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Opposition to the Coalition 4 ME/CFS Proposal

Discussion in 'Action Alerts and Advocacy' started by rlc, Sep 16, 2011.

  1. rlc

    rlc Senior Member

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    Warning for All people who have ME as diagnosed by the ICC.

    For those of you that do not understand what the Coalition 4 ME/CFS proposal is trying to do by getting changes made to the USA ICD-10

    They are not just proposing that CFS is to be made a Neurological disease under USA ICD code G93.3

    They are proposing that Myalgic Encephalomyelitis is not to be included at all!!!!!!!!!!!!!!!!

    They are trying to make sure that Myalgic Encephalomyelitis does not exist in the USA !!!!!!!!!!!!!!!!!!!

    The US ORGS have always refused to accept that ME is a separate disease to CFS and are trying to get ME lumped in with all the other fatiguing conditions in the CFS group!!!!!!!!!!!!!!!!!!!!!!!!

    So that it will never be seen as a separate disease and will never get proper research and funding!!!!!!!!!!

    The Coalition 4 ME/CFS is proposing that Myalgic Encephalomyelitis is wiped out and only CFS will remain!!!!!!!!!!

    It was already planned for ME to be officially recognized in the ICD-10-CM under code G.93.3 and The coalition 4 ME/CFS are trying to get it removed!!!!!!!!!!!!!!!!!!!!!!!!!

    This is the Coalition 4 ME/CFS proposal

    ICD-10-CM TABULAR PROPOSED CHANGES
    Option 1 (proposed by Coalition 4 ME/CFS):

    G93 Other disorders of brain

    G93.3 Postviral fatigue syndrome

    Add Chronic fatigue syndrome

    Delete Excludes1: chronic fatigue syndrome NOS (R53.82)

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified

    Delete Chronic fatigue syndrome NOS

    Add Excludes 1: chronic fatigue syndrome (G93.3)

    If you look at this you will see that they are proposing for there to be no Myalgic Encephalomyelitis in the ICD-10-CM

    Everybody with ME needs to realise what the Coalition 4 ME/CFS are trying to do, they are trying to make your disease legally not exist in the USA, if you ever want research done to find the cause and treatment for your disease you have to do everything in your power to stop this from happening!!!!!!!!!!

    If you look at the second option proposed by the NCHS you will see that ME was already going to be coded as G.93.3 and they want it deleted!!!!!!!!!! But at least in their proposal it will still exist under G93.31

    Option 2 (proposed by NCHS):

    G93 Other disorders of brain

    Revise G93.3 Postviral and other chronic fatigue syndromes

    Delete Benign myalgic encephalomyelitis

    Delete Excludes 1: chronic fatigue syndrome NOS (R53.82)

    New code G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    New code G93.32 Chronic fatigue syndrome

    Chronic fatigue syndrome NOS

    Excludes2: chronic fatigue, unspecified (R53.82)

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified

    Delete Chronic fatigue syndrome NOS

    Add Excludes2: chronic fatigue syndrome (G93.32)

    Revise postviral fatigue syndrome (G93.31)

    Link for this information here page 10 http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    You also need to be aware that your web site Phoenix Rising is a member of the Coalition 4 ME/CFS and has allowed its name to be associated with this attempt to eradicate Myalgic Encephalomyelitis from the US ICD-10-CM, and we have not been consulted about this!!! I recommend all members of Phoenix rising who qualify as having ME according to the ICC, let Cort know in no uncertain terms that they want Phoenix rising to withdraw its support for the Coalition 4 ME/CFS proposal.

    And that every member here with ME submits comments on this Coalition 4 ME/CFS proposal saying in no uncertain terms that they do not support it and that the Coalition 4 ME/CFS does not represent ME patients at all.

    The ICC has finally put ME back in the spotlight, this proposal by the Coalition 4 ME/CFS will destroy all the good work done by the ICC, it will remove all official recognition for ME and make CFS the only disease.

    The Coalition 4 ME/CFS is trying to sell their proposal as if it is a step towards getting ME recognized, this is total bullshit, it has been planned by the ICD writers since at least 2009 that ME was going to be included in the new ICD-10 under code G93.3. the coalition 4 ME/CFS is trying to stop this happening and get ME removed from the ICD.10.

    The US orgs have never wanted anyone to acknowledge the existence of ME and have always denied its existence. This is just them trying to destroy your disease and stop it getting official recognition.

    If you have ME, you have to do everything in your power to stop this happening. This will be as bad for ME patients as when the CDC invented CFS in 1988.

    All the best
     
  2. eric_s

    eric_s Senior Member

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    When i look at the 2 options proposed here http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf on page #10, i don't see that the Coalition 4 ME/CFS proposal wants to delete "Benign myalgic encephalomyelitis".

    Are you sure what you say is correct? To me it rather looks as if "Benign myalgic encephalomyelitis" will just stay in place, unchanged.

    What i like about both proposed options is that under R53.82 there will only be "chronic fatige" and no longer "chronic fatigue syndrome".

    To me it looks as if in "Option 2" a diagnosis of "Benign myalgic encephalomyelitis" would imply the cause or trigger is a viral infection. Since we're not 100% sure of that yet, i don't know if it's smart to create two categories there, G93.31 and G93.32. Maybe it would be better to have one or three. I also don't really understand why you would need both "Chronic fatigue syndrome" and "Chronic fatigue syndrome NOS" under G93.32.

    But once again, are you really sure they ask for "Benign myalgic encephalomyelitis" to be deleted? I can't see this from the document.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ric

    Ric is absolutely incorrect.

    ME would remain the same if the Coalition 4 ME/CFS proposal is adopted.

    Not only does the coalition want ME to remain, the stated ultimate goal is that the term "chronic fatigue syndrome" be retired. That will not happen as long as they can say that it is a condition under signs and symptoms while ME is neurological. If we want ME as a term and the ME-ICC to be adopted as a criteria, we must work to do away with CFS. Because of all the multiple studies and statistics and government agencies tied to "CFS," only by showing that CFS is the inaccurate and poorly defined criteria for the real disease, ME, will we get that accomplished. They, and I mean CDC, NIH and the committee that governs the codes to keep up with health statistics have declared they will not just "do away" with CFS. But, by putting CFS in the same area as ME, we are one step closer to getting ME to replace CFS.

    Studies into ME and studies into CFS both show neurological abnormalities. So, we now have solid foundation to make the request now.

    Ric, I ask that you please delete or alter your first post as it is inaccurate. And if you have any further questions, feel free to ask me at editor@claynews.net or 205-680-6890. These are very serious matters.

    Within the next few days, the Power Point slides and a recording of the presentation will be made available so all can listen themselves. In the mean time, please look at these FAQ: http://coalition4mecfs.org/ICDFAQ.html or the proposal itself: http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf or the addendum that came after the ME-ICC came out: http://coalition4mecfs.org/ICDCFSUpdate1-MEICCAug1-2011.pdf

    Tina
     
  4. Jill McLaughlin

    Jill McLaughlin *****

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    Are we sure? They are asking for pple to support their proposal. It is not there. This
    does not include or mention ME. We cannot guess or read into it what we think.

