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Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

Ember

Senior Member
Messages
2,115
I don't know how you come to that conclusion....
It wasn't a conclusion, but rather an impression arising from your seemingly cavalier attitude toward the effect of power on both researchers seeking NIH funding and U.S. clinicians forming medical diagnoses. In light of your response to the opinions of others who have written about the implications of the IOM report, I won't expect any better fate for opinions of mine. I'll refer you instead to MEAdvocacy.org for their discussion of ICD-10-CM.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For the divisiveness of the report, I blame the IOM Committee. To demand validation of the SEID criteria is to challenge Dr. Clayton's statement, “We recognize that our criteria now represent the state of the science at a moment in time.”
Which I challenge. That is how science works. It NEEDS to be challenged, especially if you are pro-SEID and want to see good science. So pro- or anti-SEID should want to see the challenge. Otherwise we are happy with bureaucracy over-riding science, and we know where this leads from the history of the disease.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I'll refer you instead to MEAdvocacy.org for their discussion of ICD-10-CM.
Which is clearly about bureaucracy. Many diagnostic categories in ICD and especially DSM probably do not reflect discrete disorders. They are just a label. From what I am reading most doctors don't give a damn about the diagnostic category, they use their own judgement, and the ICD simply becomes a place for them to find a code to put on forms. Sometimes they have to wedge a patient's condition in as its not a great fit.

Getting ME accepted in science as a physical disease not a disorder or illness has been an important step for a long time. I don't think that the IOM report does this well, largely because we still lack sufficient science, but its a start. Let me elaborate. We do not yet know if ME is one disease, two, or many, or a spectrum disorder, or whatever. That the patients have a disease is fairly clear, but how discrete an entity that is has not been proved.

ICD codes, and DSM codes, are not about scientifically validated entities. They are about bureaucratic entities. Many are clearly wrong or inadequate, and are invented categories to pigeonhole patients in when the doctor really doesn't know what they have. They are just labels.

This does not mean labels entirely lack power or influence. It does mean that in the long term it will not matter. It also means that for the science it has very little impact.

The single biggest thing that will alter insurance coverage and medical access is better research. From that everything else follows. Which means we need more funding and improved funding priority.

I suspect the main reason why ICD has any value in our considerations here is that SEID is not listed at all, so what do doctors write on their forms? This is a barrier to adopting SEID.
 

Ember

Senior Member
Messages
2,115
It NEEDS to be challenged, especially if you are pro-SEID and want to see good science. So pro- or anti-SEID should want to see the challenge. Otherwise we are happy with bureaucracy over-riding science, and we know where this leads from the history of the disease.
Those opposed to the IOM report likely see it as a Trojan horse. Supporters hope to see it embraced. The Solve ME/CFS Initiative's briefing, for example, was “intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.” Where was the challenge to the SEID criteria? Carol Head praised the report's rigorous methodology and forthright conclusions: “This is the substance that we, who care deeply about this illness, have long needed.”

What evidence has there since been of any momentum? As @Farmer wrote, “Haven't seen any news stories pop up in response to this news conference yet. Have you?”
 
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Ember

Senior Member
Messages
2,115
I suspect the main reason why ICD has any value in our considerations here is that SEID is not listed at all, so what do doctors write on their forms?
The IOM Committee failed to recommend where SEID should be placed in ICD-10-CM. They indicated neither where it should be added nor which code(s), if any, it should replace. They wrote, "A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) (sic) that is not linked to “chronic fatigue” or “neurasthenia.”

I would support the IOM report were the Committee to recommend that a SEID diagnosis should exclude ME.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I would support the IOM report were the Committee to recommend that a SEID diagnosis should exclude ME.
I wouldn't. If it excluded ME then you have SEID if you qualify for it, not ME. I suspect you meant if ME were an exclusionary condition?

I think SEID is a rebadged ME definition. I am unsure if its a good one or a disaster though. I want good research to show if its great, disastrous, or middling.

Its very likely that many ME patients are also missed with former ME diagnoses. Its also likely that due to medical unfamiliarity with PEM, PER, and PENE, (the 3 Ps?), many doctors incorrectly diagnose it. I think it very likely huge numbers of ME patients are misdiagnosed, and huge numbers are not diagnosed. That is the reality I think we face.

We don't know if SEID is a step forward. There are valid concerns. That is why science tests things. Then tests them again. Then again. Or at least that is the theory, but if nobody bothers and nobody is concerned then it might not happen.

There are plenty of IOM related battles for advocacy that are left to fight. We need to focus on the important ones, which means we have to figure out which they are.

If the IOM panel is right the single biggest issue may well be under diagnosis. We need to address medical education, and we need the current CDC toolkit to be gone. We need SEID tested. We need to demand parity in research funds, which will immediately boost CCC research if it happens. These are, in my opinion, our short term priorities. Most other concerns follow on from these, that is addressing these concerns help our other concerns.

