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Next CFSAC meeting date has been announced for November 8, 2011

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2011.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    If the ICD-10-CM coding agenda item of the CFSAC meeting had been streamed as video, I would have emailed a friend present at the meeting and asked that a note be passed to the Chair to amend the code to the discrete code before the Recommendation was seconded and voted in favour of.

    But we had no streaming!
     
  2. medfeb

    medfeb Senior Member

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    An earlier post stated the following
    "The point that a lot of people have missed about the original plan to change the US ICD codes, before the coalition got involved is that they were being written to fix this problem once and for all. ME was to be introduced for the first time as a completely separate illness, with its own separate code G.93.3 and CFS had a completely different code in a completely different section (problem solved!!!)


    This is not why the NCHS proposed putting CFS under the R codes. Their intent as stated in the Sept 14 NCHS ICD Coordinating committee meeting materials is as follows:

    "CD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990. In ICD-10 WHO created code G93.3, Postviral fatigue syndrome and indexed chronic fatigue syndrome to this code. In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

    As you can see, the NCHS intent regarding ICD-10-CM is to use the code at G93.3 for viral causes and CFS NOS under the R codes where the physician has not been able to establish a viral link. The problem with that is that both the ME-ICC and the Canadian Consensus Criteria includes both viral and bacterial causes. Separating them out as proposed is not correct. It will place patients who meet the ME-ICC criteria but can't show a viral trigger into the R class under Chronic Fatigue.

    Regarding ME - it is in the ICD-9-CM index as Encephalomyelitis (chronic) (granulomatous) (myalgic, benign) (see also Encephalitis) 323.9. You have to look in the alphabetic index not the tabular one. So doctors can diagnose ME today. BUT they don't. At the Sept 14 meeting, the NCHS asked how many people had ever seen ME used and no one raised their hands.

    Admittedly, Fukuda as a case definition is not good for all the reasons stated. But in the U.S., patients suffering from a serious debilitating neurological disease are given a label of CFS, not ME. We all want that to change. But advocating to put CFS, the only diagnosis that patients are given and have gotten disability for underneath 'Chronic Fatigue' is dangerous to those patients who are very sick. Pointing CFS to G93.3 PostViral Fatigue Syndrome is not going to wipe out ME. ME will still be there and doctors can still use it if they want AND if they understand the disease.

    The problem (as I think Andrew stated earlier) is that getting out of the mess we are in is not just a code issue. Its also a definition issue and an education issue. All of these things need to be driven
     
    usedtobeperkytina, Dolphin and Nielk like this.
  3. Jill McLaughlin

    Jill McLaughlin *****

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    ME is diagnosed. And the point should be to educate on ME, not keep it mixed in with CFS as this proposal does. Suddenly you want to redefine CFS. So sure, go ahead. But do not take ME down the fatigue black hole as you do it.

    Mary wrote - "Regarding ME - it is in the ICD-9-CM index as Encephalomyelitis (chronic) (granulomatous) (myalgic, benign) (see also Encephalitis) 323.9. You have to look in the alphabetic index not the tabular one."

    This is not true. ME is in the tabular listing. But you greatly misrepresented the WHO classification as CFS as it is NOT in the tabular listing, only in the index, so they are not really saying the same dx only as a name which has been used for, but they do not really accept it as such. So your distillation to saying that the WHO considers them to be the same disease is incorrect.

    Telling the NCHS Committee that it is not diagnosed is not true. And that the Committee has never seen a case? They've probably never seen a case of Ebola either. It is not a numbers game. CFS estimates are upward of 4 million? With a strict definition which would probably reflect ME is 800,000. So people with CFS would like to borrow ME to give them a bit more cred beyond fatigue.