    Why did they not inform the patient community beforehand? Why is all done behind the scenes
    in their own little secret groups? What about the MCWPA, which is supposed to be all patient
    run and everything by vote?

    And has there ever been any real understanding of CFS vs chronic fatigue? So "chronic fatigue"
    is in section R (signs/symptoms) and "fatigue syndrome" is in section F (mental health).
    And we wonder?

    It's pretty bad when the gov't is far closer to credible than this is.

    Jill

    =====

     
  5. rlc

    rlc Senior Member

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    Hi eric-s, if you look at the proposal from the Coalition 4 ME/CFS which is how they want the code G.93.3 to be. You will see that they do not want ME in it at all!!!! They only want CFS.

    The Coalition 4 ME/CFS is not being Honest and are deceiving people, they are making out that they have to make CFS neurological first because no one will except ME being in the ICD-10, and that this is being done as a step in the right direction

    This is not true!!!! ME is already in the US ICD-10 under code G.93.3 which are to be in use by about 2013.

    If you look at the NCHS proposal they are not trying to deceive people, and are showing that ME is already in the ICD-10 coded as G.93.3 and that they want to delete it and move it to G.93.31 as they explain

    Delete Benign myalgic encephalomyelitis

    New code G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    The coalition 4 ME/CFS is deceiving everybody into thinking that there is no way to get ME into the ICD-10 so the only option is to make CFS coded as G.93.3
    The coalition 4 ME/CFS is saying this

    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

    This is total bullshit!!!!!!!!!!!!!!! ME is already in the US ICD-10

    The US orgs have always denied the existence of ME, and have corrupted all the evidence to make out that ME and CFS are the same thing and promote the nonesensical name ME/CFS as if they are one disease.

    As the ICC clearly shows ME and CFS are different diseases. And they want them separated so the different groups can be researched properly instead of everybody being lumped together as they have been in the past, which is why all the research has always produced conflicting results.

    If the Coalition 4 ME/CFS proposal is allowed to go through, it will mean that ME which was about to be recognized in the US ICD for the first time, will be removed and ME will be left as having no official recognition in the USA, and instead CFS will remain the disease that get all the attention.

    What this will mean for ME patients is that any attempt to get the ICC used in the states will fail because the USA wont be recognizing Mes existence!!!!

    NO research will be funded into ME in the USA, instead it will continue to be spent on the fatigue illness CFS, which is not ME.

    The ICD codes are also used for insurance purposes; therefore nobody with ME will be able to get medical insurance cover for ME and will be stuck forever under the CFS Umbrella,

    The media and public will continue to think that ME is just another name for the fatigue illness CFS.

    If the coalition 4 ME/CFS had not interfered in this process then ME would be recognized in the USA ICD for the first time ever, you would be able to get insurance coverage for ME, ME people would be able to tell the government that ME is recognized in the ICD and is therefore real, and demand that funds be made available for research and treatment for ME, because as of the moment the US government hasnt spent a single cent on ME research since 1988, all of it has gone to CFS. If ME was left in the ICD-10 as originally proposed then ME patients could also ask for the ICC definition to be used for ME. Because at the moment there are no official ME definitions in use in the USA they are CFS definitions (Reeves)

    The Coalition 4 ME/CFS is deceiving people, ME is already in the ICD- 10 which is planned to start being used by 2013. There is no need for them to be interfering in the process. They have always refused to acknowledge the existence of ME, and instead promote ME/CFS as if they are the same disease, which is bullshit.

    They dont want everyone to know that they have been wrong for years and have done enormous damage to people with ME by blocking ME research, and acceptance of ME by the medical community.

    The ICC and ME being included in the ICD-10 would be the final nail in their coffins. People with ME have to realize that the US orgs do not represent ME and do not want its existence to be known and have been fighting against ME for decades. And have never done anything to promote research like that by Dr Hyde and have ignored all the vasts amounts of medical litrature going back to 1934 that shows what ME really is.

    Unless ME patients want their disease to lose official recognition and there for the chance of proper research and to forever be known as CFS, I would urge people to do all they can to stop the Coalition 4 ME/CFS proposal, and instead demand that ME be coded as G.93.3 as it is by the World Health organization, and was originally proposed to be in the US ICD-10,CFS should remain where it is because it isnt a Neurological illness it is just a collection of symptoms put together by the CDC that could be caused by hundreds of different diseases, Waste basket diagnoses should not be classified as Neurological

    All the best
     
  6. eric_s

    eric_s Senior Member

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    Rlc, i think you misunderstood the proposal. If you look at it in the original document http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf on page no. 10 it's better visible than here, where i've copied and pasted it. These proposals only list the changes. Since in the Coalition 4 ME/CFS's proposal there is no change to "Benign myalgic encephalomyelitis" listed under G93.3, it is not mentioned. That does not mean it will not be listed under that category, if that proposal were to be adopted!

    In Option 2 "Benign myalgic encephalomyelitis" is only mentioned because they want to delete it from G93.3 and list it under the new code G93.31.

    I think the Coalition 4 ME/CFS has done very valuable work for us here and we should be careful not to spread wrong information. So please check and make sure what you say is correct. I think you made a mistake and misinterpreted the proposal.



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

    G93 Other disorders of brain
    G93.3 Postviral fatigue syndrome
    Add Chronic fatigue syndrome
    Delete Excludes1: chronic fatigue syndrome NOS (R53.82)

    R53 Malaise and fatigue
    R53.8 Other malaise and fatigue
    R53.82 Chronic fatigue, unspecified
    Delete Chronic fatigue syndrome NOS
    Add Excludes 1: chronic fatigue syndrome (G93.3)


    Option 2 (proposed by NCHS):

    G93 Other disorders of brain

    Revise G93.3 Postviral and other chronic fatigue syndromes
    Delete Benign myalgic encephalomyelitis
    Delete Excludes 1: chronic fatigue syndrome NOS (R53.82)

    New code G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    New code G93.32 Chronic fatigue syndrome
    Chronic fatigue syndrome NOS
    Excludes2: chronic fatigue, unspecified (R53.82)

    R53 Malaise and fatigue
    R53.8 Other malaise and fatigue
    R53.82 Chronic fatigue, unspecified
    Delete Chronic fatigue syndrome NOS
    Add Excludes2: chronic fatigue syndrome (G93.32)
    Revise postviral fatigue syndrome (G93.31)
     
  7. medfeb

    medfeb Senior Member

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    UsedToBePerkyTina is absolutely correct.

    The proposal that was submitted by the Coalition 4 ME/CFS is to reclassify CFS from "Signs and Symptoms/CHronic Fatigue, Unspecified" to 'Diseases of the Nervous System" at G93.3 in the ICD-10-CM (the U.S. specific clinical modification of the ICD-10). G93.3 is the code already in use for ME and PVFS.

