Lenny Jason had little good to say about the new name in a recent article “How Disease Names Can Stigmatize“. Prominently highlighting a slew of negative comments (” It is pathetic, degrading and demeaning”, “Absolutely outrageous and intolerable!”) at the head of the article, Jason stated that “patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.”
Nobody said picking a new name would be easy..
That wasn’t quite the impression we got at Health Rising. The name was certainly controversial but a significant portion of readers did not object. In a poll attracting about 750 people, a solid majority (43-29%) felt it was preferable to “ME/CFS”. Fifty percent felt the name would at least moderately help their doctors to better understand their illness.
Still, little evidence that name was well- liked could be found with 75% stating it had either a moderate or high “cringe factor” and a significant subset of patients were absolutely opposed to it.
Jason acknowledged that myalgic encephalomyelitis (ME) is not an accurate description of ME/CFS at this time, but argued that it was well known and loved in the patient community. He noted that other diseases such as malaria ( “bad air”) have names that are not scientifically accurate “.
The term malaria was adopted in the Middle Ages, however, long before the birth of modern medicine. A good question would be whether any names that are popular but known to medically inaccurate have been adopted for diseases in the modern era. Another question concerns whether the IOM panel could have submitted “ME” with any hopes of getting it past the reviewers at the DHHS or their own reviewers. (They felt they could not have.) Ramsay’s Disease is another possible favorite that could run into trouble at the DHHS given the World Health Organization’s admonition against naming diseases after individuals.
Jason argued, however, that the process never should have gotten to the point where something as consequential as a name change was left up to a committee and its reviewers. He believes that buy-in from the patient community in this instance, is important, and, indeed, patient participation is emphasized more and more in many aspects of medicine. He suggested that “a more transparent, interactive, and open process” would have been helpful and proposed a process for that. Charles Shepherd suggested that a more inclusive process occur as well.
“Either the Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services) or the International Association of ME/CFS (the scientific organization) may appoint a name change working group with international membership to engage in a process of polling patients and scientists, sharing the names and results with large constituencies, and getting buy in — with a process that is collaborative, open, interactive, and inclusive.” Jason
The Last Name Change Working Group
In 2000, the last Name Change Working Group which included Lenny Jason, Dr. Klimas, Dr. Levin, Dr. Lapp and patient advocates was initiated. During the three years the group was in existence, it did research, held a Forum and distributed questionnaires to patients and researchers. At then end the group found that the patient and research communities liked different names; neuroendocrine immune disease (NEID) was preferred by the patient community and myalgic encephalomyelitis ME was preferred by the research community. Almost half of the research community, did not endorse a name change.
We want a different name – but which one? Let us know in the pll
The Working Group proposed that CFS be called neuroendocrineimmune dysfunction (NDS). Their efforts came to a screeching halt, however, in 2003 when CFSAC, citing a lack of scientific clarity around ME/CFS, opposition at the CDC to a name change, and the damaging effects on research voted almost unanimously to reject a name change.
The effort highlighted the different criteria the patient and research community can have for a name. The research community likely above all wants something that’s scientifically accurate while the patient community probably wants something that denotes the seriousness of the condition.
Name Change Poll Take Two
It’s been a week since the name came out. Now in a new poll we provide five choices and ask , if you had to pick a name right now, what name you would pick.
(We didn’t include the catchiest name proposed thus far: Post Exertional Neuro Immune Syndrome aka PENIS :))
Make your choice by grabbing the icon to the left of each name and moving it and down until the names are arranged in the order of your preference. Then click submit!
The Best Name For ME/CFS?
Hot Button Topic Overtakes More Important Issues?
“It’s your move, HHS. You commissioned this report for $1 million. How will you put its recommendations into practice?” Jennie Spotila
Names have consequences but there’s no evidence that they are determinative. Fibromyalgia has had a “good” name for decades and is still widely dismissed by rheumatologists and other doctors. Despite a better name and no less than three FDA approved drugs fibromyalgia still gets considerably less funding per patient from the NIH than ME/CFS. Interstitial cystitis has a good name and gets similarly poor funding. Changing a name may help but there’s no evidence that it will change the “gestalt” at the NIH that is holding us back from our major need: getting more funding.
Is the excitement over the proposed name obscuring an opportunity?
The P2P and IOM reports – both federally funded – that assert ME/CFS should receive far more resources have a much greater chance at changing the “listening” this disease gets at the NIH and producing change. It’s unfortunate, in my opinion, that the proposed name change is overshadowing the most important outcomes of these reports: the opportunity to more effectively advocate for more resources.
The IOM Committee considers SEID to be a temporary name that will be eclipsed, sooner hopefully rather than later, by a more physiologically appropriate name. In order for that to happen, though, ME/CFS needs more funding. In order for appropriate treatments to be found and developed ME/CFS needs more funding.
Funding ultimately takes care of everything – changing the name does not. Mounting an effective advocacy movement to obtain more funding and produce Centers of Excellence where patients can have access to the best treatments available is the most critical factor right now. Jennie Spotila’s recent blog “Your Move, HHS” highlighted that issue.
- Coming up next – building an effective advocacy movement to produce change.
The poll is not allowing the links to actually be picked. That said, I would go with Ramsey’s Disease at this point. I also wouldn’t mind NDS (neuroendocrineimmune disease).
After reading far too many comments written about mainstream articles re the propesed name change, I find that I hate it even more than I hate CFS and that’s saying a lot. With CFS, we got told that everyone is tired. That was bad enough, but with SEID almost all the comments are assuming it means that we are just lazy, which to my mind is even worse.
And, it also worries me re SSDI and if the people determining that will also look at it as laziness. It’s already hard enough to get on and stay on SDDI when one is super sick with this evil illness. We do not need anything making that even more challenging, or we will wind up losing even more of our population. Being unable to work and also not able to get SSDI will equal homelessness which will equal even sicker people and most likely more suicides.
You need to drag the names around to order by preference.
I also like NDS neuroendocrineimmune disease.
I added it to the poll. I will take into account that 232 people have taken the poll at this point. I’ll add yours and the other two to NDS and try to figure out how it might have gone if it had been there in the beginning – if that’s possible 🙂
I could not vote as it appears the links are not active to vote on the names. That said, I would vote, if allowed, for neuro endocrine immune disease. I believe that there is neurological, systemic and immulogical component to this disease.
Exactly. Lack of personal resources due to longterm medical industry neglect leads to homelessness, much greater illness, distress, hopelessness and early death or suicide.
Also: Neuroendocrine Immune Disease/NID is my choice. The five given choices seemed inaccurate and misleading.
NDS would be my 1st choice & Ramsay 2nd. SEID does NOT adequately describe the devastating disease that has stolen my life. As with systemic Lupus, the systemic part of the name will be left out. Exertion intolerance disease does not cut it. I am bedbound permanently 24/7 year after year. The extreme fatigue is totally debilitating & constant. I can’t walk or stand or sit in a chair. Even breathing is a huge fight for me to manage. I have chest pain, heart pain, mitral valve prolapse, muscle & bone pain, abdominal & back pain, circulatory problems, Infections etc. Lying here in bed unable to do anything for myself, life is one gigantic struggle every single day. It does not take ‘exertion’ it occurs just by existing. The reason people care so much about this name change is because it will impact on how we are treated & how our disease is perceived. I don’t know how much longer my body will survive this intense struggle to get through each day. But the name Systemic Exertion Intolerance Disease trivialises this life destroying disease & will not increase understanding of how extremely severe it can be. Would Alzheimer’s Disease patients get as much funding & understanding if it was named chronic forgetfulness? Or if cystic fibrosis was called ‘Thick Mucus Disease’. What if Parkinson’s was called the shakes? When only one symptom is used as the illness name such as CFS or SEID, many assume it’s the only symptom, fatigue or exertion intolerance.
I have respect for Nancy Klimas & others who are increasing awareness & I really hope they will find a more accurate name and that this disease is researched extensively. Our lives are as important as those with cancer or any other disease. It’s time we are treated equally. Not subjected to judgement & assumptions. I’d give anything to have my life back…love & respect to all u out there facing this too. Thanks to Cort for the fantastic work you do, Kelly
Kelly, I love that you can keep some humor alive. Chronic Forgetfulness (Alzheimer’s), that’s me all over, and the shakes-that’s perfect. Of course I’m being facetious as you were but sadly true. Anyone with Parkinson’s would be truly horrified if their disease was trivialized in this manner as we are with CFS even SEID-“whats the matter, you can’t tolerate exerting yourself-ah too bad” nope definitely not good enough. I do not know the answer for the most accurate name that will have meaning not just to the health care community but to the general public. By meaning I mean to say the understanding, the comprehension the empathy to understand this disease and help us. At least this name change has sparked a lot of controversy, more people may become aware of this disease’s destruction and cost to society.
Kelly, first I want to say (inadequately) how sorry I am for your suffering. I am going through very similar. I totally agree with your excellent post here that SEID minimalizes and trivializes our disease and picks just one of the many issues we are faced with and which devastate our lives. I don’t even think it’s that humorous to say that these diseases such as Alzeimer’s being called chronic forgetfulness – this is exactly how naming this illness SEID seems to me as well.
