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SURVEY RESULTS: What Name Would YOU Choose for CFS?

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In September 2013, the IOM was contracted by HHS to devise a new definition for chronic fatigue syndrome (CFS), the current CDC definition being considered too broad. It was also charged with providing a new name at its discretion. The IOM made its recommendations on Tuesday, February 10, 2015 in a report entitled, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” One of the recommendations of the report was to eliminate CFS and to replace it, as well as myalgic encephalomyelitis, with “systemic exertion intolerance disease” (SEID).

On February 26, 2015, ProHealth conducted a survey on the proposed new name for ME/CFS: “What name would YOU choose for CFS? Take the poll!”

You can see the results of the survey HERE.

The survey consisted of three questions:

  1. Do you have CFS or ME?
  2. Do you think CFS should be replaced by a new name?
  3. Please choose which name you would prefer.

(Respondents were given a choice of myalgic encephalomyelitis, ME/CFS, Nightingale’s Disease, Ramsay’s Disease, SEID, Cheney Peterson Disease, Incline Village Disease, and No Preference. In addition, respondents could make suggestions for additional names, and make comments.)

A total of 3059 people filled out the survey, making it the largest survey to date on the proposed name change. Of those, 2690 respondents reported having either ME or CFS. Of those who did not have either diagnosis, most had a family member with the disease, or had been diagnosed with FM, as this was the condition most frequently mentioned in the comments.

The majority of respondents (75%) thought that CFS needed to be replaced. The reasons given were primarily that the name was trivializing, and did not capture the scope or seriousness of the illness. The 25% of respondents who did not agree that a new name was needed gave familiarity, ease of pronunciation, and accuracy as reasons to keep CFS.

The name which garnered the most support was myalgic encephalomyelitis (781 votes). The reasons given were historical continuity, accuracy, and medical weight. SEID got 309 votes. The reasons given were accuracy, and inevitability (“It’s too late now to do anything about it.”) 179 people wanted to keep the current name ME/CFS for reasons of accuracy and continuity. Aside from Ramsay’s Disease, the remaining names garnered very few votes. Those who commented on the choice of the remaining names mentioned that they did not know who Cheney or Peterson were (or Ramsay) and that they had no awareness of the significance of Incline Village or how Nightingale might be associated with the illness.

Comments from Respondents

Respondents had a great deal to say about the name change. The survey garnered 146 pages of additional comments, the majority of which were critical of both CFS and SEID as appropriate names for the disease. Some of the critical comments of the proposed name SEID are as follows:

“People are going to make jokes about the name systemic exertion intolerance disease.”

“NOT SEID, which is an even worse name than CFS.” (7 people made a similar statement.)

“Not SEID. Too much negative stigma.” (31 people made a similar statement.)

“Until they are able to specify exactly what disease people are suffering from, it would be prudent to stick with ME which most people are familiar with.” (12 people made a similar statement.)

“CFS is an appalling name, as is SEID. It is associated with being lazy and nothing could be more untrue. Stick with ME – we all know what this is and can easily identify with the name.” (13 people made a similar statement.)

“I would have great difficulty in remembering what it is that SEID actually stands for. It is so much more than “exercise intolerance.”

“I suffer from severe pain all over my body (and this is not as a result of “exercise”.” (7 people made a similar statement.)

“I don’t like the Exertion Intolerance. I think it continues the trivialization of this terrible illness.” (13 people made a similar statement.)

“Exertion intolerance” sounds like people with SEID just don’t want to exercise.” (37 people made a similar statement.)

“It still points to a symptom, doesn’t capture the broader impact.” (14 people made a similar statement.)

“Changing the name to SEID is just going cause more confusion.” (37 people made a similar statement.)

“Systemic Exertion Intolerance Disease (SEID) sounds like a rubbish name to me. It does not sound as if it relates to the total exhaustion, massive joint instability, massive gut problems, massive migraines and vomiting, massive whole body disturbances. It is altogether too polite and meaningless.”

“Intolerance” in the SEID name is worse than “fatigue” as most people have “intolerances.” This word cannot be taken seriously.”

“SEID sounds like we’re lazy. It’s an awful name.” (16 people made a similar statement.)

“Exertion intolerance runs risk of being dismissed as work shy or lazy.”

“SEID is a poor choice. ANY of the above would be preferable.”

“Sounds like we’re allergic to exercise or would be perfectly well if we handled stress better.”

