Saturday, February 19, 2011

ISLAND OF LOST LUGGAGE

UFO Sightings and Wastebasket Diagnoses
 
Right now, CFS is classified in the “G” category on the International Classification of Diseases (ICD).  "G" indicates diseases of the nervous system.  The planned move in 2013 is to reclassify the disease in the “R” category, the island of lost luggage, also known as:  “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified.”  In other words, CFS will slither to the wastebasket of ill-defined, unexplained and generally inconsequential diseases.

This change would be detrimental.  Assigning CFS to the “G” category in the ICD is respectable and accurate.  By moving it to UFO territory of “R,” CFS will become a bigger joke than its flimsy name has conferred.  Doctors will be less inclined to treat an ill-defined disease than a neurological one, or prescribe medications.  Besides, “R” is probably just a pit stop before hitting rock bottom, from which there is no escape:  Mental and behavioral disorders, the "F" category.

A patient on the Phoenix Rising forum queried CFIDS Association board member Jennifer Spotila, “Would you explain what the CAA is doing about ICD-10-CM plans to move CFS to R53: Malaise and fatigue? (See http://wp.me/pKrrB-Un.) This has to be stopped, as it would be a big step backward in our ability to get proper diagnosis and treatment.”

Spotila responded, “Unfortunately, we have neither the time nor expertise to engage on this issue. We have no clinicians on staff, and no expertise in making the case for how diagnostic codes will have a negative impact on reimbursement. The IACFS/ME or CFSAC might be in a better position with the right expertise.”

Jennifer Spotila, how can the CAA pass the buck on this one?  How can the CAA not issue a position statement?  This isn't about diagnostic codes. This is about stating what the disease is and what it isn’t and protecting what little credibility CFS still has left.  Surely CAA Scientific Director Suzanne Vernon and CAA President Kim Kenney McCleary can pen a robust paragraph that explains why the classification should remain in the neurological camp, widely distribute it to the media and stand firmly behind it.

How about this for starters:  CFS is a serious neuroimmune disease that affects the brain, the immune system and the autonomic nervous system.  The “G” classification is accurate and should not be changed to an “R” classification.

Come on guys.  Step up to the plate, stand up for the patients, and do your job.

If readers of this blog feel the same, here’s the contact info for Vernon and McCleary.  Tell them, if you agree, to take a firm position that endorses the G classification.
1-704-365-2343


WPI FUNDRAISING EVENT

COUNT ME IN is a global fundraising event for the Whittemore Peterson Institute (WPI).  It'll be held on the 20th of every month to keep the Institute alive and well.  That’s this Sunday.  You can donate via the WPI website or the Cure for ME Causes on Facebook.  If you use PayPal, put COUNT ME IN under “special instructions for seller.”

38 comments:

  1. CAA, you got to be kidding me. Still using your inside voice huh?

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  2. Sounds like the CAA "let the cat get their tongue." Too bad with the paychecks they receive they should be able to at least write something coherent.

    The CAA has LONG LOST Credibility with me. What have they done recently besides write off a flight to the CFSAC meeting last Oct ? and show they can not even put a few Positive sentences together on our behalf ?

    Humph > I say donate and Campaign for WPI with every breathe.

    SHAME on the CAA, they have become a downright disgrace to the USA patient population.

    Thank You Mindy~

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  3. The CAA's response to this important issue has been pathetic. Patients deserve better representation.

    Thanks for having the time and expertise to cover this, Mindy.

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  4. Mindy, thank you for mentioning "COUNT ME IN." People can donate as little as one dollar on this link, so they will still be able to show their support for WPI, even if they can't afford more.

    http://www.wpinstitute.org/help/help_donation.html

    Patricia Carter

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  5. Unfortunately, we have neither the time nor expertise to engage on this issue.

    I think that is code for "why tell us about it ?"

    "do you think we are an advocacy organisation for people with ME or something?"

    "Surely we have done enough now to convince you we are not?"

    "what more do we have to do dammit?"

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  6. The CAA isn't even using it's inside voice these days. It seems to have lost it's voice entirely!

