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Coalition 4 ME/CFS Proposal to Reclassify Chronic Fatigue Syndrome (CFS) in the ICD-9

Discussion in 'Action Alerts and Advocacy' started by Little Coqui, Sep 13, 2011.

  1. Little Coqui

    Little Coqui

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    FOR IMMEDIATE RELEASE

    Coral Gables, FL, September 12, 2011 The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the United States International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM). The proposal was accepted for review at the upcoming meeting of the Coordination and Maintenance Committee at the Center for Medicare Services (CMS), in Baltimore, Maryland, on September 14, 2011.

    The proposal request is supported by past and current recommendations from the CFS Advisory Committee (CFSAC), an advisory committee, created under the Federal Advisory Committee (FACA) statue and regulations. The proposal request is to reclassify CFS as a neurological disease in the ICD-9-CM and ICD-10-CM in recognition of the current scientific understanding of CFS and its classification in the ICD-10 by the World Health Organization (WHO). The goal of this proposal is to ensure alignment with ICD-10 under WHO and the clinical modifications embraced by other countries, and to ensure alignment with the best current case definition for CFS, which includes both viral and bacterial triggers, stated Mike Munoz, a member of the Coalition 4 ME/CFS steering committee.

    The WHO publishes the ICD, which is used by more than 100 countries to standardize how diseases are classified. In the ICD-10, which is the current global standard, myalgic encephalomyelitis (ME), post viral fatigue syndrome (PVFS), and CFS are all classified under Neurological Diseases. This proposal is a stepwise change that will separate cases of ME/CFS from cases of unspecified chronic fatigue and depression, and in the process, signal to the medical community the seriousness of this disease, said Lori Chapo-Kroger, another steering committee member.

    It is estimated by the Centers for Disease Control and Prevention (CDC) that at least one million individuals in the U.S. and 17 million worldwide (National Institutes of Health) are stricken with this debilitating, disabling, and sometimes fatal disease. The annual economic cost in the U.S. for ME/CFS according to a recent study published in the Journal of Dynamic Medicine-Bio Med Central, by Jason et al., from DePaul University is estimated to be between 18 and 23 billion dollars. Marly Silverman, another member of the current Coalition 4 ME/CFS steering committee added: The approval for review of this historical proposal by the NCHS, highlights the fact that current science is bringing government health agencies, researchers and patient advocacy groups together to collaborate, leading to results that will improve quality of life for patients afflicted with ME/CFS in the U.S.

    The Coalition 4 ME/CFS supports our scientific research community in the efforts of retiring the name chronic fatigue syndrome and the acronym CFS. It supports a worldwide collaborative and accepted case definition, with well-defined diagnostic criteria and guidelines for implementation of well-devised treatment standards. Although the coalition recognizes pragmatically the effort and time needed to drive this welcome change across all clinical, research, legal, disability, and insurance disciplines in the U.S., we believe our ICD-10-CM and ICD-9-CM proposal initiative contributes to a productive timely result.

    We acknowledge and express gratitude to Mary Dimmock, who prepared the proposal request with solid expertise and diligence on behalf of the Coalition 4 ME/CFS. We thank the Coalition 4 ME/CFS steering committee for their unwavering commitment to this project. We acknowledge CFSAC members who have voted for the recommendations that this proposal supports. We appreciate the support of physicians and researchers who provided expert input to the proposal.

    To read the proposal and get more information, visit the coalition website at Coalition4ME/CFS.org

    About NeuroEndocrineImmune Diseases (NEIDs)

    NeuroEndocrineImmune diseases include fibromyalgia (FM), chronic Lyme disease (CLD), multiple chemical sensitivities (MCS), Gulf War illnesses (GWI), and chronic fatigue syndrome (CFS). CFS is also known in Europe and other countries as myalgic encephalomyelitis (ME).

    About Coalition 4 ME/CFS


    Coalition4ME/CFS was founded on March 1, 2011. The mission of the coalition is to engage and mobilize governmental health agencies, the private biomedical industry, researchers, health care providers, and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases. Visit us on Facebook. Follow us on Twitter

    Coalition members are the Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia, Inc., CFS Knowledge Center, CFS Solutions of West Michigan, PANDORA, Inc. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.), Phoenix Rising, Rocky Mountain CFS/ME & FM Association (RMCFA), Vermont CFIDS Association, Inc., and Wisconsin ME/CFS Association, Inc.