    Mary, you are not changing anything except trying to deprive people of a legit diagnosis. This will NOT really change anything for CFS either. Drs will NOT accept CFS as neurological based on the code when the definition does not support it as such. A published survey taken by an Association of Neurologists just PROVED this. Most neurological illnesses can have severe fatigue, but none would be considered on the basis of fatigue and a few other "non-specific" symptoms as the diagnostic benchmarks. It is obvious that this "Coalition" has no understanding of how the system works and should not have interfered.

    Tomorrow is the deadline. Do NOT allow this to go through based on misinformation and wishful thinking.

    Sample letter to NCHS
    Dear Sir/Madam:
    I am an ME patient and have an ME diagnosis
    or - as a patient/family member/stakeholder in this
    matter, I strongly object to the combination of ME and
    CFS under ICD code G93.3. Please keep the ME and CFS
    codes/classification/diagnoses separate.

    ME has been coded at G93.3 and should not
    be changed or subdivided as in NCHS Option2.

    The classification for ME should be and remain as G93.3 under
    Diseases of the Nervous System. Based on science and policy,
    it is not clinically valid to classify CFS at code G93.3 as the
    Coalition 4 ME/CFS proposal has recommended. Such changes
    should not be made to ICD-9 or 10CM or to the future ICD-11.

    Send to: NCHS <nchsicd9CM@cdc.gov>,
    Donna Pickett <dfp4@cdc.gov>
    ASAP! Deadline is Nov 18.


     
  4. Andrew

    Andrew Senior Member

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    ric,

    A few notes here. I don't think the CDC admitted it was an epidemic. Initially the said EBV but when that didn't pan out, they did not say its an unidentified epidemic. With Strauss at the NIH, he pretty much did the same thing.

    With regard to brain scans, what people should now is those lesions come and go. So don't think you can just get a scan and something will show.

    Another thing, the CDC team did look at about three patients. But did not examine them. And one of Holmes comments was most didn't look sick. I'm glad he is not in the business of diagnosing cancer. A lot of people would be dying on his watch.

    Holmes also had another flaw in logic. He refused to accept a range of physical manifestations as part of the illness, claiming they could have a different cause. And his theory was that if you eliminated these, you had a purer cohort. What this overlooks is that highly symptomatic people can often be more representative of an illness.

    Regarding Plan A and Plan B, we just disagree. And I'm not overlooking what you said about the treatment in NZ. I just believe that the grass is not greener in the pure ME pasture. I have not been able to find any treatment options coming from ME literature. Throw away all the CFS research and ME/CFS research and jettison all the CFS or ME/CFS practitioners, and you are left with almost nothing. Throw out the Rituximab studies, CFI, the Lights, etc. and I (at least) have no hope. Throw out the Canadian Consensus, and that kills Scotland's recommendation that the CCC define ME (the Canadian Consensus is a Plan B project that associated ME and CFS). And then throw out the ICC because it is step 2 of a plan B approach. All I see being left after this is a feeling of dx purity, and the reality of being further behind than I was before.
     
  5. Ember

    Ember Senior Member

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    I'm stumped, Tina, as to how I would frame your question.

    To my mind, it's self-evident that the ME-ICC presents more restrictive criteria than Fukuda. How could it be otherwise, given that the ICC requires PENE, and Fukuda doesn't even require PEM? The CCC is already acknowledged to be more restrictive than Fukuda (see my post #290). If the ICC had, as you seem to suggest, taken Fukuda as its starting point and merely documented recent research, then in terms of its criteria, it would have taken a big step backward with respect to the CCC. That's impossible, and I can't even ask the question!

    ME-ICC patients must be fewer in number than CFS-Fukuda patients if they're identified using more restrictive criteria. At least descriptively, they have to be a subgroup. As a subgroup, they either have a more severe form of CFS or a disease with a mechanism different from CFS. Conflicting views on that issue will be resolved, one hopes, by studying ME separately from CFS patients: The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and etiology of myalgic encephalomyelitis. ME-ICC patients then must be separated from CFS-Fukuda patients for research purposes.

