CFSAC Agenda is up!

[OneWaySurvival]

Not a big fan of Chat (tried to follow the temp. chat and get overwhelmed), so I'm hoping occasional comments get posted here.

I'll throw a couple points out.

After the 10am SOK summary by Dennis Mangan, several panel members asked very good & pointed questions. Examples:

Nancy Klimas asked why CDC (and other "official" govt. sites) can't update their websites with better information (many panel members echoed this sentiment and wondered if they can help reveiw these sites and make recommendations on how to update). She told how a patient just yesterday showed her a 19 page rejection letter from Aetna about why they won't cover ANY tests or treatments EVER for ME/CFS unless it's psychological or CBT treatments. She said Aetna cited info from 1993 that is still on the CDC website!

Dr. Houghton complained about lack of funding. Mangan gave a confusing govt-speak response that didn't answer the question directly.

Dr. Lenny Jason asked the NIH colleagues who came with Dennis Mangan (flanking him on either side) to explain what their perception of ME/CFS is within their specific departments. One of Mangan's NIH colleagues (young guy with dark hair and beard) said something very irksome. I could have misunderstood since it went unchallenged by the panel. I wish the videocast let you pause or rewind! But I think he said "old people get tired a lot too, so there is probably some overlap with what is causing people with CFS to get so tired." Uggh! I hope somebody in the public comment section blasts this one.

Public comments now on...

 

[beesknees]

Is this being recorded? Anywhere we can wach it?

 

[Hope123]

Is this being recorded? Anywhere we can wach it?

You can watch it live today and tomorrow! Go to this forum post:

http://forums.phoenixrising.me/show...e-do-we-go-to-watch-cfsac&p=178229#post178229

It will be archived but that usually doesn't happen until a few days-a week after the live broadcast.

 

[Hope123]

Dr. Lenny Jason asked the NIH colleagues who came with Dennis Mangan (flanking him on either side) to explain what their perception of ME/CFS is within their specific departments. One of Mangan's NIH colleagues (young guy with dark hair and beard) said something very irksome. I could have misunderstood since it went unchallenged by the panel. I wish the videocast let you pause or rewind! But I think he said "old people get tired a lot too, so there is probably some overlap with what is causing people with CFS to get so tired." Uggh! I hope somebody in the public comment section blasts this one.

Public comments now on...

Yeah, that's the problem with emphasizing "fatigue" rather than post-exertional malaise. Old people without ME/CFS don't have PEM and I say that with experience working a lot with older folks.

 

[Dx Revision Watch]

A number of UK folk are having buffering problems as I am. For me, it's virtually unwatchable.

 

[Dx Revision Watch]

1.30pm Discussion of International Classification of Disease-Cliinical Modification (ICD-CM) concerns

Copy of Meeting handout

CFSAC 10 May 2011 Day 1: 1.15pm Proposals for ICD-10-CM

A partial freeze on diagnostic codes for the forthcoming ICD-10-CM will come into effect on October 1. Without immediate and substantial action, those sections most likely to affect patients and clinicians will be difficult to change later.

Currently, CFS is classified in the ICD-9-CM under Symptoms, Signs and Ill-Defined Conditions, code 780.71, under the sub-heading of General Symptoms.

Under longstanding proposals, the committees developing ICD-10-CM intend to retain Chronic fatigue syndrome in the R codes, stranded under R53 Malaise and fatigue, at R53.82 Chronic fatigue syndrome (NOS), but to code for PVFS and ME under G93.3 in Chapter 6 Diseases of the nervous system, under G93 Other disorders of brain.

The R codes chapter (Chapter 18 in ICD-10-CM) is the chapter for Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99). This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded.

Since 1992, the International ICD-10 from which ICD-10-CM is being developed, has classified Postviral fatigue syndrome and Benign myalgic encephalomyelitis under G93.3 in Chapter VI Diseases of the nervous system (the Neurology chapter) in the Tabular List (Volume 1), with CFS indexed to G93.3 in the Alphabetical Index (Volume 3).

Canada already uses its own Clinical Modification of ICD-10, known as ICD-10-CA, and has all three terms classified together in the Tabular List under G93.3.

Coding CFS under Chapter 18, leaving it orphaned under Symptoms, signs and ill-defined conditions, will render ICD-10-CM out of line with at least three versions of ICD-10 the International ICD-10 (in use in over 110 countries), the Canadian Clinical Modification, the German Clinical Modification and proposals for the forthcoming ICD-11, where all three terms are proposed to be coded in Chapter 6, the Neurology chapter.

The US will be the only country in the world coding CFS under the R codes.

It may be problematic that in the proposed ICD-10-CM, Postviral fatigue syndrome is specifically excluded from the R53 Malaise and fatigue codes thus implying that PVFS has a viral etiology and CFS does not. Although clinicians can choose whether to code as CFS, ME or PVFS, there are no guarantees that clinicians will choose to use the unfamiliar ME code or that insurance companies will reimburse for the G93.3 code.

These proposals have the potential to substantially impact CFS patients as well as how doctors are reimbursed for years to come. They would continue to leave US CFS patients in a dustbin diagnostic limbo. With the October 1 Partial Code Freeze looming there will be limited opportunities to make representations to the agencies charged with development of ICD-10-CM.

Recommended action: That CFSAC committee revises the May 2010 Recommendation regarding ICD-10-CM coding to bring it back in line with the Recommendation of August 2005, as well as all other ICD classifications, both international and clinically modified. CFSAC Committee discusses what representations might be made and to which agencies.

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

Proposed Recommendation, seconded, and voted in favour of, unanimously.


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.

 

[Sasha]

Thanks for posting that summary, Suzy - I'm one of the ones unable to watch the broadcast due to buffering problems so it's good to know what's going on.