    The proposal is not asking for the deletion of ME or reclassification of ME away from G93.3. The proposal is not asking to modify the ICD-10 itself. The only thing the proposal is asking for is to move CFS to G93.3 where ME is. This will make the U.S. clinical modification consistent with how it is in every other country - CFS listed as a neurological disease at G93.3. Background and specifics on the proposal are below.

    Having CFS listed against "Signs and Symptoms/Chronic Fatigue, unspecified" in the U.S. specific ICD-10-CM only reinforces the confusion with fatigue and depression. It is hard to imagine any benefits to leaving it there but easy to see the numerous ways in which equating CFS to 'chronic fatigue, unspecified' hurts all of us.

    As Tina says, we all want a proper international case definition to be in place with proper diagnostics and treatments and we all want to get rid of CFS as a name and the case definitions that have caused the confusion with fatigue. We need to all push for that as quickly as possible. But the fact of the matter is that today and for the immediate future, patients that meet the ME-ICC criteria are given a diagnosis of CFS in the U.S, not ME. The proposal's objective is to at least make sure that the diagnosis of CFS that patients are given is classified as neurological, not as 'chronic fatigue, unspecified'.


    Specific background and specifics on the proposal
    1. In the ICD-10 published by the World Health Organization, CFS is listed as a neurological disease under G93.3. This is the same place where PVFS and ME are listed.

    2. Many/most countries use the ICD-10 directly but some develop a clinical modification which adapts the ICD-10 to meet that country's needs. Canada and Germany have developed a clinical modification and CFS is listed under G93.3 in each of them

    3. The U.S. also has a clinical modification of the ICD, for use in the U.S. The current version is the ICD-9-CM where CFS is listed under "Signs and Symptoms/ Chronic Fatigue, unspecified". The current draft of ICD-10-CM, which is due to be implemented in 2013, also lists CFS under "Signs and Symptoms/ Chronic Fatigue, unspecified", not as a neurological disease. This means that the U.S. is the only country in the world that lists CFS under "Chronic Fatigue, unspecified". Everywhere else, CFS is listed as a neurological disease

    4. The Coalition proposal is to move CFS from "Signs and Symptoms/ Chronic Fatigue, unspecified" to 'Diseases of the Nervous System" G93.3 where PVFS and ME are. This does not change where ME is, it changes where CFS is. For U.S. citizens, this is significant since patients that meet ME-ICC criteria are given a diagnosis of CFS, not ME. Based on feedback provided at the ICD Coordination and Maintenance Committee meeting plus patient feedback, it appears that ME is rarely if ever used. It also appears that there are no disability guidelines for ME.

    5. Two options were proposed by the ICD Coordination and Maintenance Committee on how to best move CFS into G93.3. A third option was presented by the coalition.
    Option 1 - PVFS, ME and CFS all use the same code G93.3
    Option 2 - PVFS and ME use code G93.31 (for viral triggers) and CFS uses the code G93.32 (for bacterial and other pathogenic triggers)
    Option 3 - PCFS uses code G93.31 and ME and GFS use code G93.32.
    All other countries essentially use what is proposed in Option 1 here. However, the ICD Coordination and Maintenance Committee doesnt want to lose the loose the historical data on PVFS and CFS by lumping them together (remember ME is rarely if ever used). The Coalition has proposed option 3 because patients that meet ME-ICC criteria are given a diagnosis of CFS regardless of whether the trigger is viral or not

    6. Note that 'Chronic Fatigue, unspecified" will continue to be listed under "Signs and Symptoms" and can be used for patients that have chronic fatigue from any cause as opposed to the disease specified in the ME-ICC.
     
  8. Jill McLaughlin

    Jill McLaughlin *****

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    Tina, why was this not put out for comment or even mentioned? That MCWPA
    knockoff group is supposed to be patient run and all by vote. Yes this
    is a serious issue and should have been given far more consideration and
    certainly more clarity than this.

    It is not nice to publicly intimidate patients, but if this is the way you so choose,
    then you are absolutely incorrect and should delete or remove your post.
    Feel free to call me.

    Jill

    ----

     
  9. danderson0352

    danderson0352

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    Tina,
    What makes you think that the government is going to allow CFS to be moved to G93.3...CFS does not qualify to be listed in this category as the definition for CFS has not been changed from the CDC's definition of CFS. We do not live in Canada, and the United States does not accept the CCC as a definition for CFS here in the US. It does not matter how much the research shows on CFS which would qualify it for G93.3. What matters is that our government is not changing their definition ( and we have been told that) so CFS does not qualify. This proposal puts the cart before the horse. You should have worked on changing the definition which would include neurological and CNS damage, and getting it accepted BEFORE trying to get it coded differently. What a complete waste of energy.
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    CFSAC

    The proposal is in harmony with the CFSAC recommendations in 2004 and May 2011. Even Dr. Nancy Klimas, an immunologist, agreed with the recommendation. The failures from having CFS (no matter which criteria you use) put into "unspecified fatigue" has been a topic among physicians and researchers in the US for years. Wessley is trying to do away with ME because it is neurological. But, hey, if he keeps saying it is CFS, not ME, then his argument loses when CFS is neurological too. And, most of the studies on the neurological abnormalities are in CFS according to Fukuda criteria. There is more science to back it up.

    The coalition is an association of non-profit organizations, which is totally different from MCWPA.

    Every individual, every patient, every non-profit organization had the opportunity to make their own proposal. Anyone in the whole US can make proposals to the committee. The coalition of organizations discussed among its organization representatives how to help accomplish what the CFSAC recommended. They really just are following through on what the CFSAC wants, especially Lenny Jason, who is very upset with the Fukuda criteria. But he is the one who made the motion that the CFSAC recommend moving CFS to neurological, under ME.

    The coalition could have not told patients anything at all, to this day. They could have just asked physicians to make comments. The only way you know about the comment time now is because the coalition informed the patients about it. The coalition encouraged patients to listen to the presentation so they could give comments after it. PANDORA sent an email notifying the patient community so they could listen. The comment period is open until November 18. There is no hiding here. There is no hiding here. There is only volunteers working to improve the quality of life for the many in the US who have the CFS diagnosis, which includes many with ME who can't get an ME diagnosis. And they are doing it the same as other coalitions, with reps from the member organizations participating in the discussion, planning an action, and volunteering or hiring employees to carry it out. It would be vary hard to ask patients to send in comments until we know if it is even on the agenda or you can hear the presentation or the proposal. Within a few days, a copy of the slide presentation and the recording of the presentation will be put out for the public. The only reason you will get to hear a recording is because I took it upon myself to listen to the meeting, including hours that morning, use my tape recorder, so you can hear it at your convenience. The slides are going to be shown to you, which is not necessary. There is no hiding here. And you can look at all the documents now because the coalition has posted them.

