CFSAC Agenda is up!
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Hope123
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This was discussed yesterday and the details escape me but the gist of it was CFSAC passed a resolution against putting ME/CFS under the "R" group, basically so it would not be lumped in along with "chronically complex somatic symptoms" disorders and pooh-poohed as a psychiatric/ psychological disorder.
Also, they talked a bit about how the US method of coding differs from the WHO and sometimes goes its own way in coding things so what happens on the international level doesn't impact the US in the same manner. [American exceptionalism if you will]
They also mentioned that the ICD-10 committee in the US was away at a big conference so their leader could not attend but that the US ICD-10 group holds 2 meetings a year and does invite public testimony, although CFSAC didn't have the exact dates of the meeting. I think Dr. Jones mentioned they would try to find out and post the dates later on. The erroneous date of 9/14 and 9/15 was brought up but later found to be wrong.
The main contact for ICD-10 is Donna Pickett [phonetic spelling here on my part] at the National Center for Health Statistics at the CDC. I have enough stuff to follow-up and haven't followed this issue but someone else who is more versed on these issues can do so.
SpecialK82
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Yep all the testimony's are so good - I loved the woman that started the CFS support group in Michigan and she talked about 3 of her friends that had died due to this illness and she emphasized the death with actually shoveling dirt into an urn and stating that we are the living dead!
Mindy's testimony was riveting, I loved her tone of voice throughout - I kept saying go Mindy, go, go, go
Mindy's testimony was riveting, I loved her tone of voice throughout - I kept saying go Mindy, go, go, go
Nielk
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Are we the only ones watching this meeting? Why is there not more interest generated here? I was very moved by the testimony by and of young people - children affected by this illness. I was also surprised that there were so many multiples in single families. Did you all know about that or am I the only one surprised? there was a woman who spoke about her three sons having cfs!
August59
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She definitely turned the burner up on it and i think she caught Dr. Jones off guard. She was very good and her tone and attituded is way past due. The status quo sucks and has to change.
Nielk
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Testimony by Lori Chapo-Kroger, RN
Dear Dr. Wanda Jones, Dr. Christopher Snell, Chair and CFS Advisory Committee:
My name is Lori Chapo-Kroger, the founder of CFS Solutions of West Michigan. I would like to share with you the story of three of my friends.
Molly was a registered nurse and worked for the Michigan Department of Health. Mollys husband awoke one morning and found her dead next to him in bed. She died unexpectedly from ME/CFS.
Evert was a social worker until he got sick with ME/CFS. He spent the last several years of his life bedbound before dying of complications from ME/CFS. He died 3 days before Thanksgiving.
Jill took her own life last July because she was in so much pain. Im not sure if she could no longer stand the pain caused by ME/CFS or if it was from the emotional pain of disbelief from her doctors, friends and family. Maybe it was a little of both.
Could their early deaths been avoided if they received proper medical care? Probably. Could their lives have been more bearable? Definitely! I was an ICU nurse and worked with the severely ill but nothing compares to the suffering and abuse ME/CFS patients endure.
We are the walking dead. Some of us are so close to death that its like lying in a grave that has already been dug, desperately holding onto one strand of grass. Each time a doctor says there is nothing they can do, a shovel full of dirt is thrown on us. Disbelief. Another shovel. Told to exercise. Another shovel. We are being buried alive!
When in a crisis, we are afraid to go to the emergency department and often dont go. ME/CFS is not listed in the Merck Manual used in the emergency room. If your illness or disease isnt in the THE book, then youre condition does not exist. If you mention ME/CFS or fibromyalgia, youre automatically looked upon as psychotic and a drug seeker. You are dismissed without treatment, just verbal and emotional abuse.
Getting medical help should not be the hard part!
Healthcare providers are at a lost because ME/CFS is not taught in medical schools or nursing schools. There is no toolkit or protocol for chronic fatigue syndrome. Sadly, the only source of knowledge is from the misinformation on the CDC website.
For 30 years, patients have been misunderstood, undertreated and left to care for themselves. Often its the patients who support and take care of each other; the sick taking care of the sick. There is something very wrong with that picture!
We need to change the lack of knowledge and the stigma around ME/CFS so I ask you to answer these 4 questions:
What can you do as the panel of advisors for ME/CFS to get information about this disease into the medical and nursing school curricula?
How can you get ME/CFS into the Merck Manual, THE emergency room book?
Can the Medscape CME online course mentioned on the IACFS website be updated and reactivated?
Can you put up a website with correct information or work with the CDC to ensure that their site is not filled with misinformation?
Please do whatever you can to make this happen. This wont take much money but can make a huge difference in patients lives today.
Thank you.
Lori Chapo-Kroger, RN
Dear Dr. Wanda Jones, Dr. Christopher Snell, Chair and CFS Advisory Committee:
My name is Lori Chapo-Kroger, the founder of CFS Solutions of West Michigan. I would like to share with you the story of three of my friends.
Molly was a registered nurse and worked for the Michigan Department of Health. Mollys husband awoke one morning and found her dead next to him in bed. She died unexpectedly from ME/CFS.
Evert was a social worker until he got sick with ME/CFS. He spent the last several years of his life bedbound before dying of complications from ME/CFS. He died 3 days before Thanksgiving.
Jill took her own life last July because she was in so much pain. Im not sure if she could no longer stand the pain caused by ME/CFS or if it was from the emotional pain of disbelief from her doctors, friends and family. Maybe it was a little of both.
Could their early deaths been avoided if they received proper medical care? Probably. Could their lives have been more bearable? Definitely! I was an ICU nurse and worked with the severely ill but nothing compares to the suffering and abuse ME/CFS patients endure.
We are the walking dead. Some of us are so close to death that its like lying in a grave that has already been dug, desperately holding onto one strand of grass. Each time a doctor says there is nothing they can do, a shovel full of dirt is thrown on us. Disbelief. Another shovel. Told to exercise. Another shovel. We are being buried alive!
When in a crisis, we are afraid to go to the emergency department and often dont go. ME/CFS is not listed in the Merck Manual used in the emergency room. If your illness or disease isnt in the THE book, then youre condition does not exist. If you mention ME/CFS or fibromyalgia, youre automatically looked upon as psychotic and a drug seeker. You are dismissed without treatment, just verbal and emotional abuse.
Getting medical help should not be the hard part!
Healthcare providers are at a lost because ME/CFS is not taught in medical schools or nursing schools. There is no toolkit or protocol for chronic fatigue syndrome. Sadly, the only source of knowledge is from the misinformation on the CDC website.
For 30 years, patients have been misunderstood, undertreated and left to care for themselves. Often its the patients who support and take care of each other; the sick taking care of the sick. There is something very wrong with that picture!