I was horrified to see earlier in this thread that there is no extra money forthcoming from the NIH following the SOK conference - the cuts in the NIH budget are about 1% so that's no justification for not making our share in line with our disease burden and prevalence relative to other diseases. Unbelievable. I'm so very disappointed.

 

[Hope123]

Having problems viewing the broadcast now at 3:38.

CFSAC did pass a resolution to ask the Secretary for funds for ME/CFS research which would require applicants in different institions to work together on projects and not separately. So we wouldn't have infectious disease docs working separate from immunology/ neurology/ etc. docs and researchers can share info perhaps. However the Secretary will have to look at the recommendations and decide whether/ how to fund the proposal. I might have gotten some details wrong as this is the gist but the final CFSAC recommendations will have the exact language.

 

[Sasha]

CFSAC did pass a resolution to ask the Secretary for funds for ME/CFS research which would require applicants in different institions to work together on projects and not separately. So we wouldn't have infectious disease docs working separate from immunology/ neurology/ etc. docs and researchers can share info perhaps. However the Secretary will have to look at the recommendations and decide whether/ how to fund the proposal. I might have gotten some details wrong as this is the gist but the final CFSAC recommendations will have the exact language.

Have I misunderstood the earlier comment about no more money coming from the NIH? I really, really, hope so!

 

[OneWaySurvival]

Having problems viewing the broadcast now at 3:38.

Video is still down at 3:45. Too bad, video went down right in the middle of afternoon session of public comments. I had come back to follow this specifically. Hopefully this will be archived b/c people went thru a lot of effort and energy to be heard.

 

[Sing]

The broadcast stopped during Rachel's testimony, right after she was saying that in her teenage years, she never had to worry about finals, because......This was about a half hour ago.

 

[Hope123]

Have I misunderstood the earlier comment about no more money coming from the NIH? I really, really, hope so!

No, you didn't misunderstand the statement. The NIH Workshop did not generate any new funding (i.e. committments from NIH institutes to sponsor a request for studies -- Trans-NIH group though is still putting together final documents talking about the meeting) so far so that is why CFSAC took it upon themselves to make a recommendation. . A recommendation though doesn't mean anything will be done or that any money will be made available. It just means CFSAC thinks something needs to be done.

 

[Sasha]

No, you didn't misunderstand the statement. The NIH Workshop did not generate any new funding (i.e. committments from NIH institutes to sponsor a request for studies -- Trans-NIH group though is still putting together final documents talking about the meeting) so far so that is why CFSAC took it upon themselves to make a recommendation. . A recommendation though doesn't mean anything will be done or that any money will be made available. It just means CFSAC thinks something needs to be done.

Thanks, Hope - I don't understand how this NIH stuff works, though - does that mean that it is still possible for the Trans-NIH group to allocate funding?

 

[Hope123]

Thanks, Hope - I don't understand how this NIH stuff works, though - does that mean that it is still possible for the Trans-NIH group to allocate funding?

As I understand it, neither the Office for Women's Health (under which CFS resides) nor the Trans-NIH committee has much/ any money to give to researchers. Instead they try to "sell" CFS to the various grant-making institutes (like the National Cancer Institute for instance) in the hopes they will capture some interest from them or try to find projects already going on that CFS might fit under. Gov't is complicated and I'm just learning about these things gradually.

 

[Hope123]

Call Granicus, the group videocasting the event, for problems with the broadcast or if you need help:

http://www.granicus.com/form/Contact.html

I still can't see anything but they say they're working on it. Call them and tell them if you're having issues also.

 

[usedtobeperkytina]

What

What the Trans-NIH ME/CFS Working Group does: http://orwh.od.nih.gov/CSF 2011/faq.htm

Tina

 

[Sing]

Place for Public Comment?

I only paid a sort of overview attention today, but caught some of the jist. As with Wanda Jones, I felt the tone and spirit of this meeting was very good--positive and collaborative. I am feeling there is hope!

But I also noted that there is a site where the public may leave comments, and that it would be important to do so, re: the changes in classifications, so whoever has that information, please post it on this thread and all over the place so our patient community can help out.

 

[Nielk]

I only paid a sort of overview attention today, but caught some of the jist. As with Wanda Jones, I felt the tone and spirit of this meeting was very good--positive and collaborative. I am feeling there is hope!

But I also noted that there is a site where the public may leave comments, and that it would be important to do so, re: the changes in classifications, so whoever has that information, please post it on this thread and all over the place so our patient community can help out.

I agree with you. Maybe i'm naive and don't have much experience of how these organizations usually work, but, I felt very positive energy in that room. I felt that they really want to listen to our problems and they understand the intensity of it. They seemed to really want to work out a way to get us more funding and to have the CDC change their criteria and website.
They wanted to work with Klimas to help patients get medical funding for tests they need and coverage from Social Security.
Maybe I am naive and nothing will come out of this but I'm hopeful that I'm right.

 

[Dx Revision Watch]

But I also noted that there is a site where the public may leave comments, and that it would be important to do so, re: the changes in classifications, so whoever has that information, please post it on this thread and all over the place so our patient community can help out.

Which classifications are you refering to Sing? The proposals for DSM-5 or the longstanding proposals for ICD-10-CM?

Suzy

 

[OneWaySurvival]

Tune into Day 2 of meeting:
http://nih.granicus.com/MediaPlayer.php?view_id=26&event_id=43

Public comments going for 30 more minutes until 2pm ET.

I felt compelled to post this because of the powerful comments during the 1st 30 minutes. If you didn't watch, please make a point to go back and watch the archived footage when it's available in a few days. The 86 year old man followed by a 15 year old girl (and then another) were so inspirational and heart-wrenching. Thank you!