Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2011.
Thank you for the link, Andrew. I will not be attending, but I want to submit comments.
Recent posts added to my Dx Revision Watch site:
Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)
October 18, 2011
Shortlink Post #90: http://wp.me/pKrrB-1gv
Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)
October 18, 2011
Shortlink Post #91: http://wp.me/pKrrB-1gZ
Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative
October 20, 2011
Shortlink Post #92: http://wp.me/pKrrB-1hd
Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011
(Coding of CFS in ICD-10-CM)
October 20, 2011
Shortlink Post #93: http://wp.me/pKrrB-1iB
Includes screenshots of C4 proposal and NCHS's suggestion for coding ME and CFS at two separate codes (G93.31 and G93.32) under a revised parent term: G93.3 Postviral and other chronic fatigue syndromes.)
Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)
October 20, 2011
Shortlink Post#94: http://wp.me/pKrrB-1iN
(Summary of meeting discussion on CFS and ICD-10-CM coding.)
You can download an Audio of the September 14 NCHS meeting here:
[Note this is a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]
ME agenda, do you have any information on ME?
Do you think ME and CFS are the same?
Do you support the Coalition 4 ME/CFS proposal to code CFS to ME?
Are you concerned about this?
Have the meeting at HHS with the live video feed
To the decision-makers at HHS, might I suggest that you have the meeting on the ground floor of HHS just behind the entrance desk, as you have done previously. Then there would be no need for escorts. Events are held in that space all the time and I don't think personal escorts to that area are routinely required. After all, people have already gone through the screening at the front door and have checked in with the officers at the front desk and received clearance and badges. How much security is necessary? The ground floor space can accommodate hundreds, if necessary, although, frankly, I've never noticed a problem with overcrowding. Even in the upstairs meeting room with a maximum capacity of fifty, seats are always available.
If held downstairs in the lobby, there would be no reason not to broadcast the video live and unedited. You have established a precedent, you know that hundreds of people watch it, and you have not given a clear explanation as to why it cannot be done for the upcoming meeting. I would urge you to reconsider your position.
i stayed at this hostel about 7 years ago. it was spartan, but a good value.
I am sorry Jill, but I will not engage with you. I published a position statement in September and I would refer you to that.
Frenchtulip, The date given is just to have it available at the conference. You can still submit comments anytime.
They will still be put on the website. You can even comment anonymously.
As this thread includes references to ICD-10 and ICD-10-CM coding issues:
New: Online ICD-10 Version for 2010
Shortlink Post#96: http://wp.me/pKrrB-1jm
The information in this report refers only to the existing international WHO ICD-10 and not to the forthcoming ICD-11 or to any country specific, clinical modification of ICD-10.
Suzy, Most people here are discussing it. The site says ME agenda for the UK patient community. All I see is CFS and CFSAC, nothing on ME or
even UK issues. Guess I am surprised that the US fed agencies take testimony or input on strictly US policy.
A general note for readers of this thread.
Dx Revision Watch site is a site specifically for monitoring and reporting on the development of DSM-5, ICD-11 and related coding issues, which includes ICD-10, ICD-10-CM, other clinical modifications of ICD and discussion of coding issues at CFSAC, NCHS, CDC, UK Parliament, Scottish Parliament etc. That is what the site was created for in late 2009.
My other site is ME agenda.
This site was created in June 2007 and has over 980 posts on it. The Categories can be read down the left hand side of the site. Since June 2007, ME agenda site has covered the following:
Archives for agendas, minutes, summaries and reports of meetings of the All Party Parliamentary Group on ME
Scottish Cross Party on ME notices
ME in Parliament: House of Lords debates; House of Commons Written Answers; EDMs; Adjournment debates
Countess of Mars Forward-ME group
ME Alliance activity
APPG on ME Inquiry into NHS service provision
RiME newsletters, notices and reports on APPG on ME meetings
Patient organisation press releases, position statements, summaries and reports of meetings
Updates on patient organisation activity in the areas of welfare reform, NHS service provision, DoH, DWP, NICE, MRC
Isssues around NHS CFS/ME Clinics and NHS service provision
Government reports, documents and guidelines
The NICE Guideline (CG53) on CFS/ME Judicial Review
MRC research; MRC Holgate multi-disciplinary CFS/ME panel
Information obtained under Freedom of Information Act
MSbP, social services intervention and child protection issues; Justice for Families reports (via John Hemming MP)
Selected research papers, reviews and reports
Demonstrations, protests, public meetings and events (also on Read ME UK Events )
Commentary, articles and papers by researcher Margaret Williams, sociologist Angela Kennedy and others
ME and related issues in medical and allied health professional journals
YouTube advocacy and activism videos
Some DSM-V and ICD-11 Revision Processes
Lightning Process and the SMILE Trial
There is little recent material relating to UK specific issues on the site, this year due, to personal family circumstances. I now devote most of what time I have to ICD-11 and DSM-5 and related coding issues.