    Contact: Mike Munoz

    Cell Phone: (303) 423-7367

    Email: info@coalition4mecfs.org
     
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  2. justinreilly

    justinreilly Senior Member

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    Wow! That is an amazing piece of advocacy!! Thank you so much to Coalition4ME/CFS!!

    I have written a letter in support to the Committee:
    View attachment to_ICD_10CM_Committee_re_request_to_adopt_C.pdf

    They don't tell you who is on it on the CMS and CDC websites, just one contact- the co-chair Donna Pickett. Please, everyone send her a short email saying you very strongly support Coalition4ME/CFS's ICD Recommendations on ME, PVFS and "CFS" and ask her to forward it to all the other committee members!! This is so incredibly important and the next two days, Weds and Thurs, the committee is meeting for the last time before the ICD 10CM is going to get set in stone. ICD 10CM will be 'frozen' in just a few weeks on Oct 1 all the way until Oct 1, 2013 when ICD 10CM makes its debut. It will be harder to change then, so everyone please urge them to do it NOW! Thank you!
     
  3. Francelle

    Francelle Senior Member

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    I may be topsy-turvy in my understanding of this but wouldn't it have been better to get rid of the term CFS altogether and then not risk the cross contamination of the nomenclature M.E. and CFS?
     
  4. Little Coqui

    Little Coqui

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    WillowJ likes this.
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    well done! thanks for this, Mary Dimmock and Coalition 4 ME/CFS, and Tina Tidmore for the meeting reports :Retro smile:

    The update paper discussing ICC can be found here (pdf on Coalition 4 ME/CFS's site)

    pdf of the first paper posted is here
     
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    American readers, if possible, please send both papers to your elected representatives, most particularly your US Senators and US Representatives, and if some could send also to the President and Vice President, that would be great. Thank you!

    You can quickly and easily find info for your officials here. Most impactful forms of contact are, in order: 1) postal mail (not suitable this time because we need to be fast) and fax, 2) telephone, and 3) email. I assume Twitter goes with email.
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    For more information, see this: http://coalition4mecfs.org/ICDFAQ.html

    All of the variables have been considered. There is a recording. And when you listen to the recording, you will see why it would not be acceptable to this committee to remove CFS (at this time, hint, hint). This is a stepwise approach. From the comments from the committee members, it seems promising that they will move CFS under diseases of the neurological system.
     
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  8. justinreilly

    justinreilly Senior Member

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    Tina, I don't see the recording. Eager to listen to it.
     
  9. rlc

    rlc Senior Member

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    Hi all, I recommend that everybody who qualifies for an ME diagnosis according to the ICC does everything in their power to STOP this Coalition 4 ME/CFS proposal!!!!

    For these reasons,

    The ICC has gone to great lengths to show that ME and CFS are different conditions!! By such statements as,

    Individuals meeting the International Consensus Criteria have myalgic
    encephalomyelitis and should be removed from the Reeves empirical criteria and the
    National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

    And they make it clear in the ICC that research showing Neurological damage such as failed SPECT, MRI and PET scans relates to ME not CFS!!!!! There is no evidence showing that the different condition CFS, is neurological, The Coalition 4 ME/CFS is advocating that the research showing Neurological damage in ME should be hijacked, and used to prove that CFS is a neurological illness, do all the people who have ME want this to happen??

    If CFS is reclassified as Neurological in the same section of the ICD as ME, this will only continue the confusion amongst researchers and the general public and lead to them continuing to think that ME and CFS are the same condition, which they are not. This will likely lead to more waste of resources, as the groups are mixed together in research studies leading to even more confused results.

    It has been proven many times that the CFS group is made up of a large number of misdiagnosed people, who in reality have a large variety of different known medical conditions, from Depression to Cancer, is re labeling all these people as being Neurlogically ill going to help them get a correct diagnosis? Obviously not!

