Discussion in 'Action Alerts and Advocacy' started by Sparrow, Apr 3, 2014.
(On further reflection, never mind. Probably better to explore other options.)
I'm happy with CFS.
CFS clearly doesn't have to go. There is a huge amount of history behind it and it doesn't matter for me if ignorant people do not understand what it really is.
You've written a huge article with clearly good research backing it. Which is great. But do you not think it would be more worthwhile searching ways to treat/cure the disease rather than renaming it?
I apologize for my wording there. You're right. Not everyone agrees that CFS needs changing, which is part of why there is so much conflict around this issue. In retrospect I would have chosen my wording differently there. I myself used to share your view, though I've since changed my mind.
But a huge number of people feel passionately that it DOES need changing, and those people are not likely to change their minds. Changing the name is something that the IOM committee, many of our expert physicians, and a number of patient advocacy organizations already seem committed to as a high priority item. So it seems unlikely that's going to be abandoned.
I'm with you in that I think the less time spent at this step the better. But it seems to me that if a large group is pushing for a renaming, then the fastest way to get past that and on to other things is not to fight the change. It's to to find something we could all live with and drop the argument as quickly as possible.
There will have to be compromise on this. With that much division, both sides cannot have their way, and if we don't find some acceptable ground, we all lose out because the focus continues to be on arguing about what to name it or not to name it or whether to change the name at all rather than facing those other critical issues you mentioned.
Is it vital enough to you that the name doesn't change that it would be worth delaying progress to make sure it didn't? Or could you live with a different name if that meant we could move on to other things?
Well, there's the problem that the powers that be have decided not to name illnesses after people anymore. It doesn't add clarity to the nature of the illness and tends to cause more confusion than understanding. And it causes fights among scientists and advocates about who is worthy of the "honor" of having something named after them. This is actually true across all science now -- we name things for what they are, not after people. Hennessy's Disease simply won't fly.
That isn't to say we don't need a better name. That's a given, as far as I'm concerned.
@Sparrow I agree with most of the points you made. But ... I don't think Hennesey's Disease is the right name. I do agree that using a person's name is the best approach. I also agree that naming it after Florence Nightingale is not a good idea for the reasons you mentioned.
As much as I admired and respected Tom Hennesey, I don't think he is the person who should be chosen.
My reasons are:
1. medical professionals are more likely to respond more positively if it were named after a doctor (one of their own). We all know what huge egos so many of them have. And a patient advocate. Horrors!! We don't like those. Lowly patients trying to educate us, the mighty gods of medicine. (eg Simon Wessley)
2. In most cases, when a disease is named after a patient, the patient has been a "famous" person. By this I mean star athlete, movie star ... Someone whom most people have heard of. eg. Lou Gherhig (baseball)
3. Unfortunately the way he passed will get in the way. It is heartbreaking, and it should not matter but it will. When doctors, media etc want to know who this person was, they will learn the nature of his passing. Since we have a large group trying to stick the psychiatric label on this illness, this would be a gift to them.
4. Even if point 3 were not an issue, he is unknown except to other patients. The result would be:
Patient: I have Hennesey's Disease. It was named after Tom Hennesey.
Public: Who's that? Oh, a regular person. Who cares. Immediate disinterest.
I think the person most suited for the naming honours would be Dr. Melvin Ramsay. He is was a doctor. He was not involved in psychiatry or anything outside of mainstream medicine. He was one of the first to really not only work on the illness but to really describe it in medical detail. And did he not publish about the illness? He also laid out clearly what he thought the illness was.
And he is not from the United States. My apologies to you Americans, but we are dealing with a US government institution here. Sell them on the idea of naming it after a person and they be fighting over which of "their" people to name it after. Stephen Strauss perhaps?? This is a worldwide illness and the American health bureaucracy has made a mess ever since it stuck its nose in.
Dr. Ramsay has also sadly passed away. We don't want people trying to look at doctors/researchers who are still living and trying to get their favorite in. I envision a nasty, political, backroom election campaign and a lot of hurt feelings and resentment and anger. Don't want to go there.
Therefore, I vote for Ramsay's Disease.
Drat. Unfortunately, with the state of knowledge on our illness, it seems like that lack of clarity would be a benefit for us going forward rather than a disadvantage.
We don't need to keep discussing this option if it's clearly not workable. It just saddens me that all we seem to have on the table is CFS (which many people find unacceptable) and ME (which many other people find unacceptable).
And at the same time, all any of us really want is to get past the name thing already.
Ah well. I guess I'll cast my vote in with the M.E. crowd then, unless we're given a better third option to work with. Maybe someone will table something relating the specifics of our two day exercise difficulties. If we have to be defined by a symptom, it would be nice if it was one that made it clearly obvious that we can't overexert without severe issues. If there was one thing I would want doctors to have forefront in their minds when they're learning to handle patients with this illness, that might be it.
I think it is very clear we need a name change. If I were solely in charge of deciding it (king for a day) I would probably go with Ramsey's Disease. Peterson/Cheney Disease and M.E. would be good too.
I am going to strongly vote for ME though because I don't think we can afford to have another debate about what the best name is and all 'vote' on it and then have people disagree and go off on their own with their own pet name. I think we 'have to' go with ME simply because there is momentum behind it. We are weak and it takes a lot of strength and time to build up momentum. We have built up momentum behind ME, so I think we need to just keep pushing it through instead of 'changing horses midstream.'
I have also come to the (related) conclusion that the only way we are going to get anywhere is to try to agree as much as possible on positions and present a very united front and I think almost all of us can agree that ME is an acceptable name (in part because it has momentum behind it, as well as on the merits).