    Clinically, some CFS-Fukuda patients don't present with PEM. By definition, it's not required. If they don't have PEM, then they don't relapse with exertion. ME patients present with PENE; they relapse with exertion and need for their safety to be managed differently. It seems then that ME-ICC patients must be separated from CFS-Fukuda patients for clinical as well as for research purposes.

    Does the ME-ICC intend to separate ME from CFS? Yes, for clinical and research purposes it seems that it does. Does it separate ME and CFS into two different diseases? It doesn't even describe CFS. It limits its scope to ME, so it's silent on that issue. In describing PENE, the ICC depicts ME as a neuroimmune disease; it doesn't make that claim for CFS.

    If you can tell me where we disagree, then perhaps I can frame the question.
     
  6. Ember

    Ember Senior Member

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    And why wouldn't it serve equally in a plan A approach?
     
  7. Andrew

    Andrew Senior Member

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    Some people don't want ME and CFS mentioned in the same breath.
     
  8. Ember

    Ember Senior Member

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    Those who would favour plan A also favour the ME-ICC (the ICC being an ME definition).
     
  9. Andrew

    Andrew Senior Member

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    There is another possibility. ICC patients will be ICC patients. CFS-Fukuda will be seen as a problematic DXs existing in research, along with other problematic DXs.
     
  10. Andrew

    Andrew Senior Member

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    I'm relieved to hear that.
     
  11. Ember

    Ember Senior Member

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    If ME-ICC patients were removed from CFS-Fukuda, then CFS-Fukuda patients could also be studied on their own. Using distinct cohorts, researchers might be able to resolve their problematic status as well.

    United we stand doesn't make for good research.
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I am no longer commenting here about the ICD-10-CM issue as the moderator has received a complaint that it is off-topic. Ember, I sent another PM to you.

    Tina
     
  13. Dolphin

    Dolphin Senior Member

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  14. Andrew

    Andrew Senior Member

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    That's one way of viewing this. But who is still using Fukuda? The CDC doesn't. And I really don't see Fukuda as a superset of ME-ICC. I see it as a mistake. But I do have a concern, and that is what happens to our fellow sufferers who don't fit ME-ICC.
     
  15. Jill McLaughlin

    Jill McLaughlin *****

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    Andrew, If they do not have ME or fit the ME-ICC criteria then they can have CFS if they meet the criteria. CFS is very harmful as a dx for those with ME. We just want ME recognized as separate from CFS, which will not happen if they are connected and coded as the same ICD code.


     
  16. rlc

    rlc Senior Member

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    Hi Medfeb RE

    1. CD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990. In ICD-10 WHO created code G93.3, Postviral fatigue syndrome and indexed chronic fatigue syndrome to this code. In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

    As you can see, the NCHS intent regarding ICD-10-CM is to use the code at G93.3 for viral causes and CFS NOS under the R codes where the physician has not been able to establish a viral link.

    Thank you for your public admission that the coalition proposal has been being sold to the public on the basis of information that is completely false and misleading. The coalition proposal has been sold on the basis that the R53.82 code is for psychiatric illnesses and you have just shown that the NCHS does not and never has had any intention for the R53.82 code to be viewed as psychiatric and that you and therefore the coalition are well aware of these Facts!!!!

    When I said that before the coalition got involved is that they were being written to fix this problem once and for all. Maybe it would be more correct to say that they had been written in a way that would fix this problem once and for all, and separate the neurological patients and therefore more likely to have ME, form all the none neurological patients, I am well aware that the NCHS does not have a complete understanding of the problem, but the original proposed code changes, would have fixed this problem once and for all.