“SEID is arguably worse than Fukuda (apart from getting rid of the name, CFS), as it leaves out viral symptoms like swollen or tender lymph glands and viral and muscle (peripheral) symptoms. No mention of acute viral onset either. Moving further away from ME and even getting rid of Lake Tahoe type outbreaks, which was additional evidence. I’m concerned that SEID could replace ME. This is yet more political (and insurance industry) interference and attempt to put away links to the original entity.” (9 people made a similar statement.)

“SEID is just ridiculous. Everyone gets SEID after a jog!”

“The new name seemed to come randomly out of nowhere. And like the earlier names, it doesn’t encapsulate the entire experience of this illness. If they can’t do that, then just stick with the names people know. All this name effort might be better invested in understanding the disease and needed treatments.”

“SEID is worse. Way too confusing.” (19 people made a similar comment.)

“My fatigue is NOT just with exertion. I suspect my fatigue is correlated to methylation glitches.”

“ME isn’t great but at least it sounds serious, and is what the rest of the world calls the disease. The new name is so awkward, no one will ever use it – CFS will continue to be what the disease will be called.”

“I question and suspect Insurance Companies not wanting to cover medical bills as well as disability claims are trying to make the Syndromes even more confusing with less credibility.”

Several people made the comment that: “It is a mistake to change the name prior to acquiring enough hard data on its pathophysiology through validated studies.”

Other name suggestions were:

  • Myalgic Encephalopathy (20)
  • Neuroendocrineimmune Disease (or Dysfunction) (10)
  • Ramsay-Gilliam’s Disease (5) Dr. Alexander Gilliam investigated the Los Angeles County outbreak of what he called “atypical polio” in 1935. Dr. Melvin Ramsay investigated the Royal Free outbreak of myalgic encephalomyelitis in 1955.
  • Hillenbrand’s Disease
  • Get no treatment disease
  • The Disease From Hell
  • CISCAD : Chronic Immune System Chaos Disease
  • The $#!@

It is very clear from the 167 pages of comments that patients with this illness have strong concerns, not just about the name change, but about the lack of funding, the lack of recognition, and the lack of patient care. Regardless of the suitability, or unsuitability, of SEID, the problems people with ME/CFS encounter in the medical world are profound, and  cannot be fixed with a simple change of name.

Copies of this report as well as full results of the survey were sent to the IOM, HHS Secretary Burwell, and ORWH Deputy Director Susan Maier.

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13 thoughts on “SURVEY RESULTS: What Name Would YOU Choose for CFS?”

  1. elusoria says:

    It seems clear that new name is unpopular with patients. This article has valuable and interesting information about why patients are so dissatisfied with it. At the top of my list is that it gives the impression that patients aren’t sick when they don’t exert. I feel terrible with or without exertion. This name will give doctors the wrong impression about patients with ME/CFS.

    Great that thousands of people responded to this poll. A big thanks to ProHealth. The question is what happens now and will patients get a bigger say? Or will decisions about us keep being made without us?

    I would love to see a poll on the new IOM criteria. They do not cover many of my most disabling symptoms. Since the criteria have the power to determine which patients get diagnosed and which do not, they are more worrisome. Other potential effects of the criteria are determining who gets disability and who doesn’t, who gets treatment for their symptoms and who doesn’t or even categorizing people who were previously diagnosed with ME/CFS as not having this illness anymore (all those people with pain and neurological symptoms).

  2. klowee says:

    the name change to chronic systemic neurological immune disease. CSNID THATS MY I DEA!

  3. klowee says:

    the name change to chronic systemic neurological immune disease. CSNID THATS MY I DEA!

  4. grannycfs says:

    For the most part I consider ME/CFS to be the same disease. I would be happy with either MEitis or MEopathy so that we have some consistency after all these years. Patients and many in the medical field are familiar with these terms. I’ve had ME for over 30 years and generally can pick out people quite easily who have this disease as well.

    I feel that because we will not know anything for sure until the government coughs up more research $$$,$$$,$$$ for our disease, researchers will have little knowledge and facts in order to give this disease a proper name. In the meantime, ME can mean either itis or opathy. No muss no fuss.

