Release of the IOM report - live webcast-2/10/2015

[SOC]

I hope somebody has some footage of his little act, just waiting for the right time to release it to the public.

Like, about now.

Surely there must be some humane people in his audiences who would find a doctor ridiculing patients in that manner -- whatever their diagnosis -- appallingly cruel and unprofessional. Let's hope they documented his shocking behavior.

 

[Sean]

Surely...

 

[Sean]

And by 'his act', I meant, of course, 'his alleged act'.

 

[eafw]

We therefore just need to get used to making more effort or learn to tolerate exertion .. and in step the psychs to teach us the error of our ways.

Exercise intolerance is a well-documented problem in many diseases, especially mitochondrial ones. There's no suggestion of a lack of effort.

The point is, however well documented in other diseases, that there are plenty of people who will read "exercise intolerance" as "can't be bothered/try harder/learn to be more tolerant then". This will not be helpful for us.

I for one am happy to see 'the F word' go out the window.

It hasn't really though. Look at the dignostic algorithm that they present, very first step: "Patient presents with profound fatigue". It is still central to the way this condition will be dealt with and talked about.

http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_DiagnosticAlgorithm

 

[Bob]

I'm slowly digesting all the info, and considering its possibly implications. I don't think we will know how this will affect us for quite a while, and until we see the response from the various government agencies including the CDC.

Some initial observations:

• ME/SEID is no longer a diagnosis of exclusion. (You get a diagnosis if your symptoms fit.)
• Fukuda is obsolete.
• They have separated ME/SEID from CFS and chronic fatigue and idiopathic fatigue.
• The new diagnostic criteria conflicts with Beth Unger's views at the CDC: I seem to remember her saying that post-exertional malaise is impossible to measure and that a minority of patients don't have PEM.

 

[Sidereal]

Comment by Dr. Derek Enlander on his fb page:

"The criteria that are quoted are a truncated version of the Canadian Consensus Criteria (CCC), truncated in a manner that allows the over-diagnosis of the disease. These criteria would also allow the diagnosis to include psychiatric conditions that are specifically excluded by both the Fukuda and CCC. I am surprised that the experts in the IOM Oversight group has not commented on this."

With all due respect to Dr Enlander, I don't understand what he's saying here. PEM is a required symptom to make the IOM SEID diagnosis unlike in the Fukuda CFS where it was optional. Being a very rare and possibly unique symptom, this is a huge step toward curbing over-diagnosis. No psychiatric condition is characterised by being made worse by exertion. In addition, either cognitive dysfunction or orthostatic intolerance are required for a diagnosis of SEID. While cognitive dysfunction is present in all psychiatric conditions (and all kinds of other conditions including neurological and metabolic), orthostatic intolerance is not a recognised symptom of any psychiatric condition.

 

[Ember]

With all due respect to Dr Enlander, I don't understand what he's saying here.

Then consider the CCC exclusions:

Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer...treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological 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.

 

[eafw]

No psychiatric condition is characterised by being made worse by exertion.

Exercise phobia, health anxiety, pervasive refusal disorder, neurasthenia, somatisation, conversion disorder - and whatever else they want to invent to fit with this. They will simply define the worsening as part of the psychology of it.

 

[Sidereal]

Then consider the CCC exclusions:

Well, I am glad that the new report has moved away from viewing this disease as a trash heap diagnosis of exclusion that can only be made once every other disease under the sun has been ruled out. Lots of people out there have hypothyroidism, anemia, diabetes, B12 deficiency, sleep apnea etc. yet despite adequate treatment for those fatiguing conditions they are still left with ME-related fatigue and other symptoms.

 

[Ember]

They have separated ME/SEID from CFS....

They instead rejected ME:

In considering which name would be most appropriate, the committee turned first to ME—“myalgic encephalomyelitis” or “encephalopathy.” Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME. This term also fails to convey the full spectrum of this disorder. While the term “encephalopathy” suggests the presence of global brain dysfunction, a symptom supported by research, the term “encephalomyelitis” suggests brain inflammation, for which there is much less evidence at present. Similarly, the term “myalgia” refers to a symptom that is neither a distinguishing aspect of this illness nor a severe symptom in many patients with ME/CFS.

 

[Sidereal]

Exercise phobia, health anxiety, pervasive refusal disorder, neurasthenia, somatisation, conversion disorder - and whatever else they want to invent to fit with this. They will simply define the worsening as part of the psychology of it.

None of these diagnoses are considered to be worsened by exertion. On the contrary, rehabilitation/exercise and psychotherapy are the treatment of choice. I can't speak to what psychiatry will do in the future but currently the conditions you've listed are believed to be made better by exercise.

 

[Scarecrow]

They have separated ME/SEID from CFS and chronic fatigue and idiopathic fatigue.

They instead rejected ME:

They have lumped ME and CFS together but made PEM a mandatory requirement for CFS, instead of an optional extra.

