• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Some doctors have deep contempt for patients

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
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)
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Most doctors that I know try their best to help their patients and given the appropriate information, will follow established guidelines.

In spite of my dim views of the medical industry, I sympathize with the circumstances doctors have been thrust into, particularly in the US. Forty years ago physicians were mostly independent professionals managing their own small business, a very important part of the true middle class (before "middle class" became a meaningless phrase). They were at the top of the social elite in smaller communities, and highly regarded.

Now it looks like most physicians are forced to become highly-educated wage slaves, like the rest of us working class stiffs (well, maybe not the highly-educated part). To add insult to injury, I see more and more medical empires being run by million-dollar business administrators instead of doctors taking care of the local community. I have to wonder if doctors are becoming second-class citizens in their own institutions.

I assume that young doctors today start out under a mountain of debt. It's extremely unfair to force a young person to become a debt slave just so they can make a living. And certainly, no one goes to school for umpteen years so they can spend their days fighting with insurance companies.

My mom worked as a nurse for many years. I remember when some giant hospital chain bought up the small local hospital she worked at. This was probably mid 1970s. As a naive young person I was appalled that corporations were allowed to turn a non-profit institution created to alleviate suffering into a profit center. Now selling off the public domain is just another day at the office.

So now that taking care of sick people has been turned into a massive profit-extraction machine, we're all being thrown into the meat grinder - doctors, nurses, patients, everybody. No wonder there are so many bad feelings all around...


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.

:bang-head::bang-head::bang-head:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have to wonder if doctors are becoming second-class citizens in their own institutions.
I don't wonder. In most cases I think this is right. Doctors have lost control of the destiny of the profession. Its health regulators and insurers and government that dominate now. Its not that the medical profession couldn't assert itself, its that they don't. Just as they do not typically get involved in fixing problems within medicine, such as the big issues in psychiatric diagnoses and treatment.
 

Ember

Senior Member
Messages
2,115
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".
How simple, I wonder, do doctors expect an ME diagnosis to be? The ICC divides the diagnosis of this complex multisystem disease into four parts:

Post-exertional neuroimmune exhaustion (PENE)
_____ (Compulsory)
1. Marked, rapid physical or cognitive fatigability in response to exertion
2. Post-exertional symptom exacerbation
3. Post-exertional exhaustion: immediate or delayed
4. Recovery period is prolonged
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Neurological impairments: 1 or more symptom from 3 symptom categories
_____ (3)
___ 1. Neurocognitive impairments
___ 2. Pain
___ 3. Sleep Disturbance
___ 4. Neurosensory, perceptual and motor disturbances

Immune, gastro-intestinal & genitourinary impairments: 1 or more symptoms from 3 categories
_____ (3)
___ 1. Flu-like symptoms: recurrent, chronic, worsen with exertion
___ 2. Susceptibility to viral infections – prolonged recovery periods
___ 3. Gastro-intestinal tract disturbances
___ 4. Genitourinary disturbances
___ 5. Sensitivities

Energy production/transportation impairments: At least one symptom
_____ (1)
___ 1. Cardiovascular
___ 2. Respiratory
___ 3. Loss of thermostatic stability
___ 4. Intolerance of extremes of temperature
 
Last edited:

Hip

Senior Member
Messages
17,824
How simple, I wonder, do doctors expect an ME diagnosis to be?

Don't forget that when primary care doctors are considering a patient's symptoms, it's not just one possible disease such as ME/CFS that they need to bear in mind, but hundreds. They have to best match the patient's symptoms to one of hundreds of possible diseases. That is why a simpler set of diagnostic criteria may be more useful, and might be more effective at getting ME/CFS patients identified and properly diagnosed.

In the case of going to see an ME/CFS specialist, that might be the best place for the CCC or ICC. That is, assuming that the CCC or ICC have some advantage over the CDC or SEID criteria (and I am not aware of any evidence that they do).
 