In the long-medium term (four to ten years I suspect) I think we have another fight brewing. If Rituximab and similar treatments are shown to be really effective in the phase 3 trial we may have to fight to get this treatment rolled out, covered by insurance or subsidized, and made available to everyone who needs it and is a responder. A good treatment will supersede most of our other concerns.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I would support the IOM report were the Committee to recommend that a SEID diagnosis should exclude ME.
Personally, I would be very happy for SEID to replace CFS, and for ME to remain a separate diagnosis made by the CCC and/or ICC. If that's your main issue with the IOM criteria, it seems a shame to reject the entire report for purely that reason. As I've said previously, I could get behind an advocacy effort that wanted to keep the ICC as a separate diagnostic criteria for ME. And I wouldn't object to ME being retained in the ICD-10 codes as it is now, separate from SEID. (I'm referring to G93.3 in ICD-10, not the US' codes which I'm not so familiar with.) If your advocacy was specifically directed towards keeping ME as a separate diagnosis, rather than rejecting the entire IOM report, then I wouldn't have any argument with it. I also think a more specific advocacy effort would have more likelihood of success, because I can't see the govt agencies ever rejecting this report wholesale.
 
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Nielk

Senior Member
Messages
6,970
Personally, I would be very happy for SEID to replace CFS, and for ME to remain a separate diagnosis made by the CCC and/or ICC. If that's your main issue with the IOM criteria, it seems a shame to reject the entire report for purely that reason. As I've said previously, I could get behind an advocacy effort that wanted to keep the ICC as a separate diagnostic criteria for ME. And I wouldn't object to ME being retained in the ICD-10 codes as it is now, separate from SEID. (I'm referring to G93.3 in ICD-10, not the US' codes which I'm not so familiar with.) If your advocacy was specifically directed towards keeping ME as a separate diagnosis, rather than rejecting the entire IOM report, then I wouldn't have any argument with it. I also think a more specific advocacy effort would have more likelihood of success, because I can't see the govt agencies ever rejecting this report wholesale.

When this line of thinkin, separating ME diagnosis from the new SEID, was attempted a little while back on Phoenix Rising thread, these were the comments from members:

If the two illnesses are mutually exclusive, then research into one does not apply to research into the other. We are no longer in the same funding stream -- donations to research SEID should not be used for ME research and vice versa. We are no longer a team working together to get more research into "this disease" because, according to you, SEID and ME are mutually exclusive diseases. By that argument, MEAdvocacy is not at all representing the general ME/CFS patient population, but instead a group of people with an entirely different disease than the majority of the ME/CFS population as we see it now.


To add to the confusion, since many people meet both the ICC and the IOM criteria, I can't figure out how the two diseases are mutually exclusive. If they're mutually exclusive, you can't -- by definition -- have both.

There is no evidence that ME and SEID/CFS are separate and mutually exclusive diseases. We have no idea what ME is, whether it's one or 100 diseases. ICD classifications do not constitute evidence of anything; they're a committee decision not based on science.

What will Lipkin, Klimas, the Lights, Montoya, and all the other top researchers be studying -- SEID with US gov't recognition and funding, or ME with no government recognition or funding? Where will most private patient donations go -- to top researchers using the gov't defined SEID or.... who? It's tough to get published if you don't use an accepted disease definition. How many researchers are going to take that risk? Sure, many might study the more severe group as a subset of SEID, but not if it is insisted that it's not a subset of SEID, but an entirely different disease.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
When this line of thinkin, separating ME diagnosis from the new SEID, was attempted a little while back on Phoenix Rising thread, these were the comments from members...
Thanks Nielk. I guess there are are going to be lots of different strongly held opinions about this. I'm just expressing my own opinions. I haven't read the context of those comments but they seem to be discussing mutual exclusivity. I don't think it's even necessary to have that discussion if advocating for the ICC. You could, for example, advocate that the ICC is an important tool for researchers and clinicians that should continue to be used to define a tighter cohort. And, for the ICD-10, you could advocate that G93.3 is kept intact, minus the CFS index link. SEID could be an entirely separate entry in the ICD-10. This would bipass any contentious discussions re mutual exclusivity. I think there are various advocacy strategies that could potentially get what you want without having to fight against the entire IOM process and report.
 
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Iquitos

Senior Member
Messages
513
Location
Colorado
Personally, I would be very happy for SEID to replace CFS, and for ME to remain a separate diagnosis made by the CCC and/or ICC. If that's your main issue with the IOM criteria, it seems a shame to reject the entire report for purely that reason. As I've said previously, I could get behind an advocacy effort that wanted to keep the ICC as a separate diagnostic criteria for ME. And I wouldn't object to ME being retained in the ICD-10 codes as it is now, separate from SEID. (I'm referring to G93.3 in ICD-10, not the US' codes which I'm not so familiar with.) If your advocacy was specifically directed towards keeping ME as a separate diagnosis, rather than rejecting the entire IOM report, then I wouldn't have any argument with it. I also think a more specific advocacy effort would have more likelihood of success, because I can't see the govt agencies ever rejecting this report wholesale.
@ Bob You said "I can't see the govt agencies ever rejecting this report wholesale."

