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)

I would prefer that instead of replacing the term CFS with ME, you write up a longer section on the name controversy. Here's a couple points to consider if changing the term:

• Many specialists, including Dr. Lapp, prefer the term, ME/CFS, because they are concerned that a large body of research will be lost for the newer researchers doing study reviews, because much research only refers to the term CFS regardless of the case definition.

• Mr. Steven Krafchick, a lawyer from International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), stated at the Aug 19, 2015 CFSAC meeting "that a body of law has been developed around the term CFS. The legal implications of changing the disease name are unclear...[and] that there may be a delay as the law and courts catch up..."

• Social Security only uses CFS when reviewing disability claims. It's hard enough as it is to prove disability. I worry that if the name is changed by patients while the agency is using a different name, disability claims may be delayed or denied because of the misunderstanding.

• Many doctors are not taught about the illness in medical school and rely on continuing education courses. Medscape, the largest provider of medical and nursing CEUs, as well as the provider information from the CDC, only use CFS. The average provider, who doesn't work with ME/CFS often, but wants to be informed, may be confused if a patient reports s/he has ME, which may be a detriment for patients.

• The NIH is using the term ME/CFS, for their Trans-NIH ME/CFS Working Group, their upcoming intramural ME/CFS clinical trial, and latest RFI.

• All these agencies are independent and make independent decisions. None of them are beholden to the others' decisions. I think the term should be as inclusive as possible until more studies are done and a better understanding of the pathophysiology is reached. At that time, the name change will probably happen organically by the scientific agencies, as when Down syndrome was changed to Trisomy 21 Syndrome and or when GRIDS was changed to AIDS.

• Every time the name is changed, the patient community has the burden to re-educate. (One can almost date when a patient was diagnosed by the name s/he gives: atypical polio, neuromyasthenia, CFS, chronic mononucleosis, chronic Epstein-Barr virus, post-viral fatigue syndrome, CFIDS, non-HIV AIDS, ME/CFS, and I'm sure I'm missing a few).

If I was Queen of the Universe (or the Mother of Dragons for the GoT fans), I'd ordered everyone to use the Japanese name: Low NK Cell Disease, but, alas, that, too will probably change. Kmdenmark (talk) 19:05, 1 July 2016 (PDT)

That's not what I'm saying (re: replacing the term CFS with ME), quite the opposite. I'm pointing out that they might be two different things. There seems to be a widespread misunderstanding that the controversy is just about the name, it's not, it's more than that. This is one thing that I think would be important to clear up, both among patients and the public. It's about disease descriptions and criteria that don't match up. It's obviously a very important topic, one that has generated numerous published papers, one that has been debated endlessly at CFSAC, etc. I just wonder how much detail about this aspect of the disease to put in a primer aimed at the public. At what point would their eyes glaze over and lose interest.

SSA has addressed this already, they acknowledge the existence of ME and the CCC/ICC and used both to formulate SSR 14-1p, along with CFS criteria. They consider ME a subtype of CFS, for better or for worse. From their perspective though they don't really care what you have, just that you can prove that you are medically disabled and cannot work. Analogue (talk) 15:09, 3 July 2016 (PDT)

You can write a blog and start a Word Press site detailing this information with citations to SSA, CFSAC, IOM, etc. Then start a page under your name and include blog on that page. Under "See also" on Primer for the public page include your name and blog. OR if someone has already detailed this in a blog, reference this under "See also". OR the paper or page on the SSA site that acknowledges existence of ME and CCC/ICC you can include as a reference under "See also". In reality, the public's eyes glazed over after they read the first sentence. Never the less, the got a big page.

This blog post would be good to put on the Primers for journalists, doctors, patients, etc.

When you go to the SSA website and input "Myalgic Encephalomyelitis" you will basically get CFS information.

ME and CFS both usually come on with a viral or flu-like illness and they are both grossly marginalized whether they are the same disease or a spectrum but the US government basically went with CFS.

The fact is, with the SSA you ARE disabled with CFS because that is exactly what I am disabled with; Chronic Fatigue Syndrome. Yes, it is about being medically disabled and specialists have to show how you are disabled from work under all SSA requirements, but they still have to give it a diagnosis and the diagnosis with SSA is CFS. If a patient wants to be diagnosed with ME and disabled with it, good luck to that patient and their doctors. It took me 6 years to get CFS (in reality 10 but that is another grotesque SSA story and brutality of the Judge I got stuck with 3 times) and the realities of where we are with the disease name and criteria.--DxCFS (talk) 09:11, 10 July 2016 (PDT)

Headings reorganize?

I don't know how well this page is flowing at this point. Mainly the order of the headings. If someone wants to reorganize headings, say Disease Onset before Prognosis and so on that would be fine with me. I am not able to rework it at this point. : ) --DxCFS (talk) 19:10, 2 September 2016 (PDT)