    Why do many people with depression get included in CFS in research? Reason.... because it is not thought of as an organic (in the organs) disease. Why is it not thought of that way? It is because it is listed under "fatigue, undefined." How will it be thought of if it is under diseases of the nervous system? It will be thought of a disorder in the brain / nervous system.

    Now, the UK is trying to corrupt ME by associating it with CFS. But that is because CFS is not in neurological. If CFS is moved to neurological, then they lose their push for ME, or CFS to be psychological, and we can get all those who only have psychological illness out of the CFS diagnosis. We can get neurological tests part of the research criteria for CFS. And we need the research criteria for CFS to be narrow, just as Lenny Jason says. Why? Because most of the research internationally is using CFS, Fukuda. So let's get Fukuda changed to reflect the vast neurological studies into CFS. How do we get these as part of the research criteria? First step, get it listed as neurological in the US CM.

    Ric, the reason the coalition's proposal does not mention "ME" is because the coalition does not want ME to be changed. It is in the ICD-10-CM under neurological and the coalition does not want that to change. The Option 2 is not the proposal from the coalition. It is a suggestion from the NCHS.

    Samples of some studies in the scientific literature:
    A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis- Barnden et al.
    Brain MRI abnormalities exist in a subset of patients with chronic fatigue syndrome (the group that had the abnormalities were CFS patients without a comorbid psychiatric illness) Lang, G et al.
    Neuropsychology of chronic fatigue syndrome (showed cognitive problems are likely because of an abnormality in the white matter.) Tiersky LA et al.
    Brain MR in chronic fatigue syndrome (showed MR pattern is abnormal and distinctive to CFS) Greco A. et al.
    Detection of intracranial abnormalities in patients with chronic fatigue syndrome: comparison of MR imaging and SPECT (showed SPECT scans show abnormalities in brains of most CFS patients.)

    Well, that's enough. I could go on and on. The medical literature on brain abnormalities in CFS is long, more than the ones in ME. Why? Because CFS is what researchers use. So let's get CFS in the neurological codes.

    I was looking at the minutes of the CFSAC meeting and it looks like Dr. Wanda Jones mentioned the opportunity for anyone to make proposals to the NCHS. See page 27 http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-meeting-minutes_20110510.pdf This is how the coalition members came to know of the opportunity, they listened to the meeting.

    By the way, you might want to look at the minutes of the discussion in the CFSAC about this issue. It is on page 27 of the minutes: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-meeting-minutes_20110510.pdf I see that Dr. Jason said that if CFS is put in general fatigue, unspecified, it will have negative implications on ME patients too. (See page 28) That is an interesting point. Part of that is because of the proposed DSM-5 changes.

    I notice that Mr. Krafchick said having CFS in general, unspecified fatigue would be "disastrous" to patients.

    Also, I note that Mary Schweitzer said that putting chronic fatigue syndrome under "general fatigue, unspecified" was supported by Reeves of the CDC. (Another good reason to get it over into the nervous system disease section.)

    You can also watch the video of the discussion at the CFSAC here: http://nih.granicus.com/MediaPlayer.php?view_id=26&clip_id=224 The part about ICD starts at 4:27:45.

    Tina
     
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  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If you listen to the recording, you will see that all three who spoke, spoke in favor of moving it to neurological. And the coalition members did not know if they could get it on the agenda. They did not know how the proposal or presentation would be accepted. But they tried because another opportunity to do it will not come until 2014. That's right. We would be stuck in "general fatigue, unspecified" for three more years. (I say "we" in reference to all of us in US with CFS diagnosis, large majority of us.

    But whether the coalition thought they had a chance or not, they did it to help with the efforts from noted experts, including Komaroff who continually says CFS is neurological, the CFSAC committee members and others. The CFSAC has limitations though. They made their recommendations. It was up to someone else to make the proposal to the NCHS. So, the coalition did it because the member organizations recognize the great harm done to patients to be put (or remain) in a vague "fatigue" category.

    You may recognize some names here of those who sat on the CFSAC when the recommendations were made (in 2004 and 2011): Dr David Bell - Nancy Butler - Dr. Kenneth Friedman - Dr Nelson Gantz - Dr. Anthony Komaroff Dr. Charles Lapp - Dr. Nahid Mohagheghpour - Dr. Roberto - Patarca Staci R. Stevens - Dr. Dane B. Cook Dr. Jordan D. Dimitrakov - Eileen Holderman - Dr. Michael Houghton - Dr. Leonard Jason - Steven P. Krafchick - Dr. Nancy Klimas - Dr. Susan M. Levine - Dr. Gailen D. Marshall Jr. - Dr. Christopher Snell

    Reason why government would make the change:
    #1. The committee making the coding decisions are completely separate from the CFS department of the CDC. Just as there is friction and disagreement between NIH and CDC concerning CFS (using different terminology for the disease, even) because one part of government feels a certain way does not mean the whole US government agrees.
    #2. Refusing to do so would be embarrassing to this committee as it would make the US the only country going contrary to the ICD-10 in their CM version, and it would make tracking the illness confusing between countries, while the very purpose of the ICD is to lessen confusion in tracking illness health statistics between countries. The change meets the goals of this committee.
    #3. Most all countries do not use CCC. But all other countries have CFS in neurological in their coding. The criteria is not part of the discussion of this committee. They look at the scientific literature to see if it is justified and how it impacts health statistic tracking and physicians trying to do their work. An example was given with pain. Some pain conditions have been moved to neurological categories, before anything was done to criteria. It was based on recent scientific discoveries. The criteria has greater importance in research. In diagnosing and treatments, the doctor puts the diagnosis he chooses, based on whatever he decides, criteria or no criteria. I know. I did not meet the criteria for a diagnosis, but unbeknownst to me, a physician I went to put something wrong down as my diagnosis on my records. Also, many of those in US have ME, but they receive the CFS diagnosis.
    #4. As you said, the "government," in this case, the CFS department of the CDC, has been resistant to changing the criteria. So, that is not winnable at this time. But, if the NCHS (another part of government) puts it in neurological, then pressure will build to change the criteria. Patients do not have the influence to change the definition. Scientists do that. But we can help them. And this will help these scientists, strengthen their argument. You will see when you listen to the recording that it is absolutely possible. As I said, the NCHS is concerned with health statistics and coding that is useful to physicians. The confusing of CFS with depression is a strong reason for them to change it. They do not like people getting the wrong diagnosis as a result of coding. In fact, anyone making comments to NCHS in support of the proposal might mention the confusion in diagnosing people appropriately as a reason to make the change.
    #5. The science backs it up and this committee is concerned with the science.

