Federal Notice of next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Federal Notice of next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

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

Update @ October 19, 2011

An expanded version of the email I received from Mr Emmett Nixon on October 14 has now been posted on the CFSAC site at http://www.hhs.gov/advcomcfs/notices/n101811.html which includes the following:

“We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.”

**********************************************************************************************

Fall CFSAC meeting

The Federal Notice announcing dates for the Fall Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was issued on October 5, 2011 and can be read here Federal Notice. At the time of publishing, an agenda for this meeting has yet to be released. I will update when the agenda has been published.

Custom TinyURL: http://tinyurl.com/November2011CFSAC

The two day meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, DC.

Since May 2009, the entire meeting proceedings have been streamed as live video with videocasts posted online a few days after the meeting has closed. For the November meeting, CFSAC has stated that only a live audio feed will be provided rather than real-time visuals and auto subtitling and that a high quality video will be provided at a later date.

The Federal Notice can be read below and beneath that, a clarification received on October 14, from Mr Emmett Nixon (HHS/OAHS), CFSAC Support Team.

Meeting of the Chronic Fatigue Syndrome Advisory Committee

A Notice by the Health and Human Services Department on 10/05/2011

Summary

As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

Table of Contents

DATES:
ADDRESSES:
FOR FURTHER INFORMATION CONTACT:
SUPPLEMENTARY INFORMATION:

DATES:

The meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011. The meeting will be held from 9 a.m. to 5 p.m. on November 8, 2011, and 9 a.m. to 4:30 p.m. on November 9, 2011.

ADDRESSES:

Holiday Inn Capitol; Columbia Room; 550 C Street, SW., Washington, DC 20024; Hotel (202-479-4000).

FOR FURTHER INFORMATION CONTACT:

Nancy C. Lee, MD; Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION:

CFSAC was established on September 5, 2002. The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs , when it is finalized. The meeting will be recorded and archived for on-demand viewing through the CFSAC Web site. It will be available by audio on both days and the call-in numbers will be posted on the CFSAC Web site.

Public attendance at the meeting is open. Those attending the meeting will need to sign-in prior to entering the meeting room. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony on both days of the meeting; pre-registration for oral testimony is required. Individuals who wish to address the Committee during the public comment session must pre-register by Wednesday, October 26, 2011, via e-mail to cfsac@hhs.gov. Time slots for public comment will be available on a first-come, first-served basis and will be limited to five minutes per speaker; no exceptions will be made. Priority will be given to individuals who have not presented public comment at previous CFSAC meetings. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov, prior to the close of business on Wednesday, October 26, 2011. If you wish to remain anonymous, please notify the CFSAC support team staff upon submission of your materials to cfsac@hhs.gov.

If you do not submit your written testimony by the close of business Wednesday, October 26, 2011, you may bring a copy to the meeting and present it to a CFSAC support team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

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 cfsac@hhs.gov 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 cfsac@hhs.gov .

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. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other personal identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: September 30, 2011.

Nancy C. Lee,

Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee.

[FR Doc. 2011-25739 Filed 10-4-11; 8:45 am]

 

On October 14, I received the following clarifications from Mr Emmett Nixon, (HHS/OAHS) CFSAC Support Team, in response to queries first raised with Dr Nancy Lee, on October 11, concerning the arrangements for the recording and streaming of this meeting and the rationale behind the change of venue.

Mr Nixon’s response (October 14, 2011):

“We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.

“We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.

“There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs . This recording will provide a higher quality video at substantially lower cost.

“Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.

“The CFSAC Support Team”

 

On October 17, I wrote again to Mr Nixon, CC Dr Nancy Lee and Dr Chris Snell, Chair, CFSAC Committee, requesting that the decision not to provide live video streaming be reviewed, citing the issue of accessability to a public meeting by a patient group with disabilities, sensory processing difficulties and cognitive impairment and that a precedent had been set in May 2009 when video streaming was introduced for these meetings, which are viewed live not just in the US, but internationally.

In raising this issue with CFSAC Support Team, I have presented my concerns as an individual and have no connection with any other initiatives or approaches that might be being made to the Committee in respect of similar concerns over the arrangements for this November meeting.

 

Related material

Discussion of proposals for coding of CFS for ICD-10-CM at May 10-11, 2011 CFSAC meeting

Discussion of proposals for coding of CFS for ICD-10-CM at May 10-11, 2011 CFSAC meeting

Discussion of proposals for coding of CFS for ICD-10-CM at May 10-11, 2011 CFSAC meeting

Shortlink: http://wp.me/pKrrB-1gv

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;

• the science and definition of CFS; and

• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Spring meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held on May 10-11, 2011 in Room 800, Hubert H. Humphrey Building, 200 Independence Ave, S.W., Washington, D.C.

The Fall meeting has been announced for Tuesday, November 8 and Wednesday, November 9 but will be located in a different venue. The November meeting will be hosted at the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, D.C. See next post for Federal Notice. At the time of publication, no agenda for the Fall meeting has been issued.

Minutes Day One and Two Spring 2011 meeting from this page: Minutes May 10-11 CFSAC

Presentations Day One and Two: Presentations and Meeting Materials

Public and Written Testimonies here: Public Testimonies

Recommendations approved from Spring meeting: Recommendations CFSAC May 10-11

Videocasts of the entire two day proceedings can be viewed here: Videocasts Day One and Two

Current Roster     CFSAC Charter

Discussion of ICD-10-CM and DSM-5 at the May CFSAC meeting

Of particular interest to the scope of this site was the Agenda item on Day One at 1:15 p.m.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns
Committee Members

Dr Wanda Jones, outgoing Designated Federal Officer for CFSAC, had invited a representative from the National Center for Health Statistics to attend the meeting, though no-one had been available for that date.

Instead, Dr Jones presented Committee members with a four page document ICD-related questions from CFSAC for May 2011 meeting as background information.

The document, which can be downloaded in PDF format here, set out responses to the following questions:

What are the key steps in development of the ICD-10-CM?
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?
How is the ICD-CM used in policy-related decision making?
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?
How does ICD coding relate to DSM coding (or does it)?
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM

CFSAC Recommendations – May 10-11, 2011

Following a 45 minute discussion of the forthcoming partial code freeze, the implications for CFS and ME patients of current proposals for ICD-10-CM and in the context of draft proposals by the DSM-5 Work Group for “Somatic Symptoms Disorders”, a new Recommendation was proposed by Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee.

The specific recommendation articulated by the Committee in respect of the agenda item above was:

1. 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 ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s 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 US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Information on the ICD-9-CM Coordination and Maintenance Committee September 2011 meeting referred to by Dr Jones, in the Minutes, can be found on this page.

Information of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) draft due for implementation in October 2013 can be found on this page.

Video of this section of the meeting can be viewed here at Videocast Day One at 4hrs 27 mins in from start of broadcast.