    I suggest that it might be a really good idea if both the NCHS and the Coalition actually had some understanding of what ME and CFS are, and what the medical literature actually says. The idea that patients can be separated on the basis of a past viral infection is preposterous! There is no scientific evidence that 100% proves that the ongoing symptoms found in CFS and ME patients is caused by a past viral infection, sure theirs hundreds of theories, but none have been proven. The fact that a patient might have a acute onset does not prove its viral, it could be viral, bacteria, fungal, patristic, environmental poisoning the list goes on and on, even if a patient has been tested and found to have a known virus in the beginning, there is no evidence whatsoever that this initial viral infection is the cause of either CFS or ME. And PVFS is a theory that has never been scientifically proven, This is why the ICC states that ME and CFS patients are to be separated based on the symptoms they have, NOT on the basis of if they have a past viral infection or not.

    RE The problem with that is that both the ME-ICC and the Canadian Consensus Criteria includes both viral and bacterial causes.

    The ME-ICC and the Canadian Consensus Criteria do NOT include both viral and bacterial causes, they say that there is some evidence that there MIGHT possibly be Viral and bacterial causes, but that this evidence is far from been proven in any way shape or form, there is nothing in either document that says that it is in any way possible to separate patients on the basis of a viral or bacterial cause!!!

    So this statement of yours Separating them out as proposed is not correct. It will place patients who meet the ME-ICC criteria but can't show a viral trigger into the R class under Chronic Fatigue.

    Is pure fantasy and completely incorrect. The ICC separates ME patients from CFS patients based on symptoms NOT viral and bacterial causes!!!!!

    Once again scientific documents and medical facts are being misrepresented to try and prove a point that the science and the experts in the field completely disagree with!! And do not support the coalition proposal in anyway.

    The original proposed changes to the ICD more by luck then being based on solid medical science, however would split the patient group into two groups those with neurological symptoms at G.93.3 and those with out at R53.82, which allows the patients with neurological symptoms to get a diagnosis that actually resembles their illness, and have treatment and testing appropriate to a neurological illness, and allows them to be researched as a separate group.

    RE But in the U.S., patients suffering from a serious debilitating neurological disease are given a label of CFS, not ME. We all want that to change.

    Well everyone wants to change that and I would imagine that the majority of people can see that it is wrong for patients suffering from a serious debilitating neurological disease should be given a CFS label.

    And the original proposed changes to the ICD before the coalition, who obviously do not have a correct understanding of what the science says, or even what the ICC says started meddling. ME would have its own separate neurological code G.93.3 in the States for the first time. And the patients with a serious debilitating neurological disease would be separated from the none neurological CFS patients who would be in a completely separate code R53.82. Problem solved once and for all.

    The coalition proposal completely ruins this, it turns the diagnosis of every single person in the US diagnosed with CFS into a neurological one. A vast number of people with a CFS diagnosis dont have a neurological illness, so they all get a completely wrong ICD code. (In fact CFS by definition is not a neurological illness it a fatigue syndrome, ME by definition is a neurological illness) so they all get a completely wrong ICD code. The coalition proposal means that everyone has the same illness, no matter what their symptoms. All it does it takes the colossal mess that has existed for decades, of ME patients being mixed up with a vast number of other misdiagnosed people with different conditions in the CFS group and swaps the ICD code for the whole lot, making it impossible to separate the Neurological patients from the rest, which will mean that the neurological patients will continue to get lost in the mess and will never receive the help they need.

    The coalition proposal also opens the door for every single patient in the US to be reclassified as having Complex Somatic Syndrome Disorder, because having the non neurological patient with the same ICD code as the neurological ones, means they can do exactly the same as the Wessely School have done in the UK, study some of the psychiatric patients in the CFS group, and declare it is a somatic illness, because the Coalition proposal will give CFS and ME patients the same ICD code, so therefore makes them the same illness, they will then say same code same illness so were going to reclassify every one as CSSD. And it will all be the coalitions fault!!

    RE But advocating to put CFS, the only diagnosis that patients are given and have gotten disability for underneath 'Chronic Fatigue' is dangerous to those patients who are very sick.

