First IOM meeting scheduled - Jan 27-28

[taniaaust1]

If we instead say that "CFS" should stick around and be redefined as Idiopathic CF, eventually all of this good stuff will happen. But before it can happen, there will be many more dark years of abuse of both ME and "CFS" (i.e. Idiopathic CF) patients caused by the usual suspects continuing to intentionally create confusion by conflating ME, "CFS" and ICF, just like they have done so far.

I see an issue with that as there is a group of patients out there who do not have ME nor do they have just ICF.. they fit somewhere between. If ME/CFS is going to be broken down into just ME and just ICF.. well what happens to that other big lot of patients who do have more then then ICF. These patients need some label. (maybe thou once more is known about ME many could be found to have a mild form of it??)

 

[caledonia]

I have been trying to defer to ME advocates, but as you can see, I am quite bitter and hurt this weekend, as the whole thing has come home to seriously harm me, after the first few months of making progress with my doctor, my family, and in garnering some home help and support. And just compassion and being believed. All due to Jen Brea and Ryan Prior. Had they not seen Ryan's video, using ME/CFS they would not have made the jump to pure ME of Jen's video, but she explained it well (before the change) and now I feel we've completely damaged ourselves by stubbornness.

So let's have her change it back.

These two documentaries should be part of our advocacy message. When they hit, they will create a lot of awareness. They need to be saying the right things.

 

[Ember]

They need to be saying the right things.

In their video, Jen and Kira say, “Myalgic encephalomyelitis: it's a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome” (1:20). What could be wrong with that?

 

[medfeb]

In their video, Jen and Kira say, “Myalgic encephalomyelitis: it's a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome” (1:20). What could be wrong with that?

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

 

[alex3619]

As biomarkers are developed, validated and used, I expect to see all this diagnostic stuff change dramatically. ME might become two or more diseases, or it may be found that many with CFS actually have mild ME. We simply don't know. In part that is why I think the IOM contract is a bad idea. Diagnostic criteria will change soon if the immunological and physiological research continues with breakthroughs like we have seen recently.

So its ideal that we stay with the best research diagnosis, the ICC ME for now, though due to political reasons, and the fact the CCC is well understood now and widely used, the CCC is a better political choice.

One thing I do expect to see though is CFS will fracture into a great many different diseases, and psychobabble will be disgraced yet again for the umpteenth time.

This IOM contract is not A disaster. Its like a layer cake of disasters, layer upon layer. It could work out if done right, but the odds are stacked against it.

 

[justinreilly]

I see an issue with that as there is a group of patients out there who do not have ME nor do they have just ICF.. they fit somewhere between. If ME/CFS is going to be broken down into just ME and just ICF.. well what happens to that other big lot of patients who do have more then then ICF. These patients need some label. (maybe thou once more is known about ME many could be found to have a mild form of it??)

If they were 'basically' an ME patient but differed in some way, they would be called pw 'atypical ME.' I have been saying this for a couple of years. I think the idea came from a good ME publication, maybe ME-ICC, but I don't have time to check now. Maybe Ember knows better.

There are some diseases that have lots of atypical presentations, including MS. They are called pw "atypical MS" (some of these actually may have undiagnosed ME or 'atypical ME', or some yet to be recognized autoimmune disease).

Name-wise 'atypical ME' is basically ideal because it indicates fairly precisely and accurately what the condition is: it is an unusual presentation of the serious neuro-immune disease ME. Calling these patients pw"CFS" will be bad for them: look how bad this name has been for us, and it will be even worse for them because the meaning of "CFS" will be different and perhaps even more vague than before, teeing up the perfect situation for Wessely and co. to seize on and amplify the confusion and persecute these patients into the ground.

The Wessley school has been like a terrier on "CFS" and there is absolutely no reason to think that will change, in fact Wessley will have an easier time hurting these people and even more incentive to do so as the pressure mounts against him (bc he will have even more incentive to paint "CFS" as nebulous, wo biomarkers and psychiatric, in order to fend off his critics).


Think of "CFS" as a 'brand-name.'

Coca-cola has probably spent $Billions just on 'branding' (i.e. building up 'goodwill' for the brand) Coke, and now just the words 'Coke' and 'Coca-cola' alone are worth $billions because of all the branding goodwill the company has created. The company, of course, would never ever change the name of it's soda because that would be throwing $billions down the drain.