I should like to thank Dr Lenny Jason, whose term as a CFSAC Committee member ends following the November meeting, for informing the Committee around current proposals for the forthcoming ICD-10-CM, on the classification of PVFS, ME and CFS in ICD-10 and on the development of ICD-11 and for also raising with the Committee concerns around DSM-5, an issue that had not previously been discussed in any depth at a CFSAC meeting.

Extract (Pages 26-29) Minutes May 10-11 CFSAC

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

• Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

• Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

• Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.
o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.
o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion. Opened the floor for discussion.

Dr. Wanda Jones

• Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, ( the ICD) for use and about opportunities for dialogue.

• Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources of CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS).

• Noted that as a result no one was available for the CFSAC meeting.

Page 27 of 41

• In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

• Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

• Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making.

• Noted also the relationship between the coding and the diagnostic and statistical manual (DSM). Stated that the information was provided by the NCHS and is meant to generate discussion.

• Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage.

• Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings.

• Noted that this was the process for people interested in CFS coding to become involved. Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM.

• Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

• Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating.

• Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

• Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

• Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

• The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus) under a G-code, being G93.3 or diseases of the nervous system. Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries.

• Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it.

Page 28 of 41

It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

• Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 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.

• Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify.

• Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].  [Ed: Complex Somatic Symptom Disorder]

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder [sic] [Ed: pain disorder]  into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Dr. Klimas seconded the motion. Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

Dr. Jason restated his recommendation.

Page 29 of 41

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and

Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website. She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Page 30 of 41

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Extract from Minutes, CFSAC Day One: May 10, 2011 ends]

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations 10-11 May 2011

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations May Meeting 10-11 May, Public and Written Testimony

Shortink: http://wp.me/p5foE-3iw

The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011.  A copy of the Agenda for this meeting will be posted as soon as it becomes available.

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

The meeting agenda is not yet available but a list of those who have registered to give Public Testimony and who have submitted Written Testimony has been posted on the CFSAC website on this page:

http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html

It is hoped that the issue of proposed codings for the forthcoming US specific Clinical Modification of ICD-10, which will be known as “ICD-10-CM” and which is scheduled for implementation in October 2013, will have been tabled for further discussion. The CFSAC Recommendation adopted at the May 2010 meeting is problematic and requires further discussion and revision.

See: Dx Revision Watch posts:  

“CFS orphaned in the “R” codes in US specific ICD-10-CM”: http://wp.me/pKrrB-V4

“The clock is ticking for CFS: Partial Code Freeze for ICD-9-CM and ICD-10-CM/PCS Finalized (US)”: http://wp.me/pKrrB-Un

 

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations
May 10-11, 2011
Room 800, Hubert H. Humphrey Building
200 Independence Ave, S.W.
Washington, D.C. 20201

Meeting Materials
Recommendations Chart

Public Testimony

Tuesday, May 10, 2011

Baker, Keith [PDF, 12 kb] PDF available from CFSAC site
Landson, Joseph D.
Manganaro, Kathleen

Wednesday, May 11, 2011

Smith, Rachel [PDF, 15 kb] PDF available from CFSAC site
Chapo-Kroger, Lori

Written Testimony Received Prior to the Meeting Date

Anonymous 1
Anonymous 2
Anonymous 3
Chu, Lily
Danek, Peg
DiPasquale, Ben
Drasner Haban, Johanna I.
Fairman, Matthew
Farrell, Tracy [PDF, 11 kb] PDF available from CFSAC site
Jackson, Ken
Jackson, Suzan
Kitei, Mindy
McDermott, Lolly
McGrory Richardson, Nancy
McNamara, Mary E.
Paivanas, Sue A.
Pratt, Danielle
Pressner, Erin
Rachel
Reilly, Esq. Justin
Rogalla, Kathleen
Spinhirne, Jerrold
V. Katie
Vokal, Toby
Wiley, Janelle

Related material

Previous ME agenda post: Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) : http://wp.me/p5foE-3ih

CFSAC Notices

http://www.hhs.gov/advcomcfs/notices/index.html

CFSAC Roster

http://www.hhs.gov/advcomcfs/roster/index.html

CFSAC Meetings

Agenda; Minutes; Presentations; Recommendations

http://www.hhs.gov/advcomcfs/meetings/index.html

Recommendations to the Secretary of Health and Human Services

http://www.hhs.gov/advcomcfs/recommendations/index.html

Previous two meetings:

May 10, 2010 Meeting

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – May 10, 2010

http://www.hhs.gov/advcomcfs/recommendations/05102010.html

October 12, 2010 Science Day
October 13-14, 2010

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – October 13-14, 2010

http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

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

The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011.  A copy of the Agenda for this meeting will be posted as soon as it becomes available.

“Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.”

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;

• the science and definition of CFS; and

• broader public health, clinical, research and educational issues related to CFS.

• Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.

CFSAC Notices

http://www.hhs.gov/advcomcfs/notices/index.html

CFSAC Roster

http://www.hhs.gov/advcomcfs/roster/index.html

CFSAC Meetings

Agenda; Minutes; Presentations; Recommendations

http://www.hhs.gov/advcomcfs/meetings/index.html

Recommendations to the Secretary of Health and Human Services

http://www.hhs.gov/advcomcfs/recommendations/index.html

 

May 10-11, 2011 CFSAC Meeting

PDF: http://edocket.access.gpo.gov/2011/pdf/2011-6702.pdf

Html: http://edocket.access.gpo.gov/2011/2011-6702.htm

[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Notices]
[Page 15982]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr22mr11-88]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Meeting of the Chronic Fatigue Syndrome Advisory Committee
———————————————————-

AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health.

ACTION: Notice.

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Tuesday and Wednesday, May 10 and 11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201. For a map and directions to the Hubert H. Humphrey building, please visit http://www.hhs.gov/about/hhhmap.html .

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site,
http://www.hhs.gov/advcomcfs  when it is finalized. The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site.

[Ed: the real-time streaming also has real-time auto transcription.]

Public attendance at the meeting is limited to space available.

Individuals must provide a government-issued photo ID for entry into the building where the meeting is scheduled to be held. Those attending the meeting will need to sign-in prior to entering the meeting room.

Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.

Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to cfsac@hhs.gov . Time slots for public comment will be available on a first-come, first- served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov  prior to the close of business on Monday, April 18, 2011.

If you do not submit your written testimony by the close of business Monday, April 18, 2011, you may bring a copy to the meeting and present it to a CFSAC Support Team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at cfsac@hhs.gov  prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to cfsac@hhs.gov

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 and made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other individually identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]
BILLING CODE 4150-42-P

Previous two meetings:

 

May 10, 2010 Meeting

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – May 10, 2010

http://www.hhs.gov/advcomcfs/recommendations/05102010.html

• The Secretary should ask the blood community to defer indefinitely from donating any blood components, any person with a history of chronic fatigue syndrome.

• The Secretary should recognize the special challenges of ensuring that CFS is part of any efforts to train or educate health care providers under health reform.

• The Secretary should direct CMS, AHRQ, and HRSA to collaborate on developing a demonstration project focused on better value and more efficient and effective care for persons with CFS. This can be a public-private effort, and monitoring outcomes and costs should be part of the overall evaluation.