    The coalition 4 ME/CFS statement says

    This proposal is a stepwise change that will separate cases of ME/CFS from cases of unspecified chronic fatigue and depression,

    This change WILL NOT separate people with unspecified chronic fatigue and depression, all it will do is change their label to CFS (neurological), what will separate the people with unspecified Chronic fatigue and depression would be if groups like the coalition 4 ME/CFS started advocating that the testing requirements to rule out other diseases before a CFS diagnosis is given be, updated because the current CDC recommendations for test to rule out other diseases, are so incomplete, it defies belief, and wont even rule out half the possible causes of Chronic fatigue.

    This statement by the Coalition again shows them twisting evidence to suit their agenda.

    It is estimated by the Centers for Disease Control and Prevention (CDC) that at least one million individuals in the U.S. and 17 million worldwide (National Institutes of Health) are stricken with this debilitating, disabling, and sometimes fatal disease. The annual economic cost in the U.S. for ME/CFS according to a recent study published in the Journal of Dynamic Medicine-Bio Med Central, by Jason et al., from DePaul University is estimated to be between 18 and 23 billion dollars.

    If there so keen to quote Jason et al. It might be a good idea to include the quote from him in the ICC that only 10% of people given a CFS diagnosis using the CDC guidelines actually have ME!!!!!!! Instead of trying to imply that 17 million people have the same neurological disease.

    This statement by the Coalition 4 ME/CFS is also not entirely accurate

    In the ICD-10, which is the current global standard, myalgic encephalomyelitis (ME), post viral fatigue syndrome (PVFS), and CFS are all classified under Neurological Diseases.

    The reality of what the WHO says is

    ICD-10 and 'CFS'
    'CFS' is not classified in the Tabular list (the main body of the code listings) of ICD-10. 'CFS' is present in the Alphabetical index, published only in CD-ROM and book form, not online. 'CFS' has been listed in the index of ICD-10 since it was published in 1994.

    'CFS' in the index is indexed to G93.3. What does this mean? Clearly it indicates that 'CFS' has some relationship to the diseases at G93.3, i.e. PVFS and Benign ME, but what is this relationship?

    ICD-10 does not say that 'CFS' is synonymous with M.E. ICD-10 is silent as to the relationship between CFS, and PVFS and ME.

    ICD-10 gives various possible relationships between a term in the Alphabetical index, and the term in the Tabular list to which it is indexed. It may be:
    a synonym
    'a diagnostic term currently in use'
    an 'imprecise and undesirable term' or 'a rubric for ill-defined conditions' (all from Introduction to ICD-10 Vol.3, 2nd Edn.)
    'a best coding guess' (correspondence from the WHO).

    However, ICD-10 does not specify which of these possible relationships applies in the case of 'CFS.' Thus ICD-10 does not specify what relationship 'CFS' has with M.E.

    Nor has the WHO issued any statement which specifies the relationship between 'CFS' and M.E., despite requests for clarification.

    The ICD-10 CM (USA), for use in future, classifies M.E. at G93.3 under Diseases of the nervous system.

    So no need to worry people with ME the US ICD-10 will have ME classified as a Neurological disease, unless these US orgs try to stop that as well. So the Coalition 4 ME/CFS belief that they need to get CFS reclassified as Neurological as a stepping stone to getting ME classified as Neurological is nonsensical!

    Unlike WHO ICD-10, the US versions of the ICD are quite clear about the relationship between 'CFS' and M.E.: there is none. Amy Blum, Medical Classification Specialist at the National Center for Health Statistics has stated:

    'ME is not considered a synonymous term for chronic fatigue syndrome in the United States.'

    Ms. Blum has also made the following illuminating statement:

    '...it is not clinically valid to classify all cases of CFS to code G93.3. The default will be R53.82 except in those cases where the cause is determined to be of viral origin.'

    Another important point that the Coalition 4 ME/CFS have failed to notice is that ME is in the ICD-9 it is just listed under its older names Iceland disease, Epidemic Neuromyasthenia ( Epidemic Neuromyasthenia is the name that was used in the USA for ME link http://www.eicd9.com/index.php?action=alphaletter&start=40692&mv=p

    All this proposal by the Coalition 4 ME/CFS is going to achieve is to set the name CFS in stone, and it is likely to be in the US ICD for decades, as they dont like making changes to it very often!

