The comment section of Miriam Tucker's new Medscape article is, once again, full of physicians making extremely derogatory remarks about patients with ME/CFS/SEID. Curiously, the article is under the Psychiatry and Mental Health section, whereas one of her recent articles was under Rheumatology.
Here is the kind of ignorant prejudice a new name is not going to overcome. The only thing that's going to change the minds of unthinking people like this is if they can order a blood test. Until then, it's a fake disease.
And then one doctor with first-hand experience of how destructive this disease in comes in and shares his personal story:
And is immediately met with the stock response that it must be "something else" because of course this joke disease couldn't possibly cause this sort of pervasive destruction of your life:
Here is the kind of ignorant prejudice a new name is not going to overcome. The only thing that's going to change the minds of unthinking people like this is if they can order a blood test. Until then, it's a fake disease.
Dr. James Weber Pediatrics, General
A new name -----now "BIG PHARM " will come out with a new drug for it !! Oh...... I can see the profits rising !!!!! Nebulous disease , nebulous exam and no definitive test , prospective patients for life !!!!! Whatever happened to SSRI's ?
Dr. Wallace Schwam| Internal Medicine
Absent hard biological evidence, Chronic Fatigue Syndrome might lots of people as "Sick" who are in monotonous jobs, bad marriages, or plain bored with life.
Dr. John Foster Family Medicine
Chronic fatigue and fibromyalgia - two wastebasket diagnoses in search of pathology.
Dr. Dario Zagar Neurology
The new name seems to be nothing more than an exercise in rebranding. At best it is redundant--what additional information does the word "systemic" provide to "exertion intolerance disease". Next, given the lack of clear etiology in most cases, it still remains more of a syndrome than a disease; there could potentially be various causes for the same constellation of symptoms. That makes "exertion intolerance syndrome" a more accurate moniker; given that people have fatigue even in the absence of significant exertion in most cases, why is that any better a description than "chronic fatigue syndrome"? Well, at least they didn't choose myalgic encephalomyelitis, which is simply incorrect.
Dr. D E Family Medicine
"A rose by any other name would smell as sweet"
Dr. Kathy Pittaway Psychiatry/Mental Health
This sounds way too much like de conditioned individuals w/o motivation or desire to resume activity. Please, let's not pathologist all human experience.
Dr. Phil Gauthier Internal Medicine
great, disability here I come! glad I got that plan a long time ago.
Dr. Dan Mullin Emergency Medicine
So CFS/ME is a disease where patients are usually middle-aged, tired, depressed, have sleep difficulties and muscle aches. Lab work is essentially normal, and it's treated with better sleep habits, healthy diet, exercise, NSAIDs, antidepressants, etc. I think the incidence is much higher than what is published. I like the treatment but hate the diagnosis. We, as physicians, have to stop giving out so many diagnoses, especially those that sound dangerous like Myalgic Encephalomyelitis. Patients hold onto those diagnoses forever, thinking they have something real and serious. The symptoms are real and easily treated, but it's not serious and doesn't need a diagnosis. Everyone has these feelings during their lives...some for a couple months, some for six months, some for much longer, some just handle them better than others.
Dr. William H. Warrick III MD Family Medicine
Freud had a better name for it: Nuresthenia.
Dr. C. David Smith Gastroenterology
It seems to me that IOM is marking their territory. I will have to look at the references to see if in fact their are pathologic findings of encephalomyelitis. Otherwise it will remain a syndrome.
Dr. Donald Gehrig Internal Medicine
aka, major depression with somatic complaints...which is still just too inconvenient and unacceptable for most and gets no extra funding for IOM types...why would the IOM be the decider on this?
Dr. robert bayer General Practice
what a huge pile of crap......bring on the clowns
David Baker Physician Assistant
Disability here I come. Definitely declining in my occupation, social and recreational ability at 50. I am sure I have some cognitive decline in a burgeneoning computer age. I definitely have post exertional malaise. My workouts and 100 mile bike rides are followed by a crash and even occasional post exertional orthostatic hypotension. I am almost there to disability retirement. Why not -its a carreer choice for so many of my patients.
This is another basket diagnosis that will be used by lackluster practitioners to avoid a proper work up and possible discovery of true pathology. I see this with FM patients that have bursitis, arthritis and tendonitis in varying degrees with a PCP who is to busy to workup multiple problems.
Dr. a m Rheumatology
One of the byproducts of labeling subjective symptoms as bona fide organic disease is that the diagnostic criteria ultimately expand, and wind up including just about anybody who doesn't feel well for a length of time. (See fibromyalgia). Until biomarkers or other available objective lab abnormalities are discovered, I would not consider this report as anything other than a rehash of all pre-existing, contentious and ambiguous diagnoses.
Dr. Donald Gehrig Internal Medicine
major depression IS real...not dealing with that is UNreal
Dr. S L
how many patients have BMI in the overweight to obese range- just curious since i am in academia and haven't done direct pt care in the last 6 years
Dr. Barry Mirtsching
A "new" path to disability.
Dr. James Weber
In my career in medicine [35 years ] very few if any "diseases " have had to change their name to get adequate recognition or to distance themselves from negative connotations associated with their original name. Just a comment , that's all .
Dr. Paul Rochmis
First it was neurasthenia, then non-articular rheumatism, then psychogenic rheumatism, then fibrositis, then fibromyositis, then back to fibrositis, then fibromyalgia syndrome......now "SEID." When will it end?
And then one doctor with first-hand experience of how destructive this disease in comes in and shares his personal story:
Dr. v m Family Medicine
I am a 45 yr old family physician with income of $200k + before I was struck with a flu, then this illness 3 yrs ago. I have been homebound since, unable to ride in a car to even less than 5 miles due to intense draining. Since then, unable to work due to this weakness, or play outside with my 8 yr old. Sold our 5 bedroom 3 bath home and moved into an apartment and back to an intern's salary (disability).
Will any of the naysayer physician colleagues here want to trade places with me?
First, do no harm. With your ignorance, and more appallingly, your unwillingness to even look at this illness, you are causing your patients extreme harm. It would help much better, if you rather say truthfully, that you are not aware of this illness or had much experience with it, so you are unable to help. Patients understand. This is not a time for your ego, peoples' LIVES are at stake here.
Nobody can know more about this illness than a physician with this illness. So, do not even pretend to know and dump it into a waste basket. Unfortunately, there are a lot of physicians like me. We are all willing to testify. ( I don't know if IOM included such physician-patients in their study. If they didn't, they should ).
My term for this illness would be PRAG, Prolonged recovery asthena gravis. Asthenia indicates extreme lack of strength, gravis, the serious nature of this illness, Prolonged recovery is the sine qua non of this illness, the recovery can be days, weeks, or years. There are many patients who have been home or bed bound for decades.
Naysayers, please refer to phoenixrising.me which has over 10,000 patients sharing their disabling illness, which is CFS/ME.
And is immediately met with the stock response that it must be "something else" because of course this joke disease couldn't possibly cause this sort of pervasive destruction of your life:
Dr. wahid tazudeen Neurology
Um...you might want to get a second opinion on your diagnosis. That sounds like something else.
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