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    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.

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First IOM meeting scheduled - Jan 27-28

Delia

Senior Member
Messages
139
Location
Iowa
You seem to be saying that “first-tier concerns” (which I take to be those of advocates opposing the IOM study) are in disarray. This thread, as I understand it, is addressing the “second-tier concerns” of those who have chosen to engage the IOM study.

Not at all. There is complete misunderstanding here.

Ember said:
Imperfection, to my mind, shouldn't involve undermining our experts, censoring Jen Brea (our communicator par excellence) or risking the welfare of others. Lobbying to have ME patients removed from the broader category of CFS, while pressing for a name change, might be seen as “imperfection.”

Jen was not censored. In fact the opposite has happened. She was doing a great job, prior to being pressured to change her terminology.

[/Quote="Ember"] With all due respect, ME patients don't receive favourable treatment now, yet many covet that diagnosis while dismissing the cost should others unfortunately lose theirs.[/quote]

Whoever said anything about dropping ME? The goal is to get to ME.

Nobody knows what ME is. (Except advocates) The bridge to get there is the imperfect MEcfs.

To even get to a real non IoM table, or even discredit the current IoM report) we need a movement. We won't get a movement if we don't understand our own message, and our needs to get non ME or non CFS people informed.

I call it second tier in respect, not disdain.
 

Ember

Senior Member
Messages
2,115
Whoever said anything about dropping ME?
Sorry to confuse you. In mentioning the cost to others of losing their diagnosis, I was referring to the cost to CFS patients who don't meet a diagnosis of atypical ME and stand to lose their current diagnosis as a result of “'CFS'-needs-to-go” advocacy.
 

Delia

Senior Member
Messages
139
Location
Iowa
Sorry to confuse you. In mentioning the cost to others of losing their diagnosis, I was referring to the cost to CFS patients who don't meet a diagnosis of atypical ME and stand to lose their current diagnosis as a result of “'CFS'-needs-to-go” advocacy.


Oh! I see.


Well, CfS is already going to mental illness in the US medical coding starting October 2014. So...

My point on the nomenclature is actually let's use ME/CFS in the first round of raising awareness and fighting the IoM to build layperson support and build momentum. We have to have them aware and on our side.

As well, too many living with CFS don't know what's going on, or a lot don't know about ME or even the term ME/CFS. We need them, but also, I believe we should help them.


But to get back, I guess to the original point of the thread I must have derailed, but I came in when the discussion was on the name.

My position is and has been non-engagement with the IoM. This is the strategy I believe and as long as I'm not the only non-engager, all is well!

I won't draw the line at not working with the engagers of good will. Anyone who in my gut feels to me to be not in good faith, ie: individuals with too CAA of a position- I don't trust. And I won't work in conjunction with them.

This is what I mean about drawing lines. Being very careful. Our movement can have disagreement within it, despite many people's feelings that movements need full agreement. They really don't! I know! I've been in many successful ones myself, that can harbor reasonable disagreement,. As well we have history to teach us. I just happened to study successful movements in my early years of organizing and advocacy. That's why I know this.

It's all good.... As long as:

We find ways to agree to disagree on important details but I think it's safe to say we ALL oppose the IoM contract.

It's safe to say we all want to rise out of our beds and get real awareness and respect that we are dealing with serious illness(es) here!

We all want real science and Medicine and access to real supports.

That's our real message.

Our harm is in being too divisive on our respective positions. Once it gets to a point where it hurts the movement or keeps it from essential work, or Keeps important people from working together, success can't happen. The group (any group) loses before it's begun.

(This doesn't mean each side can't try and persuade each other, or discuss, please don't get me wrong, but in many ways the ship of engagement or non engagement of the IoM has sailed.)

And it's why, I feel the real complexities of this can't be dwelled upon (in a way that stumps our progress right now) until after we get to the first round. We have got to get a movement off the ground!

It won't be a perfect message for all of us, but we need the message that reaches people. And we need to move forward on that front.
 

Ember

Senior Member
Messages
2,115
Doesn't it depend on how the term 'subset' and the term "CFS" are being used?

Why challenge normal word usage when it makes more sense to demand that ME patients be removed from the broader category of CFS? That's the language that the experts use.
 
