Some doctors have deep contempt for patients

[sarah darwins]

So he put up a sort of apology. Didn't really take back what he said or thinks. Just felt bad about getting caught ranting out in the open ?

ETA It's a start.
Who knows. Maybe he's never talked to anyone.
Maybe he would be open to learning.
I hate writing anyone off completely .

I try not to write people off, either, but this guy's making it hard.

The remark about forgetting "that this is no longer one to one communication as I have been used to" is entirely undermined by his original boast that "Fortunately I am semi-retired and fear no retribution for my free speech."

I detect the influence of his current employer, and quite possibly his lawyer in this 'apology'.

Let's not give up, though. I'm sure most med students are driven first by a desire to be good physicians and to do some good, so there is presumably a good doctor in there somewhere, even if he got lost somewhere along the road. Maybe this is the start of his Damascus moment.

 

[Bob]

The ICC provides significant guidance for doctors considering other possible diagnoses:
[...]
But the IOM criteria provide only minimal guidance:

Dr Bateman has discussed this issue, and explained the reasoning for omitting guidance for differential diagnoses from the IOM report...

As I discussed above, it is a misconception that the IOM criteria do not require “exclusions” or a differential diagnosis. Physicians are expected to evaluate for other disorders that might completely explain the symptoms, and not make a diagnosis of ME/CFS or SEID if such an illness is identified. The committee decided not to attempt a list of every possible illness that could present with similar symptoms.
[...]
If physicians are responsible for a differential diagnosis to determine the presence of other conditions, they can't simply order a panel of labs and say they've eliminated other diagnoses. As a clinician who has evaluated and followed hundreds of patients for decades, I can say that the process of differential diagnosis never ends.

http://forums.phoenixrising.me/inde...om-questions-from-the-community-part-1.36628/

We don't have to agree with her reasoning, of course, but I think she makes a good case for not including differential diagnoses... It's the physician's job to diagnose their patients, and they shouldn't be relying on a set of criteria for ME or SEID to diagnose an entirely different illness. It also adds to the idea that ME/CFS is an illness of exclusion, or a garbage bin diagnosis. Having said that, doctors need all the help they can get. What we really need is a network of clinical centres of excellence where differential diagnoses can be made accurately by a team of experts from various fields.

 

[Ember]

Dr Bateman has discussed this issue, and explained the reasoning for omitting guidance for differential diagnoses from the IOM report... Dr. Bateman said, "If physicians are responsible for a differential diagnosis to determine the presence of other conditions, they can't simply order a panel of labs and say they've eliminated other diagnoses."

It's the physician's job to diagnose their patients.... Having said that, doctors need all the help they can get.

Dr. Bateman has stated:

It is my own medical opinion that, after routine medical workup has been done (physical exam, ECG, labs, MRIs, mental health screen, etc.), there are very few illnesses, with “normal” tests, that present with such reduced functional capacity, PEM, pervasively disordered sleep, cognitive impairment and (sic) orthostatic intolerance.

The Report Guide for Clinicians, however, doesn't suggest a medical work-up that includes an ECG, MRIs, a medical health screen or any panel of labs.

 

[SilverbladeTE]

Not all docs are bad, BUT from my experience the majority *ARE*
be it arrogant to grossly incompetent, sigh
1/3rd or so are true physicians, God bless 'em Rest be damned.

Very very difficult profession to be in, I considered it but no way could I cope with it as I take too much to heart
and that's the rub
physicians deal with the pain, suffering and loss every damn day that a normal person has only rarely experience of and as we know, damn it sucks, because if you have any decency, seeing another person suffer, especially if helpless or a child is absolutely gut wrenching
It takes vastly more courage to SAVE lives than take them. Rather fed up with society's trumpeting about the "glories" of war all the damn time and not the far greater honours of the EMTs, nurses, anyone who saves a life etc...sigh.

