Opposition to the Coalition 4 ME/CFS Proposal

eric_s said:

I just read an email i got from the IMEA with their position on the coding issue and their proposal. I think you can read it on their website.

While i have had some arguments with people leading the IMEA or close to the IMEA in the past i like their position. They propose to have 3 separate codes under G93.3. One for PVFS, one for ME, and one for CFS.

Click to expand...

I haven't looked at their proposals, but that seems like quite a sensible option to me as well.

Angela Kennedy said:

These are related to research findings using CFS cohorts, the various criteria like the CCC and ICC and how these may be under attack by the drive to separate CFS from ME at this stage, and yes, the patients left to rot in either an R category or the F48 category (where Wessely wants you all with neurasthenia- yes he has been working for that), in addition to Suzy's comments.

Click to expand...

If you have any neuro-immune disease you are left to rot. There seems to be this perspective that if one is categorized in the right category then things are wonderful. As I no longer have health insurance, it makes no difference to me where I am categorized. The only thing that matters is proper research cohorts so that future progress can be made. I struggle to see how conflating tiredness and 4 symptoms (ie Wessley/Reeves) with ME (ie ICC) is going to help research going forward. And I would love to know what miraculous treatments and care people are getting under which categories.

Bob said:

Yes, I see what you mean. It doesn't quite seem right that people outside the USA are trying to tell people within the USA how their lives should be run. Especially as people outside the USA might not have a full picture of the political, medical and personal situations within the USA.

But unfortunately, everything that happens in the USA affects the rest of us in a massive way because the rest of the world tends to follow what the USA does. And the bulk of the research goes on within the USA. There has been no biomedical research funding coming from the UK government over the past few years for example.

What's the saying?
"America sneezes and the world catches a cold."

Click to expand...

So true, Bob. And for that reason I rarely object to the international community having some say in US policies. However, in this case, the ICD placement the US is using is behind the current international position. We're trying to catch up, here.

It's a funny situation here in the UK, SickofCFS and that is why I was curious to know how people in the USA would be affected by the change to the ICD codes. It seems that because your system uses the ICD codes to determine your course of treatment things are very different for you.

Although our government acknowledges that ME and CFS are classified by the WHO in the Neurology section (and CFS is just in the index right now) we are not treated as Neurology patients in the national health system. Many Neurologists shun us and refuse to see us or treat us with disdain and neglect.

Patients with ME and CFS (of any criteria) are treated in seen in fatigue clinics and often as quasi or actual psychiatric patients or under the control of a group who still believe that this is a psychiatric or a lifestyle condition.

Few hospitals and local health authorities use the ICD for treating and classifying patients. One NHS hospital I am seen at does classify me as G93.3 but does that for all their ME, CFS and CF patients regardless of the criteria used. So my clinic also sees patients who have been diagnosed with CFS using the Oxford criteria and considers these patients to be exactly the same as ones with ME as per Ramsay from before CFS. They have a section for "ME and CFS" at that hopsital that uses CBT and GET only and claim a remarkable response from this treatment for G93.3 patients.

We have no access under the NHS here to useful immunological investigations or treatments or Neurologists who believe that ME and CFS are part of their job. It's what we call a "post code lottery" with some patients able to see appropriate NHS doctors but most others without an Immunologist, Neurologist or any specialist care for testing and treatment that you could get in the USA or from a private doctor.

We have something called the "NICE guidelines" in the UK into diagnosis and treatment that doesn't use ICD codes. Most hospitals I have been seen at don't use ICD codes and my insurance company doesn't use ICD codes.

This may be why people here are finding the arguments hard to understand and want to comment so voraciously. We should be learning more about how the code changes will work for you. Thta's why I have been asking USA patients to comment on the pros and cons.

floydguy said:

If you have any neuro-immune disease you are left to rot. There seems to be this perspective that if one is categorized in the right category then things are wonderful. As I no longer have health insurance, it makes no difference to me where I am categorized. The only thing that matters is proper research cohorts so that future progress can be made. I struggle to see how conflating tiredness and 4 symptoms (ie Wessley/Reeves) with ME (ie ICC) is going to help research going forward. And I would love to know what miraculous treatments and care people are getting under which categories.

Click to expand...