• The Secretary should ask the Designated Federal Officer to explore adding a web-based meeting to conduct CFSAC business.

• 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).*

*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:

post-viral fatigue syndrome (in the nervous system chapter), and
chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).

HHS has no plans at this time to change this classification in the ICD 10-CM.

October 12, 2010 Science Day
October 13-14, 2010

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – October 13-14, 2010

http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

The specific recommendations articulated by the Committee are:

• Develop a national research and clinical network for ME/CFS (myalgic encephalomyelitis/CFS) using regional hubs to link multidisciplinary resources in expert patient care, disability assessment, educational initiatives, research and clinical trials. The network would be a resource for experts for health care policy related to ME/CFS.

• Engage the expertise of CFSAC as HHS moves forward to advance policy and agency responses to the health crisis that is ME/CFS.

• Adopt the term “ME/CFS” across HHS programs.

Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting

http://www.hhs.gov/advcomcfs/sebelius_memo.pdf

Posting of revised draft proposals for DSM-5 criteria postponed until August

The APA has postponed the release of revised draft proposals for DSM-5 criteria by three months

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

Slip slidin’ away…

There will be no public review of revised draft criteria for DSM-5 categories this coming May.

APA Field Trials got off to a late start and the DSM-5 timeline continues to slip.

Online posting of draft disorders and criteria proposed by the DSM-5 Work Groups for new and existing mental disorders had been scheduled for May-July, this year. Revised criteria were expected to be posted online in May, for a period of approximately one month to allow the public to review proposals and submit comment.

But according to a revised Timeline on the American Psychiatric Association’s (APA) DSM-5 Development site, this second public review exercise is now postponed until August-September 2011:

“August-September 2011: Online Posting of Revised Criteria. Following the internal review, revised draft diagnostic criteria will be posted online for approximately one month to allow the public to provide feedback. This site will be closed for feedback by midnight on September 30, 2011.”

There are also references within the DSM-5 Timeline to ICD-10-CM and the forthcoming ICD-10-CM Partial Code Freeze, and to ICD-11.

ICD-11 Beta Draft

According to sources, ICD-11 Revision Steering Group are still working towards having a Beta Draft ready for May 2011.

But from a PowerPoint presentation posted briefly on the ICD-11 Revision website at the end of February, but swiftly removed following enquiries, evidently the WHO has been discussing the pros and cons of postponing the release of its own Beta Draft for public input until the autumn, or until the end of 2011, or possibly even May 2012.

Another ICD Revision document: ICD Revision Project Plan v 2.1, projects a date of May 2012 for release of the Beta Draft. Since there is no definitive and recent ICD-11 timeline on any of the WHO’s ICD Revision sites, and since ICD Revision is keeping schtum, it remains unclear at what point in the timeline a Beta Draft for ICD-11 will be released for public scrutiny and input (as opposed to purely internal use, as the Alpha Draft had been). I will update when more information becomes available.

The original dissemination date for ICD-11 had been 2012, with the timelines for the revision of ICD-10 and DSM-IV running more or less in parallel. But in 2007/8, the release date for ICD-11 was shifted to pilot implementation in 2014 and dissemination in 2015. A “pre-final draft” of ICD-11 is projected for March 2013 with submission for WHA endorsement in May 2014. ICD Revision are balancing “incomplete software, unsatisfactory content and incomplete review process” against reduced opportunity for public input and reduced public confidence, if the timeline for the Beta were to be extended.

In December 2009, the APA announced that the publication date for their DSM-5 was being extended to May 2013.

In January 2010, APA President, Alan F Schatzburg, MD, said:

“…the extension will permit better linking of DSM-5 to the U.S. implementation of the ICD-10-CM codes for all Medicare/Medicaid claims reporting, which are scheduled to go into effect on October 1, 2013. APA will also continue to work with the World Health Organization (WHO) to harmonize DSM-5 with the mental and behavioral disorders section of ICD-11, which WHO plans to release no sooner than 2014.”

With a Partial Code Freeze looming this October for ICD-10-CM, the delays in starting field trials and now a three month postponement of publication of revised criteria for the second public review and comment period isn’t going to inspire confidence in a Task Force that has already come in for significant criticism of its oversight of the revision of DSM-IV.

Revised and expanded DSM-5 Timeline

http://www.dsm5.org/about/Pages/Timeline.aspx

(Picking up from July 2010, see webpage for full Timeline.)

[...]

July 2010 – July 2011: Invited Consumer Feedback. Throughout the field trials, feedback will be solicited from consumer and professional groups and during specialty meetings, such as NAMI, the Depression and Bipolar Support Alliance, the Science Advisory Board, Children and Adults.

July 2010 – December 2012: Drafting Text for DSM-5. Members of the DSM-5 Task Force and Work Group will begin drafting their initial text for DSM-5, including possible revisions to text descriptions within each diagnostic chapter. Text of the criteria themselves must wait to be drafted until after the completion of field trials. During this time, case studies will also be developed, which will be published after DSM-5’s release in a series of case books.

January 2011: The APA presented to the National Center for Health Statistics an updated crosswalk between ICD-9-CM/DSM-IV codes and DSM-5 codes for discussion in the biannual ICD-CM revision meetings in March and September 2011 (see “March 2011”, below). Any “new” DSM-5 disorders will be subject to addition or deletion based on field trial data and APA BOT approval.

March-October 2011: Revised Chapter and Diagnostic Coding Structure of DSM-5. The American Psychiatric Association and the World Health Organization are working closely to ensure harmonization between DSM-5 and the forthcoming 10th edition of the International Classification of Diseases-Clinical Modification (ICD-10-CM), which will be adopted for use in the U.S. by Medicare and Medicaid on October 1, 2013. In order allow for adequate time for user training and update of computerized coding systems, ICD-10-CM will freeze to further revisions on October 1, 2011. Final decisions on the chapter organization of DSM-5 will be discussed at the September 2011 National Center for Vital and Health Statistics’ annual ICD-10-CM revision conference. The harmonized DSM-5/ICD-10-CM will serve as a prototype for ICD-11, which is scheduled for publication in 2014. However, since the coding structure for ICD-11 is expected to change, DSM-5 will use the closest approximation of ICD-10-CM codes to the disorders defined by DSM-5. (See my Footnotes)

August-September 2011: Revisions to Proposed Criteria. Based on results from the first phase of field trials and from consumer and advocacy feedback, the DSM-5 Task Force and Work Group members will make revisions to the proposed DSM-5 diagnostic criteria and dimensional measures. These revised criteria and measures will be tested in a second phase of field trials.

August – September 2011: Review of Revised Criteria. Revised proposed criteria will be subjected to internal review, including a review by the DSM-5 Task Force and Research Group and by other relevant work groups.

August-September 2011: Online Posting of Revised Criteria. Following the internal review, revised draft diagnostic criteria will be posted online for approximately one month to allow the public to provide feedback. This site will be closed for feedback by midnight on September 30, 2011.