    Classify CFS as Neurological which there isnt evidence for, they are proposing that the evidence for Neurological illness in ME be Hijacked so that they can say that CFS is Neurological.

    It will reinforce the confused belief that ME and CFS are the same disease, which the likes of the ICC are trying to end! Which will continue to hamper attempts to research the different groups, and will delay ME research, and leave people with ME still having to suffer being told by the public and press that ME is just another name for CFS.

    It legitimises CFS as a disease, which it is not! It is just a collection of unspecific symptoms that can be caused by hundreds of different known illnesses that have wrongly all been lumped together and declared a Syndrome by the CDC.

    The Coalition 4 ME/CFS is selling this as some kind of way to eventually get ME recognized as a separate disease, all it will do is legitimise CFS and put it on an identical footing as ME.

    ME is already recognized as a separate Neurological disease, of the major players in this.

    The World Health organization recognize ME as a Neurological Disease.

    The USA ICD will be recognising ME as a separate Neurological disease.

    The CDC recognises ME as a separate neurological disease.

    The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    The ICC recognizes ME as a separate Neurological disease.

    The likes of Dr Hyde, Professor Hooper, Dr Dowsett recognize ME as a separate Neurological disease.

    The only people refusing to are the Wessely school by using the term CFS/ME
    And these US orgs by continuing to use the term ME/CFS, a term which the writers of the CCC which invented it, are now saying in the ICC that it is not correct and that there are two different conditions ME and CFS.

    I urge everyone who has ME to fight this proposal tooth and nail, it is not going to help you at all, and is just the US orgs yet again denying all the evidence and promoting their false beliefs, instead of promoting the truth as laid out by the likes of the ICC,

    The NCHS is creating a link for
    the public to send in their comments in reference the Coalitions proposal. The
    Coalition will announce this link through the Coalition 4 ME/CFS Facebook page
    and the Coalition website. The deadline for submitting comments is November 18,
    2011.

    I recommend that all ME patients send comments that object strongly to the Coalition 4 ME/CFS proposal.

    All the best
     
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I respectfully disagree.

    please note that the proposal to code ME/CFS as G93.3 is not recommending use of a junk inclusion. They are asking for the disease to be recognized as a specific neurological disease (not as a, "well, we couldn't figure it out in 5 minutes and 10 lab tests, so we're going to call it CFS"). This is a change from the unscientific way it is currently handled.

    The current situation is untenable. It would be very nice if we could undo the past 30 years of bad science, but the plain fact is that we cannot. We have to go forward from where we are now.

    The original CDC proposal was to take everyone with a CFS diagnosis and throw them under the bus (i.e. give them a "chronic fatigue, unspecified" diagnosis in a wastebasket category), unless they can prove a specific viral trigger, and to put those ppl with a proven viral trigger in G93.3 which is still described as Fukuda.

    The current CDC proposal is to tell everyone that everyone with a CFS diagnosis (this includes every USA person with ME or ME/CFS) should be reclassified as "chronic fatigue" under a wastebasket category (the same "vague symptoms and ill-defined conditions" where CFS currently resides). There will be a CM listing for ME, but it will be chiefly called Post Viral Fatigue Syndrome, and it will be described as Fukuda. Doctors will be told it converts from the current code for muscle weakness.

    Under either of these CDC proposals, ME patients carrying a CFS diagnosis (i.e. every last ME patient in America, and most in Australia in UK, etc.; only those with a very smart doctor or ME/CFS specialist will escape...) will most likely be binned in an even worse diagnosis than they currently have. These proposals will not help move the field forward either scientifically or from a prejudicial standpoint. Nor will they improve physician education.

    The Coalition 4 ME/CFS proposal, on the other hand, does have the potential to improve the scientific, educational, and public relations aspects. Because they are asking consideration of a better inclusion, it will help differentiate between ME and chronic fatigue. Also, merely moving the diseae to a neurological code could help weed out random chronic fatigue patients (and help the other patients get better diagnosis and appropriate help for their various conditions).
     