It is erroneous then, to claim that ME agenda site is nothing but "CFS and CFSAC" as a few moments spent pulling up Monthly Archives or Category archives will evidence from the 980 odd posts on the site. The site is run on a blog template which shows only the most recent 10 postings. All the other 970 odd posts can be pulled up from either the Monthly Archives or Category archives.
So once again, I am being misrepresented on a public forum.
And I am sick of it and I am finding the continued focus on me disturbing and I shall be discussing my concerns with Cort over the weekend.
In postings that still stand unedited, despite several requests that the mods attend to defamatory content, Ms McLaughlin has told readers of these public forums that I am not to be trusted as a source of information.
If I am not to be trusted as a source of information then one has to question why Ms McLaughlin should have any interest in any opinion I might hold around ICD-10-CM and the Coalition4ME/CFS's initiative, or any other issue, which is one of the reasons I am no longer prepared to engage with her.
Moderators act based on forum rules, not number of requests. Nothing in PR rules indicates that stating personal mistrust of a source is unacceptable.
Any further discussion on moderator action and/or objectionable posts will take place privately.
Please get your comments in by 5PM EST October 26, this Wednesday, if you want them to be read by officials and posted on the website.
I do not know if you submit comments afterwards if they will be posted but best to go by their deadlines.
Individuals who do not provide public comment at the meeting, but
who wish to have printed material distributed to CFSAC members for
review should submit, at a minimum, one copy of the material to the
Designated Federal Officer at email@example.com prior to close of business
on Wednesday, October 26, 2011. Submitted documents should be limited
to five typewritten pages. If you wish to remain anonymous, please
notify the CFSAC support team staff upon submitting your materials to
All testimony and printed material submitted for the meeting are
part of the official meeting record and will be uploaded to the CFSAC
Web site; this material will be made available for public inspection.
Does anyone plan to definitely attend or will there be an empty room there with no patient representation?
Is no one else concerned about this?
Thanks for the reminder. I have attached my submission (which I just retool every time from my previous submission).
Please, everyone send something in. Don't kill yourself doing it. If you don't have much time or energy, you can resend in previous comments if you have made any and/or just say "I support Justin Reilly's submission" or whomever else's submission you want.
View attachment ME-letter to CFSAC November 2011- redacted.pdf
I signed up to speak via telephone very early in the process. But now I realized I could get bumped because I presented once before. I hope I get to speak. I've been thinking about what to say for months.
Nielk I don't think you need worry about an empty room; at the last meeting (May 10-11) there were Public Testimonies given on both days (and some by phone) but also other attendees who were present as observers. I don't have a figure for how many patients, carers and advocates did attend during the course of the two day proceedings but I am in touch with someone who regularly attends these meetings for at least one of the days, if they are two day meetings, and will try and get an idea for you of how many non committee members were present on Day One.
One videocast also showed some of the attendees. When the meeting is being drawn to order and the "housekeeping" is being addressed by the Secretariat, members of the audience are invited to sit in different seats if they prefer not to be caught on camera during the course of the meeting.
I've asked Mary Schweitzer if she'll give me a rough idea of numbers of attendees for Day One of the May meeting.
ETA: From an earlier post:
(Three hours have been allotted for public testimony, either in person or via telephone.)
From a quick skim of the Minutes for Day One and Day Two of the last meeting, there were around 19 public comments on Day One, in person and via telephone and another 12 on Day Two (some of the transcripts for Oral Testimony are up on the Presentations page of the Meetings page).
I never testified before. I did submit written testimony last May.
I have asked to give an oral presentation this November and I sent in my testimony last night.
I'm thinking of driving down from NY by myself and have no idea how I will manage that.
I just feel like I have to do something. I hope God will give me the strength to do it.
If you are worried about making the drive, you probably should not go. You could end up in a major crash. Why not just testify by telephone. Then you can offer your voice without wrecking your health.
Thanks for the advice. Maybe I should do that. I hope it's not too late to get a spot. I just thought that being there personally
would have more of an impact but, it's so hard to predict how I'm going to feel on those two days.
I thought about the different ways for me to get there and figured driving is the safest because I can just sit all the time. all the other ways like flying, taking the train or bus, involves too much standing and walking.
I definitely agree with Andrew. Pls don't endanger your health.
You can also try a Google Site Search
Separate names with a comma.