September 2011 – February 2012: DSM-5 Field Trials, Phase II. The second phase of field trials testing will focus on those diagnostic criteria and dimensional measures that required modification based on the results of the Phase I field trials. This time period will include data collection and analysis.

October 1, 2011: Although ICD-10-CM codes will not go into effect in the U.S. until October 1, 2013, most will be approved by October 1, 2011, to allow insurance companies enough time to reprogram computers for claims data and train health professionals. However, the ICD-10-CM coding system will not be locked in as of

October 1, 2011: Additional code changes will be permitted between October 2011 and October 2013 to introduce “new” disorders or to correct obvious errors of current disorders. In addition, proposals for code changes in ICD-10-CM will be routinely considered on an annual basis in 2014—after ICD-10-CM has been officially adopted.

February – August 2012: Prepare Final Draft Text (including revisions to criteria based on findings from Phase II of DSM-5 Field Trials). The DSM-5 Task Force and Work Groups will prepare the final draft text and criteria for review.

March 2012: Presentation of final DSM-5 chapter organization to APA Board of Trustees.

August 2012: Final Review. The APA will release the revised draft criteria to the APA Assembly and Board of Trustees for final review.

September – November 2012: Final Revisions to Draft Criteria. Work group members will make their last round of revisions to draft criteria based on feedback from APA’s Assembly and Board of Trustees.

November 2012: APA Assembly Approval of DSM-5.

December 2012: APA Board of Trustees Approval of DSM-5. Following approval from the Board of Trustees, the final completed manuscript will be submitted to the APA’s publishing division, American Psychiatric Publishing, Inc.

May 2013: Publication of DSM-5. The release of DSM-5 will take place during the APA’s 2013 Annual Meeting in San Francisco, CA.

October 1, 2013: Mandatory use of ICD-10-CM code numbers in DSM-5 for insurance claims.

Ed: Footnotes: The “harmonization” of DSM-5 and ICD-11

The APA participates with the WHO in the “International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders” (Chapter 5) and a “DSM-ICD Harmonization Coordination Group”.

There is already a degree of correspondence between DSM-IV and Chapter V of ICD-10. For the next editions, the APA and the WHO have committed as far as possible:

“To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.”

with the objective that

“The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

But the WHO acknowledges there may be areas where congruency between the two systems may not be achievable.

As the iCAT (the ICD-11 electronic collaborative drafting platform) stood last November, two new categories were listed in the Linearized Chapter 5, F45 – F48.0 (Somatoform Disorders) codes. It is understood from ICD documentation (DIFF File – Changes from ICD-10 [MS Excel doc. Retrieved 29.09.10; no longer available on 01.10.10]) that child categories F45.40 and F45.41 are new entities for ICD-11 [1].

Note the ICD-11 categories between F45 – F48.0, as they stood in the iCAT drafting platform last November, do not mirror current proposals of the DSM-5 “Somatic Symptom Disorder” Work Group for renaming the “Somatoform Disorders” categories of DSM-IV to “Somatic Symptom Disorders” and combining a number of existing categories under a new rubric, “Complex Somatic Symptom Disorder (CSSD)”, and the more recently proposed “Simple Somatic Symptom Disorder (SSSD)” [2][3].

[1] Screenshot iCAT, ICD-11: Chapter 5: F45 – F48.0: http://dxrevisionwatch.files.wordpress.com/2010/05/2icatchapter5f45somatoform.png

[2] Article: Erasing the interface between psychiatry and medicine (DSM-5), Chapman S, 13 February 2011: http://wp.me/pKrrB-Vn

[3] Article: Revisions to DSM-5 proposals on 14.01.11: New category proposed “Simple Somatic Symptom Disorder, Chapman S, 16 January 2011: http://wp.me/pKrrB-St

[4] DSM-5 Development website: http://www.dsm5.org/about/Pages/Timeline.aspx

Ian Swales, MP amends his understanding of government policy on CFS and ME

Ian Swales, MP amends his understanding of government policy on CFS and ME terminology (Three Parliamentary errors)

Shortlink Post: http://wp.me/p5foE-3hH

On 2 February 2011, Ian Swales (Lib Dem, Redcar) addressed a Parliamentary Adjournment Debate on ME. During that debate, the Health Minister, Paul Burstow, had stated that the World Health Organisation (WHO) uses the composite term CFS/ME for this condition.

This was incorrect. The WHO does not use the composite terms “CFS/ME” or “ME/CFS”.

In a Parliamentary Written Answer to Mr Swales, dated 16 February, the Health Minister corrected his error [1].

Mr Burstow had clarified:

“…During the Westminster Hall debate, on 4 February 2011, I said that the World Health Organisation uses the composite term CFS/ME for this condition. This was incorrect.

“The World Health Organisation classes benign myalgic encephalomyelitis and post viral fatigue syndrome under the same classification G93.3 ‘diseases of the nervous system’; subheading ‘other disorders of the brain’.

“The report of the CFS/ME Working Group to the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines.

“We do, however, intend to seek further advice on our classification and will update the hon. Member in due course.”

[Note that although Health Minister, Paul Burstow, gave the date of Ian Swales' Adjournment Debate as "4 February" in his Written Answer of 16 February, the Debate took place on 2 February 2011.]

On 17 February, Mr Swales published a report on his website which went out under the title “Swales wins battle with Government on ME”. This report had claimed:

“Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.”

But Mr Swales had misinterpreted the content of the Written Answer he had received from the Health Minister.

This has caused much confusion amongst ME and CFS patients.

Advocates have raised this misunderstanding with Mr Swales and with his Parliamentary Researcher.

Today, an amended report has been published on Mr Swales’ website under the same URL and date, but with a new title – this time it is called:

“Swales corrects Minister on World Health Organisation definition of ME”

I am appending both versions.

To recap, because this is important, and because there is a further error:

Paul Burstow, Health Minister, incorrectly stated on 2 February, during an Adjournment Debate, that the WHO uses the composite term CFS/ME for this condition. That error was corrected by Mr Burstow in his Written Answer of 17 February.

Ian Swales, MP, then claimed in a website report that he had succeeded in getting the government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses. This was a misinterpretation of Mr Burstow’s own correction and clarification. Mr Swales’ Parliamentary Office has now amended his report.

The Countess of Mar, meanwhile, tabled a Written Question of her own for which a response was provided on 1 March, by Earl Howe [3].

The Countess of Mar had tabled:

“To ask Her Majesty’s Government, further to the statement by the Minister of State for Health, Paul Burstow, on 2 February (Official Report, Commons, col. 327) that the World Health Organisation (WHO) described myalgic encephalomyelitis (ME) as Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and that this was the convention followed by the Department, in light of the fact that the WHO International Classification of Diseases 10 lists ME as a neurological disease with post viral fatigue syndrome (PVFS) under G93.3 and CFS as a mental health condition under F48.0 and that the latter specifically excludes PVFS, whether they will adhere to that classification.”

The response received on 1 March, was:

Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

“The department will continue to use the composite term chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for this condition, or spectrum of disease, as suggested by the Chief Medical Officer in his 2002 report. We recognise the condition as neurological in nature.”