So it looks like we agree that ME research should be carried out using the ICC?

The only disagreement seems to be the short term process of how we go about getting to that situation.

If CFS is recategorised as neurological, but not merged with ME, then that doesn't affect either ME research or ME cohorts. The ICC can still be used for ME research.


The ICC states that there is an overlap between CFS and ME, and that the 'CFS' name should be dropped in favour of the 'ME' name.

So, floydguy, it seems that your approach conflicts with the ICC.


This is getting very confusing.

ukxmrv said:

It's a funny situation here in the UK, SickofCFS and that is why I was curious to know how people in the USA would be affected by the change to the ICD codes. It seems that because your system uses the ICD codes to determine your course of treatment things are very different for you.

Although our government acknowledges that ME and CFS are classified by the WHO in the Neurology section (and CFS is just in the index right now) we are not treated as Neurology patients in the national health system. Many Neurologists shun us and refuse to see us or treat us with disdain and neglect.

Patients with ME and CFS (of any criteria) are treated in seen in fatigue clinics and often as quasi or actual psychiatric patients or under the control of a group who still believe that this is a psychiatric or a lifestyle condition.

Few hospitals and local health authorities use the ICD for treating and classifying patients. One NHS hospital I am seen at does classify me as G93.3 but does that for all their ME, CFS and CF patients regardless of the criteria used. So my clinic also sees patients who have been diagnosed with CFS using the Oxford criteria and considers these patients to be exactly the same as ones with ME as per Ramsay from before CFS. They have a section for "ME and CFS" at that hopsital that uses CBT and GET only and claim a remarkable response from this treatment for G93.3 patients.

We have no access under the NHS here to useful immunological investigations or treatments or Neurologists who believe that ME and CFS are part of their job. It's what we call a "post code lottery" with some patients able to see appropriate NHS doctors but most others without an Immunologist, Neurologist or any specialist care for testing and treatment that you could get in the USA or from a private doctor.

We have something called the "NICE guidelines" in the UK into diagnosis and treatment that doesn't use ICD codes. Most hospitals I have been seen at don't use ICD codes and my insurance company doesn't use ICD codes.

This may be why people here are finding the arguments hard to understand and want to comment so voraciously. We should be learning more about how the code changes will work for you. Thta's why I have been asking USA patients to comment on the pros and cons.

Click to expand...

Yes, I'm also very interested in how the ICD changes will directly affect USA citizens, especially with regards to insurance claims and medical treatment.

hope

I am on vacation and have limited Internet access. Spent an hour here. So my post will be brief as the beach is calling. That's why you haven't seen me.

ME-ICC asserts the new criteria by referring to CFS research. Therefore, clearly, it is saying those studies, using Fukuda patients, are the disease they say should be called "ME." Notice, the Fukuda patient studies are the basis for the proposed ME criteria. If you say Fukuda patients are different then ME, then there is no basis for a new ME criteria and the whole point of ME-ICC is moot. As said, ME already exists. But to assert a better name and better criteria, the patients it uses to show the abnormalities are the Fukuda CFS patients. Therefore, the ME-ICC says it is the same illness. Take away that CFS research as not applying to ME patients and you have to throw out the ME-ICC.

The problem with CFS in research is not as great with Fukuda but in the Reeves and Oxford and NICE criteria. And that is what ME-ICC says needs to be weeded out in research studies into "it." But, Fukuda is now obsolete as it does not reflect what is now known about the illness. And that is what ME-ICC asserts, a new criteria.

Now, it does assert that Reeves criteria people should be removed. And, under the coalition's proposal, "chronic fatigue" will still remain. People with chronic fatigue who do not have CFS or ME or PVFS will still get the code of the "they're tired and we don't know what it is / signs and symptoms, ill-defined condition." The proposal does not do away with that code, it only removes CFS patients from that code, as research has now shown that Fukuda CFS patients have neurological abnormalities. (See the coalition's proposal for the references to studies that show that.)

One of the committee members commented that the same was done with pain. It used to be unexplained pain was put under a symptom code. But, now, research has shown some pain conditions are now seen as neurological and they moved it to the neurological category. Now, unexplained pain still remains, but the pain conditions that are now known as neurological is now listed under nervous system diseases.