We need to change the lack of knowledge and the stigma around ME/CFS so I ask you to answer these 4 questions:
What can you do as the panel of advisors for ME/CFS to get information about this disease into the medical and nursing school curricula?
How can you get ME/CFS into the Merck Manual, THE emergency room book?
Can the Medscape CME online course mentioned on the IACFS website be updated and reactivated?
Can you put up a website with correct information or work with the CDC to ensure that their site is not filled with misinformation?
Please do whatever you can to make this happen. This wont take much money but can make a huge difference in patients lives today.
Thank you.
Lori Chapo-Kroger, RN
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Suzy Chapman Owner of Dx Revision Watch
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Yes I am aware of what was discussed.
But that was not my question. I wanted to know which specific classification Sing was enquiring about in order that I could give her a response.
Whether she was enquiring about the process for input into the DSM-5 review or in connection with the ICD-10-CM, before and after the Partial Code Freeze in October 2011.
It is the DSM-5 public review for which comment can be submitted via the APA's DSM-5 Development website.
It is "Complex Somatic Symptom Disorder" not "chronically complex somatic symptoms" that is a proposed DSM-5 category for the revision of the "Somatoform Disorders" of DSM-IV.
It was Nancy Klimas who had proposed the wording of the Recommendation in May 2010:
May 2010 CFSAC recommendation: CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).
The previous Recommendation had read:
August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.
I will be PMing you.
Suzy
Hope123
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MEagenda, maybe the best thing to do is to ask Sing specifically what was being referred to. There was also briefly a "public comments" section under the video during the videocast but I didn't play around with that and it disappeared later on.
The CFSAC discussion talked about both issues and since this isn't my area and I am bothered by CFS mentally (especially early here when I was watching) , I cannot give you a blow-by-blow. The archived tape will give more details.
The CFSAC discussion talked about both issues and since this isn't my area and I am bothered by CFS mentally (especially early here when I was watching) , I cannot give you a blow-by-blow. The archived tape will give more details.
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Suzy Chapman Owner of Dx Revision Watch
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Hope I have PMd you - please check your PMs.
I know what was discussed at the meeting.
That was not what I was asking Sing about.
I was asking Sing which classification system she wanted more information about because the online public review process is DSM-5 not ICD-10-CM.
I am not refering to the making of public comments about the CFSAC meeting, itself, via the CFSAC video website.
But no matter.
I know what was discussed at the meeting.
That was not what I was asking Sing about.
I was asking Sing which classification system she wanted more information about because the online public review process is DSM-5 not ICD-10-CM.
I am not refering to the making of public comments about the CFSAC meeting, itself, via the CFSAC video website.
But no matter.
Sing
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Thank you, Suzy. You are being very generous with your time and help here, and I am sure I am not the only one being helped.
I recognized that there were two different classifications under discussion, with somewhat different consequences. I liked what the committee is proposing to do, in terms of trying to get ME/CFS listed as a neurological condition in the ICD-10-CM categories of illnesses.
But what I feel is most important for those of us on the sidelines here is to be aimed at the place where we can make a contribution, and so I see it is only for the DSM-5. I should go back and find your information about this, as it doesn't stick in my mind, and compose a letter. The more we team up in this letter writing effort, giving each other ideas, maybe the better. Because it sounds as though we need as many commentators as possible on the proposed changes or we will stay in trouble.
Since the way medicine and medical insurance are conducted comes out of a "cookbook", a "rulebook", exactly what these categories and rules are for us will make all the difference between help and no help/harm.
So please, Everyone, let's crank out some letters as public commentators for the DSM-5.
I recognized that there were two different classifications under discussion, with somewhat different consequences. I liked what the committee is proposing to do, in terms of trying to get ME/CFS listed as a neurological condition in the ICD-10-CM categories of illnesses.
But what I feel is most important for those of us on the sidelines here is to be aimed at the place where we can make a contribution, and so I see it is only for the DSM-5. I should go back and find your information about this, as it doesn't stick in my mind, and compose a letter. The more we team up in this letter writing effort, giving each other ideas, maybe the better. Because it sounds as though we need as many commentators as possible on the proposed changes or we will stay in trouble.
Since the way medicine and medical insurance are conducted comes out of a "cookbook", a "rulebook", exactly what these categories and rules are for us will make all the difference between help and no help/harm.
So please, Everyone, let's crank out some letters as public commentators for the DSM-5.
taniaaust1
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Wow.. what a great speech. thanks a lot for sharing as I cant listen due to dial up.
I wish that was available still too as it was a great course.. best doctors ME/CFS education I've seen.
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Suzy Chapman Owner of Dx Revision Watch
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Registering for DSM-5 submissions
Sing, you are welcome. Unfortunately there have been misconceptions around these issues and what was said at the meeting "in another place" that have taken up my time and I hope these will be attended to.
Details for registering to submit comment during this second DSM-5 public review and feedback period (open now until 15 June) were set out here in the main DSM-5 thread:
Post #186
http://forums.phoenixrising.me/show...-ICD-in-the-US&p=177343&viewfull=1#post177343
The original proposal (in 2001) for ICD-10-CM
(For history, see CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases, March 2001 proposals)
was for all three terms to be classified in Chaper VI, under G93.3.
By 2007, it was publicly known that the proposal, as it stood in 2001, had changed and that it was now being proposed that PVFS and (B)ME would be classified in Chapter VI at G93.3 but that Chronic fatigue syndrome would be retained in the R codes.
So this is by no means a new move by the CDC and the ICD-10-CM development committee.
In 2007/8, US advocates, Mary Schweitzer and Jean Harrison, were raising concerns on the Co-Cure mailing list and other platforms.
This issue has also been discussed, in the past, at CFSAC committee meetings, and minutes of those meetings and of discussions with representatives of the CDC around the coding proposals are archived on the CFSAC website.
In 2005, CFSAC committee had voted in this Recommendation to the HHS:
August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.
The coding issue came up again at the May 2010 CFSAC meeting.
As has been discussed on this forum before (in a thread dedicated to the ICD-10-CM coding issue) the Recommendation of May 2010 was ambiguously worded.
http://www.hhs.gov/advcomcfs/recommendations/05102010.html
May 2010 Recommendation 5
CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).
A couple of committee members recognised that there was some confusion around ICD-10-CM and DSM-5 proposals and around key dates for both revision processes.
(It was very frustrating sitting here in the UK, watching the committee getting more and more tangled up over this. Had I been present at that meeting, I would have passed a note of clarification to the Chair.)
Nevertheless, although in my view the committee lacked a good understanding of the situation, the meeting was drawing to a close and the proposal taken forward and voted in favour of.
