Posts Tagged 'IACFS/ME'

Connections, study contact info

One of the highlights of (most) meetings is the opportunity for connecting with people. Such was the case with the IACFS/ME conference held last week in San Francisco.

(There have been some excellent summaries of the IACFS/ME conference — among them: http://phoenixrising.me/archives/24323 , http://phoenixrising.me/archives/24390 , http://phoenixrising.me/archives/24452 , http://phoenixrising.me/archives/24522 , http://phoenixrising.me/archives/24553 , and http://quixoticmeblog.blogspot.com/2014/03/detailed-notes-from-all-4-days-of.html .)

Over and over people talked about how they had exchanged emails with this person or that person for years but had never met in person until this meeting.
ME is such a horribly isolating illness. Even caregivers are often isolated.

Therefore being able to meet other advocates in person, being able to exchange ideas with clinicians/researchers, etc. is exciting and invigorating (and exhausting).

Among the people I spoke with was Dr. Jim Baraniuk who has a study that will start soon (he did not say when). He provided the following contact info for it:

Exercise and Brain Scan Study
Purpose: to understand Chronic Fatigue Syndrome (CFS)
Who: Adults (over 18 years old) with and without CFS are invited to participate.

What: Subjects will have magnetic resonance imaging (MRI) brain scans then bicycle exercise tests.
They will stay overnight, then have a 2nd exercise test and MRI the next day.

Where: Clinical Research Unit, Georgetown University, Washington D.C.
Compensation for time and travel will be paid.

Contacts: Telephone 202-687-8231, FAX 202-687-9886

E-mail:cfsresearch@georgetown.edu or baraniuklab@gmail.com
Georgetown University Medical Center (edit *)

When you contact the lab you might ask (among other things) for clarification about the extent of the bicycle exercise testing, the criteria for patient selection, whether or not any cognitive testing will be done as well (if so, at which points during the study). Please share the responses you get and help us make them widely available.

Many of us came away from the IACFS/ME conference with information on numerous studies and avenues of exploration, getting lots of ideas, hearing hints about soon-to-be-published studies and great connections (some new ones, some long-standing ones but first time in-person meetings)…..

This was a real treat and I am deeply grateful to everyone who helped facilitate attendance at the meeting.

 

(*edited  – disclaimer – I have no connection to and accept no responsibility for the study or participation in it. Thanks for the reminder TK.)

Announcement: Position Paper in Support of the CFSAC Recommendations on the CDC CFS Toolkit and the IACFS/ME Primer (updated 12 Sept 2012)

On September 10, 2012, an alliance of ME/CFS patient organizations and independent advocates submitted a position paper to the CDC in support of the June 2012 CFSAC recommendation to remove the CFS Toolkit and make the IACFS/ME Primer widely available.  Our goal in submitting this joint position paper is to improve patient care by significantly improving the clinical guidance material available to medical providers, insurance companies, health clinics, secondary medical educators and patients.

For years, patients have expressed serious concerns regarding the content of the CDC CFS Toolkit because it fails to convey the seriousness of the disease, offers inadequate diagnostic guidance and it even fails to acknowledge PEM as a hallmark symptom while focusing on CBT and GET for treatment. The Toolkit also states that the same clinical guidance is appropriate for both ME/CFS and “CFS-like illness” (chronic fatigue but without the 4 symptoms), which only blurs the line with other causes of fatigue such as depression. As a result, the CDC CFS Toolkit has mis-educated medical providers and led to inadequate patient care, harmful clinical recommendations and stigmatizing of patients. 

By comparison, the IACFS/ME Primer provides much more accurate and complete information about the pathology of ME/CFS and also provides extensive diagnostic and treatment information. As Steve Krafchick, CFSAC member, stated, the IACFS/ME Primer is “a good, basic document that gives a primary care physician a real road map, whether it is to consider a differential diagnosis or different treatment options. There’s nothing like it anywhere else”.

Is it perfect? No. There are opportunities to improve it and the IACFS/ME has undertaken an effort to do just that. But as it is, the content of the Primer is far superior to the content of the Toolkit, providing both immediate benefits to medical providers and patients and also a significantly better baseline from which to make improvements over time.

It is for that reason that the alliance of ME/CFS patient organizations and independent patient advocates have jointly submitted this position paper to the CDC and requested that the CDC seriously consider this patient perspective as they consider their actions on the CFSAC recommendation. We have asked for a response to our recommendations by Oct 22, 2012.

You can access the position paper, toolkit and primer at the following links:

CDC CFS Toolkit: http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf

IACFS/ME Primer: ME/CFS: A Primer for Clinical Practitioners – IACFSME > Home

The full position paper: http://dl.dropbox.com/u/89158245/Position%20Toolkit%20IACFSME%20Primer%20Sept%2010.pdf

If you have any questions or comments, do not hesitate to contact one of the organizations or individuals who submitted the position paper. These include:

ME/CFS Patient Organizations          (update 12 Sept 2012 – Pro-Health has signed on)

Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago Phoenix Rising
Coalition 4 ME/CFS Portland Fibromyalgia-ME/CFS
The Connecticut CFIDS & FM Association, Inc. Rocky Mountain CFS/ME and FM Association
Mothers against ME Speak Up About ME
Massachusetts CFIDS Association, Inc. Vermont CFIDS Association, Inc.
New Jersey CFS Association, Inc. Wisconsin ME/CFS Association, Inc.
PANDORA (a.k.a. CFS Solutions of West Michigan)

ME/CFS Patient Advocates              (update 12 Sept 2012 – Rich Carson has signed on)

Lori Chapo-Kroger, R.N. Mike Munoz
Lori Clovis Matina Nicolson
Mary Dimmock Donna Pearson
Pat Fero, MEPD Mary Schweitzer, Ph.D.
Joan Grobstein, M.D. Meghan Shannon
Jean Harrison Rivka Solomon
Cort Johnson Jennifer Spotila, J.D.
Patricia LaRosa, R.N., MSN Tamara Staples
Denise Lopez-Majano Patty Strunk
Billie Moore

Have you read Chronic Fatigue Syndrome Myalgic Encephalomyelitis A Primer for Clinical Practitioners?

Chronic Fatigue Syndrome Myalgic Encephalomyelitis A Primer for Clinical Practitioners  

International Association for Chronic Fatigue Syndrome Myalgic Encephalomyelitis (IACFS/ME) 2012 Edition

 

Highlights of the Primer include:

  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)

 

(The IACFS/ME requests a contribution of $15.00 (U.S.) for the Primer.    Follow these links to contribute for the Primer:

$15.00 Donation (via Paypal)

Or your own amount (via Paypal)

http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx)

 

Help the IACFS/ME make this the best Primer yet for ME/CFS! They are collecting comments and suggestions on the Primer and will update it on their website.

 

 

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf