I have recently written a lobbying letter to doctors which was sent to 5 medical organisations. The letter contained links to recent ME(cfs) research, which you are welcome to edit in any fashion you like, to use as a leaflet to give out.
25 July 2012
Professor Claire Jackson
President
Royal Australian College of General Practitioners
1 Palmerston Crescent
South Melbourne 3205
Re: Royal Australian College of General Practitioners position on recent research findings in Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
In the Introduction it states "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.
Some recent research which caught the attention of ME(cfs) clinicians and researchers worldwide:
The October 2011 Journal PlosONE published 'Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatrigue Syndrome. A Double-Blind and Placebo-Controlled Study ' at : http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
http://www.ijcem.com/files/IJCEM1204005.pdf
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
http://www.translational-medicine.com/content/10/1/88/abstract
Report of the Invest in ME 2012 International ME/CFS Conference held in London
http://www.investinme.org/Documents/MECFS Conference 2012/Ros Vallings IIMEC7 Report.pdf
Twenty prominent international researchers and clinicians were invited to speak including two Australian researchers.
The keynote speaker was Professor Don Staines (Gold Coast, Australia). He presented auto-immunity as a plausible hypothesis in the aetiology of ME/CFS. He discussed the research programme being undertaken at Bond University over the past 8 years.
Dr Sonya Marshall-Gradisnik (Gold Coast, Australia) presented her work on immunological dysfunction as possible biomarkers for ME/CFS. She pointed out initially that the pathomechanism is unknown, there is no diagnostic test but there is evidence of immunological dysfunction. NK cell function is down, Treg function is implicated in ME/CFS, and research into B cells suggests an auto-immune disorder. There is significantly reduced NK cell function in ME/CFS, which is consistent over time. However the function is similarly decreased in the moderately affected group, so severity is not necessarily significant. There are 2 types of NK phenotypes: dim and bright. The dim seem unaffected in CFS, the bright very much decreased. This is consistent over time in this illness. NK cells are regulated by Tregs. One KIR receptor is associated with NK cell lysis reduction. mRNA gene expression relates to GZMA lytic protein which is significantly decreased in ME/CFS – this is a potential biomarker
Many research articles over the years have identified underlying biological abnormalities found in ME(cfs) such as those listed under References at the end of the ME:Criteria, and the ME: Primer referred to below.
Practice Guidelines for doctors are being developed:
The ME: International Consensus Criteria (ME: Criteria) provides a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. Members of the ICC panel are developing Physician' Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge.
In the meantime, A Primer for Clinical Practitioners (ME: Primer) is also available providing advice on how to diagnose ME(cfs), which clinicians may find useful at:
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Problems facing ME(cfs) patients:
Patients find it very difficult to locate a doctor aware of developments in the diagnosis and management of ME(cfs), of the ME:Criteria and ME
rimer, and how overseas ME(cfs) doctors work. In the rare event a doctor knowledgeable in ME(cfs) is found, there is a very long waiting list. Patients suffer from being forced to travel long distances to find a ME(cfs) doctor, even worse in rural areas.
Many patients have not been diagnosed, and live with impairments which greatly restrict daily functional performance, independence, and quality of life.
Bedbound and homebound patients are the most disabled, many on a long term basis, are often not seen by doctors as they are too ill to attend at a clinic, and do not receive the extra special medical considerations as outlined in the Primer for Clinical Practitioners on page 26 under the heading Related Clinical Concerns.
Patients attending emergency departments often receive inappropriate attention, incorrect diagnosis, ill informed advice, and even ridicule.
I am writing to ask what steps the RACGP is taking to ensure its members are being updated on the recent research findings and both of the documents developed by an international panel of clinicians/researchers experienced in the diagnosis and management of ME(cfs).
Specifically, could you please inform me of how the following issues are to be addressed:
-to rectify a critical shortage of ME(cfs) doctors in Australia, as many patients have to wait for months or years before a diagnosis is obtained.
- to educate doctors in the appropriate diagnosis and symptom management using the current ME:Criteria and MErimer as they better target the key symptoms of ME(cfs).
- to encourage and provide incentives for doctors to become specialists in the challenging area of Complex Chronic Disease including ME(cfs).
- to set up clinics to conduct research and treat Complex Chronic Disease in public teaching hospitals. An example of such a clinic being set up in Canada can be accessed at:
http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm
Media release of the appointment of Dr. Alison Bested as the new Medical Director for the clinic can be accessed at:
http://www.vancouversun.com/health/...complex+chronic+conditions/6919354/story.html
- to work collaboratively in exchanging information with internationally recognized clinicians and researchers. Contact details for the authors can be found at the front or towards the back for both the ME:Criteria and MErimer.
- to teach medical students using both the ME:Criteria and MErimer as part of the medical curriculum.
- to encourage and support doctors who are able to collect information and data in their practice to carry out empirical research and add to the ME(cfs) knowledge base.
- to provide professional continuing education to improve doctor skills and knowledge, especially to doctors in regional areas utilizing up to date communication media such as webinars and podcasts etc.
The patient community is looking forward to RACGP leadership in providing a positive response and implementation to address these issues, so that current knowledge, understanding and management of ME(cfs) is delivered in daily medical practice in clinic and hospital settings.