Messages
42
Keep in mind that the last name change movement that stuck (started by Rich Carson in 2008) and resulted in "ME/CFS" being used has backfired. The idea was to get the historical background and definitions of ME recognized and used. Instead, ME has been subsumed into "CFS".

I'm stating this just so people are aware of the land mines we face. While we should engage those diagnosed with "CFS" who have never heard of ME, care must be taken that media and others don't report on demonstrations or the like with "ME/CFS", thus continuing the problem.
 

Ember

Senior Member
Messages
2,115
While we should engage those diagnosed with "CFS" who have never heard of ME, care must be taken that media and others don't report on demonstrations or the like with "ME/CFS", thus continuing the problem.
The International Consensus Panel also recommends removing ME patients from the broader category of ME/CFS (as defined by the CCC): “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.”
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Hi WIllowJ

I understand it a little differently but I may have it wrong.

To me, it looks like that link to "ICD-9-CM Volume 2 Index entries containing back-references to 323.9" is actually a link to the alphabetic index of terms that are currently in use, not historical terms

ICD has two parts, the tabular listing which contains all the main terms and headings and the alphabetic index which contains additional terms. The alphabetic index is linked back to the tabular listing by code number.

Assuming I understand this correctly, when you click on that arrow, you are opening a portion of the alphabetic index and can see the rest of the terms associated with 323.9. One of those lines lists the terms "Encephalomyelitis (chronic) (granulomatous) (myalgic, benign)"

If you go to the NCHS site here, you can look at the alphabetic index for diseases for the most recent version of ICD-9-CM and will see these same terms at 323.9.

You are right that the code 323.9 is not just for ME. Its used by a number of other diseases also. This happens with other entries as well where a number of more specific terms point to a general term and all use the same code.

I will try to confirm whether I understand this correctly or not.

Of course, the point is moot if the docs are not using it.

Hi, I am not a coding expert, but it looks to me like many of the other conditions listed have other active codes (not 323.9*, or even necessarily in the 3 section at all). So I assumed the significance of "back reference" was that it meant previously. I don't know much about coding, so it's possible you're right, of course.

I have trouble using those huge pdfs at CDC, with more PDF corrections, which is why I use the unofficial sites (because they are in HTML and easier to navigate). I understand they may not match exactly because they reportedly draw on industry sources as well as DHHS sources.

Of course, you're correct that the main takeaways are that docs are not using it, and it's used by a number of other diseases also (thus, it can't be used to track the incidence or mortality of any one condition).
 

medfeb

Senior Member
Messages
491
WIllowJ

I agree - those files are a pain to deal with. The interface you pointed to is much easier to query.

The 'back reference' link appears to list the sections of the alphabetic index that contains 323.9 codes (highlighted in yellow) plus the other entries in those sections, even if the code is not 323.9. Look at the entries under 'infection' - brain and cerebral fever are 323.9 but not septic infection which has code 324.0.

That entries in that interface do appear to match the NCHS files.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
WIllowJ

I agree - those files are a pain to deal with. The interface you pointed to is much easier to query.

The 'back reference' link appears to list the sections of the alphabetic index that contains 323.9 codes (highlighted in yellow) plus the other entries in those sections, even if the code is not 323.9. Look at the entries under 'infection' - brain and cerebral fever are 323.9 but not septic infection which has code 324.0.

That entries in that interface do appear to match the NCHS files.

yes, thanks. I noticed the yellow ones, which mostly seem to be vague categories, idiopathic diseases, and variations not otherwhere classified.

323.9 itself is for encephalitis, myelitis, and encephalomyelitis not falling under any of the specified causes in the 323 chapter, some of which we might prefer to use when we know the association.
http://www.icd9data.com/2012/Volume1/320-389/320-327/323/default.htm

Of course, things will improve when we get more research. But who knows how long that will take?

Thanks for checking against official documents. :)
 

Izola

Senior Member
Messages
495
You're getting ahead of the experts. The International Consensus Panel writes, “As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”


So we M.E. prisoners get released--with what? $300 and a bus ticket home? just kidding. Wonder what the insurance companies are doing to prepare for our success.
 