Ember

Senior Member
Messages
2,115
Don't forget that when primary care doctors are considering a patient's symptoms, it's not just one possible disease such as ME/CFS that they need to bear in mind, but hundreds.
The ICC provides significant guidance for doctors considering other possible diagnoses:
Differential Diagnosis: When indicated on an individual basis, rule out other diseases that could plausibly simulate the widespread, complex, symptom pathophysiology defining ME. E.g.: Infectious disorders: TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections; Neurological: MS, myasthenia gravis, B12; Autoimmune disorders: polymyostitis & polymyalgia rheumatica, rheumatoid arthritis; Endocrine: Addison's hypo & hyper thyroidism, Cushing's Syndrome; cancers; anemias: iron deficieny, B12 [megaloblastic]; diabetes mellitus; poisons.

Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient's history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded. Paediatric: 'primary' school phobia.
But the IOM criteria provide only minimal guidance:
Patients who do not meet the criteria for ME/CFS (SEID) should continue to be diagnosed by other criteria as their symptoms and evaluations dictate. These patients should also receive appropriate care. (Conditions that may approach but not meet the criteria for ME/CFS [SEID] include, for example, protracted recovery from EBV mononucleosis or gradual emergence of a different chronic illness, such as multiple sclerosis, colon cancer, or a primary sleep disorder.)
 

Hip

Senior Member
Messages
17,824
@Ember
I think the point you are making was discussed in another thread, where it was remarked that doctors normally do consider other diseases if those diseases match the patient's symptoms. I presume it is common for a patient's symptoms to match more than one disease, and that this is something doctors deal with all the time, so it would not require any special prompting to seek a differential diagnosis when symptoms are observed that suggest several diseases.
 
Last edited:

Ember

Senior Member
Messages
2,115
I presume it is common for a patient's symptoms to match more than one disease, and that this is something doctors deal with all the time, so it would not require any special prompting to seek a differential diagnosis when symptoms are observed that match more than one disease.
If you consider differential diagnosis to be a straightforward process, then I don't understand what point you're making when you write, “They have to best match the patient's symptoms to one of hundreds of possible diseases. That is why a simpler set of diagnostic criteria may be more useful, and might be more effective at getting ME/CFS patients identified and properly diagnosed.”

In what way are the IOM criteria "more effective at getting ME/CFS patients identified and properly diagnosed?"
 
Messages
15,786
If you consider differential diagnosis to be a straightforward process, then I don't understand what point you're making when you write, “They have to best match the patient's symptoms to one of hundreds of possible diseases. That is why a simpler set of diagnostic criteria may be more useful, and might be more effective at getting ME/CFS patients identified and properly diagnosed.”
It's a complicated process, but one which is automatically part of diagnosing every disease. Adding instructions on how to do it as part of the diagnostic process for a specific disease is about as meaningful as including instructions for the doctor to make sure the patient has a pulse before diagnosing SEID.
 

Ember

Senior Member
Messages
2,115
Adding instructions on how to do it as part of the diagnostic process for a specific disease is about as meaningful as including instructions for the doctor to make sure the patient has a pulse before diagnosing SEID.
The ME Primer includes a Physical Examination worksheet that provides instructions for checking BP/pulse: (1) lying down; (2) immediately after standing; (3) after standing 3 min.; (4) after standing 5 min. (Caution: Someone should stand beside the patient.)

Physical Examination: Standard examination with attention to:
temp. _______; pH: _______; BP/pulse: 1. lying down: BP_______/_______, Pulse________;
2. immediately after standing: BP _____/_____, Pulse ______; 3. after standing 3 min.:
BP _____/_____, Pulse _____ ; 4. after standing 5 min.: _______/_______, Pulse ________ (Caution: Someone should stand beside the patient.)

