CFSAC Meeting Scheduled for January 13, 2015

Sing

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You'd have had to have replied to the draft report, meaning, have painstakingly gone through it line by line to know in quick order just what they were refering to. I'd done this and so caught a good deal of the discussion, but then my attention would either flicker off or I couldn't pay attention because I was trying to remember how to spell while making a note. (Once I could write automatically but now I often don't know how to write words without focussing slowly on them until the right spelling comes back. My handwriting has also been breaking down.) Anyway, my best take is that they did a very good job for us as efficiently as they could.
 

beaker

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According to my notes and recollection...

Donna reported that, with the IOM working on a clinical case definition, language that could be construed as a dig at CDC/NIH was not included. But Dr. Kaplan resisted the censorship.

Barbara James tried to cut off, for lack of time, Dr. Kaplan's final motion recommending that the CCC be adopted until updated criteria are accepted. Discussion was curtailed, and subsequent items recommending that an ME/CFS committee review the IOM Report and agree on a single case definition to be modified for research purposes and widely disseminated remained. No language specified that this ME/CFS committee of stakeholders would be comprised of experts.

The Committee quickly passed its motion of acceptance and then continued to deliberate on different topic for another 15 minutes.
Wondering if you would please clarify. Did they end up voting on Dr. Kaplan's motion ? Thank you.
 

jimells

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(Once I could write automatically but now I often don't know how to write words without focussing slowly on them until the right spelling comes back.
Yes, I have this problem too. It's very annoying, and a very strange feeling when I can't figure how to spell something I'm sure I used to know. The Firefox browser's spell check works pretty good, fortunately. I hate appearing to be illiterat.
 

Ember

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Their document will certainly be respectful but it began by recommending that ME be distinguised from CFS and that the CCC be universally adopted until such time as updated criteria are accepted.
Mary Dimmock's unofficial version of CFSAC's recommendations jives with my notes and recollection. There was no language recommending that ME be separated from CFS. Such language could presumably be construed as a dig at CDC/NIH and was not included.
 

Sing

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Mary Dimmock's unofficial version of CFSAC's recommendations jives with my notes and recollection. There was no language recommending that ME be separated from CFS. Such language could presumably be construed as a dig at CDC/NIH and was not included.
I aplogize if I remembered that incorrectly. Maybe what I heard was a comment or interaction on this subject and my brain didn't take in the final language. It sure would help in this country if ME could be separated from CFS--only wish!
 

Ember

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It sure would help in this country if ME could be separated from CFS--only wish!
According to @caledonia, “The upcoming WHO ICD-10-CM codes (medical billing codes for the US) as of Oct. 1, 2015 will have separate codes for ME and CFS. In addition, each one excludes the other. So if you're diagnosed with ME, you can't be diagnosed with CFS and vice versa.” Take note of this post!

Caledonia adds, "The term ME/CFS is confusing. And there is no billing code for it. It doesn't actually officially exist, even though the NIH has picked up on using it (apparently because we patients are?)." But CFSAC has echoed the Panel in claiming, "ME/CFS exists."
 

NK17

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Thank you all for trying to listen, follow, take notes, report etc.
I couldn't do any of the above and your help is greatly appreciated.
 

Ember

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@Ember, do you have a link for those exact codes and illness definitions/descriptions according to the WHO-10-CM?
My information comes from the post that I cited above via hyperlink and from this article by Mary Kindel on MEAdvocacy.org:
The ICD has variations in each country. In the US, it's called ICD-CM. In the current version, ICD-9-CM, ME is not classified in the tabular listing of diseases, meaning it doesn’t “exist”. I’ve heard of only a handful of ME patients in the US able to get diagnosed with ME. Everyone else has been diagnosed with CFS.

Luckily for us, this has been rectified in the ICD-10-CM, which goes into effect Oct. 1 2015. G93.3 (the code for ME), will then be listed in the tabular listing of diseases making it officially "exist". The timing could not be better. We need to start using it!

It also has an Exclude1 for CFS (R53.82). The same with CFS – it has an Exclude1 for ME. This means you can't be diagnosed with both ME and CFS at the same time. ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So – the ICD-10-CM officially states that ME and CFS two separate diseases, classified in two different categories, each mutually exclusive of each other.

The language we use is important, and using the correct language to refer to our disease will help reinforce our campaign. MEadvocacy.org, along with our sponsor May12.org, and the National Campaign for ME have already started using the term ME to mean true ME. We will no longer be using the term CFS, or even worse, the mixed name ME/CFS*, to mean ME. When we mean ME, we will say ME.
*Note: There is no ICD code for ME/CFS, CFS/ME or CFIDS - only CFS and ME. The NIH’s use of the term ME/CFS is improper. We ask that they stop using this term, and go back to using CFS as the CDC is still doing.
 

Sing

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Thank you, Ember, for explaining the codes. Does the ICD-10-CM ME G93.3 describe ME at all or simply list it under Neurological Diseases?
 
@Ember, do you have a link for those exact codes and illness definitions/descriptions according to the WHO-10-CM?
Thank you, Ember, for explaining the codes. Does the ICD-10-CM ME G93.3 describe ME at all or simply list it under Neurological Diseases?
The ICD-10 CM codes are online. ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2015/
Download the pdf and look under the Tabular Listing.

Chapter 6
Diseases of the nervous system (G00-G99)
Other disorders of the nervous system (G89-G99)
G90 Disorders of autonomic nervous system
G93 Other disorders of brain
G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Excludes1: chronic fatigue syndrome NOS (R53.82)
Chapter 18
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)
General symptoms and signs (R50-R69)
R53 Malaise and fatigue
R53.8 Other malaise and fatigue
R53.82 Chronic fatigue, unspecified
Chronic fatigue syndrome NOS
Excludes1: postviral fatigue syndrome (G93.3)
Excludes Notes
The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

Excludes1
A type 1 Excludes note is a pure excludes. It means 'NOT CODED HERE!' An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is used when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.
(Bolding mine)

There is nothing further about definitions or descriptions for any diseases. This is merely a classification, but even that can say a lot.
 

Ember

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Jeannette Burmeister's comment to CFSAC: More HHS Disregard for the Law
Gabby says:
January 18, 2015 at 12:01 am

When I saw your original e-mail, I sent one to out to Barbara as well indicating my concern about this. I have not received a reply from her. Thank you for informing us about this and following up with it. This HHS web is getting curiouser and curiouser.
Are you concerned about freedom of speech for CFSAC members? HHS apparently wants to control the narrative.
 
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Nielk

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Are you concerned about freedom of speech for CFSAC members? HHS apparently wants to control the narrative.
I'm concerned about the independence of CFSAC. don't forget some members have been threatened just for asking some questions.

CFSAC voting members are non government people. They are supposed to give recommendations to the government.

If the government controls what CFSAC says in any way, it is an illegal breach.
 

Ember

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I'm concerned about the independence of CFSAC....
They are supposed to give recommendations to the government.
“This HHS web is getting curiouser and curiouser;” perhaps we could all be afforded the same concern.