With an October Partial Code Freeze looming for ICD-10-CM, it was important for the issue of the retention of CFS in the R codes chapter of ICD-10-CM to be revisted at the spring CFSAC committee meeting, for both further discussion and in order that the ambiguously worded Recommendation of May 2010 could be reviewed.
It was also a concern of mine that the committee had not been previously informed about the considerable concerns around DSM-5.
As you see, the May 2010 Recommendation appeared to be calling for CFS to be retained in the R code "Signs, symptoms and ill-defined disorders" chapter for ICD-9-CM (although there have been no proposals to shift it from its current position during the life of ICD-9-CM, either to the Mental Health chapter or to any other chapter and this was subsequently clarified by HHS in a note inserted under the Recommendation on the CFSAC Recommendations page). But crucially, it does not reaffirm the previous Recommendation of May 2010 and that needed attending to.
What was voted on on Day 1 of this week's meeting is:
So please don't think that the proposal to retain CFS in the R codes issue is a new one, or that it is new to CFSAC committee, because it has been discussed on and off by CFSAC since at least 2005.
And although the make-up of the CFSAC committee isn't static and the office holders, voting members and non voting members change from year to year, the issue, and concerns around the issue, were already familiar to some longstanding committee members, for example, Dr Wanda Jones, and have been discussed on several occasions, in the past and recommendations made.
But back to DSM-5.
Yes, it's important that patients submit, but also encourage patient organizations and professionals, especially researchers, clinicians, psychiatrists and psychologists to submit feedback, too.
I suspect that in the UK, there will be resistance in some quarters to submitting in this second review.
The main DSM-5 thread (which was started in December 2009) is here:
http://forums.phoenixrising.me/show...s-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=178176
and again, details about registering to submit in the DSM-5 public review and feedback are in this post, and I shall also be posting them on my site in a forthcoming post:
Post #186
There appears to be the misconception elsewhere that no responses were received by the DSM-5 in the last review. This is most definitely not the case. Dr Jones was refering to ICD-10-CM development process (which has been underway for many years) not to public comment on DSM-5.
Some of last year's submissions from patient orgs and patients are collated on my site, here:
http://wp.me/PKrrB-AQ
So far, no UK patient orgs have acknowledged receipt of the information they received from me on 5 May, apart from AfME. None of the US and international patient orgs have responded yet, either.
Suzy
Sing, you are welcome. Unfortunately there have been misconceptions around these issues and what was said at the meeting "in another place" that have taken up my time and I hope these will be attended to.
Details for registering to submit comment during this second DSM-5 public review and feedback period (open now until 15 June) were set out here in the main DSM-5 thread:
Post #186
http://forums.phoenixrising.me/show...-ICD-in-the-US&p=177343&viewfull=1#post177343
The original proposal (in 2001) for ICD-10-CM
(For history, see CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases, March 2001 proposals)
was for all three terms to be classified in Chaper VI, under G93.3.
By 2007, it was publicly known that the proposal, as it stood in 2001, had changed and that it was now being proposed that PVFS and (B)ME would be classified in Chapter VI at G93.3 but that Chronic fatigue syndrome would be retained in the R codes.
So this is by no means a new move by the CDC and the ICD-10-CM development committee.
In 2007/8, US advocates, Mary Schweitzer and Jean Harrison, were raising concerns on the Co-Cure mailing list and other platforms.
This issue has also been discussed, in the past, at CFSAC committee meetings, and minutes of those meetings and of discussions with representatives of the CDC around the coding proposals are archived on the CFSAC website.
In 2005, CFSAC committee had voted in this Recommendation to the HHS:
August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.
The coding issue came up again at the May 2010 CFSAC meeting.
As has been discussed on this forum before (in a thread dedicated to the ICD-10-CM coding issue) the Recommendation of May 2010 was ambiguously worded.
http://www.hhs.gov/advcomcfs/recommendations/05102010.html
May 2010 Recommendation 5
CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).
A couple of committee members recognised that there was some confusion around ICD-10-CM and DSM-5 proposals and around key dates for both revision processes.
(It was very frustrating sitting here in the UK, watching the committee getting more and more tangled up over this. Had I been present at that meeting, I would have passed a note of clarification to the Chair.)
Nevertheless, although in my view the committee lacked a good understanding of the situation, the meeting was drawing to a close and the proposal taken forward and voted in favour of.
With an October Partial Code Freeze looming for ICD-10-CM, it was important for the issue of the retention of CFS in the R codes chapter of ICD-10-CM to be revisted at the spring CFSAC committee meeting, for both further discussion and in order that the ambiguously worded Recommendation of May 2010 could be reviewed.
It was also a concern of mine that the committee had not been previously informed about the considerable concerns around DSM-5.
As you see, the May 2010 Recommendation appeared to be calling for CFS to be retained in the R code "Signs, symptoms and ill-defined disorders" chapter for ICD-9-CM (although there have been no proposals to shift it from its current position during the life of ICD-9-CM, either to the Mental Health chapter or to any other chapter and this was subsequently clarified by HHS in a note inserted under the Recommendation on the CFSAC Recommendations page). But crucially, it does not reaffirm the previous Recommendation of May 2010 and that needed attending to.
What was voted on on Day 1 of this week's meeting is:
CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under Diseases of the nervous system, at G93.3 in line with International ICD-10 and ICD-10-CA (the Canadian Clinical Modification) and in accordance with the committees recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under Diseases of the nervous system, at G93.3 in line with International ICD-10 and ICD-10-CA (the Canadian Clinical Modification) and in accordance with the committees recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.
So please don't think that the proposal to retain CFS in the R codes issue is a new one, or that it is new to CFSAC committee, because it has been discussed on and off by CFSAC since at least 2005.
And although the make-up of the CFSAC committee isn't static and the office holders, voting members and non voting members change from year to year, the issue, and concerns around the issue, were already familiar to some longstanding committee members, for example, Dr Wanda Jones, and have been discussed on several occasions, in the past and recommendations made.
But back to DSM-5.
Yes, it's important that patients submit, but also encourage patient organizations and professionals, especially researchers, clinicians, psychiatrists and psychologists to submit feedback, too.
I suspect that in the UK, there will be resistance in some quarters to submitting in this second review.
The main DSM-5 thread (which was started in December 2009) is here:
http://forums.phoenixrising.me/show...s-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=178176
and again, details about registering to submit in the DSM-5 public review and feedback are in this post, and I shall also be posting them on my site in a forthcoming post:
Post #186
There appears to be the misconception elsewhere that no responses were received by the DSM-5 in the last review. This is most definitely not the case. Dr Jones was refering to ICD-10-CM development process (which has been underway for many years) not to public comment on DSM-5.
