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SURVEY RESULTS: What Name Would YOU Choose for CFS?

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!” [1]

You can see the results of the survey HERE [2].

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:

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.