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  7. I would say to remind the CDC/NIH that the reason that CFS was coined was to investigate a neurological illness that matched nothing in the CDC's literature, except I'm quite certain that that this has never left their minds and they most certainly could not have not forgotten.
    Not with two decades of constant reminders from patients, advocates, researchers... and
    oh yes..."Congress".
    (Remember how much respect the CDC showed THEM?)

    It would be impossible for the CDC/NIH to avoid stumbling into the massive evidence of neuro-immune involvement in CFS, unless they possessed an absolutely exquisite awareness of precisely which evidence they must NEVER trip over.

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  8. Hi Mindy,

    To be precise about this, there is no such term as ME/CFS in any version of the ICD. The distinction matters.

    The proposed placement of CFS within the ICD-10CM is basically the same as where it is now in the United States' ICD-9CM (also created by the CDC). Both have CFS in a "Malaise and Fatigue" category within a wastebasket section for "symptoms, signs, abnormal results of laboratory or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded". HOWEVER, the new version will have CFS renamed "Chronic Fatigue Syndrome NOS" (NOS = 'not otherwise specified') and will SPECIFICALLY PREVENT IT from being classified along with myalgic encephalomyelitis and postviral fatigue syndrome (both classified under G93.3) in the neurological disease section.

    That is a BIG problem! That means anyone diagnosed with CFS cannot also be considered to have ME or postviral fatigue syndrome (which are scheduled to make their first appearances in an American version of the ICD)!

    It was not always so.. in 2001, the proposal for the ICD-10CM was to put CFS alongside "benign myalgic encephalomyelitis" and "postviral fatigue syndrome" in the G93.3 section of neurological diseases. At some later point, they changed the proposal and now CFS is back to a vague, meaningless non-disease category, while benign ME and postviral fatigue syndrome remain slated for G93.3. {Note - ME and PVFS do not even appear in the current ICD-9CM!} Our advocates have had a few years warning about this. For their part, the CFSAC in 2005 recommended that CFS be recoded as a neurological disease, in G93.3 again. They seem to have lost track of their own recommendation, however, as last year they issued a new recommendation, based on their own total confusion, that doesn't even make sense, and no longer argued for moving CFS to G93.3!

    The rest of the world is going to have CFS classified as a neurological disease in their versions of the ICD. The United States will not only be the odd man out in that respect, but will actually have gotten WORSE, deliberately excluding CFS from classification as a neurological disease... all thanks to the CDC.

    There is very little time left to try to change this. Our advocates - the CAA, the IACFSME, PANDORA, the CFSAC, and grassroots groups - should be putting loads of pressure on the CDC and the HHS Dept in general to get in step with the rest of the planet and classify CFS as a neurological disease alongside ME. The CAA's response you quoted betrays the depth of their ignorance and negligence about this very important issue.

    Some people are going to say that we should let the term CFS die and be glad that there will be a separate term for ME so that we can finally correctly define our illness. That's good in theory, but there is no widespread clinical definition for ME used in the United States, and it is also very possible that the CDC will provide one that means something very different than the disease we have. With few if any doctors even aware of what ME is, but readily diagnosing CFS, most Americans will be stuck in the wastebasket.

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  9. Thanks for alerting us to this issue. I wrote a pointed but polite e-mail to Kim. Too bad the CAA must always be prodded into action.

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  10. Thanks, D.Y. I changed ME/CFS to CFS in this post.

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  11. Mindy, thank you for supplying the email addresses for Kim McCleary and Suzanne Vernon. I made immediate use of them. Since the CAA told board member Jennifer Spotila that they don't have the time or the expertise to engage on this issue, I included the entire comment by D.Y. to help them them out.

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  12. Thanks, Mindy, for another great blog. Absolutely outrageous. I did as you suggested.

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  13. Thanks, Mindy, for another great blog. The CAA position is indefensible and outrageous. I did as you suggested.

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  14. Thank you Mindy for such a great explanation. One I could understand!

    And also thank you to D.Y. for a great overview. It's good Flo sent your statement in and I hope you do as well.

    Mindy thanks for always getting to the heart of issues that need our attention and advocacy. Thanks for everything you do for us. I am so grateful.

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  15. Time for the CAA leadership to LEAVE!