So, good physicians can get worn down with the strain, and callous ones have less issues with the stress
"compassion fatigue" and then you have social issues, as I've said here in UK, because doctors mostly came from an upper section of the Middle Class there was a a bad outlook in the profession in parts
folk form that background can be either the most educated, well meaning and brave....or complete utter wicked assbags.
One doc I knew from such background was a decent Human being, but hated being a doctor, he had been forced by his family into the profession and bitterly resented it, he wanted to be a ship builder (wooden yachts)
So though he would care if you needed help, he was incompetent.

 

[alex3619]

Have your doctors never checked these signs and symptoms? Do they perform their physical examinations by rote or commit their findings to heart?

My doctors fall into three categories. Those who know the research very well, and can discuss just about every major finding. Those who know very little, and don't want to know, and no they wont read anything. Those who say "ME, whats that?".

 

[Denise]

I noticed this comment (posted last night on the AAFP site)
[EDIT @beaker spotted the apology and posted it earlier in this thread...]
"Robert Forbes
4/7/2015 11:05 PM
I am truly sorry if I offended anyone.

I forget that this is no longer one to one communication as I have been used to.

Just felt like venting to colleagues.

Respectfully,

Robert C. Forbes, MD"
http://www.aafp.org/news/health-of-the-public/20150302newchronicfatigue.html

To me, the apology seems insufficient. Saying that he forgot he wasn't talking one-on-one with someone indicates that he still holds incorrect beliefs about patients and likely would have shared his incorrect/demeaning views in personal communications.

We need a comprehensive education program to address these things!

 

[alex3619]

When doctors act like that, online or in real life, how do they expect patients to view them? When these attitudes are entrenched and deeply out of touch with the research, how do they expect patient communities to view them?

Why do doctors think alternative medicine is so popular? Why do so many patients simply never go back to those doctors? Do they think them cured? Doctor shopping? The sad thing is that many of us just give up on doctors. Why pay money for a doctor to treat us badly and achieve nothing?

This is more than about medical education. That is part of the solution, but its not the entire solution. More and more it can be seen that the medical culture itself needs to change. This is not isolated to medicine though, this issue occurs in other professions and parts of society. Its also not about individuals, because if you look at medicine, and even psychiatry, there are some doctors working hard to try to operate in this system. This is about the standing and mindset of the profession itself.

 

[Esther12]

I think it's important for doctors to express their views honestly in front of patients. That's not the problem. It's good for patients to be able to see how many doctors are affected by unreasonable prejudices, it's bad that so many doctors are affected by unreasonable prejudices.

 

[SilverbladeTE]

I've found that specialists and emergency unit (A&E as it is here) doctors seem to be the best
GPs (would that be "primary care"? in the USA??) and especially "consultants"...omg...

 

[Hip]

In what way are the IOM criteria "more effective at getting ME/CFS patients identified and properly diagnosed?"

I wrote "might be more effective at getting ME/CFS patients identified and properly diagnosed". I wrote might because, I don't think anyone can claim to know for sure here.

My view is that the IOM report is likely going to be beneficial, but I don't state this with any vehemence, simply because we cannot know this with any degree of certainty.



The reason I think many ME/CFS patients were very pleasantly surprised by and happy with the IOM report is because of the background context in which this report was created.

Given that many in the medical profession and general public alike regard ME/CFS as "all in the mind," or view ME/CFS patients as merely lazy, it was surprising and refreshing to see such an enlightened view on ME/CFS come out of the IOM report. This report clearly came down on the side of ME/CFS being a biological disease, rather than supporting the mumbo-jumbo psychosomatic ideas on ME/CFS that have dominated the arena for many decades. So I think many patients saw the IOM report as a great watershed in leaving the psychosomatic mumbo-gumbo behind.

The fact that the IOM so strongly supported the biological view is even more surprising given the background of bad politics involved with ME/CFS, where insurance companies lobby governments and health services to get them to adopt the biopsychosocial model of diseases like ME/CFS, in order to avoid these diseases being seen as purely biologically based.