Some of last year's submissions from patient orgs and patients are collated on my site, here:
http://wp.me/PKrrB-AQ
So far, no UK patient orgs have acknowledged receipt of the information they received from me on 5 May, apart from AfME. None of the US and international patient orgs have responded yet, either.
Suzy
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Suzy Chapman Owner of Dx Revision Watch
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Registering to submit comment in the second DSM-5 public review
I've now added information about registering and submitting comment to my Dx Revision Watch site:
Second public review of draft proposals for DSM-5 criteria now open and runs from May to 15th June
1] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 1)
Q and A. Shortlink Post #75: http://wp.me/pKrrB-12P
2] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 2)
Shortlink Post #77: http://wp.me/pKrrB-13z
3] Registering to submit comment in the second DSM-5 public review of draft criteria
Shortlink to Post #78: http://wp.me/pKrrB-15q
I've now added information about registering and submitting comment to my Dx Revision Watch site:
Second public review of draft proposals for DSM-5 criteria now open and runs from May to 15th June
1] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 1)
Q and A. Shortlink Post #75: http://wp.me/pKrrB-12P
2] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 2)
Shortlink Post #77: http://wp.me/pKrrB-13z
3] Registering to submit comment in the second DSM-5 public review of draft criteria
Shortlink to Post #78: http://wp.me/pKrrB-15q
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Suzy Chapman Owner of Dx Revision Watch
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ICD-related questions from CFSAC for May 2011 meeting
CFSAC Spring Meeting Day One
A copy of the handout prepared by Dr Wanda Jones as background for the discussion on the issue of the coding of CFS in ICD-10-CM is now posted on the CFSAC website:
http://www.hhs.gov/advcomcfs/
> http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html
>> http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf
What are the key steps in development of the ICD-10-CM?
ICD-10-CM is a clinical modification of the WHO ICD-10. ICD-10-CM will replace ICD-9-CM which has been in use in the U.S. since 1979. ICD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990
ICD-10-CM has been developed over a nine-year process which included input from a large number of healthcare stakeholders
Three phases of development
Ongoing updates to ICD-10-CM since 1998 to incorporate modifications to ICD-9-CM that were not already included in the WHO ICD-10
ICD-10 is updated (minor updates annually and major updates every three years) by WHO, based on recommendations from the WHO Family of International Classifications (WHO-FIC) Collaborating Centers. NCHS leads the North American Collaborating Center for U.S. and Canada and participates actively in the updating process. International updates to ICD-10 are incorporated into ICD-10-CM as feasible.
ICD-10-CM is being maintained using the same public process that has been used to update ICD-9-CM since 1985. The public process, the ICD-9-CM Coordination and Maintenance Committee, is held twice yearly; suggestions for modifications are submitted by private and public sector users of the classification.
Implementation of ICD-10-CM is tied to the standards adoption process specified in the Administrative Simplification provisions of HIPAA (1996)
1) How does the ICD-CM (whatever version, -9, -10, etc.) align with past and current versions of the -CM and with the WHO's current and past versions?
ICD-9-CM is a clinical modification of the WHO. ICD-9 (no longer maintained by WHO) that provides additional clinical detail important in inpatient, outpatient and physician office encounters in the U.S.
The ICD-9-CM Conversion Table is published each year and is provided to assist users in understanding annual changes to the classification. For each new code, the table shows the date the code change became effective and its previously assigned code equivalent. The code equivalents were used in reporting diagnosis information up to the time the new codes were issued.
A detailed set of maps (General Equivalence Maps) between ICD-9-CM and ICD-10CM are also available. These maps show the linkage between concepts in ICD-9-CM and the same concept in ICD-10-CM. However, if a concept is not carried over from one version to the other, information will be lost.
2) How is the ICD-CM used in policy-related decision making?
There are different applications of ICD in the United States
3) What difference does coding designation make? How do we get providers to use a particular code--is it an issue of education, of outreach, or what? If codes related to CFS are in several different places, doesn't that affect the count? And finally, if the codes change, do we lose the numbers from the prior coding systems?
Codes are assigned based on clinical assessment of the physician as documented in the health care record. It would be inappropriate to have a physician or coder assign a code for a condition that is not consistent with the physicians clinical assessment.
Codes can be aggregated to gather statistics on a particular condition. For example, if the goal is to identify all types of arthritis one would use codes found in several different chapters (gonoccocal arthritis is in infectious diseases chapter, rheumatoid arthritis is in the musculoskeletal chapter, psoriatic arthritis is in the diseases of skin and subcutaneous tissue chapter). This is a standard convention of the ICD because, in general, placement of conditions within the classification is based on the underlying cause.
As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82). If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.
There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.
4) How does ICD coding relate to DSM coding (or does it)?
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association and is used by mental health professionals in the U.S. The coding system used in the DSM-IV (current version in use) is designed to correspond with the codes used in the ICD, although not all codes may match at all times because the two publications are not revised synchronously.
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM
American Academy of Dermatology
American Academy of Neurology
American Academy of Oral and Maxillofacial Surgeons American Academy of Orthopedic Surgeons
American College of Obstetricians and Gynecologists
American Academy of Pediatrics
American Burn Association
American Diabetes Association American Dietetic Association
American Nursing Association
American Psychiatric Association American Urological Association
ANSI Z16.2 Workgroup (Workers Comp)
National Association of Childrens Hospitals & Related Institutions
[PDF Ends]
CFSAC Spring Meeting Day One
A copy of the handout prepared by Dr Wanda Jones as background for the discussion on the issue of the coding of CFS in ICD-10-CM is now posted on the CFSAC website:
http://www.hhs.gov/advcomcfs/
> http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html
>> http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf
ICD-related questions from CFSAC for May 2011 meeting
What are the key steps in development of the ICD-10-CM?
ICD-10-CM is a clinical modification of the WHO ICD-10. ICD-10-CM will replace ICD-9-CM which has been in use in the U.S. since 1979. ICD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990
ICD-10-CM has been developed over a nine-year process which included input from a large number of healthcare stakeholders
Three phases of development
o Phase 1 First draft of ICD-10-CM developed under contract (1994) 20 Technical Advisory Panel (TAP) members
o Phase 2 - Enhancements by NCHS (1995-1996) Based on ICD-9-CM Coordination & Maintenance Committee minutes, physician and other provider input
o Phase 3 - Further enhancements based on public comments
o Phase 2 - Enhancements by NCHS (1995-1996) Based on ICD-9-CM Coordination & Maintenance Committee minutes, physician and other provider input
o Phase 3 - Further enhancements based on public comments
- December 1997 February 1998
- 22 organizations/individuals
- June July 2003 Pilot test of ICD-10-CM: More than 6100 records from a broad cross section of health care community were dual coded by 180+ participants. The initial results showed general support for adoption of ICD-10-CM; ICD-10-CM is seen as an improvement over ICD-9-CM; and ICD-10-CM is more applicable to non-hospital settings than ICD-9-CM.
