Submission to the RACP CFS Clinical Guidelines Review Committee
Continued

Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

13.0 Research

13.1 In view of the fact that ME/CFS has Priority 1 listing with CDC, U.S., there is a perceived imbalance in Australian research. We urge a change in emphasis from the present psychiatric focus.
13.2 Certain barriers to research are acknowledged:

• in common with all disease of the CNS there is limited access to the brain
  
• accessibility/costs of sophisticated technology to examine brain function, eg. SPECT, PET Scans
  
• difficulties of severely ill patients attending research facilities.

13.3 We note in all early cases of CJD, initial diagnosis was depression, corrected to CJD at autopsy.
13.4 Study of the most severely affected group may more readily identify the underlying disease mechanisms.
13.5 There is a growing view in the international research community, which suggests understanding of ME/CFS is hampered by using heterogeneous study groups leading to contradictory research findings.
13.6 Little or no research has been done on the chronic features of disease in ME/CFS. These patients tend to be forgotten - they have adjusted to their altered abilities and are rarely seen in clinical practices, having long since ceased to look for help from physicians. Those who have the misfortune to fall ill as children, adolescents and young adults and who fail to make recovery and have insufficient social support can become a significant proportion of the chronic poor.
13.7 In considering recommendations for future research, we would urge close examination of and support for:

• the need for meticulous epidemiological studies which redress the difficulties acknowledged in our text regarding: prevalence, case history research, long term monitoring, and fatalities.
  
• guidelines and protocols for autopsy
  
• Royal Adelaide Hospital research project - early studies have shown significantly lower total body potassium values in people with ME/CFS.
  
• University of Newcastle research project - examining urinary metabolic profiles and lipid studies with the potential to assist clarification of subgroups.
  
• cardiac studies (P.O. Behan, MD, FACP, FRCP, Professor of Neurology, University of Glasgow in early studies using thallium scans has found gross abnormalities of the myocardium akin to Syndrome X.) 13.8 The present cohort studies (Hickie, Lloyd et al.) of immune markers and psychological determinants which predict protracted recovery from KBV, RRV, and Q fever raise serious issues:
  
• psychological assessment tools may be invalid where medical conditions share similar symptomatology, as with ME/CFS
  
• many people with ME/CFS whose incapacity has been triggered abruptly by a virus, on closer scrutiny of previous health, reveal a history of infections with a gradual adaption to declining health, ie. some persistent symptoms
  
• such a group would be at risk of being classified as having "pre-existing psychological morbidity" if symptoms were wrongly attributed.

14.0 Recommendations

14.1 While acknowledgment is made that the problems outlined in this submission occur in the context of limited medical knowledge, they nevertheless reflect a very grim picture for people who have or may have ME/CFS. Many implicit and explicit recommendations are made throughout this submission. Additionally and specifically we list further recommendations.
14.2 Initiatives directed towards fully informing the medical profession (GPs, specialists, hospital staff, doctors who assess entitlements of Social Security, Insurance and Superannuation) to increase competence in diagnosis, treatment, management and advocacy; these should include:

• strategies to regularly inform/update the medical community, recognising diverse international research and clinical expertise
  
• strategies to include ME/CFS in the medical student/training curriculum
  
• guidelines which redress the harm and distress caused by inappropriate psychiatric referral, placing such misdiagnosis in the context of malpractice in terms of responsibility and duty of care.

14.3 Programs to further develop and evaluate diagnostic methods and treatments.
14.4 Development of practical methods to ensure accurate documentation and long term monitoring.
14.5 Establishment of a central disease register/data collection.
14.6 Collation of follow-up documentation of recipients of high dose IVGG side effects and possible identification of a sub-group for whom such treatment is contra indicated.
14.7 Development and dissemination of literature for target groups including health professionals, educators, employers and consumers, including government and private agencies dealing with people with ME/CFS.
14.8 Identification of strategies to ensure the rights of those severely affected to obtaining appropriate care including palliative care and access to specialised respite care facilities.
14.9 Consideration be given to support for the establishment of multidisciplinary, broadly based ME/CFS clinics.
14.10 Implementation of a committee meeting biannually modelled on the U.S. CFS Coordinating Committee - see Appendix.
14.11 Establishment of a national multidisciplinary forum for the update, exchange and debate of information and developments pertinent to ME/CFS.
14.12 Recognition that issues of access to diagnosis, appropriate case information, and peer support are heightened in rural and remote areas and initiatives must address these.
14.13 Strong participation by consumers, ie. people with ME/CFS and carers, in the development and implementation of recommendations 14.2 to 14.12. 15.0

15.0 Consumer Perspectives

Consumer perspectives relating to the review process are:

• minimal consumer representation.
  
• committee membership could have been broadened by inclusion of clinicians with large ME/CFS patient population practices.
  