  11. justinreilly

    justinreilly Senior Member

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    If ICD10CM stays the way it is, that will ensure that people with a neuro condition (ME/ American "CFS") don't get a neuro diagnosis because they will continue to be diagnosed with "CFS" which will listed as being the mere symptom of "unspecified fatigue."

    so, something has to change. I agree that asking/demanding they get rid of "CFS" entirely is good. Please do this; but if you comment to CDC on the proposal, please don't simply say "I oppose the proposal" since they will take this to mean you want "CFS" to stay listed as the symptom of "unspecified fatigue." Instead say, "The term "CFS" must be discarded." This is very important. We all know how CDC operates; they may well use any opposition to the proposal from patients to say "well, there's no consensus whether anything should be changed so we're just going to leave it like it is" and we would then all be screwed for many more years.
     
  12. rlc

    rlc Senior Member

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    Hi Willowj

    RE please note that the proposal to code ME/CFS as G93.3 is not recommending use of a junk inclusion. They are asking for the disease to be recognized as a specific neurological disease

    The Coalition 4 ME/CFS is not asking that ME/CFS be coded as G.93.3 they are asking for CFS to be coded G.93.3!!!!! which will mean that everybody in the US diagnosed with CFS will be said to have a neurological illness. This will help no one, because most of them dont have a neurological illness!

    It will mean that all the people misdiagnosed with CFS that have other diseases from depression to cancer will be classed as having a neurological diseases, which makes no sense at all!

    ME is already going to be listed in the USA ICD-10 at G93.3 under Diseases of the nervous system.

    The Coalition 4 ME/CFS should be supporting this not trying to get CFS made into the same disease as ME.

    RE The current CDC proposal is to tell everyone that everyone with a CFS diagnosis (this includes every USA person with ME or ME/CFS) should be reclassified as "chronic fatigue" under a wastebasket category.

    This is not true, a couple of years ago the CDC made it very clear that they have changed their previous position that CFS is the same as ME. And have included this information on their website

    The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    All the US CFS orgs have completely dropped the ball on this, and there has been no attempt to get the CDC and US government to take action on this, which the CDC now legally has to do, because they have finally admitted that it exists! The problem now is that the US CFS orgs will not take action on the CDC statement and instead are promoting their long held false beliefs that CFS and ME are the same thing, and are falsifying the evidence that they are telling their followers, such as this statement from the CAA

    A large international panel of experts published a new definition of myalgic encephalomyelitis in the Journal of Internal Medicine, recommending it replace CFS - the name and definition. http://www.cfids.org/

    This statement is totally false!!!! The ICC clearly states that they are not recommending that the name Myalgic Encephalomyelitis replace CFS the name and definition. They are saying that ME and CFS are completely different, and only the people that have the symptoms in the ICC have ME, everybody else is to remain with a CFS diagnosis.

    The US orgs should be taking action to make the CDC and US government take action on ME and start properly diagnosing the people who have it and making money available for research.

    Instead they are ignoring ME and trying to get CFS elevated to the same Neurological position as ME. The US orgs have always refused to acknowledge the existence of ME and are continuing to do so.

    Yes the problem was started by the CDC, but they have changed their stance, it is the US orgs that are continuing the problem and refuse to do anything to help ME patient and instead falsifying what the ICC is saying.

    1. RE Also, merely moving the diseae to a neurological code could help weed out random chronic fatigue patients (and help the other patients get better diagnosis and appropriate help for their various conditions).

    Moving CFS to a neurological code wont weed out random chronic fatigue patients, all CFS patients are random chronic fatigue patients, the only way they will get a proper diagnosis is if they are properly tested to find out whats really wrong with them. IF CFS is elevated to being a neurological disease which it isnt and given the same status as ME, Then it will only create more confusion, and undermines all the good work of the ICC!!

    People including the coalition 4 ME/CFS also need to realise that there is no such thing as ME/CFS, that term was invented in the CCC, the principle writers of the CCC were involved in writing the ICC and have made it very clear that ME and CFS are different illnesses. The term ME/CFS should not be being used by anyone anymore, it only implies that ME and CFS are the same thing, which they are not, even though the US orgs have been trying to convince everyone that they are for years and have managed to block any attempt to get the two conditions researched separately!