This name just invites more misunderstanding and ridicule. My sister, who understands me and has seen what I’ve been through said “you may as well call it chronic wuss disease” when she saw an article about SEID. Yes the report is helpful, but most will not take time to read the report and the name is the only acquaintance many will ever have with this illness and it is extremely and ludicrously lacking in describing it.
It is truly heinous, in my opinion that they would take such a serious illness and instead of naming it something much more helpful and -taking the stupid, awful stigma that ruins our lives and friendships and colors all of our dealings with people- out of it, they just add to it. By far and away NDS describes this illness better in every way. It is light years better than SEID. ME is as well. For those who do not know Ramsay, here is a link that describes why his name and ME are good candidates. http://www.name-us.org/DefintionsPages/DefRamsay.htm
Oops, mistyped Alzheimer’s.
Hello Kelly
I just want to acknowledge your amazing courage to continue surviving each day. At least I can walk a little, move around in my wheelchair when I cant and prepare a simple meal and do a few light tasks. I have had days when I could barely get out of bed and just wanted to die, as all I do is exist. So my hearfelt best wishes go out to you and I admire your inner strength and your courage.
Jazel
Ramsey’s Disease is too much like Ramsey’s Syndrome (a recurrence of chicken pox). I like the name ME altho I think neuroendocrine disorder is more accurate, I used to call it fibro/fatigue which doesn’t cover so many of the symptoms. It’s much more than just fatigue with aches and pains!
It’s different! – I couldn’t figure it out either at first :)…
I agree with you Tammy.I also think the name they have picked relates to lazy condition.
I dont know about you but i can tell you that i have delt with brain swelling bulging eyes, inflamation in brain and high spinal fluid pressue proven by spinal tap.The severity of the amount of pain i have and do live with can and has brought on thoughts of suicide at least 5 times for me since becoming bedridden on Oct 1 2008.No one in the world knows really just how much pain a person can take.You are so right about the name.It can and will effect how Social Security Disability and SSI will look at this disease and some ALJ s dont even believe in ME/CFS themselves even with evidence of this disease.Being a man and becoming disabled from this dibilatating disease it took over three tries to get approved for SSDI that spread over 2.5 years with out any income.Being a man with this disease people have said ” well you look good””well you look ok””well you dont look sick”.I say well have you ever seen a person with cancer.Theydont look sick but you know what ,They are dieing.If it wasnt for a very good friend who paid my mortgage for me while waiting for approval my son and i would have been totally homeless and living on the street.The name they want or have picked says nothing about the severarity of symptoms patients live with.I personaIy believe ME/CFS is alot better than what the panel chose and i dont believe the new name screams “PLEASE HELP ME” “NOW”.PLEASE.My message to the name change panel “Let Us Be Involved”.We are the ones who live with it.We should have say.
David Downer,
I got tired of the you look so good remarks too. When people would tell me, but you don’t look sick, or you look so good, I would say, that’s funny, I hear that same remark at funerals when people look at the deceased laying in the coffin…it is always…gee, doesn’t he/she look good! Just goes to show you, even a dead person can look good! Usually they get it!
My vote was a false representation of my preferences because the instructions were confusing. Ramsay’s would be my first and only choice of those offered.
“Six are well-known names and the last comes from a suggestion by Charles Shephard”
I can only see five.
yes indeed. I had trouble with the form and when I redid it I worried that too many names would complicate putting them in their right places – so I took two out – and stayed with the most common ones – and forget to change the blog (sigh…) Thanks for letting me know.
Could we have “Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease” added to the voting list?
With all due respect, I HATE the idea of having another compound name for ME/CFS. I’m sure I’m not the only one who’s been in a doctor’s office and pretty much wanted to collapse by the time I explained “Well in the 80s what was called CFS in the US was called ME in the UK and we hated CFS so it was changed first to CFIDS, but that sounded too much like AIDS so ….” PLEASE, whatever they do, don’t leave us with another compound name!
Neuroendocrine Immune Dysfunction (NDS) is good.
NDS is okay with me, if for no other reason than I can pronounce and remember it. I wish to point out that a lot of us with this illness have a problem with “brain fog”. We need to be able to respond accurately when asked, “What is your illness?” This name also sounds “medical”, “professional” and “scientific” – all of which would help with public acceptance of it’s reality and seriousness.
Yeah, that’s the one I was trying to think of! HATE this nasty brain fog!!!
Its not allowing the shifting of names. Icons/links are not working
You say, “Now in a new poll we provide seven choices and ask , if you had to pick a name right now, what name you would pick. Six are well-known names and the last comes from a suggestion by Charles Shephard.”
I only see 5 choices. Did you decide not to include 2, or just one of those… things?
😉
I had trouble with the form and when I redid it I worried that too many names would complicate putting them in their right places – so I took two out – and stayed with the most common ones – and forget to change the blog
Only a thousand people saw my glaring boo-boo (sigh)
Only five names, not seven, appear in the poll, but I can rank those five under both Opera and Chrome.
I’ve had CFS/ME since Labor Day, 1987, and I *like* SEID. I like it a lot. I think it’s beautifully descriptive, and a precise reflection of what actually is known about our illness.
The trouble with the name “M.E.” is that it’s not true, and I don’t like claiming something that isn’t true. Claiming something that just plain isn’t so is no way to win respect for our illness or to convince physicians that it’s a non-psychological complaint.
I don’t think I need to explain the problems with the name “CFS.”
“Ramsey’s Disease” I have never heard, but there’s already a Ramsey’s Syndrome and I for one do not want everyone thinking that I have complications of shingles.
My mistake on the numbers Meredith…
“The trouble with the name “M.E.” is that it’s not true, and I don’t like claiming something that isn’t true. Claiming something that just plain isn’t so is no way to win respect for our illness or to convince physicians that it’s a non-psychological complaint.”
Very well said, Meredith! That is exactly how I feel about ME and I have never wanted to use that term (or ME/CFS either). My physicians wouldn’t recognize it at all, and if I shared it with a layperson, they would immediately ask what it means. I know this is the case because I also have fibromyalgia and people unfamiliar with it always ask what the word means. At least in that case I can give a logical answer.
But with ME, I would have to explain that it means inflammation of the brain but that there is no evidence that I actually have such inflammation. To me that is terribly trivializing and sounds fake. At least when I say chronic fatigue, people have some idea what I’m talking about. And I like SEID a lot because to me it explains the illness better than any other term I’ve heard to date.
According to Cort’s article, Dr. Jason said that ME “is not an accurate description of ME/CFS at this time, but argued that it was well known and loved in the patient community.” To me, that is a terrible argument! Doesn’t that just reinforce the idea that we are malingerers who simply want a medical sounding name for our “illness” even if it is technically inaccurate?
However I know that many patients and patient advocates, clinicians, and researchers prefer and regularly use ME or ME/CFS. These are people I greatly respect but I have long been confused as to why they like this term. Am I missing something here?
There is no perfect name. Speaking as a patient whose life has fundamentally changed because of this disease, and whose career in health policy ended because of this disease, I believe patients can have more impact by looking at the positives in this report. That is not to say we should not question those elements we have concerns about, including the name. But I would really like to see tangible improvements in treatment in my lifetime. I am 63. My friends are out skiing this week while I am on the couch. I am going to spend my limited energy to try to build on what I see as a serious response to a debilitating illness that has often been dismissed by the federal government, insurers and clinicians. I hope others in this community will join me.
I certainly will…Thanks for the reminder.
I agree – there is not going to be a perfect name. There’s is not going to be a name everyone agrees on.
I think we should all agree on one thing – there is not going to be a perfect name. Once we get that out of the way – we can probably handle whatever name ends up being chosen.
Well said Christine! You’ve articulated my thoughts, thank you! I’m 67 and would also like to see “tangible improvements in treatment in my lifetime”. For me, pacing will require focusing on moving the positives forward.
Thanks as always Cort for your informative blogs!
Yeah it won’t let me move them on my IPad. Also I think one name is missing. I think the new name is awkward but at least I don’t find it demeaning or trivializing.
Ramsay is spelled with two ‘a’s, for Dr. Melvin Ramsay.
Thanks Cecilia – fixed it.
Frustrated by the name debate. I sat with a head of neurology hung up on why ME was an unsuitable name !!! Really let’s move forward the IOM came up with a lot of good stuff great ideas and a name that describes how the disease effects us it may not be perfect but they themselves acknowledge that!!! Why are we staring at our navels instead of looking out seely funds treatments and cures!!! Let’s not fight our friends …. We have a disease to fight not people doing their best to help us!!!
I agree with Tammy. I do not even know what (who) Ramsey refers to but agree that a person’s name can transport us beyond the constant bickering. AS long as it always refers to a definition which is widely accepted by the clinicians and researchers who know the disease, a surname-title for ME is fine. I think it is time to stop focusing on one symptom over another in the quest for peace around this or that issue. PEM is a core, key feature of ME but is still not the whole picture. Doctors may get shaken awake by SEID, but the committe probably did not consider the effect on the public, of hearing Systemic Exertion Intolerance Disease. I ran it by two people who both said, that could deteriorate pretty quickly into a translation like “lazy person”, person who hates exercise, etc. The overall public would just think it sounded weird or goofy – and would not understand just how little exertion we are talking about in the case of most ME patients. We are not talking about “real” exercise any more, at the level of impairment most people get. We are talking about just getting through one’s disabled, housebound day without crashing, or worse….
