Kati
Patient in training
- Messages
- 5,497
The CCC is outdated and does not contain references to the most recent scientific updates.You felt that the CCC Primer was too hard to follow, for doctors?
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, 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.
The CCC is outdated and does not contain references to the most recent scientific updates.You felt that the CCC Primer was too hard to follow, for doctors?
Most doctors that I know try their best to help their patients and given the appropriate information, will follow established guidelines.
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.
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.I have to wonder if doctors are becoming second-class citizens in their own institutions.
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: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 provides significant guidance for doctors considering other possible diagnoses: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.
But the IOM criteria provide only minimal guidance: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.
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.)
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.”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.
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.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.”
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.)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.
Have your doctors never checked these signs and symptoms? Do they perform their physical examinations by rote or commit their findings to heart?I have never met a doctor who uses a worksheet.
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
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
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.Have your doctors never checked these signs and symptoms? Do they perform their physical examinations by rote or commit their findings to heart?
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 .
The Report Guide for Clinicians indicates that an ME/CFS (SEID) diagnosis should also involve a prolonged physical examination and interview:Just looking at the worksheet is overwhelming. I can't imagine any regular doctor going through that.