Ongoing updates to ICD-10-CM since 1998 to incorporate modifications to ICD-9-CM that were not already included in the WHO ICD-10
ICD-10 is updated (minor updates annually and major updates every three years) by WHO, based on recommendations from the WHO Family of International Classifications (WHO-FIC) Collaborating Centers. NCHS leads the North American Collaborating Center for U.S. and Canada and participates actively in the updating process. International updates to ICD-10 are incorporated into ICD-10-CM as feasible.
ICD-10-CM is being maintained using the same public process that has been used to update ICD-9-CM since 1985. The public process, the ICD-9-CM Coordination and Maintenance Committee, is held twice yearly; suggestions for modifications are submitted by private and public sector users of the classification.
o Meetings are open to the public
o Comments are encouraged both at the meetings and in writing
o Meeting materials include the timeline for receipt of public comments, the deadline for submission of new proposals; and the scheduled dates for the next meeting. A summary of the meeting discussions is also posted on the NCHS webpage. [http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm]
o The tentative agenda for an upcoming meeting is posted on the NCHS website approximately one month prior to the meeting. A notice announcing the meeting is also published in the Federal Register approximately one month in advance of the meeting.
o Recommendations and comments are carefully reviewed and evaluated before any final decisions are made. No decisions are made at the meetings. Final decisions are made at the end of the year and approved changes become effective October 1 of the following year. The official documents (called addenda) containing all approved changes are available on the NCHS website. [http://www.cdc.gov/nchs/icd/icd9cm_addenda_guidelines.htm]
o Comments are encouraged both at the meetings and in writing
o Meeting materials include the timeline for receipt of public comments, the deadline for submission of new proposals; and the scheduled dates for the next meeting. A summary of the meeting discussions is also posted on the NCHS webpage. [http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm]
o The tentative agenda for an upcoming meeting is posted on the NCHS website approximately one month prior to the meeting. A notice announcing the meeting is also published in the Federal Register approximately one month in advance of the meeting.
o Recommendations and comments are carefully reviewed and evaluated before any final decisions are made. No decisions are made at the meetings. Final decisions are made at the end of the year and approved changes become effective October 1 of the following year. The official documents (called addenda) containing all approved changes are available on the NCHS website. [http://www.cdc.gov/nchs/icd/icd9cm_addenda_guidelines.htm]
Implementation of ICD-10-CM is tied to the standards adoption process specified in the Administrative Simplification provisions of HIPAA (1996)
o Public hearings (8+, 1997-2003)
o Notice of Proposed Rulemaking (NPRM) published in August 22, 2008
o Final rule final rule adopting the ICD-10 code sets was published January 29, 2009
o Notice of Proposed Rulemaking (NPRM) published in August 22, 2008
o Final rule final rule adopting the ICD-10 code sets was published January 29, 2009
1) How does the ICD-CM (whatever version, -9, -10, etc.) align with past and current versions of the -CM and with the WHO's current and past versions?
ICD-9-CM is a clinical modification of the WHO. ICD-9 (no longer maintained by WHO) that provides additional clinical detail important in inpatient, outpatient and physician office encounters in the U.S.
The ICD-9-CM Conversion Table is published each year and is provided to assist users in understanding annual changes to the classification. For each new code, the table shows the date the code change became effective and its previously assigned code equivalent. The code equivalents were used in reporting diagnosis information up to the time the new codes were issued.
A detailed set of maps (General Equivalence Maps) between ICD-9-CM and ICD-10CM are also available. These maps show the linkage between concepts in ICD-9-CM and the same concept in ICD-10-CM. However, if a concept is not carried over from one version to the other, information will be lost.
2) How is the ICD-CM used in policy-related decision making?
There are different applications of ICD in the United States
o Coding causes of death (mortality statistics) using ICD-10
o Coding reasons for visit and hospitalization (morbidity applications currently using ICD-9-CM)
Coded data are used for a variety of purposes morbidity statistics, health care utilization and quality review, reimbursement, epidemiology, resource allocation, etc. Some of these applications are determined by the end-user (such as in reimbursement or coverage decisions) and are based on that entitys business decisions and not necessarily based on placement of a condition within the classification.
o Coding reasons for visit and hospitalization (morbidity applications currently using ICD-9-CM)
Coded data are used for a variety of purposes morbidity statistics, health care utilization and quality review, reimbursement, epidemiology, resource allocation, etc. Some of these applications are determined by the end-user (such as in reimbursement or coverage decisions) and are based on that entitys business decisions and not necessarily based on placement of a condition within the classification.
3) What difference does coding designation make? How do we get providers to use a particular code--is it an issue of education, of outreach, or what? If codes related to CFS are in several different places, doesn't that affect the count? And finally, if the codes change, do we lose the numbers from the prior coding systems?
Codes are assigned based on clinical assessment of the physician as documented in the health care record. It would be inappropriate to have a physician or coder assign a code for a condition that is not consistent with the physicians clinical assessment.
Codes can be aggregated to gather statistics on a particular condition. For example, if the goal is to identify all types of arthritis one would use codes found in several different chapters (gonoccocal arthritis is in infectious diseases chapter, rheumatoid arthritis is in the musculoskeletal chapter, psoriatic arthritis is in the diseases of skin and subcutaneous tissue chapter). This is a standard convention of the ICD because, in general, placement of conditions within the classification is based on the underlying cause.
As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82). If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.
There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.
4) How does ICD coding relate to DSM coding (or does it)?
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association and is used by mental health professionals in the U.S. The coding system used in the DSM-IV (current version in use) is designed to correspond with the codes used in the ICD, although not all codes may match at all times because the two publications are not revised synchronously.
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM
American Academy of Dermatology
American Academy of Neurology
American Academy of Oral and Maxillofacial Surgeons American Academy of Orthopedic Surgeons
American College of Obstetricians and Gynecologists
American Academy of Pediatrics
American Burn Association
American Diabetes Association American Dietetic Association
American Nursing Association
American Psychiatric Association American Urological Association
ANSI Z16.2 Workgroup (Workers Comp)
National Association of Childrens Hospitals & Related Institutions
[PDF Ends]
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Suzy Chapman Owner of Dx Revision Watch
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Next ICD-9-CM Coordination and Maintenance Committee meeting dates
The Spring Meeting CFSAC Committee Agenda Item tabled for 1:15 p.m. on Day One
Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns Committee Members
opens around 4hrs 27 minutes in from the start of the meeting and continues to around 5hrs 11mins in from the start of the videocast.