Options no one thought of yet?
I was thinking that Hillenbrand’s disease would be a nice sounding option – that, or Komaroff’s disease. Hillenbrand is not the most famous of people but the point is, she is respected, and the use of a patient’s or well known, involved doctor’s surname (as opposed to a description, when the disease is so complex), will get around the situation patients have faced for decades. If the media and public are just parroting the name, they will have to come to understand the disease based on what our better known researchers and doctors say, not just their own assumptions about what the words mean. Give them nothing to misunderstand. There are many doctors whose names could be credited – but Komaroff sounds the most catchy and dramatic to me. Montoya might work too… Bell is taken for some neurological conditions already, Peterson is a bit unwieldy, and Klimas is too ambiguous to pronounce… etc.
that said, NDS or NEID is ok… it speaks to all corners, but does not suggest PEM… but just a note – the word NEID in German means jealousy. So if it were to be an international term, rather than just an English term, people would want to stick to NDS and say “n-d-s” i guess.
I think the suggested name of “Hillenbrand’s Disease” is genius, Linda. There was a great deal of spotlighting on Laura and her book, “Unbroken” and the highly acclaimed movie, directed by Angelina Jolie. It’s not scientific, but a really good, strong name.
It is true that there has been too much attention and emphasis on the name assigned by the IOM. More negatives than positives, according to the reaction of the community. Let’s focus on the positives in the report; of which there are many.
I AGREE.
I ageee Hillenbrand’s name would be perfect! Wonder what she would think of the name? “Hillenbrand’s Disease” or just “Hillenbrand Disease”
I agree Hillenbrand’s name would be perfect! Wonder what she would think of the name? “Hillenbrand’s Disease” or just “Hillenbrand Disease”
Unable to move any of the names around.
Here’s another one for you . . . . .
Mary, Mary quite contrary,
How does your garden grow?
You have too many seeds (SEIDs) you say.
Is that why you are so slow?
Out of 100 name option possibilities, SEID is the best that we can do?
I agree with Lenny Jason. A more inclusive process needs to be employed when selecting an appropriate name.
Until we can find a more accurate, meaningful, and descriptive name, I believe we should stick with ME/CFS. As soon as more research has been verified, then we need to select a comprehensive name.
A name based on one set of symptoms for a very complicated and dibilitating disease is like throwing the baby out with the bath water. SEID is the bath water and this complex illness is the unnamed baby.
C.C.
Unable to move any of the names around. I do not like any name that includes the phase post exertion, since the symptoms are not limited to that.
I agree, altho post-exertion malaise is sure bugging the heck out of me! Started swimming again and I feel worse afterwards…SO discouraging…
Hi again – I just read the comments from Adrienne and can also agree with this point of view. If we want to discuss names, that is one thing. But there is a huge step forward which has also been made in this IOM matter – somethign like “never again”, avowed by some very important, committed members of that committee. Never again will this disease (yes, disease), be relegated, ignored, ridiculed, obfuscated, or disrespected. That seems to be the intention.
Maybe we would do well to remember that although many of us have personally been ridiculed or dismissed along with past names and branding, the majority of people unfamiliar with ME CFS have no opinion about it or its sufferers whatsoever- they mightn’t even know it exists or “know enough to care”. Yet…..
So if doctors and advocates start getting more funding based on the IOM advances, and it leads to more media coverage, that might change and the public will just follow the leaders’ opinion that this is a disease to respect and support – and care about.
Adriennes’ comment speaks to what the committee member of IOM who was interviewed on radio (CBC and Nashville, other stations) stated – that she hoped that regardless of whether the name recommendation was taken on by the US Dept of Health (I hope i wrote that correctly – i am Canadian), that the actual IOM guidelines be taken seriously, far and wide, and implemented with said recommendations to actively pursue and advocate for more research and care funding for people beleaguered and benched by this terrible condition.
Yes. Yes. YES.
other notes – thanks for the clarification about Ramsay, Cecilia. Must be a ref i missed along the way. Who was he? Is he? (how i would love to be able to read normal amounts of info again….)
Yes, Yes, Yes!
Suzy Chapman has pointed out that the World Health Organization discourages the naming of a disease after a person. Thus, Ramsay’s Disease is not a viable choice.
Didn’t know that – Thanks Merry.
The new proposed name is SEID with the D for “Disease”. This poll uses “Disorder”. While many of us ( including me) are ok with the name ME, Ramsay’s disease is worth serious consideration.
1 There is stigma and confusion associated with the name ME as well as CFS, especially in the UK.
2 Encephalitis might be accurate, but the MYEL in Encephamyelitis is probably not.
2 Any descriptive name at this point and until we have it nailed is going to be inaccurate
3 Ramsay’s disease has significant history. He called it Royal Free Disease, where the outbreak happened in 1955. My father was one of the doctors there who got it so I am fully informed. His work stands up today as outstanding in describing and treating the illness.
4 Using a name is better than describing ME as it encompasses all future knowledge.
5 It is easy to remember, spell and pronounce.
6 It is surely less contravertial and subjective than the other 5 options.
Couldn’t edit this! Apologies for mispelling Encephalomyelitis- guess that says something LOL.
I like Ramsay’s Disease too, and would be fascinated if you wrote a blog Cort could post about your father and his experience with this disease and with Ramsay. We need not only our true name but our true history!
After listening to the IOM committee’s report, I have to say I was not too happy. However, I think this name does have a few things going for it:
– as far as I know there is no other medical diagnosis that lists “exertion intolerance” in its name, which I think may alert physicians to the fact that something very different and worthy of attention (and further study) is going on in this disease. “Intolerance” becomes a medical term in the context of the name (which the authors expand on), so the worry that physicians will just think we’re lazy is, I think, unfounded.
– they are finally labelling it as a disease, not a syndrome. I’m for that.
I’ll readily admit they’re missing way too much, and the process should have been far more inclusive (like say, having a few PATIENTS on the committee??? crazy idea, of course 🙂 But in reality, how can one condense the immensity of this disease into four simple words?
If the FDA & CDC decide the name stays, it will be very interesting to hear patient’s stories as to how their docs ARE perceiving it.
– if it promotes research, let’s make the best of that. It is what we’ve needed for so many decades. The next name may be far more accurate if science is accelerated by research in the next few years. We hope!
– Christine chrismz@sympatico.ca
There were several people on the Committee who had personal experiences with the disease beyond professional involvement.
I, too, prefer Neuroendocrine Immune Disease (or Disorder/Dysfunction). I realize that it is not one of the five choices listed but to me it illustrates the seriousness of the disorder, as well as the fact that there are several systems of the body involved. Honestly, I do not believe the new name is any better than the current one. I feel that focusing mainly on the post exhertional part will still mean the disorder is not taken seriously. Only those of us that live with this and the doctors that advocate for us understand how debilitating it is. People will still not understand the seriousness of this illness with the new name because if they happen to occasionally experience their own post exertional fatigue, it still doesn’t come anywhere close to what we experience with the illness. The new name still makes me cringe and will still allow doctors and the population at large to be dismissive of the illness and trivialize it.
I added it in and will add your vote to the total.
Cort, Please add NID for me also. I cannot get the tally thing to work.
Thank you kindly!
Will do.
I like SEID as a temporary name, but not a long-term name. For a temporary name one must consider the state of affairs in ME/CFS. We need medical acceptance, research funding, insurance acceptance, and social acceptance. SEID speaks volumes to medical professionals, who will immediately develop a mental concept of the disease when seeing its name. And a much more accurate concept than before. As already stated ‘intolerance’ in a medical context is jargon, and not the same thing as ‘does not like to.’ SEID works for medical purposes.
However I agree with some of the negative perspectives of SEID in a social context. I don’t think SEID is much better than CFS for social acceptance purposes. But at this time I would prioritize the medical and research goals above the social. When researchers have a better idea of the cause and pathologies and treatments, then a better name for both medical and social purposes should emerge. But for now as a temporary name, and a way to encourage more medical funding and improve medical acceptance, considering the confusing nature of the territory, SEID is not too bad of a choice.
Interesting…I think you’re thinking what the Committee was thinking..
I, also, prefer Neuroendocrine Immune Disease. I wish it had been one of our choices in the poll.
Neuroendocrine Immune Disease is the best pick out of all that are listed, however, I think people suffering from this illness should be allowed to nominate possibilities.
It is so all consuming. The name needs to reflect that.
I say back to the drawing board with the naming of this insidious disease.
As others have stated, we need something that will convey to others the seriousness of what we’re dealing with here.
I have been suggesting for years that Idiopathic should be included somewhere in the name …It has a long and distinguished history of use in medical nosology and it certainly applies with our ME/CFS fibromyalgia complex. ..It simply means it is real but we dont know the cause…
Idiopathic Chronic Severe Systemic Exhaution….or dare I say it…Fatigue
None of these words imply we know the cause or the cure….and we dont. They are simply descriptive, they just describes what we have.
Mix and match..we dont need all of them ..but Idiopathic it is really a good fit
I have a long argument supporting Idiopathic as part of the name. It will have many benefits if you would like to hear them let me know.
