Some doctors have deep contempt for patients

[Ember]

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.

In her “New Clinical Definitions for ME/CFS” presentation, Dr. Bateman acknowledges that a primary care clinician may not be able to accomplish a differential diagnosis when making an ME/CFS (SEID) diagnosis. That task may require the attention of a specialist: “We want primary care to be able to recognize; primary care can make these assessments; they can do orthostatic, you know, they can ask questions; they can understand what symptoms are present. They may need specialists to assure them that it's not another problem.”

Dr. Bateman also acknowledges, however, the lack of such specialists: “Down the road hopefully, it'll land or nestle somewhere, you know, in a specialty area once we have the science a little more clear. So far, nobody really wants to claim it because it's intimidating, right? It's this illness that we don't really understand very well.” The CCC advises concerning exclusions, “It is essential to exclude certain diseases, which would be tragic to miss:"

Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, is achieved by laboratory testing and imaging. If a potential confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.

But the exclusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, won't likely be achieved by laboratory testing and imaging as none is suggested in the Report Guide for Clinicians.

Are ME patients content to be afforded neither laboratory testing nor imaging?

 

[Valentijn]

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

Lest anyone think this is an exaggeration, a (female) psychologist did suggest that I should get pregnant to cure my ME.

 

[Strawberry]

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???

Probably the same thing that my doctor said to my face: "I don't know what is wrong with you! I wish I did!"

And probably behind my back says:

An attention seeking neurotic woman

 

[Undisclosed]

I could care less what doctors think.

Most of them don't know the first thing about health care. I've seen dozens of the best specialists in Los Angeles and not a single one of them has done jack shit to increase the quality of my health. I've long since stopped seeking help from any of them.

The problem is, they aren't really in the business of health care. They are nothing but state sanctioned drug dealers, peddling ineffective and dangerous drugs on behalf of the pharmaceutical industry. The business of health care in the United States is completely corrupt and worthless. It's all about money and nothing else...

Drug Companies & Doctors: A Story of Corruption (The New York Review of Books)

I don't think painting all doctors with the same brush is fair at all.

So all the doctors that specialize in ME or treat ME patients appropriately 'don't know the first thing about health care', 'are sanctioned drug dealers, peddling ineffective and dangerous drugs on the behalf of the pharmaceutical industry'?

We do have members with ME who are also doctors. I doubt they appreciate being characterized like this. We have doctors who don't have ME who are members and why would they want to stick around when they read stuff like this.

We should be appreciating those doctors who help us, try to provide appropriate treatments for us, sign off for the things we need and so on. We should save our criticism for doctors who deserve it.

 

[halcyon]

"Sorry if I offended anyone" is not an apology, it's a restatement of one's original offensive position in a pseudo-reconciliatory tone.

This is the "I'm sorry I got caught" apology, made famous by politicians and professional athletes.

 

[rosamary]

Lest anyone think this is an exaggeration, a (female) psychologist did suggest that I should get pregnant to cure my ME.

Did you ask what you should do with the baby once you were cured?

 

[ahimsa]

Lest anyone think this is an exaggeration, a (female) psychologist did suggest that I should get pregnant to cure my ME.

I have a similar story. A female MD (internal medicine) once suggested that my symptoms might be caused by regret over my decision to get a tubal ligation 6 months earlier.

Hmmm, 24 years have now passed I'm still happy with my decision not to have children.

It's ridiculous that an MD would try to psychoanalyze a patient after literally 5 to 10 minutes of discussion. She had never even met me before.

 

[Sushi]

A female MD (internal medicine) once suggested that my symptoms might be caused by regret over my decision to get a tubal ligation 6 months earlier.

We're getting a lot of useful scientific information here re: causation and cure. Just so you know, mine was caused by being sexually abused as a child--according to a doctor I had just met and who had spent 5 minutes with me. Didn't matter that I told him I hadn't been sexually abused as a child. He refused to even look at my extremely abnormal medical tests--including TTT results that showed BP of 88 over 82.

Sushi

 

[Sean]

Lest anyone think this is an exaggeration, a (female) psychologist did suggest that I should get pregnant to cure my ME.

So what is the solution for us males? Get a sex change? Gestate the foetus in a box?

 

[Sean]

PS: also quite revealing is the fact that just about every doctor in that forum refer to this illness as "neurasthenia"!

By what I am sure is just complete coincidence, innocent happenstance, and great minds thinking alike, that has long been Wessely's preferred term.

Just saying.

 

[SilverbladeTE]

By what I am sure is just complete coincidence, innocent happenstance, and great minds thinking alike, that has long been Wessely's preferred term.

Just saying.

A psychiatrist said my Mum was merely suffering form "neurasthenia"...no, spinal injury and operation AND aan X-Ray dye they KNEW caused serious damage when used for such x-rays but covered it up for 30 years, resulted in arachnoiditis, scarring of the spinal cord causing excruciating pain.

Shall I mention the GP who was also a psychiatrist and a "minister of the cloth" who sexually abused my mum and two other women that I know of?

My opinion of a fair percentage of the medical profession is lower than a snake's turd in the Dead Sea

 

[SOC]

I'm sure most med students are driven first by a desire to be good physicians and to do some good...