I certainly expected the worst, and feared that the IOM report would, due to political interference, just continue to cast ME/CFS as an "all in the mind" psychogenic condition that must be dealt with by the biopsychosocial model. Yet the IOM committee did not succumb to these bad politics. How they avoided these bad political pressures, I don't know, but I for one am very grateful that they did.

It did occur to me that these bad politics might the reason they chose not to have any ME/CFS experts on the IOM committee, because many of the biopsychosocial / somatoform experts have insurance company links, and so this might have brought these corrupt politics into the heart of the IOM deliberations.


Being happy with the IOM report does not mean that we should not continue to strive for better clinical treatment for ME/CFS patients and more ME/CFS research. This is certainly needed. One thing that @Nielk said that I do agree with is that the ME/CFS diagnosis should be confirmed by specialists, just like a diagnosis of multiple sclerosis is confirmed by a neurologist.

If a primary care physician suspects multiple sclerosis on the basis of a patient's symptoms, he will refer the patient to a neurologist who will confirm or deny the suspicion. The same should be true for ME/CFS: if your primary care doctor suspects ME/CFS (on the basis of the SEID criteria say), he should then ideally refer you to an ME/CFS specialist (who might be a neurologist) who will confirm or deny this using a series of more detailed criteria (such as the CCC / ICC) and preferably also some tests.


However, the IOM report is a definite step in the right direction, so while more needs to be done to improve the lot of ME/CFS patients, I don't think this is going to be achieved by attacking IOM report; rather, I think it will be best achieved by accepting the IOM report as a welcome step forward, and then continuing to fight the battle from there.

 

[Valentijn]

I think it's important for doctors to express their views honestly in front of patients. That's not the problem. It's good for patients to be able to see how many doctors are affected by unreasonable prejudices, it's bad that so many doctors are affected by unreasonable prejudices.

Me too. But I also think they should face consequences for their prejudicial actions, and for spreading those prejudicial attitudes to their students and the public. Honesty is one thing, but advocating for the mistreatment or negligent treatment of a patient group is not tolerable.

 

[jimells]

I have never met a doctor who uses a worksheet.

I remember a few years ago there was an effort to bring airline-pilot-style checklists into the hospitals and clinics. Apparently there is very good evidence for using cockpit checklists, and the airline people were just appalled that doctors and team were expected to recall everything with 100% accuracy all the time. It's just impossible. I think Captain Sully, who landed the airplane in the Hudson River a few years ago, was involved with this.

When I had hand surgery a few years ago, the surgical team was extremely methodical about verifying who I was and what we were all doing there. I think they were using a checklist.

 

[Bob]

My view is that the IOM report is likely going to be beneficial, but I don't state this with any vehemence, simply because we cannot know this with any degree of certainty.



The reason I think many ME/CFS patients were very pleasantly surprised by and happy with the IOM report is because of the background context in which this report was created.

Given that many in the medical profession and general public alike regard ME/CFS as "all in the mind," or view ME/CFS patients as merely lazy, it was surprising and refreshing to see such an enlightened view on ME/CFS come out of the IOM report. This report clearly came down on the side of ME/CFS being a biological disease, rather than supporting the mumbo-jumbo psychosomatic ideas on ME/CFS that have dominated the arena for many decades. So I think many patients saw the IOM report as a great watershed in leaving the psychosomatic mumbo-gumbo behind.

The fact that the IOM so strongly supported the biological view is even more surprising given the background of bad politics involved with ME/CFS, where insurance companies lobby governments and health services to get them to adopt the biopsychosocial model of diseases like ME/CFS, in order to avoid these diseases being seen as purely biologically based.

I certainly expected the worst, and feared that the IOM report would, due to political interference, just continue to cast ME/CFS as an "all in the mind" psychogenic condition that must be dealt with by the biopsychosocial model. Yet the IOM report did not succumb to these bad politics. How they avoided these bad political pressures, I don't know, but I for one am very grateful that they did.

It did occur to me that these bad politics might the reason they chose not to have any ME/CFS experts on the IOM committee, because many of the biopsychosocial / somatoform experts have insurance company links, and so this might have brought these corrupt politics into the heart of the IOM committee.