    If they cannot understand the implications of this, HOW are they deserving of the salaries they receive as executives of this 'ADVOCACY ORGANIZATION"???

    Bye Bye! The CAA membership will soon be aware of your poor management through Facebook and all other mechanisms YOU use to communicate.

    How you can present yourselves as advocates of those ill with ME and have any conscience is beyond me. But then again, you must not have a conscience.

    ReplyDelete
  16. RESCIND, INC. has had a Petition to formally adopt Myalgic Encephalomyelitis for almost a decade now at www.rescindinc.org.
    I testified at the very first International "CFS" meeting on April 15, 1989,
    that we needed to "lock the doors right now and Do NOT let anyone leave until you renounce the awful "CFS" Holmes Definition, and come up with an accurate definition and a FAIR name. If you don't do it today, the Holmes criteria will be adopted and an entired generation will be condemned to a lifetime of misery and many of us to premature deaths!" the speech got big applause, but the doctors and researchers never did anything about it. We brought up the "definition and Name change" at EVERY single international conference from 1989 to 2004 and NOTHING has changed. we are now close to 10,000 signatures on the M.E. petition. If we get in gear, we can reach 10,000 names by May 12th, 2011, the 19th anniversary for "International M.E. and CFS Awareness Day" it is time to adopt Dr. Melvin Ramsey;s monograph on M.E. and let the psych crowd HAVE 'CFS'. the governments of the world don't fund any biomedical research on 'CFS' anyway, so let's let them have it. and we can just demand biomedical research for Myalgic Encephalomyelitis, which has ALWAYS been a neuroimmune illness. TMH

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  17. It has become clear that the CAA is just sitting on the CFS label because they want it and there is no way back to ME patients for them. They have probably even been told to do so and also to play dumb.

    There will then be a lifetime of meaningless studies grants and meetings for them that will never "Solve CFS" any more than it will solve Mclearys dilemma over which expensive car to run on expenses. The reward for Mcleary and Vernon will be continued hyper inflated salaries.

    If DY has got the US ICD issue correct the CAA will even be able to broaden the "CFS" criteria for the purpose of never solving anything.

    This is part of an overall plan in line with the DSM V, the pretend firing of Reeves from the CDC and the final CBT push from the PACE study. Part of the plan is to bury the WPI and drag the patients around pretending that the NEI is going to do anything other that be a fatigue clinic. Mcleary knows to play dumb just long enough until she can finally come out fully as the representative of everything but ME.

    In Europe at least we already have ME listed under G93.3 as disease of the nervous system. How long that will last we don't know.

    These are all the reasons no "advocacy" group in the US is pushing for WPI funding, instead they "have a dream" for the future.

    This plan is fooling many people into supporting a fake master plan, thinking they are the future whilst burying the now, and they are drawn in as pawns. All in the name of "unity".

    Well the future started over 40 years ago when the WHO listed ME as a disease of the nervous system.

    The present is here now and the CAA is nowhere to be seen.It has become clear that the CAA is just sitting on the CFS label because they want it and there is no way back to ME patients for them. They have probably even been told to do so and also to play dumb.

    There will then be a lifetime of meaningless studies grants and meetings for them that will never "Solve CFS" any more than it will solve Mclearys dilemma over which expensive car to run on expenses. The reward for Mcleary and Vernon will be continued hyper inflated salaries.

    If DY has got the US ICD issue correct the CAA will even be able to broaden the "CFS" criteria for the purpose of never solving anything.

    This is part of an overall plan in line with the DSM V, the pretend firing of Reeves from the CDC and the final CBT push from the PACE study. Part of the plan is to bury the WPI and drag the patients around pretending that the NEI is going to do anything other that be a fatigue clinic. Mcleary knows to play dumb just long enough until she can finally come out fully as the representative of everything but ME.

    In Europe at least we already have ME listed under G93.3 as disease of the nervous system. How long that will last we don't know.

    These are all the reasons no "advocacy" group in the US is pushing for WPI funding, instead they "have a dream" for the future.

    This plan is fooling many people into supporting a fake master plan, thinking they are the future whilst burying the now, and they are drawn in as pawns. All in the name of "unity".

    Well the future started over 40 years ago when the WHO listed ME as a disease of the nervous system.