  5. MikeCP says:

    Having made a booklet for anamnestic questioning and systematic treatment of fibromyalgia and other chronic processes I would like to view all these entities as symptoms rather than diseases, symptom of a chronic failure in biochemical pathways. Reasons for these failures can be manyfold, from bacteria to viruses, from poisons to hormonal discrepancies, from combined deficiencies of vitamins and trace elements, including essential amino- and fatty acids, and even dysbalanced gut bacteria or invasion of fungi can be at the origin of chronic fatigue and painfulness.
    It is up to us to find in each case the individual problems from the daily food intake to the blocked enzymes, from malfunctioning hormones to the entire immune system, from accidental to generalized poison intake.
    The booklet by Mikael Präg “How to systematically treat and beat Fibromyalgia” only gives the starting point and the first direction, but following its hints and ideas should lead to the possible solutions of most of the complex cases, for complex they are, but still variations of the same theme: the body isn’t capable any more to properly repair and heal itself.
    MikeCP

  6. DavidNowlan says:

    For health just start juicing it will fill the body with everything you need, I did and I am cured.

    1. slumbersome says:

      I think some people have been very harsh on David with his comment about juicing, I like hearing about what others have found that works for them. It may not work for some, but it may very well work for others. Please allow people to express themselves and respect their right to do so. I am happy to read David that you have found something that works for you. I was juicing but found it a little too much to do with my condition, but when I improve I am definitely getting back into it.

  7. 555bj says:

    CURSE (perhaps for: Chronic Unknown Revolting Suffering Everlasting)

    I do not have it myself (I have something else equally horrible).

    I had six friends who either died or killed themselves with this illness. It IS a curse and should be acknowledged as such.

  8. polycarpuk says:

    Why not just use the Canadian criteria. It is way better as a diagnostic tool, and for identifying symptoms that can be alleviated with medication. It blows the CDC and Oxford criteria clean out the water, let alone this new ‘criteria’. It also differentiates clearly illnesses such as Post Viral Fatigue Syndrome from ME.

    ME is the WHO name, and although the US recently has been determined to operate with complete disregard for WHO and the rest of the world, for instance in the DSM 5 psychiatric diagnosis changes, which invented new psychiatric conditions with little or no research backing, a new name and criteria which almost completely ignores the vast amount of research about ME going on outside the USA will in the not so distant future bite the US authorities in the ass.

    Use ME, or at a pinch CFS/ME, until the research gives a clear reason otherwise. A name that implies that a psychiatric treatment may be appropriate is completely unacceptable.

  9. ppmickey says:

    Well I’m not surprised that the name SEID has not been well received. I’m sure the person who thought it up was hoping that it would be understandable, but it backfired. I still don’t think SEID will stand up to insurance companies any better than CFS alone does. Calling it ME would be a better start. System intolerance sounds like an excuse for not doing things like work, going shopping, getting together with friends. Hillebrand Disease was a good name, but only focuses on what an accomplished author was able to do who is mostly bed-ridden, which many of us aren’t. We “appear normal looking” to must of the people we run into and they can’t seem to understand the daunting tasks of shaving, getting a shower taken, washing your hair, drying it, putting on anti-persperant, and getting dressed is so hard that it’s more exhausting than doing exercise can be.

    ME could be paired with Chronic Immune Dysfunction with Physical and Neurological Impairment Disease. It is a disease that attacks on all fronts. ME/CIDPNID or even CIDPNDIf The letter sequence is long, but it doesn’t sound as wimpy as SEIDS.

  10. ppmickey says:

    If juicing cured you, then you never had the disease in the first place, were misdiagnosed or are in a longer remission than is usual for most patients with CFS. Don’t you think others have tried juicing? Your comment is very insulting to those of us that have suffered with this condition for 2 to 20 or more years.

  11. ppmickey says:

    Chronic Immune Dysfunction with Pain, Physical and Neurological Impairment Disease.
    CIDPPNID

  12. jeansucec says:

    I sit here reading these alternative choices and it makes the hair on back of my head stand up! Are you people trying to set us back even further in our diagnosis and treatments with these empty useless names?

    WHile for sure the endocrine systems is hit hard with these illness, some harder than others, the myriad of profound symptoms and degree’s within each sub-set group matches none of what you are proposing. Again, goes back to be similar to calling Polio, the leg limp illness, or cancer, the bad flu day disease..OMG are you kidding me!

    Leave well enough alone. Leave it as ME/CFS. We’ve been poorly branded long enough inappropriately and where has it gotten us….NO where still today. No help, no further diagnosis (just a bunch a money spent on research coming up with theories that mean nothing ), and no treatments still 30 years later.

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