Both ICD-10-CM and DSM-5 were discussed.
You can watch this section of the meeting at:
http://nih.granicus.com/ViewPublisher.php?view_id=26
As a result of the discussion, CFSAC committee members voted unanimously on a new Recommendation that CFS should be coded under G93.3 in ICD-10-CM, and should not be retained in the "R code" "Signs and symptoms and ill-defined conditions" chapter (Chapter 18 in ICD-10-CM), which reaffirmed the Committee's 2005 Recommendation to HHS.
This brings the recommendation back in line with the August 2005 CFSAC Recommendation as well as other ICD classifications both international and clinically modified.
Proposed Recommendation:
CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under Diseases of the nervous system, at G93.3 in line with International ICD-10 and ICD-10-CA (the Canadian Clinical Modification) and in accordance with the committees recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.
Previous CFSAC recommendations:
May 2010 CFSAC recommendation:
CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).
August 2005 CFSAC recommendation:
Recommendation 10: We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.3.
---------------------------
Coordination and Maintenance Committee
Next meeting 14-15 September 2011
Written submissions/representations need to be received by July 15. (Not to be confused with the deadline for DSM-5 public comment, which is June 15)
International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)
Note: The 2011 release of ICD-10-CM is now available. It replaces the December 2010 release.
http://www.cdc.gov/nchs/icd/icd10cm.htm
ICD-9-CM Coordination and Maintenance Committee
http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
Upcoming Meeting
September 14 - 15, 2011
Deadline for receipt of proposals: July 15, 2011
"Recognizing the ICD-9-CM as a dynamic statistical tool that must be flexible to meet expanding classification needs, the ICD-9-CM Coordination and Maintenance Committee was created as a forum for proposals to update ICD-9-CM. A representative from the National Center for Health Statistics (NCHS) and one from the Centers for Medicare and Medicaid Services (CMS) co-chair the ICD-9-CM Coordination and Maintenance Committee meetings. Responsibility for maintenance of the ICD-9-CM is divided between the two agencies, with classification of diagnoses (volumes 1 and 2) by NCHS and of procedures (volume 3) by CMS.
"Although the ICD-9-CM Coordination and Maintenance Committee is a Federal Committee, suggestions for modifications come from both the public and private sectors. Interested parties are asked to submit recommendations for modification prior to a scheduled meeting. Proposals for a new code should include a description of the code being requested, and rationale for why the new code is needed. Supporting references and literature may also be submitted. Proposals should be consistent with the structure and conventions of the classification.
"These meetings are open to the public; comments are encouraged both at the meetings and in writing. Recommendations and comments are carefully reviewed and evaluated before any final decisions are made. No decisions are made at the meetings. The ICD-9-CM Coordination and Maintenance Committees role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made after the December meeting and become effective October 1 of the following year. Official code revision packages, which are referred to as addenda, are available from this site http://www.cms.gov/ICD9ProviderDiagnosticCodes/03_meetings.asp
"The minutes for the most recent meeting will include the deadline for comments on the most recent meeting, the scheduled dates for the next meeting, along with the deadline for receipt of modification proposals, and the mailing address and e-mail address to send either modification proposals or comments on proposals. The agenda for an upcoming meeting will be posted here approximately one month prior to the meeting.
Minutes and Proposals for the diagnosis portion of the meetings are listed below. Information about the procedure portion of the meeting is available from the CMS web site."
Summary and Proposals
March 9 - 10, 2011
For PDFs see foot of this page: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
The Spring Meeting CFSAC Committee Agenda Item tabled for 1:15 p.m. on Day One
Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns Committee Members
opens around 4hrs 27 minutes in from the start of the meeting and continues to around 5hrs 11mins in from the start of the videocast.
Both ICD-10-CM and DSM-5 were discussed.
You can watch this section of the meeting at:
http://nih.granicus.com/ViewPublisher.php?view_id=26
As a result of the discussion, CFSAC committee members voted unanimously on a new Recommendation that CFS should be coded under G93.3 in ICD-10-CM, and should not be retained in the "R code" "Signs and symptoms and ill-defined conditions" chapter (Chapter 18 in ICD-10-CM), which reaffirmed the Committee's 2005 Recommendation to HHS.
This brings the recommendation back in line with the August 2005 CFSAC Recommendation as well as other ICD classifications both international and clinically modified.
Proposed Recommendation:
CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under Diseases of the nervous system, at G93.3 in line with International ICD-10 and ICD-10-CA (the Canadian Clinical Modification) and in accordance with the committees recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.
Previous CFSAC recommendations:
May 2010 CFSAC recommendation:
CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).
August 2005 CFSAC recommendation:
Recommendation 10: We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.3.
---------------------------
Coordination and Maintenance Committee
Next meeting 14-15 September 2011
Written submissions/representations need to be received by July 15. (Not to be confused with the deadline for DSM-5 public comment, which is June 15)
International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)
Note: The 2011 release of ICD-10-CM is now available. It replaces the December 2010 release.
http://www.cdc.gov/nchs/icd/icd10cm.htm
ICD-9-CM Coordination and Maintenance Committee
http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
Upcoming Meeting
September 14 - 15, 2011
Deadline for receipt of proposals: July 15, 2011
"Recognizing the ICD-9-CM as a dynamic statistical tool that must be flexible to meet expanding classification needs, the ICD-9-CM Coordination and Maintenance Committee was created as a forum for proposals to update ICD-9-CM. A representative from the National Center for Health Statistics (NCHS) and one from the Centers for Medicare and Medicaid Services (CMS) co-chair the ICD-9-CM Coordination and Maintenance Committee meetings. Responsibility for maintenance of the ICD-9-CM is divided between the two agencies, with classification of diagnoses (volumes 1 and 2) by NCHS and of procedures (volume 3) by CMS.
"Although the ICD-9-CM Coordination and Maintenance Committee is a Federal Committee, suggestions for modifications come from both the public and private sectors. Interested parties are asked to submit recommendations for modification prior to a scheduled meeting. Proposals for a new code should include a description of the code being requested, and rationale for why the new code is needed. Supporting references and literature may also be submitted. Proposals should be consistent with the structure and conventions of the classification.
