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New York Times Op-Ed: A Disease Doctors Refuse to See/CFS needs effective treatments, J Rehmeyer

Aurator

Senior Member
Messages
625
Comments on the NYT article are now closed at a total of 581.
Dr Kaufman's early and valuable contribution was easy to overlook. In gratitude I repeat it here:

David Kaufman, MD California
"I will assume that the first two comments are by physicians. Let's begin with a suggestion: find a doc who treats these patients and spend one week in their office. You will be astounded at the degree of illness and misery (and I would hope a little shamed). You will hear patients describe how they cannot wash their hair, they cannot stand for more than 30 seconds, that writing an email leaves them exhausted, and on and on. I am talking about people that were PhDs, software engineers, venture capitalists, major real estate developers, entrepreneurs, you name it. These are not lazy people looking for a disability check. Several times a week I hear the same comment: I wish I had AIDS or Leukemia.


Regarding biomarkers of disease, it is correct that there is no single test comparable to an HIV pcr or an A1C for diabetes. But virtually every patient has profoundly low natural killer cell function, about 80 % have undetectable vasopressin levels, about 95% have mutations of the MTHFR gene (compared to 30% in the general population), and nearly every patient has documented abnormalities of the HPA axis. The real problem is our abysmal lack of understanding: why do these patients get sick, what is the cause, what starts the spiral? Perhaps research dollars might solve this problem.
But I would submit that not knowing the CAUSE of disease does not mean there is NO disease. We treat hypertension and don't know the cause. We treat MS and don't know the cause."
 

Gingergrrl

Senior Member
Messages
16,171
@Aurator Thank you so much for posting that comment from Dr. Kaufman which made me cry. He is my doctor and the compassion and dedication that he put into that response is the exact same that he gives every day to his patients. I am very grateful to be under his care and to have an advocate who is fighting for us and not afraid to challenge other doctors to do the same.

ETA: The other thing that I find extraordinary about Dr. Kaufman and our other ME/CFS specialists is that they go into this field voluntarily knowing that they will face difficult and challenging cases, without the support of the government or of other doctors, yet they choose to do it any way. I am so struck by that right now, I don't ever know how to thank them for all they have done.
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
Great article, but I found the vast majority of the comments discouraging, nasty and vicious. Most of the commenters there are particularly vitriolic, specially those claiming to be doctors.

Reading such vast amount of hateful comments towards us really ruined my day. Belief in humanity: shattered.

While I don't wish this illness on anyone, I wonder how many of those would feel living in our shoes for just one month.
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
This is one of the most offensive comments I read today, because it allegedly comes from a doctor, and he claims a number of legitimate illness and autoimmune conditions are "fake":
george, Kalispell, MT 11 hours ago
I was a physician for 40 years. Every 5 or 10 years a new "disease" would appear to provide cover for all the neurotics and hypochondriacs. Remember"hypoglycemia"? "Epstein-Barr?" "Yeast"? And now "Chronic Fatigue Syndrome." Oh yes, and seemingly every 3rd person in U.S. is now "gluten-sensitive" or "lactose-intolerant."
I wonder how many starving Iraqi children would refuse a hunk of bread and a glass of milk while claiming the latter two complaints.
The fact is, when a so-called "malady" is given disease status there is money involved--and insurance coverage.
He sounds like a really nice person! Hope he got his medical license suspended. Can you imagine the amount of DAMAGE this guy has done to countless patients in Montana?

What I found even more offensive is that the NY Times chose this comment and highlighted it in the "NYT Picks" section. Awesome.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Is there some way of turning these messages of hate toward us to some advantage.
Is there a place to report Dr's to a medical body?
At least to get them to back off and reprimanded. It would put the administrative body in an awkward position at least if they failed to consider the complaint.
 

SOC

Senior Member
Messages
7,849
Is there some way of turning these messages of hate toward us to some advantage.
Is there a place to report Dr's to a medical body?
At least to get them to back off and reprimanded. It would put the administrative body in an awkward position at least if they failed to consider the complaint.
This dreadful excuse for a healthcare practitioner said:
I was a physician for 40 years.
Notice the past tense and the length of practice? The guy is undoubtedly retired and free to run off his mouth without consequence.... well, other than letting the public see what kind of person he really is.