    Tina
     
    ixchelkali likes this.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Anyone who would like to be a part of the discussion of the coalition's future actions should approach one of the member organizations and ask if they can represent that organization on the coalition. It will be up to that organization if they want you to represent them on the coalition. Here are a list of the member organizations: http://coalition4mecfs.org/organizations.html

    Tina
     
  13. rlc

    rlc Senior Member

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    Hi usedtobeperkytina, so the stated ultimate goal is that the term "chronic fatigue syndrome" be retired.

    So what you saying is the plan to get rid of CFS, is to first get it carved in stone in the ICD as a serious Neurological disease, and then what are you going to do. Call the ICD and say high its the coalition 4 ME/CFS here again you know how we put all that pressure on for you to make CFS a neurological disease, well know weve decided that we dont want it in the ICD at all, would you mind changing it again for us, Is everybody in the Coalition 4 ME/CFS completely insane!!!
    If these idiots get this through everybody in the US will be stuck with CFS for ever.

    Saying that you want to get CFS enshrined in the ICD as a Neurological disorder as a way of getting rid of it, defies any logical thought and is one of the stupidest things I have ever heard in my life.

    If you want CFS retired you should be making it known that you want it to be removed from the ICD. And providing evidence from the likes of Drs Hyde and Mirza that shows that when CFS patients are properly tested they always find that CFS patients are misdiagnosed and have really been suffering from other known diseases, and you should be getting this information to the press and politicians so as to force a change.

    RE only by showing that CFS is the inaccurate and poorly defined criteria for the real disease, ME, will we get that accomplished.

    How on earth is getting CFS coded as a Neurological disorder, going to show that CFS is an inaccurate and poorly defined criteria for the real disease ME.
    What youre doing is agreeing with the invention of CFS, and saying it should get a more serious coding, that will put it on exactly the same level as ME, which will only increase the confusion between the two!!

    The ICD was already planning to put ME is the USA ICD and give it its correct coding, The coalition 4 me/CFS should have been supporting this not trying to elevate CFS to the same level. It is a ridiculous idea.

    The idea that giving CFS a neurological coding will somehow get rid of all the people who have other diseases that are mixed up in the group is pure fantasy!!! All that is going to happen is that tens of thousands of doctors across the USA are going to have to waste 5 seconds of their lives changing the code on the patients files. If the Coalition 4 ME/CFS wanted to do something useful to get rid of all the misdiagnosed, they should be petitioning the CDC to dramatically increase the amount of testing that has be done before anyone can get a CFS diagnosis. Because as the work of Drs Hyde and Mirza shows there is not a disease called CFS, there is ME and whole lot of misdiagnosed people with a vast array of different conditions a lot of whom are dying needlessly while groups like the coalition 4 ME/CFS waste everybodys time dreaming up these ridiculous proposals.

    All this proposal will do is guarantee that the USA is stuck with CFS for decades, and all the money will continue to be wasted on CFS and ME will yet again be left with nothing.

    RE Studies into ME and studies into CFS both show neurological abnormalities. So, we now have solid foundation to make the request now.

    If you would care to read the ICC you will find that the studies that show neurological abnormalities are for ME not CFS.

    And I do believe that you just said that.

    only by showing that CFS is the inaccurate and poorly defined criteria for the real disease, ME, will we get that accomplished.

    And now you are trying to say that CFS is a real disease with Neurological abnormalities!

    I sorry but you are not even making any sense and are contradicting yourself.

    Re by putting CFS in the same area as ME, we are one step closer to getting ME to replace CFS.

    This statement is illogical, ME is planned to be coded correctly, giving CFS the same code will not help in the slightest, CFS is not a neurological disease, it is not even a disease it is a collection of symptoms that are commonly found in hundreds of medical conditions, elevating a waste basket diagnosis to the level of a Neurological disease is madness!!!!

    CFS is far better left as Signs and Symptoms/Chronic Fatigue, Unspecified" because that is what it is!

    Ring Jill if you have any more questions

    All the best
     
  14. Dainty

    Dainty Senior Member

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    Looks like a cool down period is in order. Thread temporarily locked.
     
    Nielk likes this.
  15. Dainty

    Dainty Senior Member

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    Thread re-opened - please keep the focus on the issues and don't forget about the brain fog factor amidst attempts to understand each other. :Retro smile:
     
  16. rlc

    rlc Senior Member

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    HOW TO OPPOSE THE COALITION 4 ME/CFS PROPOSAL!!!!!!!!!!!!!

    The first thing that people need to realise is that the Coalition 4 ME/CFS are telling everyone that the cut of date for Comments about the coalition 4 ME/CFS proposals is November the 18th and are asking for comments to be sent to PANDORA.
    there is no truth in what they are saying.

    The cut of date for submissions is October the 7th!!! You only have twenty days to oppose the proposal, not the 62 days that the Coalition 4 ME/CFS is leading you to believe.

    See page 2 here http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    October 7, 2011 Deadline for receipt of public comments on proposed code revisions discussed at the September 14, 2011 ICD-9-CM Coordination and Maintenance Committee meetings for implementation on April 1, 2012.

    Submissions are not to be sent to Pandora at all, theyre deceiving you. Submissions have to be sent to this person at the CDC

    Please email, telephone or fax Donnamarie Pickett before Oct. 7
    Last name Pickett
    First name Donnamaria
    Agency CDC
    Organization DHHS/CDC/OSELS/NCHS/OD/CPHDSS
    Job title MEDICAL SYSTEMS ADMINISTRATION
    Building HYAT
    Room NCHS
    Duty station Hyattsville MD 20782
    Phone 301.458.4434
    Fax 301.458.4022
    Internet e-mail donnamaria.pickett@cdc.hhs.gov

    Do NOT send submissions to Pandora!!! And send before October the 7th!!!!!!!

    The USA ICD-10 3 which is planned to be in use soon

    Under diseases of the nervous system code G.93.3 currently has ME and Post Viral Fatigue Syndrome!!!

    ME is about to be officially recognized by the USA ICD-10 as a real disease, and this will be the guidelines used by doctors and the insurance companies.

    You should not believe the spin that the Coalition 4 ME/CFS is putting on its proposal, just as you should not believe what their saying about where you should send submissions.

    This is the Coalition 4 ME/CFS proposal, which you can read on page 10 here http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    Option 1 (proposed by Coalition 4 ME/CFS):
    G93 Other disorders of brain
    G93.3 Postviral fatigue syndrome
    Then they go on about the changes they want to make

    Add Chronic fatigue syndrome

    Delete Excludes1: chronic fatigue syndrome NOS (R53.82)

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified

    Delete Chronic fatigue syndrome NOS

    Add Excludes 1: chronic fatigue syndrome (G93.3)

    This is what they are proposing that USA ICD-10 code G.93.3 should be.
    With no ME!!!!!! PVFS retained and CFS added, it is what their proposal says in black and white.