The problem with “idiopathic” is that it is already being used in the technical term “idiopathic chronic fatigue” which refers to fatigue that falls just slightly short of the criteria used in the Fukuda case definition.
The joke I heard in medical school is that “idiopathic” means the doctor is an idiot and the patient is pathetic. Or maybe it’s the other way around.
I think we need to stay away from including anything in the name that implies causation or specific system involvement. We all have our different theories ideas and hypothesis, nothing is certain but that we are all very ill, intermittently for some, constantly for others. Idiopathic in the name will draw researchers hoping for the Nobel awaiting someone who solves our puzzle.
What happened to the other variation of ME that drs find more acceptable. Myalgic Encephalopathy? Just ANOTHER suggestion.
I don’t mind SEID. AIDS (Acquired Immune Deficiency Syndrome) isn’t exactly a riveting name but everyone knows what that means. The point is we have to get the message out there in a way that people do get it.
Just wish all this time and energy were put into research.
Thanks Cort .
Myalgic Encephalopathy could win with physicians but patients do not accept anything that will take away from the inference that “itis” conveys. Encephalopathy fits and doesnt give credible, be it slightly miss informed, ammo to the medical community doubters.
At least from the perspective of formerly being a marketing professor and marketing consultant, I think the name is incredibly important.
It will have a huge impact on how much and what type of media coverage we get, how busy doctors view the sufferers who walk into their offices, and what the average Joe or Jane thinks of us.
As someone who is trying to help market this disease beyond the walls of our little community, I cannot work with the proposed name. Period.
The idea that we should accept a bad name for the time being in the hope of getting a good one later is a big mistake.
A good name – maybe even a great name – is possible!
I discuss the issue of the name (along with other issues with regard to the IOM report) in this blog.
http://www.paradigmchange.me/wp/iom/
LISA–WHY HAVE I NEVER HEARD OF THIS? AND WHY IS THIS EXCELLENT INFO NOT MADE MORE AVAILABLE–CORT–CAN WE NOT HAVE THIS PUT ON YOUR BLOG? SEEMS TO ME, DR. RAMSAY PRETTY MUCH COVERED IT YEARS AGO. CLEAR, CONCISE & ACCURATE. SO YES, I AGREE WITH THAT NAME & HOPE OTHERS WILL CHECK OUT THIS LINK. THX, LISA.
SORRY, THIS SHOULD HAVE BEEN DOWN FURTHER REGARDING LISA’S LINK TO DR. RAMSAY’S DEFINITION.
I totally agree with you Lisa.Nameing is EVERYTHING.
WELL SAID LISA
SAD = Systemic Atrophy Disease… .
There’s already a SAD – Seasonal Affective Disorder, which is a type of depression. We don’t need anything that strengthens that connection in people’s minds. And, atrophy makes it sound like we are deconditioned; another thing far too many believe about us.
You can find umpteen permutations for any 3 letter acronym; so that reference would have to be taken in context. To wit, the AMA is of course the American Medical Association in one context. In others, it is well recognized as the American Management Association, the American
Marketing Association, etc.
I’m still of the macro perspective for a name since the ‘illness’ covers so
many variants and sub groups; it seems to be progressive, certainly not
static, and it wreaks havoc with various bodily systems.
I’ll offer one more, which I choose when telling people who ask why I can’t
commit to this or that: Progressive Systemic Athophy, PSA notwithstanding but maybe relevant for some , )
I think I would have to go farther than Dr. Jason and say I think a good part of the report is simply fodder planted by the CDC to try and keep us all happy with no spending for our disease. I mean “Centers of Excellence?” I think that’s called University Hospitals and they already exist by the hundreds in the US. We just need money and respect and actual researchers to solve this disease! The first death from AIDS happened in 1979, in 1980 UCSF opened a floor devoted to HIV research. Stupid name, no promise of more money! I need more time to come up with a name, they clearly did as well!
I agree with Lisa’s comment above 100%.
In regards to a new name, I prefer “neuroendocrine immune disease (NEID)” .
While I like NEID, it does not reflect the physical and mental cognitive fatigue that is a cardinal symptom to this disease. Not that I have a better idea. marcie
I love the last paragraph –
“Funding ultimately takes care of everything – changing the name does not. Mounting an effective advocacy movement to obtain more funding and produce Centers of Excellence where patients can have access to the best treatments available is the most critical factor right now.”
I really hope we don’t lose sight of this going forward!
Regardless of the continued shenanigans I will be calling my own now 19 year long illness Idiopathic Mitochondrial NeuroImmune Disease. I base this on 6 years of focused medical research and experiments in a collaborative environment, as well as tests supporting this.
Regardless of the continued shenanigans I will be calling my own now 19 year long illness Idiopathic Mitochondrial NeuroImmune Disease.
I agree about the mitochondria being added to the neuroimmune part, though I’d stick with neuroendocrineimmune…..the only thing is that there isn’t enough evidence of the mitochondrial issues form large studies….what evidence is there is very convincing, and I totally believe that there is mitochondrial involvement; however, for some reason that is one area of research that has been largely neglected
Two thumbs up.
I believe the best name is: non-HIV AIDS. It accurately describes it while properly conveying the severity.
Unfortunately, it will also stigmatize the illness, as the main thing that many people will hear will be “HIV AIDS”. Adding “non” to it won’t help much with those who get AIDS stuck in their minds.
I agree~DON;t care for that label at all.
Non-HIV Aids …are you nuts!!!??? We have to put up with enough stigmatisation as it is, without bringing such a controversial term into the naming process..Thanks but no thanks. Sorry.
Also, Congress controls the purse strings.
If we cannot get NIH to increase funding voluntarily, we can do it through our elected Senators and Representatives. And I think we’re at the point in terms of everything else that they can be brought on board.
Does anyone really think elected officials are not going to be influenced by what the name is???
This name is a deal-killer with regard to them too.
This is basic branding strategy.
Regardless of what one thinks of the doctors and researchers who are sitting on the IOM committee, they are not marketers.
And the recommendation of this particular name demonstrates that they did not consult any marketers when choosing it either.
I have would have liked to see CFIDS (chronic fatigue immune dysfunction syndrome) on the list. To me adding the immune dysfunction puts the focus on that and makes the chronic fatigue part of it sound much more serious by way of being linked to immune (and possibly infectious) etiology. The WHO aside, there are numerous diseases such as Parkinson’s and Alzheimer’s that people have around the world have and that are not going to be changed any time soon, so my vote at the moment would be for a named disease. I agree with others who say it might be less controversial. I’m not a fan of SEID and I would like to know how the committee expects the name to be changed in a few years. Are they going to have a massive publicity campaign each time the change the name? What will research papers be filed under? Perhaps some examples of other diseases that have had there name changed more than once in a short time frame would help me understand how this will be dealt with.
On a more humorous note one solution to the name change problem might be to follow the lead of certain famous musician and call it “The disease formerly know as CFS” 🙂
I like the idea of having “disease” in the name rather than syndrome. Personally I like Chronic Epstein Barr because that’s what it feels like to me but Ramsays Disease works too. I can see the appeal for NDS but dysfunction might be cause for more eye rolls. How about WDKWTFTI disease. I’ll leave you to figure out the acronym 😉
figured out WDKWTFTI disease ……lol, kinda love it!
NEIDS would be my choice.
This is a disease. It is not a ‘disorder’… unless Multiple Sclerosis, Lou Gehrig’s Disease and Smallpox are also disorders Some say they are. I imagine that the people who have them think they have a disease. .
I would like to see ‘disease’ in the name. It may be best to name it after a person rather than a symptom because etiology, basic understanding of this disease is not at all evidenced at this time.
@http://en.wikipedia.org/wiki/Disease#Disorder
Charles Shepherd’s suggestions for alternate names were not included in your poll above, Cort.
What’s in a name? Well take ME and change one tiny letter and you end up with an illness that everyone “understands” in lay terms. I’m talking of course of MS – which shares a lot of similarities in symptoms but no one ever tells them that CBT and GET will sort them out.
That name to the average Joe on the street means nothing in terms of conveying the nature of the disease but it has had good PR over the years, good and continuing research and is generally understood to be “a bad thing to have, I’m so sorry that you have this disease” as opposed to the terrible PR that ME/CFS has had “well everyone gets tired (you need to pull yourself together and exercise more)” vibe that seems to be the concensus of the medical and public at large.
I don’t know what it should be called but I like the idea of Ramsay’s Disease which as previously said wouldn’t need to change as the understanding of the illness progresses. I also wonder what the perception of the report and new name is amongst the medical profession here in the UK. Will my GP have even heard about it, doubtful. Once again it will be the patient educating the professional.
Ramsay’s Disease gets my vote.
The best part about this name is it can work alongside a descriptive name like M.E. or SEID, and can remain with future changing acronyms even as debate will likely rage on for many more years about etiology. Ramsay’s Disease would allow us to unite behind a name as a community (remember this is an international patient community who will be even more resistant to SEID than Americans are) and move forward, educating the public with an easy to remember name, and getting on with our bigger priority of obtaining funding for research. One common example of this dual-name relationship is with Lou Gehrig’s Disease and ALS.