"These meetings are open to the public; comments are encouraged both at the meetings and in writing. Recommendations and comments are carefully reviewed and evaluated before any final decisions are made. No decisions are made at the meetings. The ICD-9-CM Coordination and Maintenance Committees role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made after the December meeting and become effective October 1 of the following year. Official code revision packages, which are referred to as addenda, are available from this site http://www.cms.gov/ICD9ProviderDiagnosticCodes/03_meetings.asp
"The minutes for the most recent meeting will include the deadline for comments on the most recent meeting, the scheduled dates for the next meeting, along with the deadline for receipt of modification proposals, and the mailing address and e-mail address to send either modification proposals or comments on proposals. The agenda for an upcoming meeting will be posted here approximately one month prior to the meeting.
Minutes and Proposals for the diagnosis portion of the meetings are listed below. Information about the procedure portion of the meeting is available from the CMS web site."
Summary and Proposals
March 9 - 10, 2011
For PDFs see foot of this page: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
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To compare proposals for the US specific ICD-10-CM with proposals for the forthcoming ICD-11, see:
ICD-11 Alpha Drafting platform launched 17 May (public version): Post#81: http://wp.me/pKrrB-16N
ICD-11 Alpha Drafting platform launched 17 May (public version): Post#81: http://wp.me/pKrrB-16N
A great summary of Day 1 of the CFSAC meeting, from the Massachusetts CFIDS/ME & FM Association:
www.masscfids.org/resource-library/15/304
Looking forward to the Day 2 summary!
If anyone has read other good summaries/reports, please post. For those of us who are unable to watch the entire webcast, it's really valuable.
www.masscfids.org/resource-library/15/304
Looking forward to the Day 2 summary!
If anyone has read other good summaries/reports, please post. For those of us who are unable to watch the entire webcast, it's really valuable.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
- UK
Open letter to Wanda Jones, Joan Grobstein, M.D.
I've been asked to post this by an attendee and provider of Oral Testimony at the CFSAC meeting. Apologies if it has already been posted in another thread.
Open letter to Wanda Jones, Joan Grobstein, M.D.
Dear Dr. Jones,
I am addressing my concerns to you because you were the Designated Federal Officer for the CFSAC meeting on May 10 and 11 of this year. I understand that future responsibility for CFSAC is passing to Nancy Lee, but you are responsible for the events that transpired at that meeting.
You were aware that people who were attempting to attend the CFSAC meeting were turned away from the HHS building on the second day, May 11. I know of at least eight people, myself included, who were told by the guards at the entrance to the HHS building that the CFSAC meeting was not a public meeting, and we were not permitted to enter the building unless we were on the list. This is obviously false. The Federal Register states that the meeting is open to the public. Some people were also told by guards that we were required to register for both days of the meeting. I have attended three previous CFSAC meetings; registration to attend the meeting has never been required. Four of those who were denied entrance on May 11 had entered the building without challenge on May 10. All of those denied entrance had travelled a considerable distance with the attendant expenditure of time, energy and money, and most were disabled patients.
Later we were told that there was a limit to how many people could be in the room because of fire codes. This clearly points to the need for planning for a larger room or some way to handle overflow. In any case, information obtained from someone in the room stated that all seats were not filled on the morning of May 11. I observed that there were many empty seats in the afternoon when I was finally allowed in.
Staff indicated that these new policies had come from you. Sick patients and their family members spent money and time to get to Washington to attend a public meeting in a building which, as taxpayers and citizens, we own. Several people insisted on their right to attend the meeting and were ultimately admitted but were forced to wait at the entrance to the building for a long period of time. At least one person assumed he would not be admitted and left. This should never have happened. It must never happen again.
Turning to another matter, I have heard of at least four instances where members of the public were prevented by CFSAC staff from giving written information to committee members and, in one instance which I myself observed, even from giving a document to another audience member:
Pat Fero was not permitted to make copies of her excellent summary of recent NIH funding available at the back of the room.
Meghan Shannon was not permitted to pass out copies of her testimony and other literature to Committee members.
Charlotte von Salis was not permitted to give copies of a petition regarding concerns about the CFIDS Association of America or copies of the Canadian Consensus Definition, which were both mentioned in her testimony, to Committee members.
I personally observed an incident where Ms. von Salis was prevented from giving a copy of the condensed version of the Canadian Consensus Definition for ME/CFS to another audience member. A CFSAC staff member told her to "close her box and put it away".
I am not an attorney, but it seems to me that these incidents are violations of these three citizens' right to free speech and assembly.
Meanwhile, Ive been told that you yourself were observed distributing Bob Millers testimony to Committee members. Why was his testimony treated differently than Ms. von Salis and Ms. Shannons?
At past meetings, literature and/or copies of testimony were available at the back of the room. Information was passed freely between audience members and between audience members and Committee members. Why were policies arbitrarily changed without notice at this meeting?
People spend time and money making copies of testimony and other documents for distribution to Committee members and audience members. This exchange of information is vital to the advisory role of this Committee. There is no excuse for limiting the flow of information to Committee members as long as it does not disrupt the meeting. I cannot think of any reason why patients should not be allowed to exchange documents among themselves or distribute them to interested Committee members. We live in a democracy. We have freedom of speech. We are citizens of the United States of America.
Security at the meeting was extremely tight. We were told it was because of bin Laden's death. Meghan Shannon has talked with someone who works at the FDA, and was told there was no heightened state of alert at that agency on May 10 and 11. Several people were admonished in loud voices when on their way to lavatories or the cafeteria. This is an unjustified invasion of privacy. Usually only small, naughty children and prisoners are watched and spoken to in this way. Were staff members instructed to be insulting to patients and to raise their voices when they spoke to them? I observed no misbehavior among the meeting attendees. What can possibly justify treating law-abiding citizens, many of them disabled, like naughty children or criminals?
I was not permitted to remain in the conference room during lunch on the first day, which I wanted to do to get a little peace and quiet. Is this reasonable accommodation for disability? We have not been subjected to this level of scrutiny at past meetings. It is not clear why a group of disabled patients are treated as though they are a threat their own government. Our goal is to educate government officials about the severity of our disease and contribute to the solutions for the problems of one million Americans with ME/CFS. The current treatment of ME/CFS patients is a national disgrace.
The events that happened at the CFSAC meeting on May 10 and May 11, 2011, should never happen again. Attendees should not be shouted at. Attendees should be free to distribute literature to Committee members and to each other. Attendees should be allowed to rest in the conference room whenever they need to. Attendees should be free to come and go to the cafeteria and lavatories at will. These are basic rights. Above all, this is a public meeting. All who wish to attend should be accommodated.
It is surprising to me that these issues even have to be addressed. Who would think that American citizens would be treated in this way?