But the Countess of Mar’s Written Question also contains an error.

In the International version of ICD-10 (the version used in the UK and over 110 other countries, but not in the US which uses a “Clinical Modification” of ICD-9), CFS is not classified as a mental health condition under F48.0.

Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index, where it is indexed to G93.3, the same code as Postviral fatigue syndrome.

So in International ICD-10, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome are all three coded or indexed to G93.3 under “G93 Other disorders of brain”, in Chapter VI (6): Diseases of the nervous system.

In International ICD-10, the Mental and behavioural disorders chapter is Chapter V (5).

http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480

Chapter V (5) Mental and behavioural disorders

Neurotic, stress-related and somatoform disorders are coded between (F40-F48)

Neurasthenia
Fatigue syndrome

are classified under (F40-F48) at F48.0, which specifically Excludes

malaise and fatigue ( R53 )

and

postviral fatigue syndrome ( G93.3 )

So now you know what UK government policy is and that Mr Swales had misled himself.

The forthcoming US specific ICD-10-CM

Perhaps the focus can now return to more pressing issues – like the fact that in the US, a Partial Code Freeze is looming for the forthcoming US specific version of ICD-10, known as “ICD-10-CM”.

Under longstanding proposals, the committees developing ICD-10-CM intend to retain Chronic fatigue syndrome in the R codes, and code it under R53 Malaise and fatigue, at R53.82 Chronic fatigue syndrome (NOS), but propose to code for PVFS and ME in Chapter 6, under G93.3.

The R codes chapter (which will be 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.”

Coding CFS patients under R53.82 will consign them to a dustbin diagnosis: there are no guarantees that clinicians will use the unfamiliar ME code or that insurance companies will reimburse for G93.3. It will make patients more vulnerable to the proposals of the DSM-5 Somatic Symptom Disorders Work Group. It will mean that ICD-10-CM will be out of line with at least four versions of ICD-10, including the Canadian “Clinical Modification”, and also out of line with the forthcoming ICD-11, where all three terms are proposed to be coded in Chapter 6 Diseases of the nervous system.

There are only seven months left before the 1 October Code Freeze and the clock is ticking.

 

Here is the first version of Mr Swales’ website report, followed by his amended version.

Version One:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales wins battle with Government on ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation classifies Chronic Fatigue Syndrome and ME as the same illness.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that the definition he used in the debate was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Government has now recognised that ME and Chronic Fatigue Syndrome are two different illnesses.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I hope that approaching ME as a distinct condition will help lead to better, more effective treatment for sufferers through better analysis of their possible different causes and symptoms.”

[Ends]

Version Two:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales corrects Minister on World Health Organisation definition of ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to acknowledge that the World Health Organisation does not use the composite term CFS/ME for the condition.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation “uses the composite term CFS/ME for the condition”.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that his statement was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Minister has acknowledged the error he made in the debate.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I will continue my campaign to get more effective treatment for sufferers of ME through better analysis of its causes and symptoms.”

[Ends]

The text of the Adjournment Debate can be read here, on Hansard
2 Feb 2011 : Column 323WH

Myalgic Encephalomyelitis
4.13 pm

Watch video, here, on BBC News:

http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm

 

References:

[1] Written Answer: Paul Burstow to Ian Swales, 16 February 2011, 16 Feb 2011 : Column 864W:
http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110216/text/110216w0004.htm

[2] Amended Ian Swales website report:
http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

[3] Written Answer: Earl Howe to The Countess of Mar, 01 March 2011:
http://www.theyworkforyou.com/wrans/?id=2011-03-01a.297.1

Hansard for above:
http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/110301w0001.htm#11030162000766

[4] Hansard, House of Lords Debate: Myalgic Encephalomyelitis, 22 January 2004:
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm

[5] Current codings in ICD-10 for Postviral fatigue syndrome; [Benign] myalgic encephalomyelitis and Chronic fatigue syndrome:
http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

“CFS orphaned in the “R” codes in US ICD-10-CM” and “Erasing the interface between psychiatry and medicine” (DSM-5)

Two new posts on Dx Revision Watch

Shortlink: http://wp.me/p5foE-3h3

“CFS orphaned in the “R” codes in US specific ICD-10-CM”

http://wp.me/pKrrB-V4

and

“Erasing the interface between psychiatry and medicine” (DSM-5)

http://wp.me/pKrrB-Vn

New category proposal for DSM-5: “Simple Somatic Symptom Disorder”

New category proposal for DSM-5: “Simple Somatic Symptom Disorder”

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

The most recent proposals of the DSM-5 “Somatic Symptoms Disorders” Work Group plus two key Disorder Description and Rationale PDF documents can be read on the APA’s DSM-5 Development site here:

http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

The two key Somatic Symptoms Disorders Work Group Draft Proposal documents:

    Revised Disorder Descriptions: Version 1/14/11

    Revised Justification of Criteria Version 1/31/11

Images Copyright 2011 ME agenda  No unauthorized reproduction

On 16 January, I reported on my Dx RevisionWatch site that the page for current DSM-5 proposals for the revision of the DSM-IV categories and diagnostic criteria for “Somatoform Disorders” had been updated on 14 January, with a new category proposal called “Simple Somatic Symptom Disorder”.

This proposal is in addition to the recommendations of the Somatic Symptom Disorders Work Group, published in February 2010, for grouping a number of existing Somatoform categories under a common rubric “Complex Somatic Symptom Disorder (CSSD)” and does not replace “CSSD”.

For full details see Dx Revision Watch Post #56: http://wp.me/pKrrB-St

Simple Somatic Symptom Disorder

Updated January-14-2011

See Tab: Proposed Revision:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=491

Simple (or abridged) Somatic Symptom Disorder (e.g. pain)

To meet criteria for Simple Somatic Symptom Disorder, criteria A, B, and C are necessary.

A. One or more highly distressign [sic] and disabling somatic symptoms

B. One of the following symptoms from CSSD (i.e. Disproportionate and persistent concerns about the medical seriousness of one’s symptoms; high level of health-related anxiety; or excessive time and energy devoted to these symptoms or health concerns)

C. Symptom duration is greater than 1 month

For full proposals for “Simple Somatic Symptom Disorder” open the Tabs on this page:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=491

Key links and documents associated with the proposals of the Somatic Symptom Disorders Work Group:

DSM-5 Development website: Somatoform Disorders
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

Proposal: Complex Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Proposal: Simple Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=491

Update @ 7 February 2011

The Justification of Criteria document has now been revised by the SSD Work Group to incorporate the new proposal for SSSD and some further revisions, and is replaced by a document designated DRAFT 1/31/11.

I shall be monitoring the DSM-5 Development website and if there are any further revisions to either document before the DSM-5 beta is published I will update this site.

Two key Somatic Symptoms Disorders Work Group Draft Proposal documents:

    Revised Justification of Criteria Version 1/31/11

  Revised Disorder Descriptions: Version 1/14/11

According to the APA’s DSM-5 Development Timeline, beta draft proposals are scheduled to be published by the DSM-5 Task Force in May-June, with a public review period of only around a month. The public review and comment period for the first draft, last year, had been around ten weeks.

