Anyone good with making online petitions? It can be very effective to say, "Look, here we all are, waiting for a serious answer to a disabling disease, and you're using bad science to teach new doctors. Here's the evidence found that it doesn't work. All of us have either tried that and it was ineffective, or would instantly shut down on advice if it was given in that way. You're teaching doctors to alienate us. Is that what you want?"
This kind of tone can be very helpful. I mean, some of us dislike Dr. Lipkin, but he's helpful in some ways. For one thing, he's a distinguished researcher, and pointing to his research would show them they are way off. Or at least force them to say "we don't have any complete answers yet, do your best in this area."
I wonder why its so hard to say that to doctors? It makes no sense o train them as if they are robots to take the same action for each person who has the same symptom. This is all part of the erosion of doctor's autonomy in choosing a therapy that works for a patient. It's telling them what to do to avoid being labeled "rogue" but is the opposite of helpful advice for patients.
Their summary is easily debunked. If you progress to the "Key Points" section you find:
Chronic Fatigue Syndrome
- Diagnostic criteria established by the CDC define CFS to be present when there is fatigue lasting at least 6 months associated with decreased functional activity and somatic symptoms, and the symptoms must be not attributable to another disease.
- There are no physical findings or laboratory abnormalities unique to CFS, the diagnostic process requires a careful history and physical exam, mental status screening, and a core set of laboratory tests.
- Before a diagnosis of CFS is made, other treatable causes of fatigue must be excluded.
- Both graded exercise therapy and cognitive behavioral therapy have been proved effective in managing CFS when combined with specialist medical care.
- CFS is not associated with increased mortality but does reduce quality of life.
- The following are predictors of poor prognosis in CFS: longer duration of illness, depression and anxiety, higher level of fatigue, and attributing the syndrome to a physical cause.
- OK, so if it's not physical, (line item 6) then why does graded exercise therapy supposedly "work"? (line item 4)
- Show me one person anywhere who is not depressed or anxious after they've been ill for 6 months, any disease, any continent....
- Show me a specialist for CFS, the ones I know about are not using GET or CBT because they're ineffective.
- If there are no abnormalities in lab work, then why order labs?
- The CDC no longer recommends what you're recommending. You're out of date. ref: https://www.cdc.gov/me-cfs/treatment/index.html
I could do this all day. The lack of logic should be screamingly obvious to any doctor in training.