Nmefman-contacts mailing list
The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations (the most pertinent parts of long articles will be highlighted for the reader)
Friday, February 25, 2011
MESSAGE FROM LYDIA
My Dearest Friends:
The natural response to unfairness is to lash out in outrage. Right now is such a time that after some highs some lows have come our way. For those of us who have been around a long time, we are very familiar with those downs as in the past there were many. This is one of those times and it means it takes more effort to stay on track.
There have been many reports over the past 20 years or so of possible causes of ME/CFS and FM, many treatments suggested, and we have been hailed as the laziest people around. You know the old saying, sticks and stones may hurt the bones but words will never hurt me. The negative reports may not be words in the normal sense but they are still the opinions of people which means other opinions and tests can be done.
Now, more than any other time, is the need to stay focused and not react. Remember what we want, a standardized international definition for ME/CFS that not only clinicians but researchers would use so that the test results will be based on the right definition and be more meaningful. As long as a researcher can select which definition to use, he or she will use one which suits his or her purpose or outcome. The PACE Trial is a good example.
Another focus which is just as important is that proper research gets done and that we are all on the same page. Researchers need to know what everyone is working on so that there can be better collaboration and quicker results and no repetition.
Our best defense is offence. Get the scientific facts and let them speak for themselves. No amount of outcry will do as much as research results.
Remember we have come a long way from having no information but what that also means is that some of it will be negative. We can choose to concentrate on the negative or stay focused and remember what we are trying to accomplish.
Researchers pinpoint protein abnormalities in CFS, Lyme disease patients' spinal fluid.
The CBS Evening News (2/23, story 7, 1:55, Couric) reported, "Chronic fatigue syndrome: Some believe that's a made-up condition." CBS (Miller) added, "For as many as four-million Americans afflicted with CFS, science offers tangible proof they have a disease. ... Researchers examined the spine fluid of CFS patients, healthy people, and patients afflicted with a similar disorder, Lyme Disease. They found over 700 proteins or indicators of disease unique to CFS patients alone."
According to the AP (2/24), the study in the journal PLoS analyzed spinal fluid from 25 "chronic Lyme patients, 43 people diagnosed with CFS and 11 healthy people." They detected "more than 2,500 proteins in each group"; and found "clear sets of proteins -- hundreds each -- unique to each disease." Lead researcher Dr. Steven Schutzer of the University of Medicine and Dentistry of New Jersey said the next step will be to "study more people to see if certain protein abnormalities" might serve as a diagnostic signature. Specialists called the study a "promising start" for clearing up confusion about the two illnesses. But "much more work is needed," cautioned Dr. Joseph Breen, a Lyme specialist at the National Institutes of Health, which "helped fund the work."
The Wall Street Journal (2/24, Marcus, subscription required) adds that Dr. John Aucott of Johns Hopkins School of Medicine, who was not involved with this study in PLoS, said the findings could ultimately lead to the development of more effective treatments for both illnesses. Dr. Aucott is the lead researcher for a study that will enroll 100 Lyme disease patients and seek to identify blood differences between people who have chronic Lyme disease and those who recover after treatment.
Source: AMA Member Communications [MorningRounds@ama.custombriefings.com], Feb 24, 2011
WEDNESDAY, FEBRUARY 23, 2011
Our quarterly newsletter QUEST has just been published and mailed to all those who subscribe. However, we now have added a new section to QUEST entitled THE JOURNEY which deals with treatment, concerns and support issues. In view of this, we are making this issue available to anyone who would like a copy.
Please contact me and I will email you a copy as an attachment or provide me with your mailing address and I will send you a copy via the postal service free of charge.
Here is info from PR forum with permission to repost:
ALL HANDS ON DECK!
I've been told by 2 people that Katie Couric will be reporting on the UK PACE trials tomorrow on CBS Evening News. This will be the first national evening news report I've seen in years on ME/CFS.
We do not know what angle Katie will take or how balanced her report will be but YOU can try to make it more balanced. Write or call CBS Evening News tonight or tomorrow and tell them your concerns about the PACE trial. In particular, share your non-improvement or deterioration with graded exercise therapy or cognitive behavioral therapy. Tell her you do not fit the Oxford criteria (which is not used by the majority of ME/CFS researchers and stresses fatigue without the specific inclusion of other symptoms), you have more symptoms than just fatigue, and therefore, the PACE results do not apply to you.
Refer her to ME/CFS researchers like the Alan/ Kathy Light at the Unversity of Utah, Dr. Leonard Jason (DePaul University, Chicago), Dr. Nancy Klimas (the University of Miami), Dr. Chris Snell (University of the Pacific, California) to talk about what happens biologically to ME/CFS patients when they exercise.
Go team! [cheerleading icon here]
CBS Contact info:
[Note: even if the story gets moved to another day, at least CBS will be left with a story they might follow and this is a chance to counteract the damaging media reports we have already encountered]
IN THE NEWS
OTTAWA Medical researchers from Ottawa and Britain want all their colleagues to tell the world what studies they're working on. They indicated that the left lab doesn't know what the right lab is doing. That applies to new drugs, how to vaccinate in a flu pandemic, research etc. "And so there is no place in the world where you can go and see who's doing what in the world and what's going on." States Dr. David Moher of the Ottawa Hospital Research Institute. There is much duplication in systemic reviews and money wasted on duplications which could be spent on useful work somewhere else. Dr. Moher and colleagues in Britain have set up a website where scientists can announce their studies in the earliest stages at no cost to prevent such waste. An open access website is to start operating today (February 22, 2011) at the University of York in England at http://www.crd.york.ac.uk/prospero.
Reporter, Tom Spears, Ottawa Citizen, February 22, 2011