I suppose we have to take consolation from the fact that if he's retired, he's no longer abusing patients.
 

SOC

Senior Member
Messages
7,849
@Snowdrop It's a great question and I wish I knew the answer. I do not understand the level of hatred that some of the doctors have toward a group of people who are already suffering so much. What fuels them to be so hateful?
Defensiveness. They abused patients over the years because they thought the patients were faking. The only way they can now not see themselves as bad doctors and worse human beings is to try to convince the rest of the world that they were right and patients deserve the scorn heaped upon them.

Lack of character. They can't admit they were wrong and apologize, so they blame their victims.

Psychological issues. They can't deal with the complex emotions caused by changing situations. Some people don't have much more emotional range than anger. Frustration translates to anger. Fear translates to anger. Shame translates to anger. Embarrassment translates to anger. Many abusers have this emotional/psychological problem.

I try to see them only as pathetic human beings, but it's hard when they clearly had such power to harm other people... and used it.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
I suppose we have to take consolation from the fact that if he's retired, he's no longer abusing patients.
One has to wonder how many diabetic folks he dismissed, how many EBV/mono patients he sent packing, or how many celiac people he laughed off. This sob is the type of doctor that stopped studying and learning the moment he got his diploma. Since he got his license, notice he claims there has been a "new disease invented every five years".

All doctors should be required to take update courses and seminars every few years or risk losing their licenses. There would be less ignorant and lazy doctors abusing patients with difficult diseases.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Defensiveness. They abused patients over the years because they thought the patients were faking. The only way they can now not see themselves as bad doctors and worse human beings is to try to convince the rest of the world that they were right and patients deserve the scorn heaped upon them.

Lack of character. They can't admit they were wrong and apologize, so they blame their victims.

Psychological issues. They can't deal with the complex emotions caused by changing situations. Some people don't have much more emotional range than anger. Frustration translates to anger. Fear translates to anger. Shame translates to anger. Embarrassment translates to anger. Many abusers have this emotional/psychological problem.

I try to see them only as pathetic human beings, but it's hard when they clearly had such power to harm other people... and used it.

Some suggest that it can be due to doctors' inability to diagnose and/or treat an illness, which hurts their egos, so they then blame the patient as they can't accept that they themselves have failed at their job. But I think that most patients will be sympathetic if a doctor can't figure everything out and admits it, as long as they treat them with respect and kindness and are trying their best. Maybe if doctors listened to patients more they could at least figure out who might be appropriate to refer them to.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Comments on the NYT article are now closed at a total of 581.
Dr Kaufman's early and valuable contribution was easy to overlook. In gratitude I repeat it here:

David Kaufman, MD California
"But virtually every patient has profoundly low natural killer cell function, about 80 % have undetectable vasopressin levels"

And there is an example of what I said that doctors should do - listen to patients. When I first went to my GP about polyuria, and he did some blood tests, I asked if he was testing for vasopressin. In reply he sneered "That's an obscure thing to test for." During ensuing years various doctors have sent me for numerous, probably-expensive referrals which of course have all failed to reveal the reasons for my polyuria, and I have had to fight numerous battles to get what I needed - desmopressin. All of this could have been avoided if the GP had actually had a conversation with me about vasopressin, and then tested it.

I actually typed up some summaries of scientific info about vasopressin, related hormones and ME for one doctor. She refused to read it, saying that it didn't 'float her boat'. o_O

:bang-head::bang-head::bang-head:
 

Sidereal

Senior Member
Messages
4,856
Awesome comment by Dr Kaufman and I just want to applaud him for zooming in on the vasopressin problem which is a nightmare issue for many of us who have mild DI and are faced with GPs and endocrinologists who refuse to accept the possibility of this.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Awesome comment by Dr Kaufman and I just want to applaud him for zooming in on the vasopressin problem which is a nightmare issue for many of us who have mild DI and are faced with GPs and endocrinologists who refuse to accept the possibility of this.

Including the 'top' endocrinologist who informed me that
  • You could only have DI if you were born with it
  • DI could not be partial or of mixed type (e.g. central and nephrogenic)
I actually told him that he was wrong. Of course he would not accept this. And I had wasted half a day travelling to and from the appointment which lasted about 10 minutes.

Good thing one can't die of frustration, or I would have died years ago...