The following patient organisations have been alerted to these revisions and sent copies of the key documents:

UK patient organisations:

Heather Walker, Action for M.E.
Neil Riley, Chair, Board of Trustees, ME Association
25% ME Group
Invest in ME
Jane Colby, The Young ME Sufferers Trust

US patient organisations and professionals:

Dr Alan Gurwitt, Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)
Dr Kenneth Friedman, IACFS/ME
Jennie Spotila, CFIDS Association of America
Dr Lenny Jason

International patient organisations and professionals:

ESME (European Society for ME)
Dr Eleanor Stein, Canada

Transcript: BBC Radio Berkshire, Anne Diamond, ME/CFS: Shepherd, Findley, Parker

Transcript of BBC Radio Berkshire Anne Diamond Show, broadcast 11 November 2010

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

On 11 November, Radio Berkshire presenter, Anne Diamond, interviewed Dr Charles Shepherd, Medical Adviser for the ME Association and Professor Leslie Findley, Clinical Director of the National ME Centre and Centre for Fatigue Syndromes. Towards the end of the item, Duncan McLarty spoke to Phil Parker, founder of the Lightning Process.

See also previous post: http://wp.me/p5foE-3dk

Within the UK, until 18 November, you can “Listen again” to the Radio Berkshire broadcast here on BBC iPlayer. The item starts 2 hours 3 mins in from the start of programme and is around 12 minutes long.

Or listen on YouTube here: http://www.youtube.com/watch?v=9YX3wFkDlhI

This transcript has been prepared by Suzy Chapman for ME agenda. Care has been taken in the preparation and proofreading of this transcript; some errors and omissions may remain.

The Anne Diamond Show, Thursday, 11 November 2010:

Anne Diamond: Last week on the show while Esther Rantzen was standing in, we looked at the subject of ME because people diagnosed with the condition are no longer able to give blood. Now we’ve had a huge response from people with experience of the condition and because this is such a controversial area we thought it might be a good idea to get some experts on to the show to deal with some of the points that have been raised.

Dr Charles Shepherd is Medical Adviser to the ME Association and Professor Leslie Findley is Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes. I spoke to them both, earlier, and I asked Charles Shepherd just what is ME and are we any closer to knowing what causes it?

Dr Charles Shepherd: Well ME stands for “Myalgic Encephalomyelitis” and in very simple terms it’s an illness which often starts with a viral infection and people then have a range of symptoms, primarily muscle symptoms, muscle fatigue and also brain symptoms, problems with memory, concentration, balance, just generally feeling unwell. And these systems – I mean these symptoms – persist for a long period of time in many of these patients; it is a very disabling and has been recognised as a neurological illness.

Anne Diamond: Yes. Professor Findley, to be absolutely clear, nowadays there’s no longer any suggestion that it’s a psychological condition, is there?

Prof Findley: Erm, no, there’s no suggestion it’s a psychological condition but psychological factors can adversely influence the symptoms and they have to be taken into account when one’s planning a total management strategy for an individual patient.

Anne Diamond: Would you agree with that, Dr Shepherd, that nowadays we don’t look upon it as a psychological condition?

Dr Charles Shepherd: Well, I thoroughly agree, you know, the Department of Health, the World Health Organisation, classifies this as a neurological illness and you know, like with many chronic disabling illnesses, psychological factors, social factors, can sometimes play a role, that’s not disputed. But it is essentially a neurological illness with other factors involved.

Anne Diamond: Now you see, since Esther was talking about this last week we’ve had an email, for instance, which says that all the research and treatment funding then has inappropriately gone to the psychiatric profession since the 1980s. What do you say to that, both of you?

Dr Charles Shepherd: Well, to a certain extent well that is true. Certainly in the UK, the vast amount of government funded research has gone in to behavioural and psychological therapies and there has been a great deal of criticism about that. Fortunately, what we now have is the Medical Research Council [MRC] setting up an expert group which I am a member of, to look into research in this illness and we have been for the past two years looking at what needs to be done in the way of biomedical research and a list of priorities in biomedical research has now been sent to the board of the MRC – they are looking at these priorities and we are expecting an announcement very shortly on this.

Anne Diamond: Professor Findley, is it true then that we’ve been wasting money – directing the money towards the psychiatric profession?

Professor Findley: We….ell! Waste is a very, is a very strong word to use. The money, I agree with Charles, could have been used perhaps more wisely, but this is a complex illness and it represents, and the MRC would state this, that it represents a group of disorders, it is not a single entity and we’re still having great trouble defining within this large group of patients the individual types of Chronic Fatigue Syndrome/ME that exist and if one takes a group of patients the symptom complex that the individuals complain of vary enormously…

Anne Diamond: And yet…?

Professor Findley: …and the NICE Guidelines recognise complex and severe Chronic Fatigue Syndrome/ME to emphasise the complexity of this, this, this illness, it is not a simple entity it’s not like some tuberculosis where you have a defined marker and a defined organism and a defined treatment.

Anne Diamond: So and Dr Shepherd, you would agree that this a range of different conditions?

Dr Charles Shepherd: Yes, and I mean this is another key point, that we have renamed and redefined this illness from ME into what’s now called “Chronic Fatigue Syndrome”, the term that the medical profession tends to use and unfortunately this has now produced, it’s rather like dumping everyone with different types of arthritis, inflammatory arthritis, osteoarthritis, infective arthritis, under one umbrella and saying that they’ve all got the same cause, the same symptoms and the same treatments and that does not apply to arthritis, it does not apply to everyone who comes under this umbrella of Chronic Fatigue/Chronic Fatigue Syndrome.

This is one of the key points the MRC is addressing the need for sub grouping people under this umbrella, finding the different causative factors that are going on and then applying appropriate different forms of management to the different types of sub groups under this umbrella.

Anne Diamond: Now, I mean, you look at the situation – for instance here in Berkshire – where our Primary Care Trusts [PCTs] are offering Cognitive Behavioural Therapy [CBT]. Is that appropriate any longer?

Dr Charles Shepherd: It’s not appropriate as a one size fits all treatment and this is our big problem with the NICE Guideline, it’s why patients object to the NICE Guideline because the NICE Guideline recommends CBT and Graded Exercise Therapy [GET] should be offered to everyone with mild to moderate ME and this is not what we feel is appropriate one size fits all treatment. Many patients find these therapies either ineffective, around about 50% with CBT and in the case of Graded Exercise treatment, if you apply this wrongly you make these patients worse. That’s why there is terrific concern and anger amongst the patient community with the NICE Guideline.