It is true that ICD-10 has CFS as an index, with reference back to ME in G93.3. But, the fact that it is not tabular in ICD-10 is why the US ICD-10-CM put it in the tabular. But instead of following the ICD-10, they put it in the R code. In other words, they will put it somewhere in the tabular as 1 million Americans (according to the government agencies that physicians in US follow) have CFS. "Data" is tied to it, according to the committee members, so it will have to have a code. It can't just be a footnote somewhere in the U.S. So, they put it into the wrong code compared to ICD-10 and the rest of the world. The category that is not in harmony with the 4,000 + studies that show this (CFS) is a biological illness, many of them showing nervous system dysfunction. Clearly, this sets up people in the US to end up in the psychological category as the DSM is creating a new illness that is too broad.

Also, I don't know if most people realize this, but in research, as Lenny Jason has pointed out, about 30% of people included in CFS research actually have psychological / psychiatric disorder. (Sorry, I don't remember if his point is the Reeves criteria or Fukuda. I think it was Reeves. But, conceivably, of course, Fukuda could include people with psychological / psychiatric disorder.) But, on main street at the local doc's office, it is much more common for people with CFS (or ME) to be misdiagnosed as having depression. It is the opposite at the physician's office as it is in research. Someone comes in saying "I'm tired... I can't think straight.... I have trouble getting up in the morning..... I ache" and they are told, "Here, take these anti-depressants. You have depression. Reduce your stress. Make some changes. Get a new hair do. Start exercising. In a couple of months, you'll feel much better." This was portrayed in a "Golden Girls" episode. Doctors misdiagnose with depression because that has a treatment (anti-depressants) and it can put much of the responsibility back on the patient.

So, while in research, CFS is capturing some depressed people, in diagnosing in clinics, more often, CFS people are being misdiagnosed as having depression and getting wrong treatments. Moving CFS to neurological category will help to make that distinction both in research and in diagnosing, separating depression from CFS. And, this is in harmony with the research that shows the abnormalities in the brains of people with CFS.

Husband is waiting now. Got to go.

Tina

Bob said:

So it looks like we agree that ME research should be carried out using the ICC?

The only disagreement seems to be the short term process of how we go about getting to that situation.

If CFS is recategorised as neurological, but not merged with ME, then that doesn't affect either ME research or ME cohorts. The ICC can still be used for ME research.


The ICC states that there is an overlap between CFS and ME, and that the 'CFS' name should be dropped in favour of the 'ME' name.

So, floydguy, it seems that your approach conflicts with the ICC.


This is getting very confusing.

Click to expand...

The ICC say this in the very first sentence:

"Myalgic encephalomyelitis (ME), also referred to in
the literature as chronic fatigue syndrome (CFS), is a
complex disease involving profound dysregulation of
the central nervous system (CNS) [13] and immune
system [48], dysfunction of cellular energy metabolism
and ion transport [911] and cardiovascular
abnormalities [1214]."

Sickofcfs said:

The simple answer is: billing codes are based on ICD-9-CM, so every time we see a doctor, a diagnosis code is given for whatever the doctor felt s/he addressed in that appointment. That's in our medical record. In most (maybe all cases) insurance companies, including HMOs associate payment with the diagnosis code. Payment can be denied for any treatment the insurance company can claim is not consistent with the ICD-9-CM diagnosis code.

This question is answered at http://coalition4mecfs.org/ICDFAQ.html, while it's best to read the entire page, I include some sections here to spark your interest.




[my bolding]

Click to expand...

My take is that if somebody is seeing a knowledgeable/decent MD that person won't use a CFS code because they know it's the kiss of death for their patient. Ones who are trying to provide good care and protect their patients will use another code. If your MD has given you a CFS code, they are most likely are not your friend and not working in your interest.

Sickofcfs said:

Correct me if I'm wrong, but aren't we talking about the ICD-10-CM, which is unique to the US, not the ICD-10 which is the WHO document used internationally?

Click to expand...

True, but the US are not the only nation with a separate coding system for billing or other purposes, and you might want to learn from the experience of others. We have seen the effect of the coalition's proposal. If CFS is classified under the same code as ME, the consequence will be that neither group of patients will receive this code. Instead, most patients of both groups will be coded with 'unexplained fatigue', 'somatisation', 'no illness' etc. Whereas before, more ME patients got the correct code.

Guido den Broeder said:

True, but the US are not the only nation with a separate coding system for billing or other purposes, and you might want to learn from the experience of others. We have seen the effect of the coalition's proposal. If CFS is classified under the same code as ME, the consequence will be that neither group of patients will receive this code. Instead, most patients of both groups will be coded with 'unexplained fatigue', 'somatisation', 'no illness' etc. Whereas before, more ME patients got the correct code.

Click to expand...

Surely if both CFS and ME are coded as neurological, then all CFS and ME patients will be given a neurological classification?
Even in the UK, the government agrees that 'CFS/ME' is a neurological disease, even if they don't believe it.

Unfortunately, it does not work that way.

A doctor sees a non-ME patient with a diagnosis of CFS, looks at the patient's medical data and at the codebook, with ME and CFS listed together, and says: "No way this is neurological, I'll use another code instead."

Next time, that same doctor sees an ME patient and remembers what he did last time, instead of considering that this time it's different.

Guido den Broeder said:

Unfortunately, it does not work that way.

A doctor sees a non-ME patient with a diagnosis of CFS, looks at the patient's medical data and at the codebook, with ME and CFS listed together, and says: "No way this is neurological, I'll use another code instead."

Next time, that same doctor sees an ME patient and remembers what he did last time, instead of considering that this time it's different.

Click to expand...

I'm sorry to hear that's how it works for you.
That's not how it works in the UK.
Everybody using the NHS gets a diagnosis of "CFS/ME", which is classified as neurological.

Has this been confirmed in any way? Because people used to think the same here in The Netherlands, too, until it was finally investigated. It turned out that only 1 in 50 ME and CFS patients received the intended UWV code (the social benefits institute).

Bob,

You missed the CFS patients who are still being diagnosed with Chronic Fatigue and other non-neurological labels. Every week we have patients in the UK being diagnosed with somatisation disorders even by Neurologists.

Although the UK govenment does say that it recognises ME and CFS as being Neurological disease there are plenty of doctors, clinics, insurance companies who don't.

We could argue that the UK Govt is only paying lipservice to the whole neurological disease agreement. One patient has had a recent correspondence battle with the NHS choices website which refuses to accept the Neurological classification.

Guido,

There's not much to check here as few hospitals, PCT's or Govenment Departments collect data on patients using ICD codes.

My GP doesn't, My PCT and SHA (local NHS services, insurance company or Govt departments. Some do for instance one hospital I am seen at.

The Department of Health and DWP use READ codes but hardly anyone collects data on CFS (some DWP benefits do). They don't use it to commission services or determine what treatment we get.

Mary Dimmock has added a detailed post on the other thread here at Post #40

Article Coalition4ME/CFSPushes For CFS Be Classified as Neurological Disorder Before Governmental Body

Mary says...

I wanted to give a little additional information on each of the options in terms of what was in the proposal, what I presented at the meeting on Sept 14, and the followup discussions since. There are basically 4 options for pointing CFS to G93.3 - 3 are essentially what Bob has listed and the fourth was the counterproposal that I presented at the meeting in response to Option 2. All 4 options were presented and discussed at the IACFSME meeting.

A few points that go across options...

Click to expand...

Full post here

This is a list of how the various proposals would look in their final form, based on the info that Suzy kindly provided.

Thanks to Suzy's for all her work... This is all her work really... I just put it together in final form.

There seem to be some inconsistencies, in the IMEA section, that are as a result of apparent inconsistencies in the IMEA's proposals themselves.

I think the following is how each proposal would look in it's final form, based on the proposals (including the inconsistencies)...

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

Existing latest ICD-10-CM draft:

G93 Other disorders of brain

G93.3 Postviral fatigue syndrome




R53 Malaise and fatigue

R53.8 Other malaise and fatigue

R53.82 Chronic fatigue, unspecified


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


Option 1 (proposed by Coalition 4 ME/CFS):

G93 Other disorders of brain

G93.3 Postviral fatigue syndrome




R53 Malaise and fatigue

R53.8 Other Malaise and fatigue

R53.82 Chronic fatigue, unspecified




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


Option 2 (proposed by NCHS):

G93 Other disorders of brain

G93.3 Postviral and other chronic fatigue syndromes

G93.31 Postviral fatigue syndrome


G93.32 Chronic fatigue syndrome




R53 Malaise and fatigue

R53.8 Other malaise and fatigue

R53.82 Chronic fatigue, unspecified




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


ICD-10-CM TABULAR PROPOSED CHANGES - from the International ME Association:

G93 Other disorders of brain

G93.3 Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms.

G93.31 Myalgic encephalomyelitis

G93.32 Postviral fatigue syndrome

G93.33 Chronic fatigue syndrome




R53 Malaise and fatigue

R53.8 Other malaise and fatigue

R53.82 Chronic fatigue, unspecified




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

CDC ICD-9-CM site meeting materials and audio

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

[...]


Partial Freeze of Revisions to ICD-9-CM and ICD-10-CM/PCS

October 1, 2011 is the last major update of ICD-9-CM. Any further revisions to ICD-9-CM will only be for a new disease and/or a procedure representing new technology. Revisions will be posted on this website as addenda (revisions to procedures are posted on the CMS website).

After October 1, 2011 there will be no further release of ICD-9-CM on CD-ROM.

October 1, 2011 is the last major update of ICD-10-CM/PCS until October 1, 2014.

Between October 1, 2011 and October 1, 2014 revisions to ICD-10-CM/PCS will be for new diseases/new technology procedures, and any minor revisions to correct reported errors in these classifications.

Regular (at least annual) updates to ICD-10-CM/PCS will resume on October 1, 2014.

ICD-10-CM/PCS, on CD-ROM will be released on October 1, 2012.

The partial freeze was announced at the ICD-9-CM Coordination and Maintenance Committee meeting on September 15-16, 2010. See CMS website for more information.

[...]


Summary and Proposals

Meeting September 14, 2011

Summary [PDF - 31 KB] http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

Proposal [PDF - 140 KB] Note: This document was re-posted, if you downloaded the previous document you will need to download this updated document.

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

Audio of Meeting http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

Deadline for receipt of comments: November 18, 2011


-----------

ETA: Just an alert for those on slow connections, the audio is a 23.7MB Zip file.

Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revisions

Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revisions:

In the coalitions' proposal (Option 1 from the NCHS meeting summary report),
ME was not included. Was this intentional or inadvertent? Some have said
that it was because there were no changes to ME, but seems it would still be
included in the final copy. Are you concerned about this or certain that it
will be included?

The proposal asked for an expedited review and implementation of proposed
changes. What does this mean for the date deadlines given for the submission
of public comments? Would this kick it back to the earlier date listed on
the timeline?

What is ICD-10-CM/PCS? What are code freezes and what effect if any would it
have on this proposal or cut off dates for comments or implementation?

There have been references to a coalition steering committee. I see 3 patients
listed as representatives. Who are members of the steering committee? Are there any
scientists or drs on the steering committee or any who were involved in the
formulation of this proposal? What scientists or professionals support their
proposal as they have stated.

Does the CFIDS Association of America support this proposal?

(I apologize if these things have been answered or discussed and I missed it,
but one messageboard discussion had over 6000 views and nearly 1000
replies. This is obviously a topic of concern and interest and just want to
clarify so that we have correct information.)

Thanks,

Jill

Jill McLaughlin said:

Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revisions:

In the coalitions' proposal (Option 1 from the NCHS meeting summary report),
ME was not included. Was this intentional or inadvertent? Some have said
that it was because there were no changes to ME, but seems it would still be
included in the final copy. Are you concerned about this or certain that it
will be included?

Click to expand...

Jill, the proposed changes (e.g. 'delete', 'insert') are based on the existing draft version of ICD-10-CM.
As 'Benign ME' is already included in the existing draft, it is not necessary to propose any alterations if you wish for it to remain.
So to reiterate, it is not necessary to mention 'ME' in a proposal if you wish for it to be left as it is.
Please see my post above, for how the various proposals would look in their final form, along with the details of the existing draft of ICD-10-CM:
http://phoenixrising.me/forums/show...E-CFS-Proposal&p=207292&viewfull=1#post207292