I wish I could believe this. I know, beyond any doubt, that there are people who go into medicine in order to help others. I have been fortunate to be the patient of some of those doctors here and there in my career as a patient. However, my experience living in a community with a major university with a medical school is that most med students are not driven by a desire to help, but by a desire to feel superior and powerful and to make a lot of money. These are not the people who should have power over the weak and vulnerable. They are the doctors who grow up to be Dr Forbes and his ilk. There are far too many of them.

That said, we should not let those egotistical and selfish people diminish the contributions of those doctors who do dedicate their lives to helping others. We have a number of those amazing doctors working as ME/CFS specialists.

We shouldn't tar all physicians with the same brush, but we can (and should, I suppose) acknowledge that too many physicians are not in medicine to help other people, but rather to help themselves.

 

[Antares in NYC]

That said, we should not let those egotistical and selfish people diminish the contributions of those doctors who do dedicate their lives to helping others. We have a number of those amazing doctors working as ME/CFS specialists.

We shouldn't tar all physicians with the same brush, but we can (and should, I suppose) acknowledge that too many physicians are not in medicine to help other people, but rather to help themselves.

Absolutely. Completely agree, and I'm extremely thankful to my ME/CFS specialist.

Most of us have had horrendous stories with really bad doctors, so it's easy to get a knee-jerk reaction when we read comments like those of Robert Forbes. But you are correct. There are still true professionals out there who genuinely care for their patients, no doubt. Unfortunately, I get the feeling they are a minority.

 

[Valentijn]

So what is the solution for us males? Get a sex change? Gestate the foetus in a box?

Maybe ME is the equivalent to a mid-life crisis. In which case the male can be cured by buying a flashy new car

 

[chipmunk1]

I wish I could believe this. I know, beyond any doubt, that there are people who go into medicine in order to help others. I have been fortunate to be the patient of some of those doctors here and there in my career as a patient. However, my experience living in a community with a major university with a medical school is that most med students are not driven by a desire to help, but by a desire to feel superior and powerful and to make a lot of money.

There are many of these types true but there are also not so few highly idealistic people who believe in helping others and that is why they become doctors. In my opinion this type of idealism while laudable and well intentioned often goes along with a certain amount of naivety about the world in general and the belief that everything what medicine does is wonderful.

Then there are the intellectually highly-conservative evidence-based medicine types very impressed by their own credentials who think medicine is just pure science which can not be wrong as long as the majority of publications support an idea.

( A doctor once told me how much he knew about science despite having psychoanalyzed me a few weeks before)

It's ridiculous that an MD would try to psychoanalyze a patient after literally 5 to 10 minutes of discussion. She had never even met me before

I don't know why they do this. It's very common.

I think that they are so impressed with their clinical skills that they think they can apply them to read the mind of the patient as well. Usually this goes horribly wrong.

 

[user9876]

Lest anyone think this is an exaggeration, a (female) psychologist did suggest that I should get pregnant to cure my ME.

I can see how this myth has developed over time. I believe some women with ME and some autoimmune diseases feel quite a bit better whilst pregnant. So a doctor or psychologist prone to a particular way of thinking may see this temporary improvement as 'a desire to have a child' then they probably don't see that its a temporary effect due to immune system changes. The problem is where people confuse observations with their prejudiced inferences from them and then build unjustified myths from their inference without looking for other possible (and more likely) reasons.

 

[ukxmrv]

I can see how this myth has developed over time. I believe some women with ME and some autoimmune diseases feel quite a bit better whilst pregnant. So a doctor or psychologist prone to a particular way of thinking may see this temporary improvement as 'a desire to have a child' then they probably don't see that its a temporary effect due to immune system changes. The problem is where people confuse observations with their prejudiced inferences from them and then build unjustified myths from their inference without looking for other possible (and more likely) reasons.

That was not the case with the doctor who suggested it to me. It was purely to "get my mind off" having a disease and having something to occupy my mind and stop me thinking about myself.

Although we know now that some women do feel better when pregnant (I think it is along the lines of a third feel worse,a third feel better and the rest feel the same) it was not the autoimmune aspects of pregnancy that this person was considering.

If presented with research in how woman with CFS feel in pregnancy they would have considered that the good effects felt by some where entirely due to the "getting their minds off the disease" aspects and not the immune system. It would have reinforced their belief system.

 

[user9876]

If presented with research in how woman with CFS feel in pregnancy they would have considered that the good effects felt by some where entirely due to the "getting their minds off the disease" aspects and not the immune system. It would have reinforced their belief system.

Thats the point I was trying to make. And where women don't get better or get worse they probably put that down to the stress of pregnancy.

 

[Valentijn]

I can see how this myth has developed over time. I believe some women with ME and some autoimmune diseases feel quite a bit better whilst pregnant. So a doctor or psychologist prone to a particular way of thinking may see this temporary improvement as 'a desire to have a child' then they probably don't see that its a temporary effect due to immune system changes. The problem is where people confuse observations with their prejudiced inferences from them and then build unjustified myths from their inference without looking for other possible (and more likely) reasons.

The psychologist believed that I was not sick (not a patient) and just needed to realize that and "get out more". I think they see having a child as something which perks people up, or forces them to stop being selfish lazy slobs.

 

[worldbackwards]

Maybe ME is the equivalent to a mid-life crisis. In which case the male can be cured by buying a flashy new car

Could we get that on the NHS?