Izola

Senior Member
Messages
495
Yeah, sorry about that!

One of my trainers worked with MLK in the Southern Leadership Conference (and for God's sake I can't remember his name and I've been searching through pictures and articles since October to find him) but, he trained us to "get what you can that's as close to what you need!" Get that and move the next and next.

Otherwise You risk losing everything by going for perfection and perfection alone first thing out of the ring. It may be counterintuitive to people to not go for it all from the start.

But there is a great deal of education we need to do. Or all the doors will slam shut on us.

We got the experts and the CCC agreement. That is a very good start. It's "close enough to what we need". We could even lose that to CMS if we dont understand how to organize and fight. How to focus. How to agree to disagree and still move together. How to build the support and awareness, of both unknowkedgable patients, their families and friends, the general public (all of which know nothing about ME or ICC let alone the IoM or CCC) that is absolutely critical to get what we want from public officials
:(

We do need your expertise. I can't imagine better trainers than the ones you had. I wish I could give you names. My brain is very broken. I can chart the daily decomposition.


Delia: Dr. John Davis physician, Chicago, still, I think is probably a friend. Davis' dad was president of the American Political Science Association (early '70's) Another went on to head the Southern poverty Law Center. He's the most likely, to my knowledge maybe as a trainer of trainers.The names are so "there" but yet not.
 

Izola

Senior Member
Messages
495
I. The Past Decade

I'm still wrapping my mind around the following - but perhaps it plays a part in what's to come. In regard to * more-recent evidence * mentioned above [Emphasis below added]:

" Neuroplasticity, Psychosocial Genomics, and the Biopsychosocial Paradigm in the 21st Century" (2009/10)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2933650/

"The biopsychosocial perspective is a foundation of social work theory and practice. Recent research on neuroplasticity and psychosocial genomics lends compelling support to this perspective by elucidating mechanisms through which psychosocial forces shape neurobiology..."

"...These findings are complemented by the contributions of psychosocial genomics, a field of scientific inquiry that explores the modulating effects of experience on gene expression. Findings from these new sciences provide external validation for the biopsychosocial perspective..."

"At its inception, there was scant evidence to support Engel's biopsychosocial perspective; however, scientific discoveries of the past decade have provided important new findings validating and elaborating the biopsychosocial paradigm."

"Over the past decade, two fields of empirical investigation, neuroplasticity and psychosocial genomics, have offered important findings that may lead to a paradigm shift in our conceptions of psyche and soma and the modes of their interrelationships."

"The notion that social experience can lead to changes in gene expression was voiced most prominently by Nobel laureate, Eric Kandel*, who regarded this observation as the core component of a new paradigm for psychiatry (1998)... This powerful claim, while supported by over a decade of rigorous research, has rarely been directly tested. However, advances in psychoendoneuroimmunology, the study of how mental processes affect the immune system, have clearly shown the effects of psychological and social factors on human physiological functions..."

[*Kandel did post-doc work, at least, at NIH. He became a member of the National Academy of Sciences in 1974.]

"The social work profession's historical emphasis on the social environment as the context for individual well-being is supported by research over the past decade. Neuroplasticity and psychosocial genomic research indicate that socioenvironmental forces have the potency to alter human well-being through their effects on neurobiology."

"Over the past decade neuroplasticity research has enriched the biopsychosocial perspective..."

"While tentative at present, empirical investigations of the psychosocial genomic hypothesis will likely proliferate over the next decade..."

"ELG was supported by Grant Number T32AT003378 from the National Center for Complementary and Alternative Medicine."




II. Wayne Jonas - NIH Complementary and Alternative Medicine

And from earlier notes* from the most-recent Gulf War & Health report - Treatment for CMI (2013):

"Several of the above-mentioned interventions are in the area of complementary and alternative medicine and the VA should consider coordinating future research efforts with the National Institutes of Health’s National Center for Complementary and Alternative Medicine." (p.191)

As posted earlier elsewhere, the Gulf-War-and-Health Treatment for Chronic Multisymptom Illness (2013) committee included Wayne Jonas (http://www.samueliinstitute.org/about-us/wayne-b-jonas-md) who "served as the director of the Office of Alternative Medicine at the National Institutes of Health from 1995 to 1999; before that, he was the director of the Medical Research Fellowship of the Walter Reed Army Institute of Research. He served for 24 years as an Army medical officer..." (p.199).