Being happy with the IOM report does not mean that we should not continue to strive for better clinical treatment for ME/CFS patients and more ME/CFS research. This is certainly needed. One thing that @Nielk said that I do agree with is that the ME/CFS diagnosis should be confirmed by specialists, just like a diagnosis of multiple sclerosis is confirmed by a neurologist.

If a primary care physician suspects multiple sclerosis on the basis of a patient's symptoms, he will refer the patient to a neurologist who will confirm or deny this. The same should be true for ME/CFS: if your primary care doctor suspects ME/CFS (on the basis of the SEID criteria say), he should then ideally refer you to an ME/CFS specialist (who might be neurologist) who will confirm or deny this using a series of more detailed criteria (such as the CCC / ICC) and preferably also some tests.


However, the IOM report is a definite step in the right direction, so while more needs to be done to improve the lot of ME/CFS patients, I don't think this is going to be achieved by attacking IOM report; rather, I think it will be best achieved by accepting the IOM report as a welcome step forward, and then continuing to fight to battle from there.

I appreciate this post, Hip. I think you explain the situation very well, as I see it at least. The situation isn't perfect, and there are unanswered questions, but I think this is a huge and significant step forwards for us.

If we contrast the IOM report to what we were expecting, and what we're used to (i.e. the CDC's historic attitude and the Fukuda criteria), this does seem like a watershed moment in our history. For the first time, the authorities must now accept that this illness is a distinct, definable, physical disease, characterised by a specific adverse reaction to exertion. It's thirty years late, but progress nonetheless.

And, as you say, accepting this report doesn't mean that we won't be striving for better. We now need serious funding and we need a network of clinical centres of excellence.

And I'd be happy to strive for other clinical and research criteria, to be used alongside the IOM clinical criteria e.g. that better recognise severely affected ME patients.

 

[Butydoc]

I remember a few years ago there was an effort to bring airline-pilot-style checklists into the hospitals and clinics. Apparently there is very good evidence for using cockpit checklists, and the airline people were just appalled that doctors and team were expected to recall everything with 100% accuracy all the time. It's just impossible. I think Captain Sully, who landed the airplane in the Hudson River a few years ago, was involved with this.

When I had hand surgery a few years ago, the surgical team was extremely methodical about verifying who I was and what we were all doing there. I think they were using a checklist.

Hi Jimells,

Check list were instituted in the preop area after too many wrong sided surgeries occurred. Mainly in the orthopedic arena where the wrong knee was operated on.

Best,
Gary

 

[alex3619]

Hi Jimells,

Check list were instituted in the preop area after too many wrong sided surgeries occurred. Mainly in the orthopedic arena where the wrong knee was operated on.

Best,
Gary

I see this in surgical and acute care in hospitals. However even in outpatients I do not see it. In general practice I do not see it. With specialists I do not see it. That might reflect local medicine more than general medicine around the globe, who knows? There is a strong move to systematize medicine, but its run by bureaucrats for the most part, not medical scientists. So in some cases they have instituted checklists that do the very wrong thing, like using the wrong antiseptic pre and post surgery. (This was a case where alcohol was used instead of iodine, on the say so of pharma reps.)

 

[leokitten]

I wonder what this idiot doctor would have to say when he sees an ME/CFS patient with strikingly clear clinical symptoms and labs who doesn't stop working full-time, isn't lazy at all, refuses to ever go on disability, doesn't want any benzos/narcotics/stimulants and isn't making any excuses?? What would he say is wrong with this patient???

 

[Hip]

If we contrast the IOM report to what we were expecting, and what we're used to (i.e. the CDC's historic attitude and the Fukuda criteria), this does seem like a watershed moment in our history. For the first time, the authorities must now accept that this illness is a distinct, definable, physical disease, characterised by a specific adverse reaction to exertion. It's thirty years late, but progress nonetheless.