Yes, Ramsay’s Disease is an eponym (named after a person) and the trend is reportedly away from these names in medicine, but a few arguments listed on Wikipedia for maintaining eponyms for a particular disease are when:
1) The name may be shorter and more memorable than the medical one
2) Sometimes the medical name proves to be incorrect
3) The disease may have more than one cause, yet it remains useful to consider it as a whole
As the first to accurately describe this disease in 1956, Dr. A. Melvin Ramsay is an important figure in M.E. history and as such provides continuity and pays respect to his contributions to our field. To learn more about Dr. Ramsay, see a helpful bio about him at http://www.name-us.org/DefintionsPages/DefRamsay.htm
I think that any name with a “name” in it, is still going to be questioned. If I tell people I have ME, they say :”What’s that?”. Same thing will happen if you use “Ramse/ay’s disease/HIllenbrand’s disease”. This whole concept has been so “back-burnered” that it will just create more confusion. Must tell you tho’ that I have had very different responses to “ME” and “Fibromyalgia” – same doc, about a year apart. When I said that I had been diagnosed with ME, he kinda looked sceptical and brushed it off. When a year later I had to see him again (he’s my hubby’s doc) as my own doc was away, I said that I had Fibro, (needed some cortisone for pain relief), he was immediately sympathetic and helpful. He even made a note of this in the file…huh???!!! I also do find that people have at least heard of Fibro and can sort-of relate. Any disease/syndrome with too many words/syllables in it, just causes confusion and quite frankly sounds like we’re trying too hard. Keep it simple. Having said (all!!) that, thank goodness there’s some movement – discussion and greater awareness will also help loads. Hang in there, everyone!
1. I WOULD LIKE TO BE ABLE TO FORWARD TO FACEBOOK–I DO NOT USE LINKEDIN
2. WE NEED A LIKE & A DISLIKE OPTION–SAVES ON WRITING.
3. I NEVER HEAR BACK ABOUT ANY FUTURE POSTS VIA MY EMAIL.
4. THIS IS THE BEST BLOG–THX CORT!
What a pity that so much time, energy, money and the employment of (presumably) highly qualified doctors was wasted on what the disease should be called. All would have been put to better use trying to find its cause and treatment! I don’t care what it’s called – I just want to get better!
🙂
After we get the name issue out of our system I think we can move on…
This is frightening. We are all suffering; we all need help. But we have no science. Not even a name. Houston! Houston! We have a problem………..
This is frightening. We are all suffering; we all need help. But we have no science. Not even a name. Houston! Houston! We have a problem………..
I cant vote on my tablet, I will try on a desktop later, but ‘Ramseys Disease’ definitely gets my vote.
Another great post, Cort, on a very hot topic!
I hope it’s OK that I mention here that there is an e-card that each of us can sign to thank the IOM committee for working hard for us – for a year, unpaid! – and coming up with a powerful, groundbreaking report that has federal clout and that we can use for advocacy.
As you know, the committee included familiar, big names from the ME/CFS world such as Dr Nancy Klimas and Dr Ron Davis but no-one who saw Dr Ellen Clayton, the committee chair, in action at the launch of the report, could doubt that even the newcomers to the field were thoroughly on our side and anxious to give us the ammo we need to get diagnosis, funding, and respect.
Sign the card here: http://www.groupcard.com/c/52DxE5A73Uz
There may be bits and bobs that people want to criticise in the report – and this issue of the name is proving contentious, of course – but a thank-you card is not the place for that! Please, folks, stick to words of thanks and appreciation if you would like to sign the card, and contact the HHS directly if you have points to make about the name or other issues.
Yes – all that work – unpaid! And from some people who aren’t even associated with ME/CFS – it’s amazing…
Thanks for the card – I signed it.
Thanks, Cort.
BTW, Cort, a picky comment (I’m sorry!) – it’s Ramsay, not Ramsey, after Dr Melvin Ramsay.
Perfectly all right – I fixed it – thanks
I’m very excited about reading your next post, Cort, about building an advocacy movement to effect change. The IOM report gives us the ammunition to do that. I hope we can rise to the challenge.
glad to hear it! l’m excited…I think we can make this a year to remember.
Acceptance of food intolerance is becoming more common. People are gradually getting the idea that intolerance can lead to physical illness if you eat the wrong substance. Hopefully this will bleed across to SEID. Exert yourself (and that can include talking on the phone) and you become physically ill. I know that’s the way I’ll be explaining it to my friends.
It is Systemic Exertion Intolerance Diseas, not Disorder.
But good ide to do a poll.
i too wonder, was “disorder” a mistake or did you actually choose that particular word over “disease”?
would make a huge difference for how i would vote…
Call it an ME/CFS mistake – I fixed it. Thanks for spotting that and letting me know.
I think we should accept this name even though its awkward to say. It has systemic and disease which is much much better than chronic fatigue. I’m not crazy about exertion intolerance but if you are willing to look at the description I see why they chose those words and it is actually accurate (mental, physical emotional exertion leading to crash) I do think possibly adding immune to this might be a good idea. I feel like its wasting time and effort to keep harping on the name….Ramsays Disease would’ve been best in my opinion but it is not what happened (and no one can pronounce Myalgic Encephalomyelitis in the general population so in a way I don’t think that name would help us and its always linked up with cfs….I want the cfs to permanently go away, it would be nice to make a clean break from that word “fatigue” exertion is much better, at least you can attempt explanation before the yes glaze over and the person yawns and tells you they are tired too….just my opinion, but I think we should try and embrace this new name and work to educate the general public on what it means.
If it’s chosen I will just say it’s called SEID I think…like MS…
I hope a lot of money will be available for scientific research. I think this name will not be adopted in Europe that is a real problem. We now get research with ICC, Fukuda, Oxford and SEID criteria in science. A real mess. The name wasn’t the problem, money for research and criteria are the problem.
I don’t think it will either. ME is too embedded. Most of the research money comes from the US so it’s important to make movement there even if it’s adopted elsewhere.
1869 Neurasthenia
1895 Anxiety Neurosis
1916 Battle Fatigue, AKA Soldier’s Heart
1936 Morbid Industrial Fatigue
1941 Chronic Fatigue
1945 Allergic Fatigue & Weakness
1952 Allergy of the Nervous System
1957 Epidemic Postinfectious Neuromyasthenia
1975 Autonomic Dystonia
1982 Total Allergy Syndrome
1984 Chronic Active Epstein Barr Virus Syndrome
1986 Hypersensitivity Syndrome
1988 Chronic Fatigue and Immune Dysfunction Syndrome
1994 Gulf War Syndrome
1998 Chronic Multisymptom Illness
2001 Chronic Neuroendocrineimmune Dysfunction Syndrome
See more: http://www.cssa-inc.org/Articles/CFS_names.htm
2005 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and now 2015 Systemic Exertion Intolerance Disorder – a long list of names over the years, for the same condition.
I am okay with SEID, more importantly, I want us to move forward, the more were talking about the name, the more we are losing precious time, and money that could be spent on a cure. Our outrage should be the $2.00 the NIH gives per person with this illness a year, sometimes I think we as patients have been so bullied, and abused by the very system that we pay to help us, that it seems we cant be happy with anything. We control so very little in our life that when comes to our opinions were not happy with anything, don’t get me wrong we have a right to gripe, but we need to focus on the funding. This is a complex illness that takes most, if not all quality of life from us, we need funding. The reality is that it hasn’t been the name, its been the funding. They tell us how much they care about us, but what have we seen? No real funding, no Ampligen approval, those are two things that should have been done, that would give us some hope, and make us believe in them.
Couldn’t agree more Walking Dead.
I am unable to click on the link. NDS is my choice. Thank you.
Actually there’s no clicking – all you need to do is grab the icon to the left of each choice – and slide them up and down until you get them in the right order and then click submit.
It had me confused as well 🙂
If the name is changed now the entire history of the disease will be erased and it will be as if it never happened. A new name, a new disease. The name is very important as we learned with CFS. Since it is already established and reflects the seriousness of the disease I vote for ME although it could also be called Ramsay’s disease after the doctor who named and defined it so many years ago.
Ramsay’s Disease, it leads away from negative connotations whatsoever and if someone wants to know what the heck it stands for, we can always say: neuroendocrine immune disease 🙂
I could not get the vote to record, but I like Ramsey’s Disease. Although I don’t mind SEID. I think there is too much emphasis being put on the name and not enough on what the report can do for it and what we can do with it.
why change the name. They have done that so many times with RSDS and it has changed nothing in the medical field. It should stay the same and teach the Drs. and Nurses in medical school what it is and how to take care of it.
I could never understand why CFIDS hasn’t been adopted. The “immune dysfunction syndrome” part conveys a seriousness akin to AIDS, and if it doesn’t tell the whole story, at least it tells a big part.
I agree with Ellen-
I have often used the CFIDS acronym and then spelled out the words in parentheses.
Keeping the “CF” would clue people in to the previous name of the disease.
Most researchers would agree with the “ID” portion in that there are changes in immune dysfunction with this illness.
And until they identify the cause, the “S” for syndrome refers to a cluster of symptoms–many of which are omitted in the current paltry SEID criteria for diagnosis.
I remain open to any variation of neuro/endocrine/immune disorder as well.
