Oh, please, yes, please! I am sick and tired of being treat like a moron by the medical profession or as if my condition is all my own fault...lets get them educated!
Just one extract from what seems a very important conference. CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf
"Dr. Jason's Presentation
Dr. Jason said that he also planned to give his presentation at the Reno
IACFS/ME conference.
He noted that there are about 200 publications each year on CFS, according
to Freidberg and Associates. It is unclear how CFS is represented in the
published literature, particularly with medical textbooks. Medical textbooks
are important because they are:
. A cornerstone in the training of medical staff and students.
. A main source of references and reviews for medical professionals.
. A source of information on coding and treating a variety of illnesses.
The objective of Dr. Jason's study was to evaluate the coverage of CFS in
medical textbooks to determine the extent and comprehensiveness of CFS
information.
Textbooks were gathered from a number of sources including university
medical school libraries and medical school book stores. The study looked at
129 textbooks in different specialty areas. The areas of interest in the
study were the number of pages and percent of space allotted to CFS. Dr.
Jason discussed pages in his presentation. The comprehensiveness and extent
of representation of CFS information was included, and CFS was compared with
to other illnesses.
Page representation:
. Looked at a total of 140,552 pages in 129 textbooks. Always took the most
recent version of a textbook, primarily within the last seven or eight
years.
. CFS was represented on 125 pages, or .089 percent of the potential pages
examined.
. Holistic, psychiatry, and internal medicine texts had the highest
percentage of mention of CFS; endocrinology, obstetrics, and emergency
medicine the least.
If CFS was mentioned, the study also examined information concerning:
. The illness ideology.
. The probability of Axis 1 disorder.
. Treatment options.
. Prevalence rate.
. Inclusion of ME terminology.
Results:
. 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
The problem, of course, was that there was very little mention.
. 42 textbooks (32 percent) had something about etiology. Sometimes it was
biogenic, sometimes psychogenic, sometimes both.
. 17 textbooks (13 percent) mentioned the high probability of Axis 1
Disorder [a major psychiatric problem].
. 25 textbooks (19 percent) mentioned some criteria.
. 37 textbooks (28.7 percent) indicated some treatment associated with CFS.
The most common were cognitive behavior therapy, anti-depressants, graded
exercise or exercise, and supplements.
. Only 18 textbooks (14 percent) had any mention of prevalence rates.
. Only 19 books (14.8 percent) had any mention of ME terminology.
Summarizing this part of the study: Critical domains within CFS are not well
represented in medical textbooks, either in terms of etiology, criterion, or
treatment options.
Illness Comparison
Next the study analyzed a random sample of 45 books from the 129 to compare
CFS with illnesses that are much more prevalent-cancer and diabetes-and with
illnesses that are less prevalent-MS [multiple sclerosis] and Lyme disease.
Even the illnesses that are less prevalent than CFS have greater coverage in
medical textbooks. CFS appeared in 24 percent of the 41,922 pages while Lyme
disease appeared in 61.8 percent and MS, 53 percent.
Major findings:
. CFS is underrepresented in medical textbooks.
. CFS is also given fewer pages than diseases that are less prevalent.
Why does this matter?
. 77 percent of CFS patients reported they had experienced a negative
interaction with a healthcare provider.
. 66 percent believe that their condition had been made worse after seeking
care from their doctors.
. Family physicians feel the continuing education and training they received
leave them unable to diagnose and manage CFS.
. 48 percent of general practitioners did not feel confident that they could
diagnose CFS.
Conclusions
. Healthcare professionals need to be adequately trained and provided with
up-to-date, non-biased information in their textbooks.
. Medical textbooks may be a critical component in raising CFS awareness and
there is a clear need for this illness to receive more representation.
Additional points of interest:
Migraines plus CFS suggests:
• Autonomic abnormalities
•Neurogenic inflammation
very likely contribute to the high level of overlap between migraines and CFS.
From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy.
From this we wanted to look more at the autonomic nervous system.
Hypothesis: Central nervous system dysfunction is a critical component of CFS and related syndromes such as FM, Persian Gulf War Illness, multiple chemical sensitivity, irritable bowel and bladder syndromes, and other allied conditions. Analysis of the fluid flowing from the brain will identify factors that may indicate the pathology of CFS to direct the creation of new treatments, and serve as diagnostic biomarkers for future testing.