Anne Diamond: Can I move on to the…this business of the Lightning Therapy, the Lightning Process? Because it was very controversial when Esther was talking about it last week. Her daughter went through it, but some listeners were angry that we even mentioned the Lightning Process. Why is it so controversial? Professor Findley, first…

Professor Findley: Erm, that’s a very straightforward question with a very complex answer. I think the Lightning Process has a part to play in the management of some patients. It is not a specific treatment for Chronic Fatigue Syndrome/ME, it’s used to treat a whole raft of conditions. But there are some patients that can be recognised who have factors which would lend themselves – factors which are perpetuating the illness – which would lend themselves to the Lightning Process.

Now these are, in my opinion, a very small group of patients overall, but because Lightning Process practitioners are often only experienced in that one technique they apply it to anybody who visits them with an objective of getting treatment, so their patients are treated in an unselected manner and therefore this has led to all sorts of complications and dissatisfaction.

Anne Diamond: Dr Shepherd?

Dr Charles Shepherd: Well, I have this strong objection to the Lightning Process – in particular the way it’s marketed to very vulnerable groups of people with adverts which are making unsubstantiated claims about success rates.

Professor Findley: Agreed…agreed.

Anne Diamond: But it clearly is true for some and as you both seem to be agreeing that this is multi-factorial, very complex, no one patient is exactly the same as the other.

Professor Findley: Well I think I absolutely agree with this, but erm… the…and I agree with Charles’ comments on the Lightning Process – it’s been badly, badly applied, poorly researched and we would use it or recommend it probably in perhaps one in thirty or one in forty of patients, after they have been properly assessed over a long period of time and more standard management programmes have been applied.

Anne Diamond: Before we run out of time, can I finally ask both of you really ‘cos a lot of people who contacted us were asking about recovery rates from ME. What can you tell us about the numbers and are indeed there any robust figures on this? Dr Shepherd, first.

Dr Charles Shepherd: Well, I wouldn’t say there were really robust figures. I think its, a lot of it is clinical judgement from individuals, you know, that see patients with this and you know, a limited amount of epidemiological research.

Where I come in is I think we probably have three groups. We have a group at one end of the spectrum who are severely effected certainly at some stage in their illness and they probably account for about 25% of the total, I mean these are people who are bed-bound, wheelchair-bound, house-bound.

We have a large group in the middle who make some degree of, I think the word here is improvement, over the course of time but do not recover but they hit a glass ceiling, 50, 60, 70% of what they were normally like and then we have a small group at the other end of the spectrum who make a much more significant degree of improvement or may even finally recover – an example there is Yvette Cooper, a former government minister. I would add that the improvement/prognosis in children/adolescents with this disease does seem to be a lot better than it is in adults.

Anne Diamond: And Professor Findley?

Professor Findley: I would, there aren’t robust figures and I think Charles is right, we would normally say that the average duration taken across the group, the average duration of this type of illness is three to five years with at least 40% of patients never getting back to previous levels of functioning and I’d agree with Charles there is the very severe group and their prognosis is appalling and they very rarely get any proper management advice.

Anne Diamond: Well that was Dr Charles Shepherd and Professor Leslie Findley speaking to me a little earlier on. It’s a very important subject isn’t it?

It’s very important that we hear a balanced argument on it. So we put some of those issues to the founder of the Lightning Process, Phil Parker. Phil’s website calls the process “A non medical tool that is tailored to help people who are stuck in their life or health”. Well BBC Radio Berkshire’s Duncan McLarty, first asked him whether he agreed that the process is only appropriate in a small fraction of ME cases.

Phil Parker: You know that sounds like scientific data but it’s not science – there’s no evidence to say that, that’s just their opinion! First thing we do is have a chat with people and we assess them as to whether this is a really useful thing for them because obviously we want to see people who we think are going to get value from this.

Duncan McLarty: But if you’re not an ME specialist how would you know if it’s appropriate?

Phil Parker: Er, well we are specialists at the Lightning Process. We know more about the Lightning Process than these people because we designed it and trained in it. So what we are looking for is, do we think these people are likely to get benefit from the stuff that we do. What we’re really interested in is how can we help these people who, who’ve got stuck, where there aren’t many solutions, is there anything we can do to help them that’s really where we’re coming from.

Anne Diamond: Well can I just say thank you very much for all your emails on the subject of ME over the last week or so. I think we’ve certainly shown that it’s a complex area with plenty of strong and sometimes conflicting views. We also asked Phil Parker whether he agreed that the process was aggressively marketed as those two experts told me.

Phil Parker: Basically our practitioners, erm, don’t make claims. What they say is, that you know our experience is, that when some people use this they can make changes. That doesn’t guarantee change. If you…you know you have a business then you want to tell people about it that doesn’t make it aggressive marketing, that’s the thing I… deny and say that all we’re doing is, say look this is something that we’ve found is very useful, have a look at it and if you want to talk to us more about it then do, if you don’t that’s fine as well. We really don’t market it aggressively at all.

Anne Diamond: Well there you are, you see, that was Phil Parker, who is the founder of the Lightning Process, and earlier on I was talking to Dr Charles Shepherd, Medical Adviser to the ME Association, and Professor Leslie Findley who’s Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes.

Related material:

1] SMILE – Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME): http://wp.me/p5foE-37x

2] ASA adjudication against “Withinspiration”, June 2010

3] Background to this issue: http://wp.me/p5foE-2Vt

4] All posts on Lightning Process pilot study in children issue on ME agenda: http://meagenda.wordpress.com/category/lightning-process-smile-study/

Dr Charles Shepherd, Prof Leslie Findley and Phil Parker (Lightning Process) on Radio Berkshire

Dr Charles Shepherd, Prof Leslie Findley and Phil Parker (Lightning Process) on Radio Berkshire

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

Note: This is an edited version of content first posted on 11 November.

On 2 November, the ME Association reported that BBC Radio Berkshire had broadcast an interview with the ME Association’s medical adviser, Dr Charles Shepherd, during an item on the UK life ban on blood donation by everyone with the illness ME and CFS which was implemented on 1 November.

During the interview, also broadcast on 1 November, Esther Rantzen, standing in for Anne Diamond, the usual presenter of this mid-morning programme, had sidelined discussion of the implementation of the blood ban to promote the Lightning Process.

The ME Association reported that “Claims were made about the value of Lightning Process approach for people with ME/CFS and recovery rates for the illness which we challenged as soon as we heard they had been made. These will be the subject of a further item on BBC Radio Berkshire on Thursday 11 November…” See next posting

The 1 November broadcast can be heard here, on YouTube, in three parts:

http://www.youtube.com/watch?v=G4MFSRPMOWQ

http://www.youtube.com/watch?v=CS0kHH8NZ0k

http://www.youtube.com/watch?v=vNSgmuMlgXk

There has been considerable concern about the way in which Ms Rantzen conducted herself during the ME strand on this programme which had included contributions from ME patients via phone link. Complaints have been pouring in to the programme producers by email and phone.

One poster on Facebook wrote:

Esther Rantzen to radio caller Will: “..Now I am going to tell you something Will….. I can tell you about my daughter, she found something called the Lightning Process and you can find it on the internet….. it’s a method of training your brain to withstand the symptoms….. it’s a form of Neuro-linguistic Programming, you know how people use their mindset to withstand symptoms….”