Additionally, introducing another new name for the disease will just add more confusion and complexity, when we need clarity desperately. It would be Ramsey's Disease, for example in the US and ME/CFS in the UK. Going with ME here will allow us to transition very quickly to ME everywhere including the UK, so we just have one good name ASAP.
Also, aside from being basically accurate, ME is impossible to pronounce, serious sounding medical name, when lends gravitas, which we need. I also like the angle of we are going back to it's historical and/or official world-wide medical name, which shows "CFS" in the rightful light of being a (intentionally) misguided departure from the historical name and science.
Sparrow, my take is there is pretty widespread support for ME.
I'm not sure it would matter much to most people that they'd never heard of him. I have no idea who Parkinson was, but I'm familiar with the illness named after him/her. Your point number 3 was on my mind as well, but I couldn't think of a better option. As mentioned, I was never suggesting that this was the perfect solution. More just trying to start a dialogue about options.
Of course, as @justinreilly mentioned, discussing options could be a negative as well. I am the first to admit that my thought processes don't always work particularly well these days. I'm glad that I had the chance to get some input on the thoughts floating around in my head, but we can all ignore them now.
Myalgic Encephalomyelitis (or Myalgic Encephalitis, maybe) might turn out to be more accurate than the people who reject it believe. In which case we're good -- no name change needed other than to dump CFS. Except that in the internet age we've learned not to use names or acronyms that are not searchable (Try searching "me" ).
I'm liking the NEIDS (Neuro-Endocrine-Immune Disease Something ) that somebody came up with a while ago, although I still don't think I want to go around saying I have NEIDS. Maybe we could pronounce it "nides", but the public would still mispronounce it and laugh at us. So either we hear "Everyone is fatigued" or "Everyone has needs". Okay, maybe we can do better....
Sadly, I don't think what we want it to be called is going to have much weight. But if I had a say in it, I'd want to change the name, eventually, but to wait until some of the very promising new research tells us more definitely about what we are dealing with--so that the new name would match the disease mechanisms. Until then, I'd want to stick with M.E.
I personally think that naming it Hennessy's Disease is even worse and more confusing than the names that we already have. It's useless renaming this illness until we know exactly what it is. I'd rather have a name that reflects the true nature of the illness rather than named for a symptom or the name of someone that most people don't have a clue who they are.
@SOC - Neuro-Immune Dysfunction Syndrome would work if we wanted to call it NIDS. I would probably prefer that to needs.
No government or scientific body will name it ME. Whether you call it Myalgic Encephalomyelitis or Encephalopathy. There is insufficient proof. The reason that the ME/CFS name was used for the CCC, rather than just ME as it had been called in Canada up to that point, was for that very reason. No proof for the encephalomyelitis. One of the doctors who created the CCC told me this. If they couldn't accept it, who will?
Sorry but NIDS sounds too much like nits! Imagine what someone would think if that is what they thought you said!
Another option would be to make ME a so-called "orphan initialism." This is an initialism that no longer officially stands for any string of words. ME would stand for ME and nothing else. It becomes a name/label rather than a descriptor like myalgic encephalomyelitis.
This would end the debate over weather the name M.E. correctly defines the disease. "ME" would instead be defined by the agreed upon case definition. You keep the name's historical context but you drop the debate over its accuracy.
[Ironically, it seems as though myalgic encephalomyelitis may eventually turn out to be pretty accurate, but in the meantime, it might be the better part of valor to go with ME standing for ME and declare the name issue moot.]
At first, you'd need to make this clear in text: e.g. "The disease known as ME (which once stood for Myalgic Encephalomyelitis) has a history dating back to at least 1934." Over time the explanation becomes unnecessary.
This sometimes happens in the corporate world:
SAT no longer stands for "Scholastic Aptitude Test."
AT&T no longer stands for "American Telephone and Telegraph."
KFC no longer stands for "Kentucky Fried Chicken."
Technically, ME would be an initialism and not an acronym because it would be pronounced "M.E." and not "me."
I wonder what the cons would be in calling it Ramey's Disease?
I think ME is ok. Also, in the summary of Kamaroff, I thoguht there was evidence of the imflamtion in brain.
I understand the problem with searching me. That is why we need to spell it M.E. all the time.
M.E. is really the natural, easiest transition from ME/CFS. It makes the most sense for right now. As most have stated, there is no ideal answer that everyone is comfortable with. Do we want to be stuck with a name that describes a symptom for another 30 years?
I was just studing on Database which name mseans nothing. They just put letters toguther that dont mean a thing, in the training they said it means nothing, is just a name.
Why can we adopt M.E. means nothing. Just a name. We can name it in honor to the previous ME (maylgiac...) as a singnificance of pain and all the history we been throuhg.
There is no question we have muscle pain. There is now little doubt we have diffuse chronic low grade brain inflammation. So Myalgic Encephalomyelitis is technically accurate now, as it was from the neurological findings in 1955. We have spinal and brain lesions consisting of immune cell infiltration. The Japanese researchers can now see something similar on PET scans. These problems have been seen in some autopsies.
(See for example: http://www.news-medical.net/news/20...n-patients-with-chronic-fatigue-syndrome.aspx )
The big pitfall here is that ME is typically considered synonymous with CFS. This is often the case even in places that do not call it ME/CFS. ME was also painted as a psychiatric disorder from 1970. Too many doctors know of those claims, but not their refutation or modern bioscience.
In any case I have been saying for years that we will not get to choose a new name, but we will get one. Biomarkers, established pathophysiology, possibly even a cause, will drive the scientific community to rename it. That name will reflect the findings.
Choice of a name in our communications, as opposed to case definitions, is now mostly about politics. For political reasons I favour M.E. Its about sending a message.
You can also try a Google Site Search
Separate names with a comma.