+100%-
+100%-

About 4500 people saw the survey and about 550 took it. The survey consisted of a ranking mechanism that allowed the participants to rank their favorite names from first to last. The survey tool from Gravity Forms  then produced an aggregate score.

Fotolia_43008138_XSSurvey Round I

ME was the clear winner with Ramsey’s Disease and ME/CFS  in the next tier and CFS and SEID in the last one.

  • Myalgic Encephalomyelitis (ME) – 2564  (26% of total points)
  • Ramsay’s Disease  – 1942 (20%)
  • Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – 1932 (20%)
  • Chronic Fatigue Syndrome (CFS) – 1720 (17%)
  • Systemic Exertion Intolerance Disease – 1713 (17%)

Survey Round II

Neuroendocrineimmune Disease was added to the list after the first day and proved to be about as popular as ME. Perhaps because of information added to the blog suggesting that the World Health Organization (WHO) does not support naming diseases after individuals, Ramsey’s Disease plummeted in rank.  It was not much more popular than SEID or CFS in the second round of the survey.

  • Myalgic Encephalomyelitis (ME)  – 789
  • Neuroendocrineimmune Disease – 725
  • Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome  – 592
  • Ramsay’s Disease – 531
  • Chronic Fatigue Syndrome (CFS) – 515
  • Systemic Exertion Intolerance Disease –  481

Discussion

SEID

SEID came in last in both survey sections and was essentially tied with CFS in popularity.  An earlier poll indicated that many believed it would help out in the doctors office but it’s pretty high “cringe” factor clearly played a role. The comments suggested that many worried it would be misinterpreted and that it lacked the weight needed to describe this illness.

Myalgic Encephalomyelitis

Myalgic encephalomyelitis (ME) and neuroendocrineimmune disease( NEID) are clearly preferred by the patient community.

ME’s strong points include it’s long history with this disorder, its scientific, weighty sounding name, it’s widespread use in the UK and Europe, and its embrace by the patient community.

balance

How much the DHHS weighs historical factors and patient desires will probably make the difference for ME

It’s main weak point is that it describes a condition – inflammation of the brain and spinal cord – that is not, at this point, known to  be present in ME/CFS. While names that are not good descriptors of a condition abound in medicine, they were generally produced long before a disease was understood. It’s not clear in this day and age that an medically inaccurate name is viable. On the other hand there is historical precedence  for ME. Would that trump it’s lack of medical accuracy?  Only the DHHS knows.

Jason’s finding that medical students are more inclined to take a disease with a scientific sounding name seriously suggests your experience in the doctors office could be improved with ME.

With regards to research funding there’s no indication that having a scientific sounding makes a difference. “ME” has been commonly used in that bastion of federally funded behavioral research – the UK – while “chronic fatigue  syndrome” has held sway in the U.S. – which has mostly funded pathophysiological research.

In scientific circles that prize accuracy over all, it’s possible that calling ME/CFS a name that doesn’t reflect research findings could lessen its legitimacy.

Neuroendocrineimmune Disease

Neuroendocrineimmune Disease turned out to be about as popular as ME. It does describe many of the findings in this disorder, and it refers to research findings rather than symptoms – something which is clearly important to many patients.  It’s main minus is that it’s vagueness allows it to fit many disorders. As such it might run into some of the same reaction in scientific circles as ME may.

The Decision

We should note  that a name change is not mandatory. The name could stay the same.

There’s no process at this point to introduce another name to the DHHS. Doing that would presumably require a round of federally approved surveys and meetings that were designed to bring researchers, doctors and patients together to hash this subject out.

SEID – the name proposed by the IOM panel – is clearly not a crowd favorite. It ranked about the same as CFS. If the IOM report reflects the desires of the research/physician community it appears that it and the patient community are far apart on the name they wish for ME/CFS.

Unless the DHHS leans heavily on historical factors and patients wishes, my guess is that the DHHS would not, in this day and age, go with ME.  I’m also guessing that NEID is simply too vague for the researchers populating the DHHS to agree to as well.

choices

Those are just guesses but if they’re true  that would leave the DHHS with the choice of formally accepting the name as it is (ME/CFS) or going with SEID.  The advantage of ME/CFS is that it does bring ME into the equation in perhaps the only way the scientific community may allow it to be brought – as a historical factor. The disadvantage is that CFS is still in there, the name is really long and difficult to explain and it’s basically confusing.

SEID does accurately describe the core symptom in this disorder, and would surely help doctors and others understand the disorder better, but it’s not well-liked by a patient community that is very wary of another symptom-based name that may be misinterpreted.

The  backing from the IOM committee could be determinative with regards to SEID, but bucking public opinion is not something the feds do very well either.

It’s possible they’ll simply punt – leaving the name as it is – until research reveals a better name.

Time will tell.

Another Survey

Paradigmchange and ME Advocacy have produced a larger survey  on the proposed name. It’s biased against the proposed name and the naming process.

There is a page, for instance, where participants can list the negative aspects of the proposed name, but there’s no page for participants to chart their positive responses to it. Likewise, there is only room to register negative reactions to the naming process.

The survey does provide a wide variety of options to describe your response to the proposed name, however, and should help us understand just what it is about the new name that is most off-putting.

Find out more about the survey here.

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