It took me awhile to have a reaction to SEID. I think now that the word intolerance is overused in relation to diet and medicines. It suggests maybe a mild distress or a little gas after meals. I am not allergic to some chemicals and foods (since having CFS) but am “only” intolerant. This means I will not suffer death or too much dysfunction if I ingest them. If I drink milk, being lactose intolerant, I will have colon consequences. If I avoid milk I am fine. I have had CFS since 1990 and if I avoid exertion I am not fine. I think this is the biggest problem with the name, right? Plus, exertion did not cause my illness. I have post viral brain damage I believe. This causes a body that goes haywire in response to many stressors, not just exercise. Why is it so hard for them to come up with a name that does more than describe a symptom?
Boy, did this article generate some opinions, thoughts, and comments. The 9.000 literature reviews by the IOM failed to show any “imflammation” in the brain so the word implying it, encephalitis, is out for the moment. As well, thus far studies indicating immune changes are small groups and none have shown a distinct pattern. Some patients have positive sedimentation rates and positive RA’s but many do not. While we can all agree that it is multi-systemic in terms of symptoms, I would say that until more research determines which part of the immune system is affected as well as which cytokine, we will have to wait. The IOM paper stated that they would revisit the name and circumstances in five years or SOONER depending on any new research findings. I think it’s wonderful that it’s been defined for primary care practitioners and specialists as this will help any of you who are seeking much needed disability payments by finally reaching a consensus definition as “protocol” for diagnosis. My issue has been that of teaching it in our medical universities and it would appear per the IOM that this will finally become a reality. Our mission is to push for more research monies which I hope the IOM will have assisted with by virtue of their statements of the numbers of patients involved and how seriously debilitating it is. Importantly, they have no intent to get rid of the CFS/ME name but instead intend to add SEID to our list of diagnoses by way of giving it its own code for the DSM. I feel that we’re on the right track with the IOM and wouldn’t know what to call it if we want to rid ourselves of the judgmental Chronic Fatigue Syndrome words. Perhaps Nancy Klimas will elaborate during next week’s webinar: Tuesday, February 24 at 3pm EST. Sign up to watch it. marcie
This dd is more than meets the eye though; is more than most of the name choices imply — because it’s also an enterovirus; possibly even caused by an enterovirus; which is why I want it named after one of the people who “discovered” it. That’s why I go with Ramsey’s Disease as my first choice.
Judy
http://www.Structured-Water-Devices.com
Side note: since forever I’ve been checking the box “Notify me of new posts by email” but it never does notify me of posts.
Thanks for your good work, Cort. Your website provides the most up to date information out there. I’m very grateful for Health Rising. I recently came to the conclusion I need to start putting my money where my mouth is!
If my disease was to be named after anyone, it would be Dr. Byron Hyde, or Jodie Bassett. Neither would be considered though; neither believe M.E. and C.F.S. are the same disease.
Dr. Hyde, in my opinion, has the best understanding of the disease.
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Jodie Bassett, stricken with severe M.E. at nineteen, now in her thirties, has devoted her life to helping others understand the disease–developing the most comprehensive website available for those with M.E.
http://www.hfme.org/
Systemic Exertion Intolerance Disease…hmmm, with every system in my body affected negatively by exertion/too much stimulation…immune, neuro, endocrine, cardiovascular, respiratory, CNS, lymphatic, gastrointestinal, muscular-skeletal…really, not a bad name.
I call it “They-think-it’s-probably-auto-immune-brain-inflammation”. Can you add that one in?
None of the above. Just leave it be until we know what we are doing, and in agreement.
Honestly, I really don’t care what they call it just so long as doctors take it seriously.
You would think that the patient could call any doctor’s office and ask, “does Dr. John Doe see many patients with CFS/ME?” and get a straight answer. If he sees a lot of these patients, then you would guess that he might take it seriously. If he doesn’t see a lot of these patients, then why would you want to go see him?
I even asked if his nurse could take down the question and call me back with a straight answer so that I wouldn’t waste my time or the doctors time with a visit. (Along with wasting my money!) I have yet to get a phone call back and that was in August and September!
What is a patient supposed to do? Well, I ended up having my husband drive me 5 1/2 hours (one way) to my previous doctor so that I could actually get someone who would listen to me and spend the time with me necessary to help me.
I go back to that place 5 1/2 hours from here every two months now because I can’t get a doctor here who will take me seriously.
There’s definitely something wrong with that!
Nonetheless I’ll repeat my previous assertion that I don’t care what it’s called as long as it’s taken seriously.
I was diagnosed by a brilliant young internist in a small city and he wrote down
myalgic encephalomyelitis for myself and later the same for my husband
in less than a year.
That was hard enough for me to pronounce to others and to doctors
and to spell..
That term is used in Europe as I have friends there that
tell me so.
If there was something that was even a little shorter than myalgic encephalomyelitis
that would be good.. The shorter the word for the disease the better because
by the time you get the word out to a family member, or friend they have lost interest
in the illness..
CFIDS is okay with me..
I totally dislike Chronic Fatigue by itself and that appears quite often
on my records the past couple of years…
If I mention my illness I do say myalgic encephalomyelitis as one of my diagnosis.
We were fortunate to have an internist in 1995 and the late 90’s who
had no time to research this illness
but was curious enough to learn and then diagnose us while he was working a heavy
patient load daily..
1) The trend in medicine, as noted above, is to retreat from eponyms. I support this, mostly because eponyms provide no actual information about the illness — not etiology, description, pathology,etc. Almost all eponymous names were ones given in the past. One other problem is the person who the disease is named after doesn’t want it named after them (e.g. not sure if Laura Hillenbrand, even as an advocate, wants a disease named after her).
2) Having endocrine in the name is problematic because although there are subtle differences in the endocrine findings of patients versus healthy people, nothing really stands out at the moment. So having “endocrine” in the name is currently scientifically inaccurate.
3) Although people are understandably concerned about it, I think what is more important are the criteria created by and science discussed in the IOM report. A better name will be created when we understand the disease better. So, more important than the name is a push to get the criteria learned by healthcare professionals and more funding for research.
The NY Times had an article on how names were developed for products — the money spent, people hired, time taken, etc. — but the bottom line was that the name was less important than what the name stood for ultimately:
“What Shore didn’t tell them was that even if the name they chose received a tepid reception, the power of their production process could still overcome it. Most namers will tell you, as Paola Norambuena puts it, that a “great name can’t fix a bad product. A great product can fix a bad name.” Accenture was met with derision for reminding people of dentures. Gap was an empty space. Yelp was a dog in pain. The iPad was confused with a tampon. Now these names have no odd connotations at all, thanks to the success of the things they name.”
[http://www.nytimes.com/2015/01/18/magazine/the-weird-science-of-naming-new-products.html?_r=0]
Great stuff Anonymous. I’ve wondered if the practice of naming disorders after people or if using a name that can’t be backed up scientifically just isn’t done anymore….
I would love to see the list of 100 names the committee came up with!
If we could go back in time and call it Ramsay’s Disease right from the start, that would be just perfect, he deserves this recognition immensely, his name should have gone down in history. And ME, well, as Shepherd noted, if it turns out there is no “itis”, there is certainly “pathy” in the brain of a kind or another, so ME can well stand (as myalgic encephalopathy)
Otherwise it could have been interesting to derive a name from the manner in which the ICC refined the vagueness of post-exertional “malaise” with post-exertional “neuroimmune exhaustion”: Neuroimmune Exhaustion Disorder (NED) or a heavier-sounding “Neuroimmune Asthenia Gravis” (NAG), with strong emphasis on “gravis” and with “immune” firmly set between neuro and asthenia and keeping these two apart! We don’t want doctors to “go there” ever again… I am not really serious about the last one, but still, it sounds cool…
I am not content with the SEID name, since it leaves unstated/understated the Neuro & Immune dysfunction so involved in this complex disorder, which is actually multi disorders.Yes, the Exertion Intolerance is also a key term, & is evident in all who have this devastating disease, but this type of total body exhaustion Stems from the former, and is not the disease in and of itself. So, if one could come up with a title in this order-it would prob. be too lengthy…such as Neuro-Systemic-Immune-Dysfunction-Exertion-Intolerance-Disease. or NSIDEID – or simply ‘& Exhaustion’- rather than Exertion Intolerance- so it could then be something like NSIDE. Still…What a mouth full! But So is this disease, which comprises Many diseases over time.And so such a name as this one would cover and speak for itself a more appropriate & complete description. I do Appreciate the pos. discussion and view offered by those at the IOM mtg. on the video. It has been no easy challenge I’m sure. Hopefully, this is the first substantial foot in the door for us, and more will follow soon.
I can’t vote from my ipad. My choice would be 1. Neuroendocrine Immune Disorder, 2. ME/CFS, 3. ME, 4. CFS, 5. SEID
I hate the name CFS, but I hate SEID even more. I find it equally open to demeaning interpretation.
SEID is way better than CFS, getting rid of chronic, fatigue and syndrome in one blow, and the word Disease is there. I cannot vote on that screen up there, as my cursor tells me I am in a table or graphics box, not something I can click. The IOM made clear that they, like so many doctors, cannot support M.E., because the phyiological evidence for the second word is not there. That is a stand-off, patients versus current medical practice for disease names. The only way the doctors can get away from the stand off is to name it for its key symptoms, as so far documented in valid literature.