    The present is here now and the CAA is nowhere to be seen.

    Comment as: Select profile... flex () Google AccountLiveJournalWordPressTypePadAIMOpenID Name/URLAnonymous Edit Settings – Sign out

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  18. Thank you Mindy; thank you DY. So much work to do..... I'm supporting WPI and trust others will do the same to the extent they are able to.

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  19. "Let them have it"
    affirms their scientific rectitude, their correctness in the contrivance of the syndrome, and absolves them of any culpability for anything they did in regards to CFS,
    for they never did anything wrong, of CFS was only what they said.

    The blood of twenty years worth of CFS sufferers would go straight into the gaping maw of the creature in the CDC's "Little Shop of Horrors". And it will emerge, stronger than ever, looking for you... looking for ME.

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  20. There are similar efforts to do this in Germany right now!

    Regarding the CAA: I really don't see how they justify their huge salaries. Are we paying them for not doing even MORE harm?

    The CAA has failed us miserably and they should not receive any more funds. The money is better sent to the WPI. I hope one day there will be some kind of WPI spin-off advocacy organisation that patients can trust again!

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  21. Thanks for raising the ICD issue and giving it some much needed profile. Just a few points of further clarification.

    The ‘G’ codes feature in ICD-10 only (used by the rest of the world) and not in ICD-9-CM (used by the US only). ‘G’ codes will be used by the US when it moves to ICD-10-CM in 2013.

    At present, the terms ‘chronic fatigue syndrome’ and ‘CFS’ do not feature at all in ICD-9-CM.

    Instead, ‘encephalomyelitis’ is listed as follows.

    Chapter 6: Diseases of the Nervous System and Sense Organs

    Codes 320-327 Inflammatory diseases of the central nervous system

    Code 323 Encephalitis, myelitis, and encephalomyelitis

    I believe that code 323 is not used for CFS for insurance purposes by US docs. It would be interesting to know if any CFS patients do have docs who use this code.

    Instead, it is assumed that US docs use one of the following ICD-9-CM codes for CFS.

    Chapter 16: Symptoms, Signs and Ill-Defined Conditions

    Codes 790-796 Nonspecific abnormal findings (790-796)

    (For example, code 790 is ‘Nonspecific findings on examination of blood’)

    Again, it would be interesting to know which of these codes (if any) are being used currently by CFS patients’ docs.

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  22. Thank you Mindy. I agree that CAA should step up to the plate on this one. They have generally abandoned us to the wolves. This will screw pwME in the US for many years to come if ICD 10 CM proposed changes on "CFS" stand.

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  23. As a previous commenter has pointed out, this is not a new issue.

    Firstly for international readers, do not conflate the current International version of ICD-10 with this forthcoming US "Clinical Modification" of ICD-10.

    The "ICD-10-CM" is an adaptation of ICD-10 that has been developed by a US committee, specifically for the US, to replace ICD-9-CM, and it will not be used outside the US.

    The development of ICD-10-CM has been in progress for years and the proposal to retain CFS in the R codes has been known about for several years; US advocates, Mary Schweitzer and Jean Harrison, have been alerting US patients to these issues via Co-Cure since 2007/8.

    Mindy has written:

    "The planned move in 2013 is to reclassify the disease in the “R” category, the island of lost luggage, also known as: “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified.” In other words, CFS will slither to the wastebasket of ill-defined, unexplained and generally inconsequential diseases."

    It needs to be understood that CFS is already in the "R" codes in the US specific ICD-9-CM, so it is not being "reclassified" as Mindy has said.

    NCHS/CDC are proposing to retain CFS as "CFS(NOS)" under the R codes under "Malaise and fatigue" but proposing to code for PVFS and (B)ME within ICD-10-CM, in Chapter 6. That would be in line with the current International ICD-10, where both are coded at G93.3 but would leave CFS orphaned in the R codes.

    The implications for this discrepancy have been discussed at several CFSAC meetings, since at least 2005, including the May and October 2010 meetings. This is currently being discussed with CFSAC committee members with a view to tabling the issue back on the agenda for the next meeting of CFSAC for priority discussion.

