This is what we're up against

Sidereal

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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.

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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Ecoclimber

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The comment are appalling but they are required to abide by the medical standards and procedures stated by their various medical societies. They are required to adhere to prerequisite biomedical ethical standards. If not, report them to the state health board and consider a malpractice suite for not properly following standard procedures.

@Sidereal since this number of posts have expanded to 3 pages, it makes sense to edit my response here. I meant my posting to apply to the future implementation of the mandate by the IOM. Once this is in place, then the standard of care is elevated to the new criteria.

Notwithstanding, no patient should be subjected to redicule, dismissiveness, arrogance, belittlement by anyone within the medical profession. Medical practioners are not gods and should be treated in the same fashion as other professionals. If the above attitudes were experience by someone who was a customer or a client, you bet they would file a complaint with that company.

In the same manner, medical practioners are governed by a code of ethics of 'do no harm' to the patient which means no further psychological harm. Patients have become too complacent when they are treated with abuse by their PCP often assuming an attitude of 'movie star quality' to their PCP.

If more patients filed complaints to their state health/medical board and these complaints start piling up against a particular doctor, you would see some action to address this issue to negate this type of behavior. Complaints to the doctors group insurance policy provider and to hospital administrators where PCP has privileges is effective. This in the long run will help other patients as well. I have seen a complete change in attitude and treatment when an attorney friend is present in the examination room vs. when they are not. Doctors fear attorneys. Just mentioning the fact that you discussed your condition with your attorney friend, you wll probably notice a difference in your treatment protocol and attitude by your PCP.

Didn't mean to be so long winded but I have seen and discuss this in so many situations among my medical and clinical psychologist's friends.
 
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Sidereal

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The comment are appaling but they are required to abide by the medical standards and procedures stated by their varous medical societies. They are required to abide by biomedical ethical standards. If not report them to the state health board and consider a malpractice suite for not properly following standard procedures.
How are they not following standard procedures, Ecoclimber? The current standard of care is CBT and exercise - that's the problem.
 

Sidereal

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The symptoms are real and easily treated, but it's not serious.

How stupid can one be.
I know, right? You're left wondering if some of these people are for real.

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.
It sounds dangerous, real and serious BECAUSE IT IS.
 

Sidereal

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@Sidereal thanks for gathering those.

I read through many of the comments earlier and thought they were actually worse overall than her other recent article's comments.
I thought so too. They seem more aggressive and indignant, as though this report is an affront to them and their deeply entrenched beliefs regarding psychosomatic causation.
 
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these doc's opinions is terrible. it's bad enough we have to suffer and struggle, but to be degraded by people who are in position to help... while there might be range of illness, there might be some taking advantage of situation, but there are many who are truly ill. it's their job to figure it out. why should we suffer due to science lagging. i am quite certain whatever is going on with me is NOT due to some psycho-babble, there are cause and effect, and the way it began, and taking an otherwise productive person to a dysfunctional one... practically overnight...
 

SOC

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Hey, we've got their names and the internet. Perhaps we should kindly mail these people some informative publications? Perhaps some direct quotations from the IOM report, some research papers, and other strictly scientific info. Nothing emotional, simply informational.

We're not likely to convince the majority of these closed-minded, unwilling-to-be-educated people, but we might discourage them from running off their mouths in public forums about subjects of which they know nothing.;)
 

adreno

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Hey, we've got their names and the internet. Perhaps we should kindly mail these people some informative publications?
I think exposure is more likely to work. Medscape is semi-private, but at least here they are exposed. If we could increase this exposure even more it would be great, and juxtapose their comments with excerpts from the IOM report.
 

SOC

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I thought so too. They seem more aggressive and indignant, as though this report is an affront to them and their deeply entrenched beliefs regarding psychosomatic causation.
It is exactly that, imo. Given the public comments they made today, I think it's a very safe bet that each one of them been emotionally/verbally abusing, mocking, and mistreating PWME for decades. They do NOT want to admit that they have been abusing seriously ill people -- they'll look like the cruel idiots they are. The only way out of their predicament is to deny that the patients are really ill and to claim the IOM report is a bunch of bunk. Not a very strong position, but where else do they have to stand other than on a public street corner with a "I've been a horrible human being and a total failure as a physician" sign?
 
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Not a very strong position, but where else do they have to stand other than on a public street corner with a "I've been a horrible human being and a total failure as a physician" sign?
It's most worrying isn't it! I mean I can deal with random internet trolls, as hey, they're too stupid to be medical doctors, and then, well, ...