Thank you for your attention.
25 July 2012
Professor Claire Jackson
President
Royal Australian College of General Practitioners
1 Palmerston Crescent
South Melbourne 3205
Re: Royal Australian College of General Practitioners position on recent research findings in Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
In the Introduction it states "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.
Some recent research which caught the attention of ME(cfs) clinicians and researchers worldwide:
The October 2011 Journal PlosONE published 'Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatrigue Syndrome. A Double-Blind and Placebo-Controlled Study ' at : http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
http://www.ijcem.com/files/IJCEM1204005.pdf
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
http://www.translational-medicine.com/content/10/1/88/abstract
Report of the Invest in ME 2012 International ME/CFS Conference held in London
http://www.investinme.org/Documents/MECFS Conference 2012/Ros Vallings IIMEC7 Report.pdf
Twenty prominent international researchers and clinicians were invited to speak including two Australian researchers.
The keynote speaker was Professor Don Staines (Gold Coast, Australia). He presented auto-immunity as a plausible hypothesis in the aetiology of ME/CFS. He discussed the research programme being undertaken at Bond University over the past 8 years.
Dr Sonya Marshall-Gradisnik (Gold Coast, Australia) presented her work on immunological dysfunction as possible biomarkers for ME/CFS. She pointed out initially that the pathomechanism is unknown, there is no diagnostic test but there is evidence of immunological dysfunction. NK cell function is down, Treg function is implicated in ME/CFS, and research into B cells suggests an auto-immune disorder. There is significantly reduced NK cell function in ME/CFS, which is consistent over time. However the function is similarly decreased in the moderately affected group, so severity is not necessarily significant. There are 2 types of NK phenotypes: dim and bright. The dim seem unaffected in CFS, the bright very much decreased. This is consistent over time in this illness. NK cells are regulated by Tregs. One KIR receptor is associated with NK cell lysis reduction. mRNA gene expression relates to GZMA lytic protein which is significantly decreased in ME/CFS – this is a potential biomarker
Many research articles over the years have identified underlying biological abnormalities found in ME(cfs) such as those listed under References at the end of the ME:Criteria, and the ME: Primer referred to below.
Practice Guidelines for doctors are being developed:
The ME: International Consensus Criteria (ME: Criteria) provides a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. Members of the ICC panel are developing Physician' Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge.
In the meantime, A Primer for Clinical Practitioners (ME: Primer) is also available providing advice on how to diagnose ME(cfs), which clinicians may find useful at:
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Problems facing ME(cfs) patients:
Patients find it very difficult to locate a doctor aware of developments in the diagnosis and management of ME(cfs), of the ME:Criteria and ME
rimer, and how overseas ME(cfs) doctors work. In the rare event a doctor knowledgeable in ME(cfs) is found, there is a very long waiting list. Patients suffer from being forced to travel long distances to find a ME(cfs) doctor, even worse in rural areas.Many patients have not been diagnosed, and live with impairments which greatly restrict daily functional performance, independence, and quality of life.
Bedbound and homebound patients are the most disabled, many on a long term basis, are often not seen by doctors as they are too ill to attend at a clinic, and do not receive the extra special medical considerations as outlined in the Primer for Clinical Practitioners on page 26 under the heading Related Clinical Concerns.
Patients attending emergency departments often receive inappropriate attention, incorrect diagnosis, ill informed advice, and even ridicule.
I am writing to ask what steps the RACGP is taking to ensure its members are being updated on the recent research findings and both of the documents developed by an international panel of clinicians/researchers experienced in the diagnosis and management of ME(cfs).
Specifically, could you please inform me of how the following issues are to be addressed:
-to rectify a critical shortage of ME(cfs) doctors in Australia, as many patients have to wait for months or years before a diagnosis is obtained.
- to educate doctors in the appropriate diagnosis and symptom management using the current ME:Criteria and ME
rimer as they better target the key symptoms of ME(cfs).- to encourage and provide incentives for doctors to become specialists in the challenging area of Complex Chronic Disease including ME(cfs).
- to set up clinics to conduct research and treat Complex Chronic Disease in public teaching hospitals. An example of such a clinic being set up in Canada can be accessed at:
http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm
Media release of the appointment of Dr. Alison Bested as the new Medical Director for the clinic can be accessed at:
http://www.vancouversun.com/health/...complex+chronic+conditions/6919354/story.html
- to work collaboratively in exchanging information with internationally recognized clinicians and researchers. Contact details for the authors can be found at the front or towards the back for both the ME:Criteria and ME
rimer.- to teach medical students using both the ME:Criteria and ME
rimer as part of the medical curriculum. - to encourage and support doctors who are able to collect information and data in their practice to carry out empirical research and add to the ME(cfs) knowledge base.
- to provide professional continuing education to improve doctor skills and knowledge, especially to doctors in regional areas utilizing up to date communication media such as webinars and podcasts etc.
The patient community is looking forward to RACGP leadership in providing a positive response and implementation to address these issues, so that current knowledge, understanding and management of ME(cfs) is delivered in daily medical practice in clinic and hospital settings.
Thank you for your attention.
