Talk:Primer for the public

There are several changes I would like to make as I believe this page as currently written to too heavily biased towards the ME = CFS camp, which is of course an unresolved area of research.

I very much dislike the whole "this is the name used in this country" subject. While historically some of it is accurate, I think it is damaging to us as patients to adopt this mindset. Clearly ME Action made a conscious choice to call itself that and not CFS Action or ME/CFS Action. It's up to us to use the name ME when we mean the disease that Melvin Ramsay was talking about, regardless of what country we live in. While I'm not an expert on this, any country whose medical system utilizes the WHO ICD, or a recent clinical modification of it, should contain a diagnostic code for ME and people in these countries should demand its use for people that fit the criteria for ME. I believe this is an important way we can move away from the stigma of CFS and exposing the public to this would be helpful in a primer such as this. Obviously this is a complex topic but I think the relevant points can be put down without too much exposition and confusion.

I realize this is a controversial topic but there is support for it. While you hear everyone say CFS is what we call ME in the US, this really isn't the case. The US ICD lists both ME and CFS in separate chapters and includes a mutual exclusion for each. So from the perspective of our medical coding system, if you have ME you can't have CFS, and vice versa. The IOM also pointed out that the two diagnoses are not equivalent in their report.

This page also glosses over a lot of the history. CFS isn't what we call ME in this country, historically speaking. Epidemic neuromyasthenia is actually the name that was used for ME in the US starting in the 1950s. This is still reflected today in the US ICD-10-CM where neuromyasthenia is indexed to G93.3 (ME) in the index.

If there is no objection I can made some of the edits that I'm thinking about, or we can discuss them further here before I make them. I'll wait to hear what others think about this. Analogue (talk) 14:50, 1 July 2016 (PDT)

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

International Classification of Diseases (ICD) - A system of medical diagnostic codes, created by the World Health Organization (WHO), to classify diseases and other health related conditions for the purpose of international diagnostic consistency. By having common diagnostic codes around the world, health researchers are better able to quantify and track disease burdens. The most current version is called ICD-11. (Learn more: www.who.int)

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

International Classification of Diseases (ICD) - A system of medical diagnostic codes, created by the World Health Organization (WHO), to classify diseases and other health related conditions for the purpose of international diagnostic consistency. By having common diagnostic codes around the world, health researchers are better able to quantify and track disease burdens. The most current version is called ICD-11. (Learn more: www.who.int)