• notification of the review process was minimal: many consumers, G.P.'s and other clinicians were unaware of the review.
  
• the review process only invites written submissions: this disadvantages the very ill, leading to a biased representation by the middle ground of the disease.

16.0 Acknowledgements

We wish to thank Lisa Willis and Susie Duncan for their generous assistance and patience in the typing of this manuscript.

This submission has been compiled by: A. Gotsis C. Hunter A. Leggo M. Stephenson

We have been assisted by the inclusion of much of the earlier submission by the ME/CFS Society of N.S.W. Inc., written by S.Hawke and G. Alt, to the 1993 Chronic Fatigue Syndrome Review chaired by Dr. D. Watson.

This submission is endorsed by the ME/CFS Society of N.S.W. Inc.: "We endorse the submission as being a valid, objective and representative account of concerns held by many of the members of the M.E./Chronic Fatigue Syndrome Society of NSW Inc. and commend it to the Review Committee."
Peter Foster - Acting President
Pat Coughlan - Secretary
M.E./Chronic Fatigue Syndrome Society of NSW Inc.

List of Submitters

Individual consumers supporting this submission are:
Format: Person with ME/CFS, (age), length of illness, address.

Stephanie Alt (aged 21 years) 8 years 19 Bayswater Road Roseville NSW 2070
Trish Brooker (Carer) for Karen Brooker (aged 20 years) 4 years 27 Bayvista Avenue Maslins Beach SA 5170
Warwick Goulding 10 years 9 Larool Avenue Lindfield NSW 2070
Mrs A Drummond-Gower (Carer) 37 Lawndale Avenue North Rocks NSW 2151
Anne Gotsis (Carer) for 2 children/young adults (aged 10 and 21) 5 & 8 years 12 Moore Street Bardwell Park NSW 2207
Robert and Joan Gwyther 31 Dorset Street Leura NSW 2780
Prof. M Halliday Prof. R Hasan 23/41 Kangaroo Street Manly NSW 2095
Neil Halliday 23/41 Kangaroo Street Manly NSW 2095
Viv Horwood (Carer) for Emma Horwood (aged 19 years) 61/2 years 16 MacPherson Street Clapham SA 5062
Janet Howell (Carer) for Lily (aged 22 years) 21/2 years 12 Price Street Melrose Park SA 5039
John and Chris Hunter 43 McIntosh Street Gordon NSW 2072
Michael and Annette Leggo (Carers) for 2 children/young adults (aged 19 & 26) 11 years 34 Stewart Street Artarmon NSW 2064
Michael Lyons (aged 29 years) 7 years "Parmedman" Gulargambone NSW 2828
Meredith McDonald (Carer) for Melissa (aged 23 years) 13 years Belinda (aged 19 years) 13 years 213 The Cove Road Hallett Cove SA 5158
Judith Matthews (Carer) for Bethany (aged 19 years) 6 years 5 Scot Road Dernancourt SA 5075 M & O Peri 13 Francis Street Naremburn NSW 2065
Tony Peri (aged 28 years) 7 years (also Carer of person with ME/CFS) 13 Francis Street Naremburn NSW 2065
Margaret Ryan (Carer) for Kate (aged 27 years) 7 years 24 Longworth Crescent Castle Hill NSW 2154
Kate Ryan (aged 27 years) 7 years 24 Longworth Crescent Castle Hill NSW 2154
Colleen Shellshear (Carer) for Prue (aged 24 years) 4 years 12 Hampden Avenue Wahroonga NSW 2076
Kerri Staples 10 years 61A Wandeen Road Taylors Point NSW 2107
Maureen Stephenson 16 years 4/242 Ben Boyd Road Neutral Bay NSW 2089
Gregory Street (aged 26 years) 186 Highs Road West Pennant Hills NSW 2125
Lisa Tesoriero (aged 27 years) 15 years 186 Highs Road West Pennant Hills NSW 2125
Margaret Tesoriero (Carer) 186 Highs Road West Pennant Hills NSW 2125
Jan Vallejo (Carer) for Tanya Vallejo (aged 25 years) 9 years 31 Woodhall Drive Happy Valley SA 5159
Margaret Whyatt (Carer) for Rebecca (aged 20 years) 13 years 8 Boothby Street Clapham SA 5062
Ted and Jan Wilson (Carers) for 2 children Timothy (aged 19 years) 5 years Nikki (aged 15 years) 5 years 157 Somerville Road Hornsby Heights NSW 2077
Dianne Wilson-Roberts (Carer) for Louise (aged 18 years) 5 years 15 Gomont Terrace Hawthorn SA 5062
Alex Zegebroks (Carer) for Elita (aged 23 years) 3 years 1 Wooltana Avenue Myrtle Bank SA 5064

Correspondence regarding this submission should be addressed to:

C. Hunter
P.O. Box 2093
Bowral NSW
2576

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