The Wessley School, CDC and NIH have likewise spent decades of hardwork and many $Millions 'branding' the term "CFS" (i.e. building up 'bad will' against the term "CFS"). Just like the Coca-cola company, they would never, ever give up the term "CFS" because that would be throwing away $Millions and whole careers devoted to building up bad-will against "CFS" so they could use it as the most effective weapon against patients.

Taking the beyond-tainted "CFS" term away from Wessely is his worst nightmare. He has (along with others) worked so long to build up the "bad will" against CDC's "brand-name" "CFS", much of his painstaking work over the years will be destroyed instantly. He will have to start fresh with ME and ICF.

Conversely, "CFS" is an albatross around our neck because of all the built-in bad will (plus the inherent negative connotations of CF) against "CFS." Thus we must throw "CFS" away. We have everything to gain and nothing to lose.

We will not leave atypical ME patients in the lurch. We are all in this together. We will all fight for atypical ME patients to get bona fide research!

Whatever we do we have to get rid of the term "CFS", it is poison to everything it touches. Like Hillary Johnson says "CFS is my slave name."

 

[Nielk]

Has anyone here been asked to speak at the meeting on January 27?

 

[Nielk]

Ember said:
In their video, Jen and Kira say, “Myalgic encephalomyelitis: it's a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome” (1:20). What could be wrong with that?

I wonder how one currently gets an official diagnosis of Myalgic Encephalomyelitis in the U.S.?

 

[Andrew]

Has anyone here been asked to speak at the meeting on January 27?

http://iom.edu/Activities/Disease/D...ampaign=12.26.13+MECFS&utm_content=&utm_term=

 

[justinreilly]

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."

I think you are right on this.

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.

You're saying "final decision" here, So do you mean that after the meeting late last year (2012) was it, CMS made a final decision to go with CDC's recommendation of putting "CFS" in the Signs and Symptoms chapter of ICD 10-CM and to totally ignore our recommendations? If so, I missed this decision. and if so, we are screwed.

 

[medfeb]

I wonder how one currently gets an official diagnosis of Myalgic Encephalomyelitis in the U.S.?

Good question.

The National Center for Health Statistics (NCHS) is the part of CDC with responsibility for ICD. They hold meetings a few times a year to discuss modifications to ICD and these meetings are attended by a few hundred people whose jon involves the use of ICD in medical records. At one meeting, the U.S. ICD administrator asked if anyone had seen ME used in medical records and no one raised their hands.

But I don't know why it's not used. Is there some barrier to doctors giving an ME diagnosis (for instance, would insurance companies want CFS used because they have processes for that) or is it just not customary. You'd have to ask a doc

 

[justinreilly]

Those opposing the IOM study demand the interim adoption of the hybrid CCC (ME/CFS) definition now. How will those engaging the IOM study, set to consider recent scientific advances, address the scope of disease without demanding that ME patients be removed from the broader category of CFS?

Ember, I agree with medfeb's statement:

Ember, I don't know of any patient or patient advocate who wants to see the disease described by the CCC/ME-ICC continue to be considered part of the broader set of fatiguing conditions that meet various CFS criteria. The scope of disease is important to all of us, regardless of the tactics each of us has taken toward the IOM, and I think we all need to continue to demand that it be separated out.

Does that answer your question? Just checking, because this is a complicated and important topic, so I want to squarely and fully answer your questions.

 

[medfeb]

You're saying "final decision" here, So do you mean that after the meeting late last year (2012) was it, CMS made a final decision to go with CDC's recommendation of putting "CFS" in the Signs and Symptoms chapter of ICD 10-CM and to totally ignore our recommendations? If so, I missed this decision. and if so, we are screwed.

HHS had reclassified CFS, in the ICD-10-CM, from the neurological diseases chapter to the 'Signs and Symptoms" chapter as a subtype of chronic fatigue back in 2003 or so, after having originally said they were going to comply with WHO and put it in the neurological diseases chapter.

There were multiple CFSAC recommendations and 2 or 3 patient organization requests to get it moved back to the neurological chapter to be in compliance with WHO. HHS has refused to consider moving it back until after ICD-10-CM rolls out in 2014. The earliest it can be moved back is October 2015. So when ICD-10-CM goes live in 10 months, CFS will be in the "Signs and Symptoms" chapter.

But ME still exists in the neurological chapter.

The IOM is going to have to grapple with the relationship between a disease in the neurological chapter and a symptom in the "Signs and Symptoms" chapter.