    Agreed it is, but this once again is misrepresenting the facts, the original changes to the ICD would have allowed all the very sick neurological patients to be separated from the rest and the problem would be solved. Moving everyone with a CFS diagnosis to the G.93.3 code as you propose totally destroys this, Having everyone no matter what their symptoms in the same code will allow psychiatrist to look at them and say that CFS and ME are not neurological illnesses, and everyone will be in danger of being reclassified as somatically ill, and the G.93.3 CFS ICD code will be viewed as a mistake by the medical community!

    The Coalition proposals destroys everything that they claim that they are trying to achieve and will be disastrous for Neurological patients and research.

    RE Pointing CFS to G93.3 PostViral Fatigue Syndrome is not going to wipe out ME. ME will still be there and doctors can still use it if they want AND if they understand the disease.

    Again pure fantasy if CFS and ME have the same code it means there the same illness, US doctors have been using CFS for decades, as soon as they see ME has the same code as CFS, their just going to keep using CFS because its what they Know!!!! People are creatures of habit!! And saying that doctors can still use it if they want and understand it, well that a great scientific argument isnt it, they wont want to because they are used to CFS, and they dont understand it, and it will become impossible to educate them that ME is different to CFS if they have identical ICD codes. So what your augment is, is that there might be the occasional doctor that will use ME but the rest will use CFS, so your aim is to have one disease with two completely different names and definitions!

    If the original proposed ICD changes are accepted and the coalition one rejected, Doctors will have no choice but to use ME for all the neurological patients, problem solved.

    Another point that the coalition has completely overlooked is if they succeed in making CFS a neurological diagnosis, what pray tell do they think is going to happen to all the hundreds of thousands of CFS patients who dont have a neurological illness? Doctors by law have to give an ICD code that matches the illness, so all these patients cant have a CFS diagnosis, which leaves the doctor with no choice but to give them a psychiatric diagnosis, because the coalition will have taken away the option of having them in the R code section. Im sure these patients are going to be extremely annoyed with the coalition once they find out what they have done to them.

    Going off at a slight tangent Medfeb I believe youre with Pandora? Could you please explain to me why it is that all the US patient orgs completely ignore the issue of misdiagnosis? That is caused by the woefully incomplete instructions found in the CFS definitions used in the States. I would recommend scrolling down to the bottom of this page and reading the article The myth of Chronic Fatigue Syndrome by Dr Shirwan a Mirza http://www.bmj.com/content/334/7605/1221?tab=responses In it you will find detailed instructions on all the common disease that cause the same symptoms as CFS that are not in the US definitions and how to test for them. Then print it out, and next time you lot are in contact with The CFSAC or NHCS, start demanding that they make these test mandatory for all CFS patients, so that everybody has to have these conditions ruled out before they can have a CFS diagnosis, its not a complete list of every disease that gets misdiagnosed as CFS but its the most common ones and a good start. It would give tens of thousands of miss diagnosed patients their lives back, and stop them being added to the mixed cohorts being research!
     
  17. Andrew

    Andrew Senior Member

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    I can't see into the future. But I can see the past. So far the method of joining them as a first step is working best. And I would not say that if I did not see standalone ME definitions starting to emerge from joined definitions. I don't see any successful project that started as a stand-alone.
     
    beaker likes this.
  18. Ember

    Ember Senior Member

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    The past 20 or 30 years isn't my idea getting off to a good start!:D

    Cort pointed out on another thread that the Fukuda definition 17 years ago cited the possibility of subsets and yet here we are - with little comprehensive work done on that aspect by the CDC - which sponsored the definition - almost 20 years later. (They have looked at symptoms and did try to break the group up in a Pharmacogenomics study...but basically there's been little concentrated effort).
     
  19. Andrew

    Andrew Senior Member

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    The term Myalgic Encephalomyelitis has been around longer than that. And it's not exactly setting the research world on fire. :D
     
  20. Dolphin

    Dolphin Senior Member

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    Videotape Delay excuse

    http://www.hhs.gov/advcomcfs/

     

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