*http://forums.phoenixrising.me/inde...g-the-first-gulf-war.26486/page-3#post-406434



III. "The Medicine we do: Real Reform of Healthcare"*

"In February 2009, The Institute of Medicine held a summit on Integrative Medicine and the Health of the Public at the National Academy of Sciences. Six hundred key leaders and stakeholders in healthcare, including educators, scientists, community leaders, practitioners, lawmakers, policy makers, and insurance leaders, attended it. It was a broad coalition that came together with a common purpose: to change not only the way we do medicine but also the medicine we do."

"Key models advanced included implementation of healthcare teams for chronic disease..."

"Dr Wayne Jonas of the Samueli Institute presented his model for a national wellness initiative
(WIN) that provides a framework for creating a culture of health and wellness through public and private efforts across diverse sectors and industries of our society."

"The same week, Senator Kennedy’s (D-Massachusetts) Senate working group on healthcare reform held hearings on integrative and functional medicine... A number of us met afterward with Senators Harkin (D-Iowa) and Mikulski (D-Maryland) and their key healthcare advisors, who are allies in moving this agenda forward. I also met with key policy makers in the White House."

"Government agencies and departments with domains that impact health, such as... Health and Human Services..., etc, must be coordinated to create a culture of health and wellness."

"...none of our efforts will matter unless we address the true drivers of cost and chronic disease. This is a national security issue that threatens our standing in the world. As President Obama stated, 'Fixing healthcare is no longer only a moral imperative but a fiscal imperative.'"

"Focus specifi cally on developing policies and programs for lifestyle-based chronic disease prevention and management, integrative healthcare practices, and health promotion. Real healthcare reform is now possible in a perfect storm where alignment of economic, scientific, and moral imperatives provides an opportunity for us as a nation to do well by doing good through fundamentally changing the medicine we do."

-----------

For those interested, there is also a small critique of EBM - "A recent JAMA review that examined the basis for clinical practice guidelines for evidence-based medicine (EBM) found that only 11% of guidelines are based on fi rm clinical evidence (level of evidence A); most are based on "expert" opinion (level of evidence C).6 Of guidelines with good evidence (level A), only 19% are Class I recommendations (general agreement among experts that treatment is useful or effective).

*http://drhyman.com/downloads/MedicineWeDo.pdf


------------

[Edit:]

IV. "Obama to Unveil Initiative to Map the Human Brain"*

"Three government agencies will be involved: the National Institues of Health, the Defense Advanced Research Projects Agency and the National Science Foundation."

"The initiative exists as part of a vast landscape of neuroscience research supported by billions of dollars in federal money... 'The goal here is a whole new playing field, whole new ways of thinking," he said. "We are really out to catalyze a paradigm shift.'"

"The project grew out of an interdisciplinary meeting of neuroscientists and nanoscientists in London in September 2011."

*http://www.nytimes.com/2013/04/02/s...l-initiative-to-map-the-human-brain.html?_r=0


Also, and I don't have a reference on hand, but I believe Obama - of all candidates - received by far the largest donations from the insurance industry.

Ren: You simply must trim that beard.
The brain may have been mapped but golly, look at the terrain on mine. Brains are mapped but not mapped with the genomics footnotes.
Did you know that Eric Kandel is all hooked up with third degree Evidence Based Medicine. They're huddled in mass trying to work out "psychiatry" with modern scientific theories, (really just theories) to bring in a new era of psychiatry. This new era includes neurasthenia with all the "soft" signs of ME/cfs. Its all so very similar to that very neurasthenia invented in the early 1900's by doctors as their way of saying "Women! Weak and lily-livered. This is no disease." That's so brilliant!

They also bring up genomics, birthed full grown in this new age . . . Ducks, I hear ducks. . . Iz
 

Izola

Senior Member
Messages
495
When you ask rhetorically, “why should "CFS" be left to stand since it would be just Idiopathic CF at that point,” Justin, you're presenting your lay opinion as if it were fact. The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies:”


In choosing to battle over names, you seem to ignore the benefit that a CFS diagnosis (versus a CF diagnosis) may confer, as well as the fact that the IOM committee has already been charged with considering just such a change.

