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

Sidereal

Senior Member
Messages
4,856
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/

Thanks. You're talking to the same person who gathered up those reactions.

I understand your point but the report also cites the 2-day CPET studies as objective evidence of worsening on exertion. I totally agree that a government committee diktat is not going to change the minds of physicians who believe it's a psych problem. But if objective evidence of exercise making us worse were to continue to accumulate, then the deconditioning position is going to become untenable.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
@Bob CFS didn't* require PEM before this report. The proposed name change aside, the report refers all the way through to 'ME/CFS'. The new diagnostic criteria (page 29) refers specifically to ME/CFS.

[*edited: sorry, I've just realised this is ambiguous and might imply that you were saying it did. The point I am trying to make is just that PEM is optional in Fukuda but mandatory in the new definition.]

It's also worth quoting the Statement of Task from page 41 of the download:

BOX 1-1
Institute of Medicine Study on Diagnostic Criteria for ME/CFS:
Statement of Task

An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients and their caregivers.

The committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

Specifically the IOM will:

• Conduct a study to identify the evidence for various diagnostic clinical
criteria of ME/CFS using a process with stakeholder input, including
practicing clinicians and patients;
• Develop evidence-based clinical diagnostic criteria for ME/CFS for use by
clinicians, using a consensus-building methodology;
• Recommend whether new terminology for ME/CFS should be adopted;
and
• Develop an outreach strategy to disseminate the definition nationwide to
health professionals.

Over the 18 months, the committee will consider 4 topic areas and produce a consensus report with recommendations. The recommendations will have a domestic focus; however, major international issues may be identified. As the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003 ME/CFS Canadian Consensus Criteria, the 2007 British National Institute for Health and Clinical Excellence
(NICE) Clinical Guidelines for CFS/ME, the 2010 Revised Canadian Consensus Criteria, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical Study of CFS. In an effort to minimize overlap and maximize energy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS.

The committee also said this in relation to the task assigned (page 32):
Although there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date. Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted. Thus, the committee was unable to define subgroups of patients or even to clearly define the natural history of the disease. More research is essential.

This is a lumper's report. They are not saying that ME and CFS are different conditions, they are saying that there is insufficient evidence to identify subgroups within what is referred to currently as ME/CFS (whether the subgroup be ME, CFS or anything else).

The new criteria simplifies the diagnosis of ME and it tightens up on the diagnosis of CFS, while at the same time urging doctors to make a diagnosis instead of leaving patients in limbo.

SEID can therefore be considered an umbrella term until such time that further research reveals more about aetiology and pathophysiology.
 
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Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
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 interpration. The Oxford definition wasn't even reviewed by the IOM.
While I agree with you, I think we know it won't stop them trying!
 

eafw

Senior Member
Messages
936
Location
UK
Thanks. You're talking to the same person who gathered up those reactions.

LOL, cognitive processing probs exhibit A

the report also cites the 2-day CPET studies as objective evidence of worsening on exertion. ...if objective evidence of exercise making us worse were to continue to accumulate, then the deconditioning position is going to become untenable.

The report is good, it looks at the evidence, but in practice it's the perception and politics where things are tripping up. Hopefully at some point enough medical evidence will be there to stop the psychs but it will take time to undo.
 
Messages
15,786
In other words, PEM as a requirement is no hindrance to a psych interpretation and/or GET.
That's because a small group of psychiatrists (and some other practitioners) have delusional beliefs. It doesn't matter what anyone says or proves about ME/CFS biologically - they will never change their beliefs.

The difference now is that it has been said rather bluntly that those beliefs are wrong. People who don't obsess about creating psychogenic illnesses will read the IOM report and take away the obvious message - ME/SEIDS is not a psychiatric disorder of any sort. That is what counts.

Those psychs were never going to be persuaded anyway, and it would be pointless and impossible to try to come up with something they couldn't rationalize away in their own minds as being psychosomatic.
 
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eafw

Senior Member
Messages
936
Location
UK
That's because a small group of psychiatrists (and some other practitioners) have delusional beliefs. It doesn't matter what anyone says or proves about ME/CFS biologically - they will never change their beliefs.

I wonder if this will all play out differently in the US vs UK/Aus/some parts of Europe where the psychs do have quite a stranglehold on treatment and perception of the illness amongst the wider medical community. They are very influential here, not just a noisy but irrelevant minority.

The difference now is that it has been said rather bluntly that those beliefs are wrong. People who don't obsess about creating psychogenic illnesses will read the IOM report and take away the obvious message - ME/SEIDS is not a psychiatric disorder of any sort. That is what counts.

It has been said in the report, but I am pessimistic about how much the detailed content of the report will be taken on board and how much it will count for in practice.
 

Cheshire

Senior Member
Messages
1,129
I wonder if this will all play out differently in the US vs UK/Aus/some parts of Europe where the psychs do have quite a stranglehold on treatment and perception of the illness amongst the wider medical community. They are very influential here, not just a noisy but irrelevant minority.

It has been said in the report, but I am pessimistic about how much the detailed content of the report will be taken on board and how much it will count for in practice.

I know that in France, CDC and NICE guidelines are often scrutinized before making our own.

I hope this IOM report will have some impact.