    CFSAC committee is aware that there was confusion at the May 2010 meeting over codings which resulted in a Recommendation being proposed by Dr Nancy Klimas and approved by voting committee members although the drafting of the Recommendation was based on misunderstandings by Dr Klimas. Despite clarifications by Dr Lenny Jason, the wording of the Recommendation was voted in favour of.

    In my view, the Recommendation should have been rejected as not being fit for purpose and more time should have been allowed for discussion, as the committee had misled itself.

    Also the Recommendation of May 2010 failed to reiterate the call for CFS to be coded at G93.3 in ICD-10-CM, and refers only to ICD-9-CM.

    So it needs scrutising and redrafting.

    Wanda Jones is also aware of the problems with this Recommendation and hopefully this issue will be addressed at the next CFSAC meeting and the Recommendation amended.

    I have been providing background information to Lenny Jason (also on DSM-5, around which the committee has been given little information) and I have also set out why the most recent Recommendation, as it stands, is problematic.

    I have also provided Dr Jason with information on ICD-11 proposals for PVFS, (B)ME and CFS and given him contact details for three key ICD-11 Revision personnel and suggested that CFSAC might consider contacting WHO ICD Revision, Geneva, to discuss this discrepancy with proposals for ICD-11 and the implications for US patients if CFS is retained in the R codes.

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  24. A partial code freeze for proposed ICD-10-CM codings was ratified in September, last year, which means there will be only limited opportunities to submit comment on proposals between now and October 2013.

    See this ICD-9-CM Coordination and Maintenance Committee "Code Freeze" announcement:

    http://dsm5watch.files.wordpress.com/2011/02/partial-code-freeze-announcement.pdf

    also this document:

    Agenda. ICD-9-CM Coordination and Maintenance Committee, DHSS:

    https://www.cms.gov/ICD10/Downloads/091510_Agenda_Handouts.pdf

    This 6 February post on my site sets out the proposed codings for ICD-10-CM:

    "The clock is ticking for CFS: Partial Code Freeze for ICD-9-CM and ICD-10-CM/PCS Finalized (US)": http://wp.me/pKrrB-Un

    The differences between ICD-10, the Canadian ICD-10-CA, the German ICD-10-GM, the forthcoming ICD-10-CM and the proposals for ICD-11 have been set out on my site in this post:

    "CFS orphaned in the “R” codes in US specific ICD-10-CM": http://wp.me/pKrrB-V4

    Screenshots for proposals for ICD-11 are set out in this post:

    "PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform": http://wp.me/pKrrB-KK

    Current proposals for ICD-11 are that CFS is coded in Chapter 6 Diseases of the nervous system.

    Retaining CFS in the R codes and coding CFS in Chapter 18 under R53.82 (which specifically excludes G93.3) means that in ICD-10-CM, the coding of the terms CFS, PVFS and ME will be out of step with these four classification systems:

    1 The International ICD-10, which is used in the majority of countries.

    2 The Canadian Clinical Modification ICD-10-CA.

    3 The German Clinical Modification ICD-10-GM.

    4 The proposals for Chapter 6 of ICD-11 as they stood in the iCAT ICD Revision Platform at November 2010, where CFS is proposed to be classified in Chapter 6: Diseases of the nervous system, with (B)ME specified as an Inclusion to CFS.

    Refs:

    [1]International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available. It replaces the December 2010 release: http://www.cdc.gov/nchs/icd/icd10cm.htm

    ReplyDelete
  25. Mindy-Thanks so much for all of your hard work.I finally was able to catch up on some of your great writings.Under a comment about CAA I posted that we live less than 2 hours from CAA.I also noted I was not letting people know that it took 2 hours to get to Charlotte. The politics here in NC are insane and anything goes.We seriously need protections.It is the illness and what happens to you from a higher level if you speak out. The force is nothing like I have seen before.They will do anything to keep ME/CFS out. Lisa Baldin,BSW

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  26. Many thanks Mindy and other contributors on here - I'm from Europe but will use those email addresses you helpfully gave - what a pathetic response from the CAA.

    Thanks also for the links to the fundriaisng initiative for COUNT ME IN. This was set up initially in protest at the publication of the XMRV "contamination papers" just before Christmas, 20th December - hence the date of 20th of each month. It is a strong message that we will not allow valuable biomedical research to be buried yet again.

