RACP Guidelines for CFS

Chronology of the RACP Guidelines for the diagnosis and management of Chronic Fatigue Syndrome

The Royal Australasian College of Physicians (RACP) received a Federal Grant to develop, publish and disseminate guidelines on the most clinically relevant and cost effective methods of diagnosing and treating people with Chronic Fatigue Syndrome.

A multidisciplinary working group was established along the lines recommended by the NHMRC in the "Guidelines for Development and Implementation of Clinical Practice Guidelines" (1995), to manage the project.

Early 1996

Dr Michael Wooldridge, Minister for Health and Family Services, approved application to Medicare Branch, Commonwealth Department of Health to provide funding of $130,000 to the Royal Australasian College of Physicians (RACP) "to produce a series of guidelines on the most clinically relevant and cost effective methods of diagnosing and treating chronic fatigue syndrome".

"Initial grant for 6 month period, understood process more likely to take 12 months".

"It is important to emphasise the establishment of the Working Group was an independent professional initiative. The Working Group has therefore not been given terms of reference" – Victoria Toulkidis, 3 February 1997.

15 May 1996

Consumer Health Forum request to Consumer Health Forum voting members for nominations for consumer representative to RACP Working Group – to be received by 6 June 1996.

May 1996

Urgent representation by Chair, RACP Working Group for Joan Rothery's appointment as Consumer Representative - endorsed by Consumer Health Forum and ME/CFS Society of NSW Inc.

June 1996

"We will be announcing the review and submissions to the RACP Working Group will be requested by advertising in all major newspapers" – Chair RACP Working Group.

August 1996

Research Officer, Victoria Toulkidis appointed to Working Group.

21 September 1996

First meeting of RACP Working Group.

21 November 1996

Resignation of Joan Rothery, consumer representative. "Due to pressure from some sections of the community" – Victoria Toulkidis.

23 November 1996

Inconspicuous notice requesting submissions by 5 December 1996 (2 week period) to RACP Review. 23-24 Weekend Australian p.46.

6 December 1996

Consumer Health Forum telephone conference of Australia-wide consumer organisations to replace consumer representative. Chair, Consumer Health Forum, Janne Grahame indicated the nominated consumer representative required approval by RACP Working Group.

18 December 1996

Craig Ellis, Tasmania appointed as consumer representative to RACP Working Group.

January 1997

Notification by Project Officer – proposed date for release of draft document April 1997. Submission closure date extended to "beginning of February at latest".

15 April 1997

"Exposure draft due April 1997, final draft due June/July 1997" – John Jenner, Director Access and Compliance Section, Medicare Benefits Branch, Commonwealth Department of Health and Family Service.

8 May 1997

"The government has approved funding up to an amount of $200,000 to enable the RACP to produce guidelines – Richard Morris, Assistant Secretary Health Research Branch on HMRC.

December 1997

Exposure draft released – "comments to be returned no later than Monday, 16 February 1998. Final version to be published as colour supplement to MJA WWW May 1998". – R. Loblay, G. Stewart, Co-Convenors.

Changed title: unannounced broadening of original brief from, "to produce a series of guidelines on the most clinically relevant and cost effective methods of diagnosing and treating chronic fatigue syndrome", to, "The evaluation of prolonged fatigue and diagnosis and management of chronic fatigue syndrome".

Key members of the RACP Working Group, I. Hickie, A. Lloyd and D. Wakefield were responsible for both the literature search and the writing of the draft document.

Broadening of brief in line with research focus of these key members.

February 1998

Heated discussion generated by presentation of Draft Guidelines to International CFS Meeting by R. Loblay, D. Wakefield and I. Hickie. May publication date of final documents reasserted.

February 1998- September 2000

Draft document widely distributed - has remained on web site for 2 years and 10 months. Confusion re draft status. Used by practitioners. Many cases of harm reported by consumers.

June 2000 RACP announcement–revised draft to be available August –two week period for comment.

28 June 2001

Revised and final draft released for comment, prior to proposed publication in Medical Journal of Australia (MJA).

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