Those psychs were never going to be persuaded anyway, and it would be pointless and impossible to try to come up with something they couldn't rationalize away in their own minds as being psychosomatic.

I guess the less "out of touch with reality" will also realize that their position is unsustainable, turn their coat inside out and slowly drift to a more and more "biological" model.


And BTW I'm really curious about the reaction of the BPS school and their SMC friends. They have exploited the PACE trial to the bone, and after this "exercice phobia" media plan, what can they do to counter this new report? And will they react?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is a lumper's report.
I disagree. By requiring PEM, it is precisely the opposite of a lumper's diagnostic criteria, in my opinion.

But what the report doesn't do, as far as I've seen so far, is to say what diagnosis someone should receive if they don't have PEM, which seems like quite an omission. They might not acknowledge it, but that subgroup is not included in a SEID diagnosis. So it's not a lumper's diagnostic criteria.

Disclaimer: I hate the term 'lumper'! :confused:
 
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Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I disagree. By requiring PEM, it is precisely the opposite of a lumper's diagnostic criteria, in my opinion.
Yes, I acknowledge that part. But otherwise, what they are doing are taking two potentially different entities, which have been contentiously debated as actually different entities, and have said " we can't split them based on our current knowledge". In that sense they are saying that ME is 'not different' and that was the original point I was responding to:

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


But what the report doesn't do, as far as I've seen so far, is to say what diagnosis someone should receive if they don't have PEM, which seems like quite an omission. They might not acknowledge it, but that subgroup is not included in a SEID diagnosis.
Yep, as I said on another thread, this is my sole concern about PEM being mandatory. It will leave people undiagnosed, some of whom actually do have ME/CFS and will later go on to have PEM. There is a chance that a failure to diagnose them initially will cause harm. And there's the other huge concern that people without PEM will be left out as prey for the psychs despite probably having a biological basis for their illness. I balk at that.


Disclaimer: I hate the term 'lumper'! :confused:
Sorry! I don't mean to get your goat.

I see the report as very progressive in its getting back to basics mentality and its honesty. I don't mind the lumping. They are just telling it like it is. People are sick, their lives are being destroyed and we need more, much more biomedical research to make sense of it all.
 

Forbin

Senior Member
Messages
966
Just my personal opinion, but I'm glad to see some starting to use the term "ME/SEID."

"SEID" may not be perfect, but I would much rather have a debate over which term is more productive, "ME" or "SEID," than to miss this opportunity to give "CFS" the old heave-ho.

Yes, the report says that both "ME" and "CFS" are inappropriate, but, to me, "ME" is now just shorthand for the CCC/ICC definitions, whatever their cause.

In my view (and maybe only in my view), "ME/SEID" simply says that "SEID" is certainly better than "CFS," but we're not convinced that SEID is a better definition than CCC/ICC ME.

Sure, the IOM may not like "ME," but the common usage of something like "ME/SEID" can keep ME in the game while, at the same time, moving the fight distinctly forward by saying aloha to "CFS."
 
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SOC

Senior Member
Messages
7,849
But what the report doesn't do, as far as I've seen so far, is to say what diagnosis someone should receive if they don't have PEM, which seems like quite an omission.
Not everyone who has a CFS diagnosis has the disease we are talking about. Some -- I suspect a significant number -- have other treatable conditions for which they were never tested. Those people will not fit the SEID diagnostic criteria, which should be a good thing.

I think the diagnosis as it stands should lead to further testing for treatable conditions which present with chronic fatigue without PEM. Primary dysautonomia and endocrine conditions come to mind. Too many people have been thrown into the CFS pot without proper diagnostic testing because that was permitted with the Fukuda (and other) definitions. "Oh, you have chronic fatigue? You have Chronic Fatigue Syndrome. End of story, no need for further testing." It was the lazy doctor's out. The SEID diagnostic criteria will (theoretically) force doctors to do further investigation in cases where PEM does not exist because they no longer have a wastebasket to toss those patients into.

Of course, what should happen and what will happen are two entirely different things.
 

Sing

Senior Member
Messages
1,782
Location
New England
Back to Dr. Enlander's objection about the SEID criteria including people with primary psychiatric diagnoses, I wonder if that concern is mostly to do with research? It seems to me that the research criteria used over the next 5 years before the next review (hopefully there will be one) ought to be strict and exclusive enough so that research findings will apply.

What harm does this clinical definition of SEID do? It offers an easier path for physicians to use to make diagnoses, and so the idea is that more patients can be helped--the goal Dr. Clayton emphasized a number of times.

I personally don't object to this clinical definition other than wishing that cognitive or memory impairment since the onset of illness had also been made mandatory, rather than in the at least one of two category at the end, with orthostatic intolerance. I don't know why they didn't make that mandatory as I have read in patient polls that it is the aspect most troubling to patients. (It is to me, and I have serious, very limiting PEM.)

But I think this definition, as a clinical one, seems good for now to go on with, and hopefully the research will clarify this illness better over the next several years. For that to happen, however, the research criteria may need to be stricter.
 

A.B.

Senior Member
Messages
3,780
The emphasis on PEM should keep SEID distinct from depression. Depression allegedly benefits from just going out and exercising.

The definition of SEID used in the IOM report is somewhat vague, and not as strict as say in the ICC, but the intent still seems clear. Future research can clarify what PEM is exactly.