Researchers obtained cerebrospinal fluid from Gulf War Illness (GWI) subjects (most also had CFS), FM subjects (many had CFS), and control subjects for a total of 62 subjects. Researchers compared pooled samples from GWI, pooled samples from CFS, and pooled samples from controls. The identified the proteins that were only present in the GWI and CFS people. They also took individual specimens from the CFS and GWI people and compared them to individual specimens from control subjects.
Dr. Baraniuk: It was mind boggling because we ended up with about 10 proteins that were present only in our CFS group and not present in the control group. The odds of this are about 10 to the minus 15. We’re currently doing the proteomic analysis using a high-end orbitrap mass spectrometer to see if we get the same pattern. The key proteins from the CFS-related proteome, I think, give us some potential clues as to what’s going on
Toni M., Maryland
Thank you, Chairman Oleske and members of the Chronic Fatigue Syndrome Advisory Committee, for this opportunity to address issues of help and accommodation for those living with CFS.
My story is one of resistance and denial of disabling conditions. Looking back, I had something wrong since early childhood. My body became so overwhelmed over time, I ended up in a bad state of chronic fatigue syndrome.....
As the nature of CFS becomes better understood by more professionals, more CFS patients may appreciate their physical and cognitive deficits—“may” is the operative word here. Don’t count on it. Education helps, knowledge helps, but you have to be ready to hear it. But taking limitations seriously can help you ask for help a little faster than I did. Help is hard as CFS people hold onto the idea of recovery any minute, as I did. When you can dress yourself and toilet yourself and do dishes occasionally and go out to dinner and go shopping—although not sit at a job without feeling horribly sick—when you have that going on in your life, the idea of recovery any minute is ever present…the idea that life will go back to what is normal for them—for me—before CFS was present.
Programs are severely needed that help CFS people and understand that their wishes for recovery and their up and down days are normal. We live and cope with CFS with difficulty, often struggling with symptoms for years or decades without diagnosis, as I did, without even physician support, as members of this committee know. Programs helping CFS patients cope with the nature of their conditions has the potential—the potential; don’t count on it—to short circuit patients’ denial and resistance, hastening acceptance, with which the best of us need help; helping us move toward healing.
Lars Ellen M., Arizona
I am 51 living in Tucson with my husband. I have CFS, OI, FM, allergies, Hashimoto’s disease, pernicious anemia, fluctuating thyroid, ADHD for which I cannot use drugs because of memory loss side effects, sleep apnea, restless leg syndrome, and postural limb movement syndrome causing jerking and kicking the nonsense out of bedpost and darling husband.
Disability retirement from work was a result of a series of events culminating in five back surgeries beginning in 1999. I use two canes to walk short distances and I drive a little. Antibiotics are needed for the foreseeable future due to chronic MRSA [methicillin resistant Staphylococcus aureus] infection causing chronic digestive problems.
CFS patients need programs designed to help patients more easily find resources, tools, and alternatives to maneuver past the obstacles of disability, enabling patients to feel more part of life and the lives around them. It is as confusing for patients as for their families that some days we seem almost normal only to relapse into a heap the next day. This is serious stuff, and patients and their families benefit by knowing what to expect while we wait for research to help some more.
CFS means not knowing what to expect on a given day. Some days, things get done; some days, I may be so stove up that showering, bathing, changing clothes is out of the question. Dressing, especially to be out and about, is nothing like my former life. I have no more strength for pulling on pantyhose or stumbling in high heels. I dress in easy access clothing and comfortable shoes. But there are days I crawl out of bed, rubber band my uncombed hair, and spend the entire day in pajamas.
Neurological symptoms cause brain fog and trouble holding onto instructions, directions, words, and names, including those of my two grown sons, like a game of charades or password. Shopping for a mattress, I gestured wildly with slurred speech, exclaiming, “I need bird…feather…not up…for top.” The word I sought was “down” for a mattress pad stuffed with down feathers. B12 shots help, but after a shot a few days ago, writing this has taken several days—before editing.
My best friend and husband, Glenn, and I have set up our home for my ease of movement—more accessible kitchen and laundry, floors that won’t trip me up and are softer to walk on. I need an indoor temperature of 66 degrees to deal with chronic temperature dysregulation. I wear long sleeves to hide bruises from stumbles and to keep me comfortable in my cooler than normal house.
People like me feel overwhelmed by things we must do much less fun things like travel. We feel almost forbidden to have fun once we no longer work. I have given this a lot of thought. ...
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