A meeting reminder will be distributed in about a week for the next installment of the ME/CFS and Fibromyalgia Self-Help Course with more details. the next meeting is Thursday, March 19, 2009.

One of the Cheeriest Pieces of News I've Seen for  Long Time:

Co-Cure:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0902d&L=co-cure&T=0&F=&S=&P=2764

Tue, 24 Feb 2009 12:27:10 -0500
ME/CFS and Fibromyalgia Information Exchange Forum
Sender:       ME/CFS and Fibromyalgia Information Exchange Forum
From:         "Daniel Moricoli 

Subject:     Noted Scientist Reports Real Progress in ME/CFS Research

 

International Press Release:  Noted Scientist Reports Real Progress in ME/CFS Research

Reported February 23,2009

by Dan Moricoli for www.me-cfs http://www.me-cfsCommunity.com
Community.com and www.cfsknowledgeCenter.com
http://www.cfsknowledgeCenter.com

"A biomarker for ME/CFS may be less than two years away." According to Dr. Nancy Klimas one of the pre-eminent, research scientists in the world on ME/CFS (also known as chronic fatigue syndrome or myalgic
encephalomyelitis).

"We are closing in on being able to identify the root causes of a disease which afflicts millions of people around the world. One that is poorly understood and treated by the medical community.

Understand," she went on to say, the excitement rising in her voice, "that physicians practice, or at least strive to practice, evidence based medicine. The demands on a physician are so overwhelming that they are
virtually forced to concentrate their efforts only on those medical conditions which can be clearly and objectively identified.

That is simply not yet the case with ME/CFS." She added with emphasis.

"Just think for a moment, what it would mean to the millions of sufferers of ME/CFS if any doctor could run a test which would clearly, indisputably identify the patient as having the disease, EVERYTHING CHANGES." Again, adding emphasis to her words as she spoke with great passion and concern.

"Drug companies will add untold millions in research in their rush to develop medicines to treat the disease. In short order, local physicians will finally be able to begin to identify, understand and treat their patients properly. No longer will those afflicted be dismissed by the medical community and, all too often, by their own family and friends as having that 'yuppie thing'."

Dr. Klimas shifted in her chair and with the precision and determination of a research scientist in both her eyes and voice went on to say. "There are at least three, perhaps even seven, sub-groups of what we call ME/CFS that are currently under intense research focus. They may be thought of as three to seven different conditions with closely related symptoms. As we identify and conduct more focused research on each of the sub-groups even more bio-markers will be identified and treatments developed over time.

That we are on the brink of identifying biomarkers for at least a few of these subgroups is very exciting. Particularly if one considers all that will then come from what is now so close at hand" she added.

Dr. Klimas made these remarks to me in our conversation Friday, February 20th in her office at the University of Miami. I had asked to see Dr. Klimas to talk about current ME/CFS research initiatives so that I might update the patient community through the web sites www.cfsKnowledgeCenter.com and www.me-cfsCommunity.com for which I write.

As an ME/CFS patient, and someone who, at least thinks of himself as being fairly active and somewhat knowledgeable in the ME/CFS community, I simply had no idea how close at hand treatment might prove to be for us. I was stunned.  Regaining my composure and with all the businesslike demeanor I could muster, I asked "What's next?"

"Money." She said simply.  "I would guess about $10 million over the next five years, maybe a little longer for clearly focused international research.  ME/CFS is world wide problem that afflicts at least 28,000,000
people, perhaps many more than that.

Japan and Spain both have great research underway in their very different national approaches to the disease. In the UK, Jonathan Kerr and others are also doing particularly noteworthy research.  Here in the United States, there is other fine work underway as well but we, too, have our own idiosyncrasies with respect to research funding and results evaluation. The disease is so widespread, however, that while nationalized approaches are without question valuable, a clearly focused international approach will clearly and dramatically speed up the process and the resulting benefits for those afflicted."

My meeting with Dr. Klimas, made it particularly clear, and deeply personal to me, why the newly introduced IACFS/ME Research Fund is so vitally important to those of us who suffer from this dreaded disease.

Interestingly, Dr. Klimas who is the current president of the International Association for CFS/ME (IACFS/ME) did not mention the new fund once during the 90 minutes she spent with me. She was clearly not trying to "sell" me or anyone else on the fund. This was simply a deeply concerned and compassionate physician and research scientist speaking about that which she has devoted her life to.

If you are concerned about having a treatment for ME/CFS, let alone having access to a doctor who is willing to treat you, instead of dismissing your symptoms with a raise eyebrow, you owe it to yourself to add what you can to the IACFS/ME Research Fund. Whether it's $5 or $20 or $500 or more, please do it. Please do it now.

For more information about the IACFS/ME Research Fund

or to make a donation, see
http://www.iacfsme.org/Home/IACFSMEDonation/IACFSMEResearchFund/tabid/362/Default.aspx

For more information about their work, see
http://www.iacfsme.org/ . To join the IACFS/ME, see
http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx .


The 9th International IACFS/ME Research and Clinical Conference is scheduled for March 12-15, 2009 at the Peppermill Resort in Reno, Nevada. A patient conference is included in the program in which patients will hear directly from such noted scientists as Nancy Klimas, M.D., Dan Peterson, M.D., Anthony L. Komaroff, M.D., Fred Friedberg, Ph.D., Leonard Jason, Ph.D., Hirohito Kuratsune, M.D., Kenneth Friedman, Ph.D. and Gudrun Lange, Ph.D. For a complete agenda see
http://www.iacfsme.org/IACFSMEConferenceMoreInfo/tabid/221/Default.aspx .

For more information about the ME-CFSCommunity web site, see
http://www.cfsknowledgecenter.com/sponsors/cfskc.html .

For more information about www.cfs http://www.cfsKnowledgeCenter.com KnowledgeCenter.com, see
http://www.cfsknowledgecenter.com/about-us.html .

The Blog Section http://cfsknowledgecenter.ning.com/profiles/blog/list  at the ME-CFSCommunity web site will have much more to say about Dr. Klimas as well as other experts and research scientists on ME/CFS in the coming weeks.

To read more, go to: 

Cort Johnson's Web site has a whole new look and its quite impressive.

Check it out and subscribe at:  http://aboutmecfs.org/News/PRJan09Pacific.aspx

Subject: Cheney seminar to include stem-cell therapy results on two patients
Date:    Mon, 16 Feb 2009 15:18:36 -0600
From:    DFW CFIDS dfwcfids58@TX.RR.COM

The following announcement was made in December, but I wanted to update it with an exciting clarification. Dr. Cheney will be presenting an up-to-date broad overview of CFS with a special focus on two key topics
as outlined below, and will also present detailed info on his four-part treatment protocol. As someone disabled for over 20 years who is getting her life back, I can personally say this is the most comprehensive,
effective protocol I've ever experienced.

Dr. Cheney has now given me permission to share that step four of his protocol is stem cell therapy. (Not every patient will need stem cell therapy. Many younger patients, or those ill for a shorter period, have
returned to full functionality with just the first three steps.) The first two CFS patients received a series of umbilical cord stem cell transfusions over the first ten days of February, and the pre and post testing done before and  after the stem cell transfusions shows significant, dramatic improvement. The stem cells are known to circulate and continue the healing process for up to six months. It's too soon to know the full effect and final outcome of the stem cell transfusions, but the initial results are very good and very exciting.

One note: the stem cells transfusion is step four, and is likely not to e effective without the earlier steps in the protocol. Please don't jump into stem cell therapy without hearing what Dr. Cheney has to say
about it.

The original announcement is below.

***********

Paul Cheney, MD, PhD, will speak from 6 to 9 pm on Saturday, April 25th at the Fairfax Board Auditorium of the Government Center in Fairfax, VA (just outside Washington, DC, east of Dulles Airport).

Title: Chronic Fatigue Syndrome: Is Oxygen the Problem and Why? Four-Part Treatment Protocol

In addition to presenting a broad overview of CFS (important principles, case definition, clinical findings, objective data, key medical literature), Dr. Cheney will present information on his latest four-part
treatment protocol. His presentation will include in depth information on the following two topics:

Oxygen Toxicity as a Controlling Factor in CFS his section of the presentation will focus on the research finding of nearly 100% toxicity in CFS patients when oxygen is administered. (96% @ 4 lpm nasal cannula and 100% at 40% mask.) Dr. Cheney will present evidence that patients categorized according to increasingly powerful treatment protocols were transformed to an increasingly oxygen tolerant
state. The most powerful treatment protocol was also associated with significant overall clinical improvement (p<0.006). The conclusion: CFS s an oxygen toxic state and oxygen toxicity status appears to determine
outcome in therapeutic trials. Therefore, oxygen toxicity is a locus of control in this illness. These findings appear to force a narrowing of potential causes of CFS because whatever pathophysiology one puts forth
must explain universal oxygen toxicity in CFS. Dr. Cheney will also present recent evidence of the likely cause of this oxygen toxicity.

Cell Associated Therapy for Chronic Fatigue Syndrome: Is this the Next Frontier? Dr. Cheney will discuss the use of low molecular weight (LMW), mammalian tissue derived peptides as therapeutic agents when applied to the skin using novel transdermal gels. These LMW peptides are known to control gene expression and can shift organ function toward normal. Data will be presented from a one-year prospective trial in CFS using these LMW peptides which produced significant improvement in function (KPS>10, p<0.006, N=18). Therapy with LMW peptides from cell associated, mammalian tissue homogenates appear to offer a significant benefit in CFS, especially where it counts the most, namely, the functioning of the patient.

This event is being co-sponsored by the Northern Virginia CFS/ME, FMS, OI Support Group and the CFS/FM Support Group of Dallas - Fort Worth.