As clinical criteria, I'm a little worried about PEM being mandatory.

 

[Ember]

Well, I am glad that the new report has moved away from viewing this disease as a trash heap diagnosis of exclusion that can only be made once every other disease under the sun has been ruled out. Lots of people out there have hypothyroidism, anemia, diabetes, B12 deficiency, sleep apnea etc. yet despite adequate treatment for those fatiguing conditions they are still left with ME-related fatigue and other symptoms.

ME being a more restrictive diagnosis, the ICC exclusions are fewer: Primary psychiatric disorders, somatoform disorder, substance abuse & paediatric 'primary' school phobia.

 

[A.B.]

None of these diagnoses are considered to be worsened by exertion. On the contrary, rehabilitation/exercise and psychotherapy are the treatment of choice. I can't speak to what psychiatry will do in the future but currently the conditions you've listed are believed to be made better by exercise.

The IOM basically ignored claims of somatization and the whole package of psychobabbles that comes with it, which speaks volumes.

To preserve their careers, the psychobabblers will invent a new psychiatric illness only they can understand and treat. Or maybe they'll just go find another poorly understood illness to parasitize.

 

[user9876]

The IOM basically ignored claims of somatization and the whole package of psychobabbles that comes with it, which speaks volumes.

To preserve their careers, the psychobabblers will invent a new psychiatric illness only they can understand and treat. Or maybe they'll just go find another poorly understood illness to parasitize.

They already have its called Bodily Distress Disorder.

They are looking at other things there has been quite a move to promote psychiatry for cancer aiming to introduce mental health screening and promoting dodgy claims of improved outcomes (the first claims were based on a statistical outlier and quoting the mean on a small sample).

 

[Bob]

They have lumped ME and CFS together but made PEM a mandatory requirement for CFS, instead of an optional extra.

I don't think I agree. Fukuda does not require PEM and, unlike Fukuda, fatigued patients without PEM will not be eligible for a diagnosis of SEID. So they are separating ME (which requires PEM/PENE) from CFS (which does not require PEM). But in any case, the new criteria requires PEM, which is a new development.

 

[Sidereal]

ME being a more restrictive diagnosis, the ICC exclusions are fewer: Primary psychiatric disorders, somatoform disorder, substance abuse & paediatric 'primary' school phobia.

I don't see why this is necessary in a case definition that requires symptoms be made worse by exertion and the presence of PEM. This already rules out the possibility that the symptoms are solely due to the presence of a psychiatric condition.

Also, it is possible to have a primary psychiatric disorder and develop ME. It is possible to develop any disease despite having a primary psychiatric disorder; in fact, it is statistically more likely that you will develop an organic illness and die earlier if you have a psychiatric condition, not less. Having a psychiatric condition does not inoculate you against getting ME or any other illness.

I don't see any other fatiguing organic illness being defined like this. Do the criteria for MS or Parkinson's or lupus say you can't have the diagnosis if you have a primary psychiatric disorder?

 

[eafw]

None of these diagnoses are considered to be worsened by exertion. On the contrary, rehabilitation/exercise and psychotherapy are the treatment of choice. I can't speak to what psychiatry will do in the future but currently the conditions you've listed are believed to be made better by exercise.

You misunderstand my point.

The psychs will say (as they currently do) that exercise is a treatment for CFS/ME (a somatisation disorder) even though patients claim it makes them worse. A presenting symptom is a worsening of the condition on exertion, but historical and ongoing interpretation is that that worsening is either deconditioning or all part of the faulty belief system.

In other words, PEM as a requirement is no hindrance to a psych interpretation and/or GET.

Have a quick look here, reactions from Drs to the IOM report

http://forums.phoenixrising.me/index.php?threads/this-is-what-were-up-against.35468/

 

[Ember]

So they are separating ME (which requires PEM/PENE) from CFS (which does not require PEM).

As Dr. Enlander points out, "The criteria that are quoted are a truncated version of the Canadian Consensus Criteria (CCC), truncated in a manner that allows the over-diagnosis of the disease.” The CCC is an ME/CFS definition. In the Committee's view, their definition is broader than ME: “This term [ME] also fails to convey the full spectrum of this disorder.”

 

[A.B.]

The psychs will say (as they currently do) that exercise is a treatment for CFS/ME (a somatisation disorder) even though patients claim it makes them worse. A presenting symptom is a worsening of the condition on exertion, but historical and ongoing interpretation is that that worsening is either deconditioning or all part of the faulty belief system.

In other words, PEM as a requirement is no hindrance to a psych interpretation and/or GET.

I disagree, PEM is incompatible with somatization. According to them IOM report, PEM is real and measurable and cannot be explained by deconditioning. Dr Clayton has also explicitly said that this is not an imaginary illness.

The IOM report is incompatible with the Wessely interpretation. The Oxford definition wasn't even reviewed by the IOM.