    You can clearly see that there proposal says that they want code G.93.3 to be
    G93 Other disorders of brain
    G93.3 Postviral fatigue syndrome
    Add Chronic fatigue syndrome

    They proposal not only leaves ME out of code G.93.3 but from the ICD-10 completely, and CFS replaces ME in code G.93.3 and PVFS remains
    If this is allowed to happen then the first chance of ME being officially recognised in the USA since 1988 will be obliterated, and the waste basket diagnosis CFS will be wrongly raised to the status of a Neurological disease!

    It will leave you with only two options as a diagnosis CFS or PVFS, if they hadnt interfered in the process.

    The USA ICD-10 codes would read.
    Code G.93.3
    Benign Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome,

    Giving ME its correct status as a Neurological disease.

    The Coalition 4 ME/CFS has never supported ME being recognised and have continually denied its existence, Instead they continually try to make out the CFS is the same as ME by using the name ME/CFS as if they are somehow the same illness, if you check out what the CAA has to say about the Coalition 4 ME/CFS proposal, you will find that they are completely behind it!!!!! The CAA helped the CDC get ME destroyed as a diagnosis back in the 1980s!!! And made sure that ME was replaced by CFS!!!! They are run by ex CDC members and have taken Millions of dollars from the CDC to promote CFS and deny the existence of ME, which they are still doing, if you look on their website you will see that they are lying about what the ICC is saying, and making up that it says this,

    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.

    This is total bullshit the ICC is saying that ME and CFS are two totally different illnesses and should be separated, the likes of Pandora and these other orgs are just of shoots from the CAA, they are all mouth pieces for the CDC, promoting the waste basket disease CFS and denying the existence of ME, which they have been doing for decades.

    People may like to wonder why it is for the first time in the history of the medicine, that the CDC is allowing patient advocacy groups to tell them how a disease should be coded!!! Diseases are coded by doctors and scientists, not patient advocacy groups!!! The CDC has never wanted ME recognised and these US orgs are just an extension of the CDC and are doing their job for them, trying to stop ME being recognised and falsely raising CFS to the level of a Neurological disease, and trying to con the patients that theyre on their side, while ripping ME patients off and taking their donations.

    The coalition 4 ME/CFS is also deceiving people by saying that they want CFS in code G.93.3 so that it has the same code as it has in the World health organization ICD codes used by the rest of the world.

    The reality of what the WHO really says about CFS is this

    Only ME and PVFS are listed in the Tabular list, which is the main body of the WHO codes, CFS is NOT included there.

    CFS is only listed in the alphabetical index and only in the CD ROM and Book form it is not listed online at all.

    ICD-10 does not say that 'CFS' is synonymous with M.E

    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).

    So the WHO does NOT classify CFS under G.93.3 in the tabular list,

    It is an afterthought stuck in the alphabetical index, which they say people can see as just being an 'imprecise and undesirable term' or 'a rubric for ill-defined conditions!!!!

    There is no reputable medical source on the planet that interoperates the WHO having CFS in the alphabetical index as meaning that it is a Neurological illness, for an illness to be properly recognizes it has to be in the Tabular list.

    There is not a single country on the planet that recognize CFS as a Neurological illness, because the WHO codes do not say that it is!!!

    The Coalition 4 ME/CFS has their facts completely wrong!!!! And are planning to elevate CFS to a level far higher than it is in the WHO, which will imply to everyone that it is the same as ME, this will help no one and should not be allowed to happen, and if this coalition cant even get their facts right they should not be allowed to represent sick people!!!! It is disgraceful!!!!!

    I strongly urge everyone to submit objections to the Coalition 4 ME/CFS proposal to change the ICD codes.

    To make it very clear that these so called patient organisations do not represent you or the views of the patient community, and that they have sneakily and underhandedly submitted their proposal, without letting anyone know about it, or consulting with any of the people they are falsely claiming to represent (this includes Cort and Phoenix rising) and that they have been distributing false information on where to send comments to, in an attempt to stop you voicing your objection.

    Let them know that you desire that ME remain coded as G.93.3, which will put it in line with the WHO Tabular Listing.

    And that you also object to the NCHS proposal to delete ME from code G.93.3 and give it a new code G.93.31 because they will mean it is no longer aligned with the WHO codes.

    That in no uncertain terms, you do not support either the Coalition 4 ME/CFS or the NCHS proposal to move CFS into the G codes for other disorders of the brain.

    And point out that all of the criteria for CFS including those of the CDC state that CFS is not a disorder of the brain, it is a chronic fatigue illness, of no known cause! and that if any patient was found to have a neurological disorder according to the CDC own criteria for CFS it would immediately disqualify them from being eligible to be diagnosed with CFS, the CDC CFS definition state that anybody found to have any form of measurable testable illness including those of the Brain are not to be given a CFS diagnosis!!!

    Point out that the Coalition 4 ME/CFS are misrepresenting the facts and that the ICC, link http://www.meassociation.org.uk/?p=7173 ,shows that the Neurological abnormalities that have been found, are being found in ME NOT CFS patients. And that the ICC states that patients with ME have a Neurological illness and that it is a different disease to CFS which is a fatigue illness and that CFS patients are to continue to be diagnosed as CFS under the CDC and NICE guidelines, which state that people who have any form of measurable illness including brain disorders are ineligible for a CFS diagnoses!!!

    Now I sure ever reasonable person including myself would love to get the name CFS dropped for ever, and not enshrined in the ICD as a Neurological disorder!!(Because coding a wastebasket diagnosis a Neurological illness is Lunacy!!!)

    However just asking them to get rid of CFS in the ICD is not likely to achieve anything.

    The coding that CFS presently has is actually an accurate description of it,

    Signs and symptoms/chronic fatigue unspecified,

    A large group of people suffering from chronic fatigue, who havent had the cause of their suffering Specified!!! Because doctors are following the woeful guide on what to test for as laid out by the CDC, and have left these poor people to suffer without their correct diagnosis being found.

    We need to get these people properly tested so that they get their correct diagnosis. We need to be asking the CDC to dramatically expand the testing before anyone gets a CFS diagnosis, if this can be achieved, then CFS will be destroyed because it is not a disease! It is a collection of misdiagnosed people with a large assortment of different fatigue causing illness, if they all get tested and diagnosed properly CFS will disappear!

    I recommend that people ask for CFS to remain coded as Chronic fatigue unspecified, code R.53.82, because this will keep it miles away from ME and the G.93 codes.

    But seeing as you will be sending your objections directly to the CDC (NOT PANDORA) I recommend that people as well as asking for CFS to remain coded as R.53.82. That you demand that the CDC immediately start putting together a far larger set of tests to rule out other diseases before a CFS diagnoses can be given

    And that you include this article that explains how bad the CDC testing is, and what should be done, and ask that they work with this doctor to come up with a new set of test to rule out other diseases ( he mentions other additional tests in other articles of his) before a CFS diagnosis is given. If this was achieved it would give hundreds of thousands of people across the USA the right diagnosis and destroy CFS once and for all.