After all that the people branded with CFS had to go through to get here today, they deserve a little more medical attention, if, in fact, they are getting any at all. I don't know how strongly the two are tied, but if they are, give them the medical attention.
 

Izola

Senior Member
Messages
495
Doesn't it depend on how the term 'subset' and the term "CFS" are being used?

Here's my take. Sorry its long. Feel free to let me know where I am missing the point. I'd appreciate the feedback...

As a lay person, I could correctly state that multiple sclerosis "is a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome." In this case, the term subset is being used in a common way to mean 'portion of' or 'some of'. The statement would be true - although potentially easy to misinterpret - because some 30% of MS patients have been shown to be given a diagnosis of CFS before they get a diagnosis of MS.

But the IOM is creating formal clinical diagnostic criteria for a disease/clinical entity. In that context I understand that the term subgroup has a stricter meaning that implies a relatedness to a larger group. For Multiple Sclerosis, one reference describes four subgroups based on the course of the disease - i.e. relapsing-remitting, progressive, etc. But they all have Multiple Sclerosis. Maybe as science progresses, they will determine that these are actually different diseases with very different pathways but for now they are considered subgroups of the same disease.

In the case of multiple sclerosis, these subgroups are related by clinical observations and diagnostic tests - that is, there is some rationale, scientific basis for grouping these four subgroups together as a clinical entity. Guessing they first started with the clinical entity and diagnostics and then flushed out the various subgroups.

My guess is that Jen is just speaking about a portion of patients that have the disease characterized by CCC/ME-ICC and not indicating that "ME" should be a formal subgroup of "CFS".

But IOM is planning on establishing formal subgroups so I think we need to first understand what clinical entity these diagnostic criteria are intended to describe. The IOM statement of work has included "CFS" but what does that mean? All the various conditions that meet Fukuda or Oxford? If so, the clinical entity is "6 months of debilitating fatigue that is medically unexplained, not relieved by rest and may have a variety of different causes including psychiatric causes" (my paraphrase).

So the first question is whether "CFS" - as defined above - is a valid clinical entity for which diagnostic criteria should be established? Have these various conditions ever been shown to have a common pathology underlying them? Are criteria of "Chronic Fatigue" + "Medically Unexplained" a rational foundation for a clinical entity? This is not an issue of the name "ME" versus "CFS" but whether the various criteria and conditions aggregated under the "CFS" label constitute a valid clinical entity to begin with. To the point that I think Delia made, if "CFS" is not a valid clinical entity to begin with, then how can there be legitimate subgroups?

I ran into these quotes recently that relate to this
  • From Steven Straus of the NIH in a 1996 editorial praising the Report of the joint Royal Colleges on CFS
    • "Neither the American [Fukuda] nor the Oxford criteria assume the [chronic fatigue] syndrome to be a single nosological entity."
  • From Simon Wessely in a summary of the report of the joint Royal Colleges on CFS
    • "Chronic Fatigue Syndrome (CFS) is not a single diagnostic entity."
And then there's CDC final decision to reclassify CFS to the "Signs and Symptoms" chapter of the ICD-10-CM where it has been defined to be a subtype of chronic fatigue. As a result, "CFS" is no longer listed in one of the disease chapters.

So what clinical entity is IOM developing diagnostic criteria for.


Article on misdiagnosis of MS patients - http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=17900&site=research

Straus and Wessely certainly aren't scientific dynamos. I understand your question. Its the answer that shape shifts and moves about the room.
 

Izola

Senior Member
Messages
495
Are those CFS (Fukuda) patients who don't meet your definition of atypical ME to be left "in the lurch?"

I vote we keep those who have been with us on the long haul. But, no matter how we bicker and dispute, its not going to be in our hands unless we make it be in our hands. And if we do that there we go again, the less powerless, advocating for the powerless. Right now we have our experts, our advocates and a wee bit of sympathy. Pathetic. That's above where I've been for almost 30 years. But I don't parade it. We're in this together. That feels good after being a "reject" for so long.