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Some doctors have deep contempt for patients

jimells

Senior Member
Messages
2,009
Location
northern Maine
To settle on the, "these people are just lazy" explanation, my god what century is this guy living in.

The same century as most Americans. This attitude of hate and fear is pervasive throughout public discourse. Fox News in the US leads the way, but it's a very large mob. Every time the Governor of Maine opens his yap, out spews vindictive bile against poor people, even though he grew up poor and abused himself. He even brags about having stolen lunch money (or something like that) from the other kids!

Since he has now won re-election, it's pretty clear that a large number of the Fine Folks of the Great State of Maine agree with his policies of making life difficult for everyone forced to accept public benefits. I have been to public meetings discussing Evil Welfare, and they are disturbing.

I don't think they were quite ready to lynch anybody, but the hate was palpable. Everyone on The Dole is a lazy drug addict driving a new Cadillac. Of course, none of the indignant citizens want their own disabled relatives kicked to the curb, just everyone else' relatives.

Hate and fear are standard tools of social control, and work best when modeled by Our Dear Leaders. Since doctors have long been near the top of the social hierarchy, they have an important role to play in disseminating the party line. Dr Forbes has certainly taken his role to heart.

If one doubts the ugliness of modern America, think on this: a majority of Americans support torture.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Science just needs to buck up and find tests or markers or something to filter out the few lazy people, as they are contaminating the doctors minds against the ones with real issues and AREN'T lazy
It's tempting to buy into the narrative that there may be patients who are purely time wasters, but as soon as we buy into their narrative it makes us as bad as these so called medical professionals. If a patient needs help then they need help. Simple as that. SEID is now a clearly defined disease, and any doctor should be able to make a positive diagnosis. Other types of patients equally need a diagnosis, care, compassion and treatment. No one goes to see a doctor because they are lazy.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
People today are much less inclined to believe in dogma and authority, and much more inclined to seek out facts for themselves.
Like it or not the medical profession has to learn to cope in the internet age. Too often we find out we are not being given the right information, but its important not to believe things most places on the web either.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
There are some lovely doctors out there who treat us very nicely. Ones like this, though, should (fill in your own words).

You're right, Kina. And I was thinking earlier that most doctors would surely be embarrassed by the remarks of Dr Forbes. At least, I hope they would.

Oh and of course he's a professor too. I can just imagine what nice things he teaches his students about ME/CFS and FMS.

If anyone wants some light relief after that blood pressure-raising stuff, I um .. 'found' a transcript of a lecture from an unnamed med school somewhere in the south. I've posted it on my blog page. I can't say for sure which doctor might be speaking ...
 

Butydoc

Senior Member
Messages
790
Hi Bob,

I completely agree with you concerning a more clearly defined definition helping doctors make an appropriate diagnosis. I had lunch today with a friend who is a retired cardiologist/ primary care physician. We discussed this thread. He felt bad that he has treated a number of patients with antidepressants that probably had ME/SEID. In his defense, because there wasn't a clear definition of the disease or how to make a diagnosis that was widely distributed to physicians, he did what he could to help his patients even though it was misguided.

From this thread, it is obvious that many patients have been poorly treated or dismissed by physician who were suppose to be helping them. I really believe that the IOM report will go a long way in legitimizing this disease to many physicians. Unfortunately in every physician's practice, there are patients who are there simply for secondary gain or for drugs used for recreational purposes. This is really no excuse to mistreat or deny someones complaints because of the fear that they are gaming the system. A physician should always error on the side that favors the patient.

Best,
Gary
 

Nielk

Senior Member
Messages
6,970
It's tempting to buy into the narrative that there may be patients who are purely time wasters, but as soon as we buy into their narrative it makes us as bad as these so called medical professionals. If a patient needs help then they need help. Simple as that. SEID is now a clearly defined disease, and any doctor should be able to make a positive diagnosis. Other types of patients equally need a diagnosis, care, compassion and treatment. No one goes to see a doctor because they are lazy.