Neurological
CNS
: reflex examination: (neck flexion & extension may accentuate abnormalities from cervical myelopathic changes)
Neurocognitive: □ slowed thought, □ impaired concentration, □ difficulty remembering questions; □ cognitive fatigue: during assessment, serial 7 subtraction (subtracting by 7 from 100)_______________________ □ cognitive interference: (e.g. serial 7 subtraction done simultaneously with tandem walk)____________________
Pain/musculoskeletal: □ hyperalgesia, □ widespread, □ myofascial or radiating, □ muscle-tendon junctions, □ taut muscles; joints: □ inflammation, □ hypermobility, □ restricted movement; positive tender points ____/18; □ meets fibromyalgia criteria; muscle tone:
□ paretic, □ spastic; muscle strength ___________________________
Neurosensory, perceptual and motor disturbance: □ abnormal accommodation responses of the pupils, □ suborbital hyperpigmentation; tandem walk: □ forward, □ backwards;
□ Romberg test; □ reflex examination _____________

Immune: Tender lymphadenopathy: □ cervical, □ axillary, □ inguinal regions (more prominent in acute phase), □ flares with exertion; □ crimson crescents in the tonsillar fossa: □ demarcated along margins of both anterior and pharyngeal pillars, □ if patient has no tonsils, they assume a posterior position in the oropharynx; □ splenomegaly

GI: □ increased bowel sounds, □ abdominal bloating, □ abdominal tenderness: epigastrium (stomach), right lower quadrant (terminal ileum) and left lower quadrant (sigmoid colon) – most patients have tenderness in 2-3/3 areas

Cardiovascular & respiratory: □ arrhythmias: □ BP as above; □ mottling of extremities,
□ extreme pallor, □ Raynaud’s phenomenon, □ receded moons of finger nails (chronic phase)_______________________________
 

Ember

Senior Member
Messages
2,115
I have never met a doctor who uses a worksheet.
Have your doctors never checked these signs and symptoms? Do they perform their physical examinations by rote or commit their findings to heart?
 
Last edited:

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Doctor Robert Forbes wrote:
I have been a family physician for43 years.
Have practiced in rural Nova Scotia, the Canadian Arctic and Mississippi.
I am sorry but I don't buy any of this!
I have had patients with chronic fatigue, fibromyalgia (which I call fibro- my life sucks!),
attention deficit disorder, autism, chronic yeast infection, premenstrual dysphoric disorder, and now, systemic exertion intolerance disease. Try lazy!
All of them seem to want disability, disabled parking stickers, amphetamines, narcotics or Xanax. And they usually get them only to add to their problems.
I fear we contribute to this in a big way by legitimizing their complaint.
We have become a very dependent society and I am ashamed and concerned.
Fortunately I am semi-retired and fear no retribution for my free speech.
I did try to be respectful.
Thanks for the opportunity.
Just saying...
http://www.aafp.org/news/health-of-the-public/20150302newchronicfatigue.html

Doctors version of "Jackass - The Movie"!
 

beaker

ME/cfs 1986
Messages
773
Location
USA

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

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 .
 

adreno

PR activist
Messages
4,841
Have your doctors never checked these signs and symptoms? Do they perform their physical examinations by rote or commit their findings to heart?
Just looking at the worksheet is overwhelming. I can't imagine any regular doctor going through that. I agree that the IOM guidelines are a huge positive for us.
 

Gijs

Senior Member
Messages
690


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 .

He even made it worse. So, this is how doctors talk about CFS when they have lunch. He felt caught like a criminal apology when he is caught standing in front of the Judge. They don't really feel sorry. This is a very bad human being.
 

Ember

Senior Member
Messages
2,115
Just looking at the worksheet is overwhelming. I can't imagine any regular doctor going through that.
The Report Guide for Clinicians indicates that an ME/CFS (SEID) diagnosis should also involve a prolonged physical examination and interview:

“Observe for progressive fatigue (physical or mental), need for help or need to lie down during a prolonged exam;”

“Observe for difficulties with thinking during the clinic visit—unusual trouble remembering medications, relating details of history or under standing questions/recommendations, expressing self;”

“Severely affected patients may need to lie down while they are being interviewed.”