They hope their name, SEID, is replaced when the physiology is undertstood. The IOM is intending to mark a new start — they direct doctors to make the diagnosis, which hardly any will do now. We will not know it is a new start until we see the changes IOM asks for.
After I read Jason’s post, I felt there are some patients who will reject anything done by the federal government, though IOM is not part of the federal government, it is part of the National Academy of Scienes – National Academy of Enginerring (NAS-NAE), a free-standing body of professionals at http://www.nationalacademies.org/. When I worked, I worked in transportation, and the Transportation Research Board is part of that structure, so it is familiar to me. I feel those patients are rejecting the new start out of hand, it would not matter what was suggested as a name. Jason tried to get a consensus name over a decade ago, I think, using the kind of process he describes, and it came to no agreement. With some patients so dug in, how would a repeat be better? The IOM did ask patients for name suggestions, and if I recollect correctly, M.E. was pretty popular, and the doctors cannot agree to that or to a disease with a person’s name. Why not go with the push of the professionals who agree with the insults buried in CFS, see a huge need for change, and offer directions for research, having tossed out just about all that has happened in 25 years or more? Simply to get way closer to 100% of people with the disease properly diagnosed sounds like a huge improvement to me. More people who can be in studies, wider acceptance of the condition and what makes it worse or better for daily living. I reserved judgment on this whole study until the results came out. I like their push to doctors to make the diagnosis and take care of these patients, and their stern analysis of the literature and where to go next in research.
Thanks Sarah for your comment
The survey is done very differently than I’ve seen before and a lot of people are having problems with it. Instead of clicking on the name you grab the icon to the left of the name and move it up and down until you have the positions right.
I formally worked as a medical technologist (clinical laboratory scientist) before becoming disabled.
Since I worked in the health profession, I signed up for some of the Medscape newsletters, including Medscape Rheumatology.
I just read the article they published in MR: “IOM Gives Chronic Fatigue Syndrome a New Name and Definition” by Miriam E. Tucker and there are currently 267 comments.
If I felt SEID was a poor name choice when the report came out, I feel even stronger about it now. It’s apparent that many of the doctors/health professionals who negatively commented didn’t read the entire report, and that’s one of my major concerns.
So, the question is, what would I name it? To describe myself, ME (itis) or Neuroendocrine Immune Disease. I’d even go with ME (opathy).
What if we let them go with the whole name for legal/ssdi/medical purposes and we just shortened it when speaking of it to:
Systemic EI Disease ?
I was sick a long time before I knew for sure what was going on. It took 2 moves from NY to Asheville and then Charlotte and an appointment with a GP who knew a lot about CFS (LLoyd Bridges) and then an apt. with Dr. Charles Lapp who REALLY cleared things up for me. I am so grateful for his help.
During all this, one day I checked the Internet for info about the disease as it was called decades before. I read Dr. Ramsay’s description and it fit me to a tee. I have no idea if there “is” inflammation present (or there “was” at the onset and my sickest time in the 80s. Almost everything on his list described what I had been suffering from.
After that, I had become really cranky about the ludicrous name of CFS and why ME was seemingly ignored when it appeared so appropriate.
I vote for ME with subgroups of itis and opathy.
Court, Im not able to slide the names but I would pick neuroendrocineimune disease as number one, cfs last.
Thanks Lynda
After reading th reference to Ramsay’s Disease I would be very comfortable with using that name if naming after a person is allowed.
BBB, body brain breakdown, can’t complete survey but a management that does not include fatigue or syndrome and explain all.
I may have to change my vote after talking with a doctor tonight.
As a few others have pointed out, there is a potential deal-breaker with Ramsay’s Disease, named after M.E. pioneer Dr. A. Melvin Ramsay.
I love the name, but here’s the problem.
You see, 3 other neurological diseases are already associated with another individual named James Ramsay Hunt (e.g. Ramsay Hunt Syndrome). This may not seem like a big deal to a lay person because Ramsay’s Disease sounds very different from Ramsay Hunt Syndrome. But, the doctor I spoke to was adamant about the likelihood that the panel and the medical community would reject it outright b/c of the overlap of these 2 names. Doctors like to be crystal clear about their disease name descriptions.
However, this same doctor said the differentiating name of Melvin Ramsay Disease would be acceptable.
Cort, given that Ramsay’s Disease may not be viable, do you think it is too big a stretch to change it on the poll to Melvin Ramsay Disease (MRD)? If so, that would still get my vote.
If people object to this longer eponym of Melvin Ramsay Disease (MRD), then I would probably stick with M.E.
Of course, all this talk about different disease names got the creative juices flowing.
New names for consideration that were inspired by suggestions like SCREWED…
My dad offered PFINND (pronounced “Find”)
Poorly Funded & Investigated No Name Disease (PFINND)
I simplified it to:
PFIND
Poorly Funded Impossibly Named Disease
I think we can all agree we are long overdue to PFIND real funding and a cure!
Ha – learned something new – thanks
Love your alternative name – I needed a laugh 🙂
So, 24 hours later, the name Ramsay’s Disease may work after all…according to another doctor. Let’s call it a 2nd opinion. 😉
Dr. Jonathan Edwards wrote this in response to my concern about Ramsay’s Disease having to be modified to Melvin Ramsay Disease or Acheson Ramsay Disease in order for it to work. He said:
“Nobody is going to confuse Ramsay’s disease with Ramsay Hunt syndrome – I think the neurologist was being obsessive. Nobody ever called RHS ‘Ramsay’s’ without the Hunt and nobody uses the term now anyway. Ramsay’s disease is fine.”
If doctors here (USA) think like doctors over there (UK) with regards to naming protocols, we could be just fine leaving it as is – Ramsay’s Disease.
IOM put out a surprise
Caused many a widening of eyes
A complete change of focus
Out with hocus pocus!
For the reverse of SEID is DIES
Ha ha that’s excellent! Reminds me of what someone (?) once said about this disease “it’s not a death sentence, it’s a life sentence!”
A new blog discussing background on various names that recently have been proposed as alternatives to the name “ME/CFS.”
http://paradigmchange.me/wp/proposed-names/
Thanks Lisa
I along with most of us do want a name change. But since the most important factor in the name is whether or not it’s associated with an illness, condition, etc. that has diagnostic credibility. And doesn’t invite sarcasm (as CFS does) or lots of convoluted explanations by the patient (as CFIDS does) or has no solid medical literature that explains it (as ME has).
I don’t think we should at all be bothered with finding a name right now. It’s a waste of time and energy to parce the individual terms used in SEIDS. It conjurs up nothing but “huh.”
Right now what the IOM says it’s doing needs to be done with careful documentation that’s available for the review of physicians, patients, etc. Probably though this should be available to everyone who wants to read it we should name a review committee whose composition is the subject for another comment. It’s great and necessary in order to conform to the best scientific practice to have all the literature from the 1950s on and develop a way to index it so that the different trends are shown and trends that might sound different but are really very similar are revealed. Including patients comments which IOM said they did should be a part of this.
We then would have before us an organized though complex, many faceted approach to understanding the symptoms that predominate and the causal and maintenance models for which some good research has been put forward and whose methodology and capacity to reflect what patients report suffering and lab tests report as abnormal results. (Is that a sentence–but it names what must be included in order for us to feel that there is a pathology or set of pathologies that are sufficiently similar to be treated as one illness or one illness with several subgroups.
As for name, when I was awarded SSDI, my lawyer and I put together a package where the predominant literature was that published by Ramsay, Dowsett, and others. (CFS hadn’t yet been conjured up at the time.) I was awarded SSDI. But since then I’ve been forced to use CFS, with some doctors only wanting to use fibromyalgia, which has somehow come to have more acceptance in my part of the world (Northeastern U.S.). That bothers me but I keep pushing ME and some accept it; some don’t.
Let’s forget about name changing until there is a body of information and clinical practice (we have to first see if ordinary docs can use the new diagnostic guidelines to diagnose us properly). Then, a name will become obvious.
But having to choose among 5 or 6 names when most don’t work or move things forward, was frustrating. But equally as frustrating was to have the IOM whose experience and involvement in this illness, however intelligent and wise they may be, present what they were charged with when we (or at least I) don’t know why they were chosen by the top agencies in the health bureaucracy.
SEIDs describes what I have. Why waste energy and resources on debating the name change!!! The IOM make it clear more research will less to refinement and maybe a better new name… In the meantime lets use the recommendations of the IOM to push for research, funding, treatments ….the problem is the lack of big studies the lack of research not the name!!!
The exertion thing is like the fatigue thing: it’s another bucket for dismissive people who think we’re lazy and neurotic to throw us into. The real, and very painful, physiological symptom is encephalitis, so I think that that must be in the name.
When Dr.Carruthers diagnosed me with this ‘THING’ 27 years ago, he called it ‘ME’ and not ‘CFS’, so I have always called it ‘ME’. The name ‘CFS’ has always troubled me as, being considered ‘merely’ a ‘syndrome’, the term somehow equates with ‘its all in your head’. Even by many doctors.
