ME agenda: update on status of this site

ME agenda: update on status of this site

This site was created in June 2007 for ME patients, carers and advocates and provided information, resources and commentary on the political issues affecting the lives of UK Myalgic encephalomyelitis (ME) patients.

In 2009, my primary advocacy focus shifted towards monitoring the development of DSM-5* (published May 2013) and ICD-11 (currently scheduled for presentation to the World Health Assembly in May 2018).

In 2010, I created Dx Revision Watch (originally DSM-5 and ICD-11 Watch) specifically for monitoring the development of these two classification systems.

ME agenda site will remain online for its post archives (Post Index to approximately 980 posts) and for occasional, important information relating specifically to ICD-11, DSM-5 and ICD-10-CM.

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I have a number of other WordPress.com sites:

http://suzychapman.wordpress.com/ status: extension site for Dx Revision Watch for occasional, selected material.

Twenty-six soldiers of lead status: extension site to ME agenda for occasional, selected material.

Read ME UK Events status: archived.

Read ME UK Events was created in March 2008 in response to the considerable concerns surrounding the April 2008 Royal Society of Medicine conference on “Chronic Fatigue Syndrome” and to promote the various protests that were staged.

Suzy Chapman can be contacted via the Dx Revision Watch Contact page

Follow Dx Revision Watch on Twitter @dxrevisionwatch

*DSM; DSM-IV; DSM-IV-TR; DSM-IV-PC; DSM-V; DSM V; DSM-5; DSM 5 are registered trademarks of the American Psychiatric Association

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New Twitter address and new domain for Dx Revision Watch

New Twitter address and new domain for Dx Revision Watch

Please note the domain for the sister site, Dx Revision Watch, has changed to

http://dxrevisionwatch.com

Previous links to posts and pages are being mapped across to the new domain but you may like to update Bookmarks and update links to the Home Page on websites and blogs.

The Twitter page associated with both sites has also changed from

http://twitter.com/meagenda

to

http://twitter.com/dxrevisionwatch

@dxrevisionwatch

Position statement (ICD-10-CM proposed coding issue)

Position statement (ICD-10-CM proposed coding issue)

Shortlink: http://wp.me/p5foE-3kj

25 September 2011

Since I continue to be misrepresented on at least one platform I am reluctantly publishing a public position statement.

ME agenda is the name of one of several WordPress sites that I own. The site name was registered with WordPress in 2007. ME agenda is also the username I use on Facebook, Twitter and on a number of other internet platforms.

Within the last few days, ME agenda has several times been referred to as “a group” on Phoenix Rising forum and elsewhere. I have already clarified that ME agenda is not a “group” nor any kind of organisation.

On the Disclaimer page of my Dx Revision Watch website it states:

Dx Revision Watch is not an organisation.

“This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organisation (WHO) or any other organisation, institution, corporation or company.

“This site has no affiliations with any commercial or not-for-profit organisation. The site operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

On my ME agenda website Disclaimer page it also states:

ME agenda is not an organisation.

“This site has no connection with and is not endorsed by any organisation, institution, corporation or company. The site has no affiliations with any commercial or not-for-profit organisation and operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

So ME agenda is not “a group”; does not function as “a group” nor as any form of organisation, and the name ME agenda and my websites are associated only with one individual – myself.

The advocacy work that I do under my own name and in association with the name ME agenda is undertaken as an individual with an interest in a specific health area, as a primary carer of a young adult. I do not claim a mandate to represent others and the views and opinions I hold are the views and opinions of a single individual.

I therefore request that neither I nor ME agenda nor my websites are referred to on any platform as “a group”, since this is erroneous and misrepresents me.

It has also been misstated on Phoenix Rising forum and elsewhere, that I am “trying to get CFS reclassified as ME.”

This is not the case and again, misrepresents my position. My position is this:

I consider as an individual, not as any form of “group”, since I am not any form of “group”:

that it will hurt patients if Chronic fatigue syndrome is coded in ICD-10-CM under Chapter 18, the chapter for “Symptoms, signs and ill-defined conditions”, under “R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS”;

that Chronic fatigue syndrome should be coded to the “G93” parent class, in line with ICD-10, ICD-10-CA (Canada) and ICD-10-GM (Germany), and in line with ICD-11 proposals that Chronic fatigue syndrome should be classified within Chapter 6: Diseases of the nervous system;

that classifying Chronic fatigue syndrome under the Chapter 18 “R” codes, in ICD-10-CM, will render patients more vulnerable to the proposals of the DSM-5 “Somatic Symptom Disorders” workgroup.

These are views shared by other advocates, patients and carers, internationally, by the US CFSAC Committee (the Chronic Fatigue Syndrome Advisory Committee that provides advice and recommendations to the Secretary of Health and Human Services) and by a number of US 501(c)(3) registered patient advocacy organisations.

At no time have I stated or implied that I am “trying to get CFS reclassified as ME”.

It should also be noted that I have had no involvement in or input into the initiative of the US Coalition4ME/CFS to make representations to the NCHS Committee responsible for updates to the US specific ICD-9-CM and development of ICD-10-CM, which replaces ICD-9-CM in October 2013.

I hope this makes my position clear and I trust that there will be no future misrepresentation of my views or my actions on any platform.

Discussion of the issue of the long-standing proposals for the coding of Chronic fatigue syndrome in ICD-10-CM was on the agenda of the meeting of the ICD-9-CM Coordination and Maintenance Committee which took place on September 14.

An audio of this meeting and PDFs of meeting materials can be accessed from this page on the CDC website:

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

These materials and links and related ICD-10-CM coding issue material will be added to this site in due course.

Suzy Chapman
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http://dxrevisionwatch.wordpress.com
https://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda