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Doc Talk: filling the information gap between CFS clinicians and patients
Monday 29 August 2011
Question from Patricia White (posted to Research1st’s “5 Picks for May 25” post): How does all this translate to my primary care doctor and my medical care?
If you have found it difficult to talk with your doctor about the science of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), you have bumped up against the huge information gap that separates people with ME/CFS from their primary care and specialty providers. This gap creates frustration for both parties. It exists for complex reasons and the gap has been difficult to close, but I believe we are making progress.
The gap is aggravated by the busy, stressful pace of medical practice and a state of general distrust between patients and medical providers, but the real problem is that the science of ME/CFS is not accessible to most practicing physicians.
Medical providers are expected to practice strictly within the framework of their training and continuing education, and not venture “outside the lines” of what has been scientifically proven. There are fairly strict standards for what makes scientific information “good” and trustworthy. “Good” science must be reproducible and substantiated with large studies. Only “good” science makes it to medical school curricula and continuing education programs. Personal testimonials, subjective information, unpublished data, small studies, observations that have not been replicated or papers published in inaccessible journals are all low on the “good” and trustworthy scale, and thus are not used to educate physicians. Treatment guidelines can be proposed by experts, but they will only be as respected as they are backed up by “good” science. So when a patient takes a piece of ME/CFS information to a physician, it will be received with the level of enthusiasm and respect that relates to this pecking order of “good” and trusted science.
That puts the community of ME/CFS in a bind. It’s not that we haven’t made progress, but ME/CFS and FM (fibromyalgia) research still relies heavily on subjective information (descriptions of fatigue, achiness, brain fog, etc.), and much remains underfunded, unpublished and unreplicated. Findings are often published as small studies, without randomization or controls, in unknown or inaccessible journals. Frankly, we are also a community of patients, clinicians and scientists who can’t agree on the name, the definition, the role of comorbid conditions, the mind-body overlap, how much patients should exercise, or how to treat the symptoms, to name a few issues.
I have spent more than 10 years doggedly doing my small part to bridge the gap, but the gap is formidable. My methods include:
Have my efforts made a difference in the gap? Hopefully, but progress has been painfully slow because the information I provide is low on the “good” and trustworthy scale as discussed above. I guess I know a little of what an ME/CFS patient feels like when facing a health provider eye-to-eye across the gap.
Changes are in the air. Events of the past two years have helped close the gap. The scrutiny of XMRV and the emergence of new biomarkers have led to more “good” science and publications in high profile journals. Many new physicians and scientists are part of the CFS community. The time is right for everyone to give another little push to close the knowledge gap between practicing physicians and their ME/CFS patients.
If you want to direct a skeptic to “good” sources of CFS knowledge, here is my advice for the medical professional:
The International Association for CFS/ME (IACFS/ME) will soon be unveiling ME/CFS treatment guidelines that will be readily accessible to everyone. Stay tuned.
Don’t be discouraged if your provider won’t read the articles your present during the visit or show visible enthusiasm. You should still periodically give your medical provider a copy of recent articles or research published in a respected medical journal. He or she might be tempted to read it this time!
The above originally appeared here.
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