    Again I urge everyone who has ME to resist this move by the Coalition 4 ME, all it will do is lift the artificially created disease CFS invented by the CDC to the status of a Neurological disease which it isnt, its a large collection of different fatigue causing illnesses, and at the same time if this is done its going to make it impossible to distinguish ME from CFS and undo all the good work of the ICC.

    All the best
     
  13. Bob

    Bob

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    In the UK, we use the same classification as the WHO's ICD-10.
    'ME' ("Benign myalgic encephalomyelitis") is classified as a neurological disease (under "Diseases of the nervous system" and "Postviral fatigue syndrome"), and 'CFS' is only in the index of the ICD-10 and links only to ME.
    'Fatigue Syndrome', as opposed to 'Chronic Fatigue Syndrome' is classified as psychological, under "Neurasthenia" and "Other neurotic disorders".
    "Fatigue" is under signs and symptoms not elsewhere classified.

    In the UK, the authorities officially refer to the illness or illnesses as CFS/ME, lumping the whole spectrum of diagnoses together. They give lip service to it being a neurological disease, whilst treating it as a reversible psychological illness based on a 'fear of activity'. Almost all the meagre government research funding goes to psychiatric investigations, and no government funding goes into looking at the biological causes or biomedical treatments.

    So although CFS/ME is officially classified as 'neurological' in the UK, the use of the name 'ME', and the neurological classification haven't made any difference to patients.


    I think there are a number of possible choices for the future, for both the UK and the USA... But none of them are straightforward...

    These are the options, as I see them:

    1. Get rid of the 'CFS' name completely.
    This will leave us only with 'ME' and it would be classified as a neurological illness.
    I assume that many of us might want to then move towards using the ICC for a diagnosis of ME, but that's not guaranteed to happen quickly...
    As an example of the difficulties here, for those patients who do not fit an ICC diagnosis, but who do fit a CDC fukuda diagnosis of 'CFS' - what diagnosis would this leave these patients with if the term 'CFS' doesn't exist? This scenario has the danger of keeping 'ME' being treated the same as 'CFS' is currently, as the two current diagnoses will be lumped together under the name 'ME'.
    So in this situation, as in the UK, you may have 'ME' formally recognised, but it might still be treated the same as ever by the authorities, and the old CDC criteria might still be used to diagnose 'ME'.
    If you are to get rid of the term 'CFS', people who fall outside an ME diagnosis still need a diagnosis of some sort, so where would that leave them, unless you also give them an 'ME' diagnosis, using a renamed CDC criteria.
    But I expect that the CDC will not easily give up their precious term 'CFS'.

    2. We could advocate that the ICC be used to diagnose 'ME' as a neurological disease, and that those patients who do not fit the ICC but do fit CDC Fukuda, be given a diagnosis of 'CFS'.
    If this is what we end up with then what classification should 'CFS' be given? Would it be 'neurological' or 'unknown' or 'psychological'?
    My preference is for it to be a neurological disease, but it is likely that the CDC would get their way on this one because most of the strongest advocates will only be interested in what happens to 'ME', and might not care much about what happens to 'CFS' if the two are officially separated.
    But however 'CFS' is classified, this option would allow 'CFS' and 'ME' to be researched separately, which I think would be extremelly helpful for everybody (with a CFS or an ME diagnosis).
    But in this case, I wonder if we would end up with a state of play where the USA authorities would not take 'ME' seriously, but continue to focus on 'CFS', saying that there are millions of patients with a 'CFS' diagnosis in the USA, and hardly any patients with an 'ME' diagnosis. I suppose things would change over time, but 'CFS' would always be a strong player, and might always be favoured in terms of funding by the CDC. The UK psychologists would love to have a CFS diagnosis all to themselves to play with.

    3. The other option is for CFS and ME to be linked, as if they were the same neurological disease, as is the case in the UK and in the ICD-10.
    Then questions arise, such as which diagnostic criteria would be used, and would this effectively be two diseases linked under the same umbrella term (i.e.. CFS/ME) as it is in the UK right now.
    This certainly hasn't done the UK any favours, as it is still treated as a psychological illness, and researchers are free to ignore the CCC or ICC, and just use the CDC criteria for research purposes. This is what Wessely and Co do, although, actually they don't even use the CDC criteria, they use their own Oxford Criteria.