    Over $600 was raised for the launch in January and this looks set to grow month by month as we go global and include people with other diseases that are looking to be linked with XMRV (MLVs).

    The timing of this month's donation day has come just a couple of days after publication of the trash that's being passed off as "research", known as the PACE trials. Even UK own version of compliant tow-the-line charity Action for ME has issued a statement against it, along with the ME Association, Invest in ME and others, including Professor Malcolm Hooper of Sunderland University, who wrote a detailed critique of the study, a year ago called Magical Medicine: How to Make an Illness disappear - which the Medical Research Council ignored - guess who is on the Expert Panel at the MRC? Peter White, Principal Investigator/Leader for PACE.

    I sometimes feel I am living in some sort of alternate universe, or maybe just one of those horrid and drawn-out nightmares that leaves you waking exhausted in a cold sweat and so glad it wasn't real after all ... one day soon, we'll wake from this nightmare .. in the meantime, every time we get a kick in the teeth, let's find one more person from family, friends, company sponsor .. to donate to WPI.

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  27. Flex wrote:

    "In Europe at least we already have ME listed under G93.3 as disease of the nervous system. How long that will last we don't know."

    Based on the information visible in the ICD-11 iCAT alpha drafting platform as it stood at November 2010:

    Proposals for Chronic fatigue syndrome for ICD-11 are:

    PowerPoint slide:

    http://dsm5watch.files.wordpress.com/2011/02/slide8.png

    also slide:

    http://dsm5watch.files.wordpress.com/2011/02/slide6.png

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  28. Text of ICD-11 PowerPoint slide 8:

    http://dsm5watch.files.wordpress.com/2011/02/slide8.png

    ****************************

    Proposals for CFS in ICD-11

    Chapter 6: Diseases of the Nervous System (Neurological chapter)

    ICD-10 codings between G83.9 and G99.8 are being reorganised and assigned the labels

    GA thru GN (some are parent categories with child or grandchildren classes)

    GN Other disorders of the nervous system is parent to

    Gj92 Chronic fatigue syndrome

    Gj92 is a “Sorting label” not the ICD code)

    Chronic fatigue syndrome is listed as an ICD Title with a Definition and other fields

    Benign myalgic encephalomyelitis is specified as an Inclusion term to Gj92: CFS
     
    Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome is specified as an Exclusion in Chapter 18, R53 Malaise and Fatigue
     
    Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome is specified as an Exclusion in Chapter 5, F48.0 Neurasthenia

    ***********************

    Note, that for ICD-11, the parent class "G93" is proposed to be removed and that its removal would affect many categories currently coded within ICD-10 under parent class "G93", not just PVFS and (B)ME.

    The removal of the parent term "G93" is reflected in the ICD-11 "Change History" for G93.3 PVFS -> Gj92 Chronic fatigue syndrome.

    See this screenshot from the iCAT drafting platform, as it stood last November (read top down):

    http://dsm5watch.files.wordpress.com/2011/02/change-history-gj92-cfs.png

    As the iCAT drafting platform stood at November, it was not possible to determine how ICD-11 proposed to specify the relationships between CFS, PVFS and (B)ME, within Chapter 6, that is, as Synonyms, Subclasses or other relationship.

    This is because the field for the relationships between ICD Title terms listed in the iCAT and Inclusion terms had yet to be completed (this applied to many other categories).

    I am in communication with Dr Raad Shakir, Chair, ICD Revision Topic Advisory Group for Neurology, for a clarification of the proposed relationship between the three terms.

    ReplyDelete
  29. Ref my comment above:

    "At present, the terms ‘chronic fatigue syndrome’ and ‘CFS’ do not feature at all in ICD-9-CM."

    This should read "...in the ICD-9-CM three digit code index."

    CFS is indexed under the five digit codes, as follows.

