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PO Box 13-029 Johnsonville, Wellington 6440, New Zealand

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Disclaimer

Here is our resource list, a work in progress that can we will continue to update and ensure remains current and in line with best practice recommendations for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). As these conditions are complex and our understanding of them is an evolving one – we acknowledge that no one resource here is perfect nor does it hold all the answers.

We are also aware that we are lacking in Fibromyalgia (FM) resources. We want to remedy this but need time and your help to build these, the committee are made up of volunteers with the majority having ME/relating to ME and CFS but we are determined to enhance our knowledge of FM and provide credible best practice information for our members about this important condition.
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Any information provided is not intended for use as, or to replace professional medical/diagnostic advice. If you have medical issues you should consult a physician.

This website and the Wellington Region ME/CFS Support Group Inc. assumes no responsibility for the choice or outcome of any treatment by its readers.

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ME and CFS vs ME/CFS

ME and CFS have been widely used interchangeably as if they are the same condition e.g. ME/CFS, CFS/ME, ME aka CFS. However, there is significant debate as to whether ME and CFS are actually in fact the same disease (e.g. on a spectrum, with perhaps ME being the more severe form of the disease - a predominantly neurological form), or rather different diseases altogether. As yet, no significant comparative studies exist to clarify this issue.

We are also aware that many in our community - here and internationally - understandably have a strong dislike of the term “Chronic Fatigue Syndrome”, due to the history, harm and context of how this name for our disease came about.

In light of the above, we will mention ME and CFS as ME, CFS and sometimes ME/CFS (as most of the research refers to this condition as ME/CFS), whilst bearing in mind the complexities of this issue.

We will also continue to avidly review the literature and update our stance as things evolve on the research front.

Diagnostic Definitions of ME and CFS

For diagnostic definitions of ME and CFS, here are our current thoughts:

In the same vein as the above, there is no consensus on which criteria to use for the clinical diagnosis of ME, CFS.

  1. Despite the  IOM Criteria for ME/CFS-SEID, ME/CFS (2015) being the latest, it is worth noting the main biomedical findings with recent research are coming from the International Consensus Criteria (2011) for ME and the Canadian Consensus Criteria (2003) for ME/CFS.

  2. Nor is there consensus as to what criteria to use for research case definition either. All further compounding the issue of how to define patient groups, and what study results can be generalised.

  3. There are strengths and weaknesses of each criteria.

  4. Until we have a biomarker, these are the best we’ve got and we acknowledge none are perfect.