I don't think that the IOM criteria will make a difference in these doctors' minds. They will only be convinced that it is a true disease, if and when we have a testable biomarker. They will not accept a criteria purely based on subjective symptoms. In their mind, if they don't see it and can't test for it, it doesn't exist. These remarks are made by doctors who have just read an article about the new IOM criteria.
 

Butydoc

Senior Member
Messages
790
I don't think that the IOM criteria will make a difference in these doctors' minds. They will only be convinced that it is a true disease, if and when we have a testable biomarker. They will not accept a criteria purely based on subjective symptoms. In their mind, if they don't see it and can't test for it, it doesn't exist. These remarks are made by doctors who have just read an article about the new IOM criteria.
Hi Nielk,

You are probably correct that the doctor who this thread is about won't change his mind, but many other doctors will. Most doctors that I know try their best to help their patients and given the appropriate information, will follow established guidelines. My friend claims he wished a report like the IOM existed when he was practicing medicine so that he could have made a better decision in helping his patients. On a personal note, I would have benefited from the IOM report concerning my brother if it had existed when he developed ME/SEID. Unfortunately, I thought he had a psychiatric condition. That was 35 years ago. My daughter just just came down with symptoms of ME/SEID. I gave her the slideshow version of the IOM report. She felt it was very useful in helping her understand the disease.

Best,
Gary
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
All of them seem to want disability, disabled parking stickers, amphetamines, narcotics or Xanax.
The sad thing about this statement (aside from this doc's horrible attitude) is that many patients actually need disability, disability parking stickers, and benzos, narcotics and/or amphetamines in order to function enough to even minimally take care of themselves. Until there are real treatments that get to causes, docs like this need to be educated that many patients do need such symptomatic treatments or they will wither up and die in their beds.

Evidently docs have been "taught" that patients asking for such things are of drug--seeking and "looking for a convenient out" on the responsibility for their lives. This perception needs to be changed when dealing with ME/CFS/SEID patients.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
On a personal note, I would have benefited from the IOM report concerning my brother if it had existed when he developed ME/SEID. Unfortunately, I thought he had a psychiatric condition. That was 35 years ago. My daughter just just came down with symptoms of ME/SEID. I gave her the slideshow version of the IOM report. She felt it was very useful in helping her understand the disease.
So sorry to hear of your family's history and that your daughter is coming down with symptoms. More evidence of a familial connection. How lucky that she has a Dad-doc who can help her.

My mother also had this disease. Guess what treatment she was given? Electro-shock treatment. I hope we are at least over that stage of ignorance.

I've passed through the practices of lots of bewildered but well-meaning doctors in my long history with this illness and yes, they prescribed very inappropriate treatments...which I just ignored as I knew they were wrong. I just stopped going to doctors and muddled along on my own.

In the last 15 years though, I have been to quite a number of doctors who knew some of the basics and tried very hard to help. But sadly it wasn't until 2011 that I found my way to an ME specialist and started some real treatment.
 

Nielk

Senior Member
Messages
6,970
Hi Nielk,

You are probably correct that the doctor who this thread is about won't change his mind, but many other doctors will. Most doctors that I know try their best to help their patients and given the appropriate information, will follow established guidelines. My friend claims he wished a report like the IOM existed when he was practicing medicine so that he could have made a better decision in helping his patients. On a personal note, I would have benefited from the IOM report concerning my brother if it had existed when he developed ME/SEID. Unfortunately, I thought he had a psychiatric condition. That was 35 years ago. My daughter just just came down with symptoms of ME/SEID. I gave her the slideshow version of the IOM report. She felt it was very useful in helping her understand the disease.

Best,
Gary

I appreciate your input, Gary. I wander, were you aware of the Canadian Concensus Criteria and the International Consensus Criteria? Have you had a chance to read either the CCC Primer written by the IAME/CFS or the ME-ICC Primer?
 