    The doctor in question is Dr Shirwan A Mirza MD,FACP, FACP, Clinical Assistant Professor, Auburn Memorial Hospital, and Private Pratice.
    Dr Mirza can be contacted here 315-253-2669
    399 Grant Avenue Road Auburn, NY 13021

    The original article can be found by scrolling down this page http://www.bmj.com/content/334/7605/1221.extract/reply

    1. The myth of Chronic Fatgue Syndrome
    o Shirwan A. Mirza, MD, FACP, FACE, Pivate Ptactice
    o None
    Auburn, NY 13021 USA

    It pains me to see the concept of Chronic Fatigue Syndrome (CFS) promoted by individuals and organizations alike, including a prestigious US Government Agency such as CDC (Center for Disease Control). I do not recall using CFS as a diagnosis. The reason is simple, I go beyond the CDC criteria in investigating chronic fatigue. In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher jump to a speedy conclusion that the patient under discussion has depression. That is exactly what patients dislike about our diagnostic acumen, attributing major symptoms in their life to mental diseases without first exhausting all the underlying physical ailments.

    I have yet to see a diagnostic criteria list for fatigue that is complete. This unfortunately includes the diagnostic criteria for Chronic Fatigue Syndrome issued by CDC. No wonder we keep citing CFS as a cause for fatigue when we ourselves fail to pinpoint the diagnosis. In my endocrine practice after ruling out the obvious causes of fatigue (mentioned in this 10-minute consultation, I will also add adrenal insufficiency which is an autoimmune disease not mentioned by name in the mini consultation), I will do the following tests and I almost always find the cause for fatigue:

    1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.

    2. Check glucose tolerance test on people who are obese, have family history of diabetes, and have nocturia, or polyuria. The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. If you do not use these diagnostic thresholds, you will miss the diagnosis of diabetes, or impaired fasting glucose, or impaired glucose tolerance. The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both can cause severe fatigue if remained undiagnosed. The mechanism is through loss of glucose (body's fuel) in the urine (Glycosuria>
    Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 mol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.

    3. In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). Vitamin D deficiency is responsible for calcium and phosphorus absorption (among other host of other functions). Lack of phosphorus means lack of ATP in the body, which means that you feel tired. I have helped thousands of victims of this type of chronic fatigue through vigorous vitamin D supplementation. Not to mention that vitamin D deficiency causes also severe myalgia and bone pains (osteomalacia), often missed since vitamin D deficiency is not on the list of differential diagnosis of fatigue, including (tragically) the CDC list. Failure to recognize vitamin D deficiency leads you to misdiagnosing patients as CFS and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed. The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.

    4. Sleep deprivation is a very common cause of fatigue. This was mentioned in the 10-minute consult.

    5. Celiac disease is relatively common (~1% of Caucasians have it, most of them undiagnosed). If you don't think of Celiac, you will be an easy victim in the trap of CFS. Celiac can cause pan-malabsorption of iron, vitamin D, B12 (mentioned above) in addition to other nutrients and minerals.

    6. If iron saturation is high, perform genetic testing for hemochromatosis. This is another relatively common genetic disease in the Caucasians.

    Any list that does not address the above diagnoses (with the reference ranges that I mentioned), would lead to missing the root causes of fatigue. CFS is not a diagnosis; it is merely re-labeling fatigue with a fancier name. It is the time that CDC revisited the criteria of CFS, and included the causes I cited above. I can say with confidence, backed up with data of hundreds, or even thousands of patients with fatigue who I have helped over years, that patients with chronic fatigue syndrome are patients who have not been adequately worked up in accordance with the criteria mentioned above. It is for this reason that CFS is not in my medical vocabulary.

    Competing interests: None declared

    I am not the only person who is strongly objecting to this Coalition 4 ME/CFS proposal word about it is spreading across the internet like wildfire, and large numbers of people will be submitting objections to it!!!! Check out http://www.mecfsforums.com/index.php/topic,9414.0.html

    I also recommend that people also send their objections to the press, and let the world know what is going on! So the Coalition 4 ME/CFS and the CDC cant get this passed in secret.

    I also recommend contact your senators and other government representatives; their contact details can be found here http://www.usa.gov/Contact/Elected.shtml

    Here are the Email addresses for a large amount of US media outlets
    All the best

    1. US TV networks
    CNN US
    http://edition.cnn.com/feedback/dotcom/
    ABC US
    http://abcnews.go.com/Site/page?id=3068843
    CBS US
    http://www.cbsnews.com/stories/1998/...ain15218.shtml
    FOX US
    http://www.foxnews.com/story/0,2933,77538,00.html
    NBC US
    http://www.msnbc.msn.com/id/3303518/
    US Newspapers
    Washington Post US
    http://projects.washingtonpost.com/staff/email/
    Washington Times Us
    http://www.washingtontimes.com/contact-us/
    Chicago Sun-Times Us
    http://www.suntimes.com/aboutus/contactus/
    Chicago Tribune US
    http://www.chicagotribune.com/about/...5235.htmlstory
    Boston Globe
    http://bostonglobe.com/aboutus/contact_us/default.aspx
    Detroit News
    http://detnews.com/article/99999999/...e-Detroit-News
    New York Post
    http://www.nypost.com/contact/contactus.htm
    New York Times
    http://www.nytimes.com/ref/membercen...directory.html
    Wall Street Journal
    http://online.wsj.com/public/page/contact_us.html
    http://help.wsj.com/contact-us/
    Los Angeles Times US
    http://www.latimes.com/about/mediagr...8915.htmlstory
    San Francisco chronicle US
    http://www.sfgate.com/chronicle/info/e-mail/
    San Francisco examiner US
    http://www.sfexaminer.com/info/contact
    The Denver Post Us
    http://www.denverpost.com/contactus
    The Dallas morning news
    http://www.dallasnews.com/news-tips/
     
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    CFS is already "carved" into the ICD-9-CM and the ICD-10-CM. But it is in the wrong place to reflect what the science says about CFS, and that includes Dr. Nancy Klimas', Natelson's studies and WPI's studies. It doesn't reflect the disease, the one that is labeled and coded in their medical records as "chronic fatigue syndrome."

    In ICD-9-CM, it is under "Symptoms, Signs and Ill Defined Conditions." 780.71

    In ICD-10-CM, it is under "Symptoms, signs and abnormal clinical and laboratory finding not elsewhere classified" R53.82

    The proposal is to have it in 323.9 in ICD-9-CM, where ME is. Clearly not removing ME. Just putting CFS under ME. There are already two others under ME.

    The proposal is to also have CFS in G93.3 in the ICD-10-CM, where post-viral fatigue syndrome and benign myalgic encephalomyelitis is.

    Basically, it's taking CFS out of what you and others described as "wastebasket" condition, a "we don't know what it is, but the person says their tired" category to one that reflects the many studies that show the neurological abnormalities in CFS patients. (Notice, I said "CFS" patients because there are many studies - listed a couple of them earlier - that show neurological abnormalities in CFS patients. I can go find others if needed.)