I just hope that these advances that have been made, thanks to the IOM, which are finally putting to rest the "all in the mind" psychogenic view and its associated politics, become be solidly consolidated and further built upon. It is a great step forward to officially cast out the "all in the mind" view, but I am wary that in some unforeseen future turn of events, we might lose these gains we have made, if we are not careful.

 

[SDSue]

Personally, I don't think this is a difficult diagnosis to make even without a checklist. Any of us could do it (and have done it). It's a matter of having seen a case firsthand in a patient that you actually believe. Active, motivated, educated, gainfully-employed patients don't simply go from highly functioning to disabled for no good reason. The clues are all there if you look and listen.

In the 1950's, an epidemiologist named Dr. Alice Stewart began a painstaking investigation of childhood cancers, which occurred most frequently in affluent families. With great statistical significance, she found a correlation between x-rays done on pregnant women and childhood cancers. Unfortunately, it took medicine 25 years to take her findings seriously, at which time the practice of x-raying pregnant women was halted worldwide.

We, too, are up against conventional medical "wisdom" which clings like grim death to the psychosomatic model - one can only imagine how mothers were blamed for their children's cancers in the 1950's. The psychosomatic model offers a form of protective denial to both society and physicians. "If only crazy people get that devastating illness, then I will never be afflicted because I am not crazy." By placing the blame on patients, physicians are allowed to deny the responsibility to diagnose and treat while society at large is allowed to deny vulnerability. It's immature thinking at best.

Perhaps 25 years is not a coincidence - it represents a generation.

 

[Antares in NYC]

I noticed this comment (posted last night on the AAFP site)
[EDIT @beaker spotted the apology and posted it earlier in this thread...]
"Robert Forbes
4/7/2015 11:05 PM
I am truly sorry if I offended anyone.
I forget that this is no longer one to one communication as I have been used to.
Just felt like venting to colleagues.
Respectfully,
Robert C. Forbes, MD"
http://www.aafp.org/news/health-of-the-public/20150302newchronicfatigue.html

To me, the apology seems insufficient. Saying that he forgot he wasn't talking one-on-one with someone indicates that he still holds incorrect beliefs about patients and likely would have shared his incorrect/demeaning views in personal communications.

We need a comprehensive education program to address these things!

Agreed in all fronts.

If there's anything positive to glean from these obscene comments from doctors like Robert Forbes is that the thread at AAFP gave us a clear glimpse into how some doctors communicate with each other. What's more, it displayed the utter contempt and disrespect that some doctors have for the patients under their care. I think it's funny that Dr. Forbes' own lack of Internet literacy/savvy exposed his vicious rants for the world to see. I hope many of his patients saw that.

We are all granted our freedom of speech and the right to express our thoughts freely. That said, what Dr. Forbes and the rest of his colleagues demonstrated in that forum is what they really think of their patients: they are all lazy, junkies, malingerers, or our to get a disability check. It also reflects a terrible view of the world, and a sad and over-inflated view of the meaning of their own profession. Hippocratic oath be damned!

PS: also quite revealing is the fact that just about every doctor in that forum refer to this illness as "neurasthenia"! Seriously! What century are these people in? Do they treat their patients with leeches and bloodletting? I have dealt with quite a number of terrible, clueless doctors during my ordeal, but let me tell you: I'm glad I'm not a patient of Robert "best doctor in America" Forbes. Things could always be worse, right?

 

[ukxmrv]

I wonder what this idiot doctor would have to say when he sees an ME/CFS patient with strikingly clear clinical symptoms and labs who doesn't stop working full-time, isn't lazy at all, refuses to ever go on disability, doesn't want any benzos/narcotics/stimulants and isn't making any excuses?? What would he say is wrong with this patient???

An attention seeking neurotic woman

A woman who needs to have a baby and stop thinking about having a disease all the time

Remember what we think of as "good labs" are often private tests from ME and CFS doctors and therefore are worthless to these doctors.

We just doctor shopped until we found one that diagnosed a fake disease and talked us into paying money for worthless tests.