A 2-disc DVD master will be produced by a firm in Washington, and orders will be taken, duplicated and mailed out by a DVD fulfillment company in New York. DVDs will be available in both NTSC and PAL formats, making them compatible with DVD players around the world. No pre-orders will be taken. Ordering information will be posted as soon as it is available, which will be some time after the seminar.

Carol Sieverling
CFS/FM Support Group of DFW

WEBINAR ANNOUNCEMENT

The New Face of Fibromyalgia
Tuesday, March 10th - 7:00pm EST

Please join us on Tuesday, March 10th, at 7 pm (EST) for a one hour online live interactive webinar, The New Face of Fibromyalgia, with Kim Dupree Jones PhD, Associate Professor in the Schools of Nursing and Medicine at Oregon Health & Science University.

Space is limited so please click here to register today.

Dr. Jones will be providing the latest guidelines for the diagnosis and treatment of Fibromyalgia. She will focus on a comprehensive treatment program including information about other diseases and conditions that often accompany it.

NOTE: After you receive conference details, please run the System Test (link is included in registration email) to make sure your computer is ready. We're sorry that our program will not support Macs until later this year; you may register and participate by phone only and we will post the PowerPoint presentation on our website the day before the webinar so that you can follow the presentation.

Can’t make it this time? Don’t worry! We will archive this webinar on the APF website.

Thank you,

The American Pain Foundation

Find The CFIDS Association of America on Facebook!

In February, 660 CFIDSLink readers responded to the Association's first in a series of reader surveys. CFIDSLink is a free monthly e-newsletter that delivers news, treatment information and personal perspectives to your email inbox.

In response to survey participants' requests and others who have expressed their interest in seeing the Association represented on Facebook, The CFIDS Association of America now has a Facebook page and a Facebook cause, SolveCFS. Both are available to anyone with a Facebook account, so we hope you'll join us there soon if you're not a fan yet! Explore the photo albums and notes for information about CFS, the Association's work and its leaders. Keep up with news between issues of CFIDSLink and the Chronicle. Make connections with others interested in making CFS history. Share information and recruit your friends to the effort to conquer CFS.

The March edition of CFIDSLink will be sent to subscribers on Wednesday, March 4. If you're not already a subscriber, join now at http://visitor.constantcontact.com/email.jsp?m=1102157695492&p=oi. In that newsletter, we'll let you know how the first few days on Facebook go and will share lots of other news with you! 

Thank you for your continued interest and support,

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

From Cort Johnson's New Blog

Zombie ME/CFS Patients From the ICU

by cort on February 22, 2009

What do infection, stress, over-exercising and the intensive care unit have in common? Different researchers believe that each can trigger a chronic fatigue syndrome-like (ME/CFS) state. A recent article in the New York Times added a short stay in the intensive care unit (ICU) to the list.

Anecdotal evidence suggests that a significant percentage of ICU patients experience significant and sometimes disabling fatigue, cognitive problems and mood changes after being discharged from the ICU unit. Particularly compelling was the case of a high school athlete who, after a week in the ICU unit battling pnuemonia, deteriorated greatly after being discharged. A year later this former athlete tested below normal in fitness with his mother proclaiming that his mood and cognitive abilities had changed greatly.

This group of fatigued, cognitively challenged and ‘moody’ patients joins a long list of other patients with mysterious ME/CFS-like ailments. They include a significant number of post-cancer patient, heart surgery, hepatitis patients treated with interferon, and a host of other patients whose lives have been derailed even as they’ve been pronounced ‘cured’ by the medical profession.

Their presence could signal a brighter future for perennially underfunded ME/CFS researchers once the research community connects the dots between all these ‘different’ types of patients. Right now research into this mysterious problem is minimal but in the last year the New York Times has highlighted both cancer and ICU patients with mysterious fatigue. Collectively speaking the number of patients with mysterious fatigue and cognitive problems is huge

One ME/CFS researcher, Dr. Andrew Lloyd of the Dubbo project, is very interested in these patients - he believes they all have some form of ‘ME/CFS’ and he has done a small study comparing them. Two problems: getting more money to study these patients and overcoming reluctance of other researchers to include chronic fatigue syndrome patients in their studies.

To stay tuned to Cort's blog articles:  http://aboutmecfs.org/blog/

Finding Affordable Meds

Your doctor may also be able to help you enroll in a prescription drug aid program like the one sponsored by the Partnership for Prescription Assistance, a coalition of pharmaceutical companies and health-care advocates, says Cheryl Fish-Parcham, the deputy director of health policy at Families USA, another consumer advocacy group.

Another good source for help with finding affordable prescriptions (and all types of medical financial assistance) is MedlinePlus,

A wide-ranging, often rankly speculative and occasionally irreverent take on the world of chronic fatigue syndrome (ME/CFS)

 http://aboutmecfs.org/blog/ 

Nancy Henson