They don't have to reject it. The history of IoM reports on a variety of subjects is that the various governmental entities that paid for them simply IGNORE them.

Which is not to say I don't agree with you on most of your points. I do. IMO, the most important thing about the IoM report is that we can use it to insist on an increase in funding research AND get that damned CDC "toolkit" fixed asap.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK

Ember

Senior Member
Messages
2,115
I wouldn't. If it excluded ME then you have SEID if you qualify for it, not ME. I suspect you meant if ME were an exclusionary condition? I think SEID is a rebadged ME definition.
Here's how I tried to put my question to the IOM Committee:

Under its “Comparison of Existing Diagnostic Criteria,” the IOM Report states, “While all (sic) of the criteria make clear that they are describing the same illness, some vary in the terminology used to refer to the illness or to specific symptoms."[1] The AHRQ Evidence Report,[2] however, finds to the contrary:
The case definitions overlap but vary greatly in their symptom set, leading to concern that they do not all represent the same disease or identify the same cohort of patients.[7] The international ME consensus panel of experts recommends that patients meeting the International Consensus Criteria (ICC) be given the name ME, and that those meeting the criteria for CFS but not the ICC for ME be given the name CFS.[7]
The IOM Report acknowledges that patients who fulfill the ME-ICC have “more severe functional impairment and more physical, mental, and cognitive problems than those that fulfill the Fukuda definition.”[1] But it fails to report that the International Consensus Panel of experts recommends:

“Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome;[3]

“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification;[4]” and

Remove patients who satisfy the ICC from the broader category of CFS.... Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.[4]

ME and CFS are classified as mutually exclusive ICD-10-CM diagnoses. Why does the IOM definition not exclude ME?
_________
1. Institute of Medicine. Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Redefining an Illness. February 2015.

2. Smith ME Beth, Nelson, Heidi D et al. Diagnosis and Treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Evidence Report / Technology Assessment Number 219. AHRQ Publication No.15-E001-EF December 2014.

3. Carruthers BM, van de Sande MI, De Meirleir KL et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med 2011;270(4): 327-38. PMID: 21777306.

4. Carruthers BM, van de Sande MI, De Meirleir K, et al. Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners. 2012.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Do you have concrete data or a reference for this? This is something I really want to know, but don't necessarily have the wherewithal to look at hundreds of studies and see which definitions were used.
SEID is not a research definition. Its a clinical definition. As a result it would have to be modified/operationalized for SEID to be used in research. That will take time. Several years potentially. Then researchers will have to start using it. In the meantime the CCC will continue to be used. For some time after that, probably years, CCC and SEID are likely to be used side by side, just as CCC and Fukuda (with PEM) are now.

Most of the best research these days is CCC. When was the last time we saw anything good from Fukuda cohorts?

In the long term SEID is potentially a dud definition because the advancing science will make it obsolete. However this also applies to every other definition we have.

Now psych studies in the UK still use Oxford. That is likely to continue as they seem cut off from the main research. Or when they use other criteria they use operationalized versions that turn the criteria into something almost unrecognizable, like they did with the London ME criteria in the PACE trial. I think the P2P got this point right - its time for Oxford to be retired as a definition.

PS. So no, I don't have concrete data. Nobody is tracking this stuff. I put this reasoning out for commentary. If anyone has reason or evidence to think its wrong they can reply.
 

Ember

Senior Member
Messages
2,115
The IOM report is all about replacing Fukuda (the official government-sanctioned criteria) - it's not about not replacing CCC or ICC.
I think SEID is a rebadged ME definition. I am unsure if its a good one or a disaster though.
Such is the confusion surrounding the IOM Report. Why no clarity from the IOM Committee?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@Bob comment on SEID replacing Fukuda, that is the bureaucratic angle. This is about what the bureaucracy is going to do.

My comment about SEID being rebadged ME is about the scientific side of clinical practice. Its a PEM mandatory definition. We just don't know if its a good one. If this goes ahead and is widely embraced then CFS is a dead definition. Its our researchers who choose what definitions to use in studies, though I do think SEID will creep in there over time so they can maximize funding opportunity. Like it or not research funding goes in fads, and SEID may be the fad of five years from now.

Of course, all of this is moot if HHS etc. decide to ignore the IOM report. In which case they will still support Fukuda. All the existing issues from that will still plague funding. The CDC toolkit will still be unfit for purpose. We will have to wait years for yet another political opportunity.

It would then be all up to our researchers to give us a robustly demonstrated treatment or biomarker.