Is been a disconcerting experience over the years to have an illness that I deal with every minute of my life, have spent thousands of dollars on trying to rid myself of, have studied the literature on and kept current on the research of…to have some doctor ‘explain’ to me what a ‘syndrome’ is.
With so many diverse symptoms and ways of manifesting, perhaps it is unrealistic to expect that any name would adequately encompass the complexity of this malady. The term ‘ME’ may not be an acutely accurate or highly descriptive name for this- it may, indeed, be rather vague. But I don’t think that is, necessarily, a bad thing. At least it gives us the opportunity to explain what it is without having to overcome an existing preconception in the way that ‘CFS’ does. And it is becoming more familiar to people. I would argue that the proposed name change would set us back, and be confusing. It would again give the public a biased and over-simplified idea of how ME affects the lives of those afflicted with it.
Let’s keep ME. We could even add ‘disease’ to it:
Myalgic Encephalomyelitis Disease= MED
This new name is really not new. Exertion intolerance is very close to fatigue. At least CFS has the word “chronic” in it, and a syndrome is a collection of signs and symptoms, not all of which have to be present to define the disease. I personally like CFS/ME. However, if I end up using the new name, it will still be the same disease.
When I took my first neuroscience course in the 80’s, I learned that Multiple Sclerosis was a disease of young, rich females–I was actually taught that in graduate school. Now, I doubt many think of it that way, and there was no name change. As doctors, it behooves each and every one of us to not jump to conclusions, overgeneralize and go with the first impression that comes to mind. Confirmatory bias is deadly in medicine and psychology. There is a good amount of research now to show that CFS/ME (or whatever it is), is not a psychosomatic disorder. It is not the “worried well,” or hypochondriasis. Our patients vote with their feet by walking out our doors, not getting the help they need. This needs to stop.
As a profession, we should continue turning out high quality research which I believe will eventually play the most prominent role in changing attitudes and beliefs about CFS/ME. We have to listen to our top researchers. And, most of all, we need to do what I was taught to do in graduate school; that is, investigate the person’s symptoms and complaints scientifically and hold personal prejudice in abeyance.
Dr Zinn, if only all doctors were like you! So many pride themselves on diagnosing and treating according to scientific principles and objectivity – but when they’re confronted with someone who doesn’t fit neatly into a box of pre-defined symptoms, whose tests come back ‘normal’, or who ‘looks healthy’, the patient is often dismissed as exaggerating, attention-seeking or depressed -when in reality, nothing could be further from the truth.
Re: the new proposed name, I’d strongly prefer the inclusion of the one part of the body/brain that many ME/CFS researchers and doctors now recognise is at the root of the condition: the hypothalamus. With its ‘overseeing’ role spanning our sleep/wake cycle, immunity, hormone production, autonomic system and mitochondrial function, a hypothalamus that is stuck in ‘survival mode’ for years after a major illness/injury/vaccination/medication/other stressors must surely warrant further attention and recognition. I’d like to see ME/CFS renamed Hypothalmic Dysfunction Disorder (HYDD). Let’s call it for what it is – an all-encompassing condition with hypothalmic dysfunction at its root, instead of picking out one or two major symptoms and trying to shape a name around that.
Very poor choices in the survey… New Name means New thinking and coming up with a New concept. Naming after any symptom or aspect of this disease is not working. Naming it after an important person related to it such as Ramsey or Nightingale… something that leaves room to figure out what’s going on and not have to change the name again with every new medical research insight. Last names tend to be respected even if not understood. Disease in the name is much more appropriate than Syndrome. (Plague would work too… but best not to make them run screaming.)
What’s in a Name?
I became ill four decades ago when there was NO NAME for this illness and more seriously not even a concept in the field of Infectious Disease that a new uncharted disease could be an option. Note that this was before the establishment of an AIDS diagnosis.
It took a long time to even get the CFS title which grossly misrepresents and trivializes the illness. Typical response by any medical intake worker: Oh, chronic fatigue syndrome, I’m tired a lot–I must have that too.”
For a while we informally had CFIDS which wasn’t that inappropriate, especially the “immune dysfunction” part of the acronym.
However, very few clinicians used it and it never became publicly accepted.
It is only recently that ME/CFS has started to be used by the main organizations working with the disease. While the “myalgic encephalomyelitis”
got peoples’ attention and lent a certain seriousness to the disease,
hardly anyone can either pronounce or spell it.
That meant that all that got heard or remembered was the standard CFS.
And we all well know the limitations of the newly proposed SEID title!
Systemic Exertion Intolerance Disease–sounds like what one would observe in the halls of the average nursing home.
Just unwilling to accept that patients have waited this many years
for another condescending, trivializing title.
We need to rise up and let our voices be heard!
What about suggestions for an acronym
for a new patient advocacy group
to protest the SEID label?
One idea would be to call it POUND–
Patients (or People)
Opposing
Unsuitably
Named
Disease
By definition we are not a group that could march on Washington
but we could lay down in protest at a relevant government site–
Cort, if we would like to thank the members of the IOM committee for their hard work and dedication, do you know how we might get in touch with them? It must take a great deal of commitment for these clinicians and researchers to continue working in such a challenging and underfunded field. I think it is important for members of the patient community to express our gratitude.
ARRGHH!!!! I would like to vote on this issue but the ink is not allowing me to do so.
Any ideas?
Cort, in my mother tongue, Afrikaans, SEID simply doesn’t work at all! The translation sounds horrendous…like nothing more than a fancy name for being lazy. Will definitely not get my vote. Ramsay’s Disease would be wonderful! Thanks for all you do here!
I think one should name diseases after the patophysiology rather than symptoms. If I had chosen a new name then it would be along “NEUROIMMUNE VASCULAR MITOCHONDRIAL DISEASE”. Use of names of persons or geographic locations is advised against.
I think it is important to stick to Myalgic Encephalomyelitis (ME) because changing the name of established entities is the worst thing to do, because it will cause confusion at many levels. Most people will not be aware of the fact that the name has been changed, and will think of it as a new (highly unknown) condition. One will lose the link with earlier research, documents, information, etc. If names are changed back and forth, then people will not find relevant data if they do not know older versions of the name, or if they forget to search on all versions of the name at the same time.
Right now I perform searches on PubMed with the following in the search field:
(“chronic fatigue syndrome”[Title] OR “myalgic encephalomyelitis”[Title])
adding a third term, would make the search exuberantly complicated. Remember that I am probably an exception. Most people will only search on one term, and that way important results would not turn up in their search.
There is of a halflife of 45 years of medical “truths” that are false (Poynard T, Munteanu M, Ratziu V, et al. Truth survival in clinical research: an evidence-based requiem? Ann Intern Med. 2002;136:888-95.). Introducing a new term in this environment would have a very long time ahead before it penetrates the clinical medical care.
I am open to that in the future new scientific discoveries of the patophysiology and aetiology will lead subgroups. When knowledge have advanced so far, then it will probably be straight forward to name the subgroups based upon the identified aetiology. Until then I think it is too early to think about changing the name.
Thank you Cort, for being a voice of reason. I think the new name is great, if patients looked up the MEDICAL definitions of what each word means to doctors, perhaps they wouldn’t be so upset or scared about the new name. I think it’s also important to point out that physicians and researchers like Klimas, Bateman, Davis (who’s son is severely ill with CFS/ME) and others who have been advocates and supporters for us were sincerely looking out for the patients best interests when they came up with this name. For the 21 years I’ve been severely ill, every patient I have known has been upset with the silly name of CFS, we finally got what we asked for, a better name and one that communicate to physicians the severity of the illness. Let’s be an educated and proactive community, let’s focus on getting more funding and making sure we show ourselves in a intelligent and sane manner.
I have seen discussions about whether ME or CFS is on the ICD-list or not. Here is a snaphost of what turns up on the WHO site when one searches for G93.3 in ICD-10 version 2010:
http://me-foreningen.se/images/icd-10-g93_3.png
For example the following turn up:
Akureyri’s disease
Icland disease
Benign Myalgic encephalomyelitis
Neuromyasthenia (epidemic) (postinfectious)
Chronic fatigue syndrome
Postviral fatigue syndrome
I really think we do not need any more names for this disease. The names that already exist I think must be enough to satisfy all kinds of tastes.
My favorite choice is Neuroendocrineimmune Disease, but it appears to be representative of numerous diseases/syndromes, so I prefer ME if it’s going to increase funding for research. Although, Post-Exertional Neuroendrocineimmune Disease aka “PEND” sums it up. Seems any actual progress is PENDing 😉
My favorite choice is Neuroendocrineimmune Disease, but it appears to be representative of numerous diseases/syndromes, so I prefer ME if it’s going to increase funding for research. Although, Post-Exertional Neuroendrocineimmune Disease aka “PEND” sums it up. Seems any actual progress is PENDing!
Although all names cover my illness I feel comfortable with NDS, especially since my Pituary hormones are like non existent. All ready have diagnose of PTSD. Along with chronic EBV, I feel like it all started with my hormones and in the brain area, like blood flow, Amalgia, excess pain, never mind other things like chronic low vitamin D, high Iron, once your diagnosed the list goes on and on, So it is also a reactive disease, yup NDS gets my vote, Rita