    See page 16 for that portion: http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf

    It has been made very clear to many, those who met with CDC, the comments of those on the committee, etc., that CFS will not go away because of the "data" tied to it.

    But, we can put it as neurological, under ME, and then, we can push for ME to be the name used and the ME-ICC to be the proper criteria for the disease. And then CFS will fade away as it is not the preferred name or criteria for the disease. As you said, as CFS is now, it is not a disease. But we can change that.

    And and all who want to do away with CFS, with all the research, government departments (jobs) and money tied to it, through campaigning to do away with it, please do. I would love to see the strategy for how you will do that when it has its own classification, separate from ME, is carved into the institutions. Getting CFS to go away is the ultimate goal. However, as Lenny Jason said in his recent paper, improvements are made gradually, by winning one battle at a time. As any general will tell you, the war is made up of many small battles. It was a win to get CFS in the Soc. Sec. as a biomedical condition, requiring objective medical tests, instead of as a psychological condition. It was a small win to get CFS in the Congressional budget. It was a small win to get the NIH to recognize the Canadian Consensus Criteria and call the illness "ME/CFS." The next step, is to make "CFS" and the Fukuda irrelevant, show that we don't need Fukuda or "CFS" because the disease is ME.

    By putting them together, we are one step closer to showing ME is the real disease. Otherwise, we will continue to have two different illnesses, one of which doesn't exist in all practicality in the US and the other that is "general fatigue of ill-defined condition." The goal is to convince that there is one disease, the one they call CFS, but is actually ME and the ME-ICC criteria is best criteria. It's evolution, not revolution. And that is the goal of ME-ICC too. In the first sentence of the abstract it says that CFS has been used but it is not based on current knowledge. It says that the best term is ME. It is not recommending two different diseases or conditions. So keeping CFS in a separate category will hurt the goals of ME-ICC.

    Another factor is that the DSM is creating a new category of CSSD (a combination of somatization disorders, including hypochondria, into one new condition). This category would likely be applied to CFS patients if they are suffering from "signs, symptoms of ill-defined condition." But, if CFS is neurological, then it is not somatization or hypochondria, it is a disease of the brain. So I ask all those in the US, do you want to end up being put into a psychological classification with hypochondria because your illness, CFS, is "signs, symptoms of ill-defined condition"? While at the same time you have to try to get your doctor to diagnose you as having ME, when neurologists in the US doesn't even know ME exist?

    The other option is to be able to take the ICD-10-CM code book to your doctor and say, "See, now it is known my illness, CFS, is neurological."

    If approved, this proposal will weed out the depressed people from CFS as the neurological abnormalities will become the focus. It will give more credibility to the ME-ICC that the illness is really ME and should be called ME with the better criteria.

    The ICD-10 already has ME in the US under neurological. But, the ICD-10-CM (for clinicians and insurance claims) does not have it in neurological. It would be the only country that has their CM contrary to the ICD-10.

    I read the ICC, and I notice the argument for saying the illness that they say should be called ME, in its reasons, refers to many studies on CFS and the neurological abnormalities. They are saying the disease, which should not be called CFS but should be called ME, has neurological abnormalities.

    I am sorry for the long post. I am afraid ric and I are at an impass. If anyone posts inaccurate info or if anyone else has questions, I will respond. Thank you ric for giving an opportunity to explain it. I have had some tell me privately they hated to see me spending so much time doing this, but they understand the proposal much better because Mary and I have spent time on this and another message board responding to challenges and misinformation.

    Within the next couple of days, the Power Point slides of the presentation and a recording of the presentation will be made available to you. In the mean time, you can read about it....

    FAQ: http://coalition4mecfs.org/ICDFAQ.html
    The announcement: http://coalition4mecfs.org/ICDPR.html
    A summary for the ME/CFS community: http://coalition4mecfs.org/ICD.html
    The proposal: http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf
    An update in light of the ME-ICC: http://coalition4mecfs.org/ICDCFSUpdate1-MEICCAug1-2011.pdf

    Tina
     
  18. SOC

    SOC Moderator and Senior Member

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    USA
    Thanks Tina, for all your hard work explaining this effort.

    This is probably the biggest issue we have with "eliminating" CFS:
    The research world is not going to dump all the 'CFS' research into the garbage, nor do we want them to. Research/data generated by important US researchers like Drs Klimas, Komaroff, Mikovitz, and Lo (and many others) is referenced to 'CFS'. That's what it's called in the US, like it or not. We can't make that disappear -- the research is already published. What we can do it connect it to the proper ICD codes. After that it can be argued that the better name is ME (or whatever), but we can't argue that they're the same disease if they're in different categories.

    This is a logical and pragmatic decision.

    Perhaps some of the confusion arises from the fact that CFS is the only official diagnosis for our illness in the US. ME is not officially recognized in the US. The research done in the US, therefore, is on 'CFS', not ME. By moving 'CFS' under 'ME' we incorporating all the existing research -- which we want to do.

    Maybe in other countries 'CFS' is a different diagnosis from 'ME', which could be confusing some people. The whole thing is a mess, no doubt about it. It seems to me, though, that coalition4mecfs's proposal is our most feasible first step to cleaning up some of the mess.
     
  19. Ember

    Ember Senior Member

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    The goals may be the same, but the two strategies are certainly very different. The ICC removes ME patients from Reeves. As I understand it, the Coalition 4 ME/CFS proposal would place CFS (now presumably devoid of ME patients) under ME. Isn't it illogical that an illness, now defined as being devoid of ME patients, should be classified under ME?

    Are you saying that CFS will have to wither away because the classification you propose is so illogical? The concern I hear is that rather than undermining the status of CFS, your strategy might undermine the status of ME instead, just as it is finally being established.
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Thank you sickofcfs and Ember.

    The problem is the opposite of what you say, Ember, is true in practice in the US. ME is hardly ever diagnosed in US. No criteria from CDC for it. No funding for research. Not taught in medical schools. Not listed in studies from US. So, all those in US with ME are given the CFS diagnosis.

    The psychologizers want CFS separate and then they can say all those with ME really have CFS, which is vague and we don't know what it is, just bunch of symptoms with no biological abnormalities. This seems to be the approach of the UK folks. That is already a reality in US. But, this change will allow us to say, use CFS Fukuda or ME or PVFS, whichever you use, it isn't psychological, it is neurological. It will allow us to demand neurological tests that are supported by scientific research, no matter whether you diagnose us with CFS or ME or PVFS. And it will put pressure on insurance companies to cover these neurological tests. So, the UK won't be able to put the CFS label and bad criteria on us to push us into the psychological, which is already the case in the US and will be made worse if the change in the DSM is accepted. (by the way, many patient organizations and the coalition wrote in opposition of this new category in the DSM. Now, fibromyalgia and Lyme organizations have realized the threat it poses. This is a fight on two fronts, DSM and ICD-10-CM)

    Tina
     

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