    I don't know what the best short-term answers are but I thought I'd lay out the options, and possible consequences, as I see them.

    But to me, it seems like option number 2, above, might be the best option.
     
  14. Nielk

    Nielk

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    Ric,

    You state:


    Where in the ICC do you see that the name CFS is to remain for people who don't fit the ICC diagnostic definition?
    From what I understand is that those people who don't fir ALL the criteria, should be called IME - Idiopathic ME
    I think that they make it pretty clear that they want to drop the name CFS completely.
     
  15. Bob

    Bob

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    I'm not sure if they have a position on dropping the 'CFS' name completely, do they?

    The ICC states:

    and:

    Which gives the impression that 'CFS' should be replaced with 'ME'...

    But it also states:

    and:

    This suggests to me that they do not really have a position on what will happen to people who fall outside an 'ME' diagnosis.
    They are more interested in defining a distinct disease called 'ME', from which they want the term 'CFS' removed.
    For patients falling outside the ICC, but falling within the CDC criteria, they haven't made their position known, as I far as I am aware.


    I'm wondering if this is correct, or maybe you are confusing some issues here? There is no mention of 'Idiopathic ME' in the ICC.
    For patients not fitting the primary ICC criteria for 'ME', because they have fewer symptoms, there is an alternative diagnosis of 'Atypical ME'.
    For those falling outside this "Atypical ME" diagnosis, there is no mention of what diagnosis they should have, other than the discusision that I've quoted above which mentions Lenny Jason's research, as far as I know.

    The ICC states:

     
  16. Nielk

    Nielk

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    Hi Bob,

    Yes, I meant atypical instead of idiopathic. Sorry.

    Reading your excerpts from the ICC, I see what you mean. They do not spell out "we are no longer using the name CFS to describe this illness".

    I guess I just inferred this when I read it a while ago. I see now that it's really not clear what they want to do with the name CFS. I guess it's not so simple because if they drop it. this will have to be universally accepted by government health agencies and by patient groups.

    I definitely see your point.

    Thanks Bob.
     
  17. Bob

    Bob

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    Easy mistake Nielk. It had me confused for a while! :confused:

    That's not quite how I see it Nielk.

    I think that they definitely do want to drop the 'CFS' name from people who are diagnosed using the ICC.

    It's the people who fall outside the ICC that they don't make their position clear about.

    So as far as I understand, they do want a well-defined distinct disease called 'ME'.

    But that will still leave some people who currently have a 'CFS' diagnosis, who will fall outside the ICC 'ME' definition, and this will leave them without any other diagnosis other than an unknown illness currently defined as 'CFS'.
     
  18. Nielk

    Nielk

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    Hi Bob,

    I get what you are saying. I'm on your page.

    Nielk
     
  19. Ember

    Ember Senior Member

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    Wouldn't they continue to be defined as having ME/CFS under the CCC?

    The ICC states:

    The Canadian Consensus Criteria were used as a starting point, but significant changes were made...."

    "...the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world."

    In this way, the ICC establishes an ME subset from within the older and more general CCC (ME/CFS) definition.
     
  20. Bob

    Bob

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    Hi Ember,

    It's the CDC's 'CFS' definition which will catch anyone falling outside the ICC and CCC definitions.
    The CCC is rarely used, as far as I know, and some people will still fall outside the CCC but be caught by the CDC's definition of 'CFS'.
    I'm not sure which of either the CCC or the ICC is the most 'selective', or 'specific', diagnostic criteria (I haven't compared them directly), but they are both far more specific than the CDC's criteria.

    I hope that helps... Sorry, reading this back, it all seems as clear as mud!

    I suppose that if anyone were to still to be diagnosed using the CCC, then they would be diagnosed with 'ME/CFS', but I can see the CCC becoming redundant very quickly now that the ICC is becomming established as a favourite with many ME patients.

    When they refer to a "more selective set of clinical criteria" here, they are specifically comparing the ICC with the CDC's Reeves empirical criteria, not the CCC.

    Bob


    ICC = International Consensus Criteria
    CCC = Canadian consensus criteria
    CDC = Centres for Disease Control
     

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