    780.7 Malaise and fatigue
    Excludes:
    - debility, unspecified (799.3)
    - fatigue (during):
    combat (308.0-308.9)
    heat (992.6)
    pregnancy (646.8)
    neurasthenia (300.5)
    senile asthenia (797)

    780.71 Chronic fatigue syndrome

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  30. The thread on Phoenix Rising discussing the ICD-10-CM coding issue is this one and it was started on 21 April 2010:

    ME and cfs to be classified as seperate illnesses

    http://forums.aboutmecfs.org/showthread.php?4510-ME-and-cfs-to-be-classified-as-seperate-illnesses

    -----------

    The Recommendation which CFSAC committee approved at the May 2010 meeting reads as follows:

    http://www.hhs.gov/advcomcfs/recommendations/05102010.html

    [...]

    "CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the "Signs and Symptoms" chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).*

    "*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:

    "post-viral fatigue syndrome (in the nervous system chapter), and

    "chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).

    "HHS has no plans at this time to change this classification in the ICD 10-CM."

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

    But CFS is not proposed to be coded in Chapter V (5) Mental and behavioral disorders in ICD-10-CM, but retained in the R codes.

    Chapter 5 specifically excludes:

    "symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)"

    Although a note of clarification has been included within the May 2010 Recommendations, this clarification is not explicit from the Minutes for the May 2010 meeting. I have suggested to Dr Jason that a link to the Recommendations is inserted in the Minutes, or that the Minutes are amended to reflect Dr Jason’s having clarified ICD-10-CM codings, before the recommendation was drafted, proposed and voted on.

    I also have suggested that the clarification: "In that classification, two mutually exclusive codes exist for chronic fatigue:" might be amended to read: "In that classification, two mutually exclusive codes exist for chronic fatigue syndrome:"

    in order to differentiate between "Chronic fatigue syndrome" and "Chronic fatigue", "Other malaise and fatigue" and "Fatigue NOS" that are also coded under R53 Malaise and fatigue.

    Continued/

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  31. @ Chris Douglas -

    Actually the term "chronic fatigue syndrome" does appear in the ICD-9CM, as follows:

    "780.7 Malaise and fatigue

    780.71 Chronic fatigue syndrome"

    You can download the ICD-9CM and more lovely things from the CDC site: http://www.cdc.gov/nchs/icd/icd9cm.htm

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  32. Continued from previous comment:

    The basis for which the May 2010 CFSAC Recommendation has been put forward, drafted and voted on needed challenging and it is evident from the meeting videocast that it was challenged by Dr Jason and had been queried by at least one other committee member before proceeding to a vote.

    It is also a consideration that this Recommendation, as the wording stands, could result in unnecessary alarm and confusion amongst CFS and ME patient organizations, advocates, patients and campaigners and beyond, to other agencies and the media, if it is allowed to stand unamended.

    Since there is no explicit documentary evidence that the committees with responsibility for ICD-9-CM or ICD-10-CM have proposed, or are intending to propose, that CFS should be classified as a psychiatric condition in ICD-10-CM, or moved from its current classification within ICD-9-CM, during the remaining life of ICD-9-CM, the first clause of the recommendation is based on a false premise and as such, open to being struck out as an irrelevance.

    In brief - you can drive a coach and horses through this entire Recommendation.

    The second clause of the Recommendation states:

    "CFS is a multi-system disease and should be retained in its current classification structure, which is within the "Signs and Symptoms" chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM)"

    This statement is ambiguous and open to misinterpretation.

    It recommends retention of CFS in the "Signs and Symptoms" chapter of ICD-9-CM.

    But it is unclear whether CFSAC committee is recommending that during the remaining life of ICD-9-CM, CFS should be retained within the R code chapter (and opposes any move to shift CFS to ICD-9-CM Mental health and behavioral disorders chapter, for which there is no evidence of intent) but that CFSAC’s Recommendation of August 2005 for the classification of CFS in ICD-10-CM still stands.

    Because it could be inferred, as it stands, that what CFSAC committee is now recommending, is that CFS should be retained within the R codes in ICD-9-CM but also within ICD-10-CM, as per ICD-10-CM's Technical Advisory Panel’s proposals.

    I have suggested that consideration is given to redrafting/amending the Recommendation in order to disambiguate but also to incorporate the Recommendation of August 2005. Or, that the Recommendation should be withdrawn until it can be further discussed.

