments' will likely be issued in September.]

We must begin right now thinking about what we want to say to the CFS Advisory Committee. The XMRV Working Group meets Sept 7th [and] the results of this event plus the NIH/FDA study will impact what we want to say to the CFSAC…

…We usually have about one month to get our statements in to the director of the meeting, Dr. Wanda Jones (PhD, Public Health). One can send up to 5 typewritten pages, or if you don't have a printer, you can email it to Dr. Jones and she will get it printed and passed out to the Committee and have copies for all the attendees on tables in the room.

One can also sign up for verbal statements (not sure if they will have to be 3 minutes or 5 minutes in length, yet), and they will put you in a queue and call you on your landline, put you on speaker at the meeting, and you can read your statement that way.

All statements get archived and are a permanent part of the record and history of the CFSAC meetings, and the meeting invariably gets on YouTube also, by some of our very talented and enterprising patients…

I can't express how vital this meeting will be: There is renewed vigor in research since XMRV in CFS patients was discovered by the WPI, and it will be very important for patients to express how seriously we consider it and how we are going to be demanding immediate action for funding for research (to the WPI, and NIH especially).

We will also be demanding that M.E. be reinstated as a diagnosable disease in our medical codes, and that all patients with a diagnosis of CFS be clinically tested for Myalgic Encephalomyelitis according to the Canadian Criteria, the Ramsey criteria, and the Byron Hyde criteria (which all are pretty much the same).

I am requesting/demanding that CFS be taken away from the CDC and be given over to the NIH's department that studies HIV/AIDS patients, as our immune system dysregulation and neurological symptoms are a mirror-image of that disease.

I hope this info helps all who come here...we have [time and will be informed here & elsewhere when the comment period begins], but with our cognitive and functional problems, we need to begin now thinking about this most important CFSAC meeting…. - S

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Nominations for New CFSAC Members Due by Sep 15

Don’t forget, nominations for CFS Advisory Committee members to replace those stepping down on April 1, 2011 must be in the hands of Wanda K Jones by September 15. For details see the CFIDS Association site - http://www.cfids.org/cfidslink/2010/080405.asp - L

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Dr. Komaroff Webinar on MLV-like Viruses and ME/CFS

In its continuing series of free webinars, the CFIDS Association of America is presenting “Managing Orthostatic Intolerance” with Dr. Peter Rowe on September 1, and “CFS & the Viral Connection” with Dr. Anthony Komaroff on September 16. You can see the complete schedule of twice a month webinars and register at http://www.cfids.org/cfidslink/2010/040703.asp and view videos of past webinars at http://www.cfids.org/webinar/series2010-past.asp - C

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A Reminder About Angel Food Ministries' Nationwide Network

I know ProHealth has featured news about this service before, but with our continuing economic problems this source of help in the U.S. can’t be highlighted too often (https://www.angelfoodministries.com). “Have trouble grocery shopping, preparing meals? Angel Food Ministries offers low cost, prepared, healthy meals. There are no qualifications, minimums, income restrictions, or applications. Click on "find a local site" and enter your zip code to find the location nearest you.”  – B

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CDC is Recruiting for Head of Chronic Viral Diseases Branch - Short Notice!

The CDC posted an open recruitment announcement for the post of Chief, Chronic Viral Diseases Branch, on August 10 and the short application period ends this Friday, September 3. (Dr. Elizabeth Unger has been serving as the acting chief.) IACFS/ME President Fred Friedberg just posted the following call for members to apply on Monday, August 30. - U

Dear Members,

The Centers for Disease Control has issued a job announcement for Chief, Chronic Viral Diseases Branch, which includes primary responsibility for the direction and substance of the Chronic Fatigue Syndrome research program. This program contains the largest single budget (US) for CFS research ($5 million/yr).

The Chief serves as principal investigator of epidemiology studies, and personally develops laboratory research programs designed to improve diagnosis and management of human papillomavirus (HPV)-associated cancers, CFS, and other related unexplained or chronic illnesses.

This is a critically important position that can influence science, practice, and health policy related to CFS. We need highly qualified individuals to apply for this position. If you or someone you know has the credentials and interest, I encourage you to apply. Please note the deadline is this Fri; Sept. 3rd.

For the complete announcement, click on:
http://jobview.usajobs.gov/GetJob.aspx?JobID=90144747&FedEmp=Y&FedPub=Y&sort=rv,-dte

Thank you.
Fred Friedberg, PhD
President, IACFS/ME
www.iacfsme.org

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Survey - How Does the Medical Community Treat Patients with Invisible Illness?

There's a survey at http://www.surveymonkey.com/s/TDWVHDW that is being conducted as part of the reseach for a book on this subject. Answers will be completely anonymous. - A

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PBS Video "The Truth About Blood"

Here's a short video of a PBS Need to Know feature on blood transfusion risks that ran on August 19, a few days before the NIH-FDA article on MLV-like viruses in CFS patients (and some healthy blood donors) broke. It announces a CDC "hemovigilance" program to track transfusion-related health problems in US hospitals ["The truth about blood"] - S

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The ME/CFS Family Member Poll

How frequently do relatives of people with ME/CFS have ME/CFS or an ME/CFS-like condition? See the results of a survey and add comments at Cort Johnson’s www.AboutMECFS.org site - the "Family Member ME/CFS Prevalence Poll Take II." - Y

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Is WPI 'Betting the Farm" on XMRV?

On Aug 26, the Wall Street Journal Health Blog ran a story that says the biggest bet in Reno "might be the one being made on a retrovirus called XMRV" ["Betting on X - As in XMRV - With a Big-Ticket Research Center"]. I wondered about that, but Annette Whittemore tells the reporter WPI is flexible enough "to recognize and treat whatever comes along." - M

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Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, 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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