Finally, all of the Committees recommendations should be reviewed at the end of every meeting. Most patients are not able to watch or attend the entire two days of meetings. When I spoke to several people who attended or watched the meeting, including two Committee members, I got several different versions of the recommendations. Even the two Committee members differed in what they thought the recommendations were. It is important that everyone involved in the meeting have a clear idea of what the Committees recommendations are, as well as what progress has been made on previous recommendations. It is very important to review the recommendations during the time allotted for that purpose in the last session of the meeting, so that everyone understands them. Given that the meeting was adjourned almost an hour early, there was plenty of time to do so at the May meeting.
The recommendations from the May meeting are not yet listed on the CFSAC website. When will the recommendations be posted?
I am posting this letter on the internet, because I think it is important that people know what occurred at this meeting. I have also sent an abbreviated version to the White House. Many people will be interested in your reply.
Of course, many people are grateful for what you have done for the ME/CFS patient community in the past
It is unfortunate to have to ask you to address these issues now.
Sincerely,
Joan Grobstein, M.D.
I've been asked to post this by an attendee and provider of Oral Testimony at the CFSAC meeting. Apologies if it has already been posted in another thread.
Open letter to Wanda Jones, Joan Grobstein, M.D.
Dear Dr. Jones,
I am addressing my concerns to you because you were the Designated Federal Officer for the CFSAC meeting on May 10 and 11 of this year. I understand that future responsibility for CFSAC is passing to Nancy Lee, but you are responsible for the events that transpired at that meeting.
You were aware that people who were attempting to attend the CFSAC meeting were turned away from the HHS building on the second day, May 11. I know of at least eight people, myself included, who were told by the guards at the entrance to the HHS building that the CFSAC meeting was not a public meeting, and we were not permitted to enter the building unless we were on the list. This is obviously false. The Federal Register states that the meeting is open to the public. Some people were also told by guards that we were required to register for both days of the meeting. I have attended three previous CFSAC meetings; registration to attend the meeting has never been required. Four of those who were denied entrance on May 11 had entered the building without challenge on May 10. All of those denied entrance had travelled a considerable distance with the attendant expenditure of time, energy and money, and most were disabled patients.
Later we were told that there was a limit to how many people could be in the room because of fire codes. This clearly points to the need for planning for a larger room or some way to handle overflow. In any case, information obtained from someone in the room stated that all seats were not filled on the morning of May 11. I observed that there were many empty seats in the afternoon when I was finally allowed in.
Staff indicated that these new policies had come from you. Sick patients and their family members spent money and time to get to Washington to attend a public meeting in a building which, as taxpayers and citizens, we own. Several people insisted on their right to attend the meeting and were ultimately admitted but were forced to wait at the entrance to the building for a long period of time. At least one person assumed he would not be admitted and left. This should never have happened. It must never happen again.
Turning to another matter, I have heard of at least four instances where members of the public were prevented by CFSAC staff from giving written information to committee members and, in one instance which I myself observed, even from giving a document to another audience member:
Pat Fero was not permitted to make copies of her excellent summary of recent NIH funding available at the back of the room.
Meghan Shannon was not permitted to pass out copies of her testimony and other literature to Committee members.
Charlotte von Salis was not permitted to give copies of a petition regarding concerns about the CFIDS Association of America or copies of the Canadian Consensus Definition, which were both mentioned in her testimony, to Committee members.
I personally observed an incident where Ms. von Salis was prevented from giving a copy of the condensed version of the Canadian Consensus Definition for ME/CFS to another audience member. A CFSAC staff member told her to "close her box and put it away".
I am not an attorney, but it seems to me that these incidents are violations of these three citizens' right to free speech and assembly.
Meanwhile, Ive been told that you yourself were observed distributing Bob Millers testimony to Committee members. Why was his testimony treated differently than Ms. von Salis and Ms. Shannons?
At past meetings, literature and/or copies of testimony were available at the back of the room. Information was passed freely between audience members and between audience members and Committee members. Why were policies arbitrarily changed without notice at this meeting?
People spend time and money making copies of testimony and other documents for distribution to Committee members and audience members. This exchange of information is vital to the advisory role of this Committee. There is no excuse for limiting the flow of information to Committee members as long as it does not disrupt the meeting. I cannot think of any reason why patients should not be allowed to exchange documents among themselves or distribute them to interested Committee members. We live in a democracy. We have freedom of speech. We are citizens of the United States of America.
Security at the meeting was extremely tight. We were told it was because of bin Laden's death. Meghan Shannon has talked with someone who works at the FDA, and was told there was no heightened state of alert at that agency on May 10 and 11. Several people were admonished in loud voices when on their way to lavatories or the cafeteria. This is an unjustified invasion of privacy. Usually only small, naughty children and prisoners are watched and spoken to in this way. Were staff members instructed to be insulting to patients and to raise their voices when they spoke to them? I observed no misbehavior among the meeting attendees. What can possibly justify treating law-abiding citizens, many of them disabled, like naughty children or criminals?
I was not permitted to remain in the conference room during lunch on the first day, which I wanted to do to get a little peace and quiet. Is this reasonable accommodation for disability? We have not been subjected to this level of scrutiny at past meetings. It is not clear why a group of disabled patients are treated as though they are a threat their own government. Our goal is to educate government officials about the severity of our disease and contribute to the solutions for the problems of one million Americans with ME/CFS. The current treatment of ME/CFS patients is a national disgrace.
The events that happened at the CFSAC meeting on May 10 and May 11, 2011, should never happen again. Attendees should not be shouted at. Attendees should be free to distribute literature to Committee members and to each other. Attendees should be allowed to rest in the conference room whenever they need to. Attendees should be free to come and go to the cafeteria and lavatories at will. These are basic rights. Above all, this is a public meeting. All who wish to attend should be accommodated.
It is surprising to me that these issues even have to be addressed. Who would think that American citizens would be treated in this way?
Finally, all of the Committees recommendations should be reviewed at the end of every meeting. Most patients are not able to watch or attend the entire two days of meetings. When I spoke to several people who attended or watched the meeting, including two Committee members, I got several different versions of the recommendations. Even the two Committee members differed in what they thought the recommendations were. It is important that everyone involved in the meeting have a clear idea of what the Committees recommendations are, as well as what progress has been made on previous recommendations. It is very important to review the recommendations during the time allotted for that purpose in the last session of the meeting, so that everyone understands them. Given that the meeting was adjourned almost an hour early, there was plenty of time to do so at the May meeting.
The recommendations from the May meeting are not yet listed on the CFSAC website. When will the recommendations be posted?
I am posting this letter on the internet, because I think it is important that people know what occurred at this meeting. I have also sent an abbreviated version to the White House. Many people will be interested in your reply.
Of course, many people are grateful for what you have done for the ME/CFS patient community in the past
It is unfortunate to have to ask you to address these issues now.
Sincerely,
Joan Grobstein, M.D.