    If CFSAC is recommending the dual term “ME/CFS” be adopted across HSS programs (CFSAC Recommendations - October 13-14, 2010) then logically, the 2005 CFSAC recommendation must still stand [1].

    I have also suggested that CFSAC committee informs itself about DSM-5 proposals and that having informed itself of the issues around DSM-5, that CFSAC understands that although DSM-5 development is not proposing to classify CFS or ME as psychiatric conditions, per se, within the forthcoming DSM, that it acknowledges that patient organizations, advocates, patients and carers do have legitimate concerns for the implications of the current proposals of the DSM-5 “Somatic Symptom Disorders” Work Group and the particular vulnerabilities for CFS and ME patients.

    It is also of concern that the retention of CFS in the R codes may increase patient vulnerability under the current proposals of the DSM-5 "Somatic Symptom Disorder" Work Group for combining a number of existing DSM-IV categories under a new umbrella term "CSSD".

    [1] CFSAC Recommendations - October 13-14, 2010
    http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

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  33. Oops.. Chris just beat me to it!

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  34. @D.Y., I had a funny five minutes earlier on over the coding (probably because I had been spending time looking through the ‘lovely things’ that you mention on the CDC site).

    Did you know that the US Government collects cause of death data by ICD-9 (not –CM) classifications and then recodes it to ICD-10 before publication? No wonder people are confused.

    In 2005, 12 deaths were logged against ICD-10 code G93.3 (PVFS / benign ME), although it was only a secondary cause of death for ten of these. Not sure if this includes CFS and, if not, where it might sit (if it sits anywhere at all).

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  35. After years, decades, of prodding the CAA to "step up to the plate", maybe it's time instead to insist they "step outta the way". It's not ignorance at this point. They've been told repeatedly what we want from them. It's not in their interests to do so, apparently.

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  36. Too right, Khaly.

    With a Partial Code Freeze looming in October, this longstanding coding issue is way beyond appeals to the CAA.

    This is the text of the September 2010, "Partial Code Freeze Finalized announcement", as supplied by CDC's Donna Pickett on 4 February.

    Ms Pickett also confirmed that "Clinical criteria and diagnostic guidelines are not included in ICD-10-CM."

    http://dsm5watch.files.wordpress.com/2011/02/partial-code-freeze-announcement.pdf

    Partial Code Freeze for ICD-9-CM and ICD-10 Finalized

    The ICD-9-CM Coordination and Maintenance Committee will implement a partial freeze of the ICD-9-CM and ICD-10 (ICD-10-CM and ICD-10-PCS) codes prior to the implementation of ICD 10 on October 1, 2013. There was considerable support for this partial freeze. The partial freeze will be implemented as follows:

    . The last regular, annual updates to both ICD 9-CM and ICD-10 code sets will be made on October 1, 2011.

    . On October 1, 2012, there will be only limited code updates to both the ICD-9-CM and ICD-10 code sets to capture new technologies and diseases as required by section 503(a) of Pub. L. 108-173.

    . On October 1, 2013, there will be only limited code updates to ICD-10 code sets to capture new technologies and diagnoses as required by section 503(a) of Pub. L. 108-173. There will be no updates to ICD-9-CM, as it will no longer be used for reporting.

    . On October 1, 2014, regular updates to ICD-10 will begin.

    The ICD-9-CM Coordination and Maintenance Committee will continue to meet twice a year during the partial freeze. At these meetings, the public will be asked to comment on whether or not requests for new diagnosis or procedure codes should be created based on the criteria of the need to capture a new technology or disease. Any code requests that do not meet the criteria will be evaluated for implementation within ICD-10 on and after October 1, 2014 once the partial freeze has ended.

    Codes discussed at the September 15 - 16, 2010 and March 9 - 10, 2011 ICD-9-CM Coordination and Maintenance Committee meeting will be considered for implementation on October 1, 2011, the last regular updates for ICD-9-CM and ICD-10. Code requests discussed at the September 14 - 15, 2011 and additional meetings during the freeze will be evaluated for either the limited updates to capture new technologies and diseases during the freeze period or for implementation to ICD-10 on October 1, 2014. The public will be actively involved in discussing the merits of any such requests during the period of the partial freeze.

    [Ends]

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