Butydoc

Senior Member
Messages
790
So sorry to hear of your family's history and that your daughter is coming down with symptoms. More evidence of a familial connection. How lucky that she has a Dad-doc who can help her.

My mother also had this disease. Guess what treatment she was given? Electro-shock treatment. I hope we are at least over that stage of ignorance.

I've passed through the practices of lots of bewildered but well-meaning doctors in my long history with this illness and yes, they prescribed very inappropriate treatments...which I just ignored as I knew they were wrong. I just stopped going to doctors and muddled along on my own.

In the last 15 years though, I have been to quite a number of doctors who knew some of the basics and tried very hard to help. But sadly it wasn't until 2011 that I found my way to an ME specialist and started some real treatment.
Hi Sushi,

The history of ME/SEID is unfortunate at the least and almost criminal at the worse. The real question is how to inform primary care physicians of this disease when there is so much disagreement in our own community. An attempt by the IOM to help appears to have been met with considerable distain and contempt. Where do you go from here?

Best,
Gary
 

Nielk

Senior Member
Messages
6,970
Hi Sushi,

The history of ME/SEID is unfortunate at the least and almost criminal at the worse. The real question is how to inform primary care physicians of this disease when there is so much disagreement in our own community. An attempt by the IOM to help appears to have been met with considerable distain and contempt. Where do you go from here?

Best,
Gary

The IOM process was forced on us by HHS. CFSAC, the expert clinicians, researchers, advocates and patients urged HHS to adopt the Canadian Consensus Criteria (CC). Had HHS listened to us and convened a workshop of ME experts to refine the CCC so that it could serve as the official diagnostic and research criteria for the disease, we would have all unified around that.

Government in the US should not control the creation of criteria and that is what they have done with the IOM process.
 

Butydoc

Senior Member
Messages
790
The IOM process was forced on us by HHS. CFSAC, the expert clinicians, researchers, advocates and patients urged HHS to adopt the Canadian Consensus Criteria (CC). Had HHS listened to us and convened a workshop of ME experts to refine the CCC so that it could serve as the official diagnostic and research criteria for the disease, we would have all unified around that.

Government in the US should not control the creation of criteria and that is what they have done with the IOM process.
Hi Nielk,

I'm not very political and probably not as well informed as you are concerning the government's response. It still seems to me that the IOM report will help our cause. Only time will tell.

Best,
Gary
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't think that the IOM criteria will make a difference in these doctors' minds. They will only be convinced that it is a true disease, if and when we have a testable biomarker. They will not accept a criteria purely based on subjective symptoms. In their mind, if they don't see it and can't test for it, it doesn't exist. These remarks are made by doctors who have just read an article about the new IOM criteria.
Yes, I agree. What they should be doing, and what these particular doctors will do in practice are two different things, unfortunately. Hopefully the more reasonable doctors will be educated somewhat if they take the time to read or use the IOM report.
 
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Butydoc

Senior Member
Messages
790
Hi Nielk,

I can't speak for other doctors as being too hard to follow. For me, the IOM report is simpler. I believe in the KISS principle, "Keep it simple stupid". The less complicated and easier to use something is, the more likely it will be used.
I feel the IOM report is flawed but a step in the right direction.

Best,
Gary
 
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catly

Senior Member
Messages
284
Location
outside of NYC
Just one note on training in medical school, this has been a big area of interest of my MECFS specialist--the problem isn't related to our specialists and others not WANTING to teach medical students and residents the problem is those who run physician training programs REFUSING to teach the topic.

My MECFS specialist, one of several MECFS specialists/ME MD patients who all trained at the same school, has been turned down several times by the program she trained with to lecture students on MECFS.

Maybe the IOM report and subsequent roll out will help change that but I kind of doubt anything will really change until we have confirmed etiology with biomarkers and approved treatments.