Esther to Will: “…Let me tell you something else, it is an illness that most people recover from spontaneously, most people, 60% of people, get back to normality”

(Surely recovery rates are between 5 and 12%?)

Caller Will to Esther referring to the lifetime ban on giving blood by everyone diagnosed with ME (whether or not any improvement in their health has occurred). Will explains that some people have been wrongly diagnosed with ME and turned out to have completely different diseases:

Will: “…The difficulty is with the diagnostic process with ME, it’s an educated guess by specialists so there may be many people diagnosed with ME that may not even have ME in the first place….. now, in line with the blood ban that’s been announced to day what happens if you’ve been misdiagnosed, or undiagnosed…”

Esther: “Well, I mean, obviously the ban cannot apply…”

WRONG. The lifetime blood ban from the 1st November applies to everyone who has been given a diagnosis of ME or CFS in the UK. Esther announced that the ban “cannot apply” to individual cases. That is very irresponsible of her and appears to overrule the Blood Services announcement on the ban.

Esther to Will: “Will listen, don’t give up hope..… I tell you what, have a look at what the Lightning Process, it’s on the internet…”

Esther has directed the caller to look up Lightning on the internet for the second time in a few minutes. What Will would find on the internet is the commercial Lightning site advertising Lightning.

Will: “…I don’t think I have the funds….”

Esther: “I think there may be an equivalent on the NHS”

WRONG. There is no equivalent of Lightning on the NHS.

 

Today, just after 12 noon, in a pre-recorded interview, Anne Diamond discussed ME and CFS in general, its WHO neurological classification, the need for biomedical research and sub-grouping, the MRC’s CFS/ME Expert Group, the Lightning Process, and illness prognosis with Dr Charles Shepherd and Professor Leslie Findley. There was a brief contribution from Phil Parker towards the end of the interviews.

In 2007, Prof Leslie Findley had undertaken an informal, non RCT pilot study of the Lightning Process. No results from this pilot have been published but Prof Findley spoke to the Canadian media in an article here, in 2008, in which he quotes unremarkable results and reports that in small number of cases there can be bad relapses.

CBS News In Depth: Health
Lightning Process
Controversial training program comes to Canada
April 18, 2008  |  By Zoe Cormier

 

Prof Findley had also given a presentation around the pilot study at the 2007 Ramsay Society Annual Meeting with a colleague,  Gerrie de Vries. There is no English summary or note of this Ramsay Society meeting but photographs and notes were published, in German, by Regina Clos, which can be read in auto translate here:

Gerrie de Vries & Leslie J. Findley: “The Effects of the Lightning Process in the Management of Chronic Fatigue Syndrome – a start.” : http://tinyurl.com/sykesgermantoenglish

An personal account here on Bad Science Forum mentions Prof Findley’s involvement in “Neuro Behavioural Training” – an approach described as encompassing “Occupational Therapy, Clincal Hypnotherapy, Neuro Linguistic Programming, Cognitive Behaviour Therapy and Life Coaching”. Sessions take place over three days.

When asked about the Lightning Process, in today’s interview, Prof Findley said “…it’s been badly, badly applied, poorly researched and we would use it or recommend it probably in perhaps one in thirty or one in forty of patients, after they have been properly assessed over a long period of time and more standard management programmes have been applied” but he did not mention that he had, himself, undertaken an informal pilot in 2007.

 

Until 18 November, you can “Listen again” to the Radio Berkshire broadcast on BBC iPlayer at:

Radio Berkshire 11 November Anne Diamond

Starts at 2 hours 3 mins in from beginning of programme.

Broadcast on BBC Berkshire, 10:00am Thu, 11 Nov 2010
Available until 1:02pm Thu, 18 Nov 2010

Or listen on YouTube, here:

http://www.youtube.com/watch?v=9YX3wFkDlhI

On 10 November I sent this letter of complaint to the producers of the Anne Diamond programme. (At 18 November, I have yet to receive a response or acknowledgement.)

Re: Broadcast in which Esther Rantzen discussed ME/CFS and the new UK ban on blood donation by everyone with the illness with ME Association medical adviser, Dr Charles Shepherd, BBC Radio Berkshire: Monday 1 November

I am writing to complain about Ms Rantzen’s handling of this broadcast.

I understand that Ms Rantzen was standing in for the usual presenter, Ms Anne Diamond.

I have the following concerns:

1] Ms Rantzen was brought in to present a programme during which the ME/CFS blood ban would be discussed.

Ms Rantzen has a number of COIs in relation to ME/CFS.

Ms Rantzen is President of AYME (The Young People’s ME Trust).

She is known to promote the Phil Parker Lightning Process in the media.

The patient organisation of which she is President has for its medical adviser, Dr Esther Crawley.

Dr Esther Crawley is about to commence recruiting participants to a controversial pilot study where the Lightning Process will be applied to children aged 12 to 18 years old, for which Dr Crawley is Chief Investigator.

The patient organisation of which Ms Rantzen is President has been involved in the development and planning of this Lightning Process pilot study.

The patient organisation of which Ms Rantzen is President has a seat on the “Expert Advisory Group” for this Lightning Process pilot study.

2] I have scrutinised a partial transcript and note that during the broadcast, Ms Rantzen, on several occasions, sought to promote the Lightning Process to the public and to a contributor to the programme calling on a phone-link and that she also directed him to look at the internet for more information on the Lightning Process.

Ms Rantzen also made claims for recovery rates of patients with ME/CFS for which she offered no supporting evidence.

3] In my opinion, Ms Rantzen gave misleading information in relation to the blood ban and its application to individuals.

In response to the caller’s concerns about the cost of the Lightning Process, Ms Rantzen is reported as having said, “I think there may be an equivalent on the NHS”.

This is incorrect, there is no equivalent available on the NHS.

In the light of Ms Rantzen’s COIs and given her blatant promotion of the Lightning Process during a BBC broadcast I do not consider that Ms Rantzen could be considered to have been a neutral presenter.

I do not consider that she should have used the issue of the ME/CFS blood ban to promote a commercial “training” programme marketed by Phil Parker and his Lightning Process trainers / coaches / practitioners during a BBC broadcast.

I consider that the BBC was negligent in its failure to take Ms Rantzen’s COIs into consideration when selecting a stand-in for Ms Diamond and that Ms Rantzen had taken advantage of her position, as presenter, to introduce and promote the Lightning Process to the public during an item, the focus of which, was the recent UK blood ban for ME/CFS patients.

I would welcome your responses.

I also request a copy of the BBC’s policy on the declaration of COIs in its presenters and a copy of the BBC’s policy on the promotion of commercial goods and services by BBC presenters during broadcasts.

Sincerely, etc

Related material:

1] SMILE – Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME): http://wp.me/p5foE-37x

2] ASA adjudication against “Withinspiration”, June 2010

3] Background to this issue: http://wp.me/p5foE-2Vt

4] All posts on Lightning Process pilot study in children issue on ME agenda: http://meagenda.wordpress.com/category/lightning-process-smile-study/