 

[justinreilly]

HHS has refused to consider moving it back until after ICD-10-CM rolls out in 2014. The earliest it can be moved back is October 2015. So when ICD-10-CM goes live in 10 months, CFS will be in the "Signs and Symptoms" chapter.

So this was their decision in response to the meeting where they addressed this topic in late 2012?

 

[WillowJ]

Good question.

The National Center for Health Statistics (NCHS) is the part of CDC with responsibility for ICD. They hold meetings a few times a year to discuss modifications to ICD and these meetings are attended by a few hundred people whose jon involves the use of ICD in medical records. At one meeting, the U.S. ICD administrator asked if anyone had seen ME used in medical records and no one raised their hands.

But I don't know why it's not used. Is there some barrier to doctors giving an ME diagnosis (for instance, would insurance companies want CFS used because they have processes for that) or is it just not customary. You'd have to ask a doc

There is no ICD-CM diagnostic code which is now named ME. Doctors cannot diagnose anything without a proper code.

There will be no reimbursement for any treatment without a proper code, and I don't think it's even legal, although i am not 100% sure of that.

There is a code which was used for ME in the past, but it is now named as a vague kind of encephalitis (not named as a specific disease).

While there is at least one doc who recommends using it for ME patients, I imagine it's used by other (non-ME) doctors for other things. (see the ICD-09-CM section here; find 323.9 Unspecified causes of encephalitis, myelitis, and encephalomyelitis here) The list of diseases which have used this code in the past is lengthy (click the link for index back references), but does include ME.

 

[Ember]

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?

If they were 'basically' an ME patient but differed in some way, they would be called pw 'atypical ME.' I have been saying this for a couple of years. I think the idea came from a good ME publication, maybe ME-ICC, but I don't have time to check now.

CFS (Fukuda) is a research definition with its own body of evidence. Perhaps its construct validity will be addressed by the CDC multi-site clinical assessment of CFS and/or the IOM study in collaboration with the NIH EbMW.

The International Consensus Panel limited its scope to the criteria of ME and their application. But the panel accompanied its recommendation that ME patients be removed from the broader category of CFS with the suggestion that other patient sets would be removed from the broad CFS/CF category as they are identified and supported by research: “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.”

CFS may turn out to be a composite of many different diseases, and you, Justin, may want it to be re-branded as atypical ME. But you seem to be relying on those whom you paint as “scientists and doctors wimping out” for your rationale: “I think the idea came from a good ME publication, maybe ME-ICC.”

 

[Ember]

Ember, I agree with medfeb's statement.... Does that answer your question? Just checking, because this is a complicated and important topic, so I want to squarely and fully answer your questions.

Thanks, Justin. I already responded to that statement here: “I didn't mean to suggest that the scope of disease isn't important to all of us. But I haven't seen any statement by the experts recommending that ME/CFS patients be removed from the broader category of CFS.”

So my questions remain: How will those engaging the IOM study, set to consider recent scientific advances, address the scope of disease without demanding that ME patients be removed from the broader category of CFS? Do they plan to endorse the ICC while simultaneously promoting a position that conflicts with the one articulated by the International Consensus Panel? Or do they plan to reject the ICC?

 

[taniaaust1]

The Wessley school has been like a terrier on "CFS" and there is absolutely no reason to think that will change, in fact Wessley will have an easier time hurting these people and even more incentive to do so as the pressure mounts against him (bc he will have even more incentive to paint "CFS" as nebulous, wo biomarkers and psychiatric, in order to fend off his critics).

The issue goes way beyond the horrible name CFS eg in England its often called ME.. and we know things are terrible in England. Simply changing name will never fix the issue we have.

 

[medfeb]

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.

 

[justinreilly]

CFS may turn out to be a composite of many different diseases, and you, Justin, may want it to be re-branded as atypical ME. But you seem to be relying on those whom you paint as “scientists and doctors wimping out” for your rationale: “I think the idea came from a good ME publication, maybe ME-ICC.”

That's not so, but it wasn't clear from what I wrote because I wasn't specific enough.

I don't think that Fukuda without PEM should be considered 'atypical ME' since, imo, and I think there is consensus on this, the sine qua non of ME is PEM.

So, by 'atypical ME' I meant an illness defined at this point by (in the future this would be subject to change with the recognition of biomarkers) PEM (not caused by another disease recognized to cause PEM such as recognized mitochondrial diseases) with probably fatigue, but no other symptoms, required.