Survey Results (Part 2): Moving Forward with Choosing the Right Name

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March 17, 2015

By Lisa Petrison, Ph.D.

Part 1 of this blog series provided some basic information on the findings of a recent community survey looking at opinions related to the idea of adopting a proposed new name (Systemic Exertion Intolerance Disease or SEID) to replace the name ME/CFS.

This is Part 2 in the series, providing a discussion of survey implications to be considered when moving forward with choosing a name.

This discussion is also presented in Part 2 of the full survey report.

 

DOWNLOAD THE FULL SURVEY REPORT HERE

 

A recap from Part 1 of this blog series:

A large majority of survey respondents expressed negative attitudes about the proposed name, about the naming process involving the IOM committee, and about the prospect of the government adopting the proposed name.

Objections to the proposed name were varied, with many centering on the idea that it makes the disease seem more one-dimensional and less problematic than it actually is.

Concerns that the name would result in the disease being believed to be caused by something other than a physiological disease process (such as laziness, fatigue, deconditioning or psychological problems) also were very high.

A majority of participants stated that the name is unsuitable with regard to the meeting the needs of severe patients.

Negative feelings about the proposed name were particularly high among those participants who said they had ME (especially U.S. participants who said they had ME).

The small number of clinicians participating in the survey also were especially negative about the proposed name.

A minority of participants were supportive of the naming process as well as the proposed name. Many of these individuals expressed gratitude for the efforts of the IOM committee members as well as the hope that the adoption of the recommendations in the report would lead to more widespread awareness and acceptance of the condition as a serious disease.

However, even among those stating this position, relatively few people expressed much enthusiasm for the name. Many of their comments instead suggested that the proposed name was merely an improvement over CFS or that it would be an “acceptable placeholder” until a later point in time when it could be replaced with a different name.

 

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One argument of individuals supporting the proposed name was that it would lead clinicians to have a better understanding of the disease and to take the disease more seriously.

These supporters made the argument that even though some patients were unenthusiastic about the name, it would be well-received by clinicians.

Although the sample size of self-identified clinicians participating in the survey was small (N = 32), those individuals were more likely to say that the name was bad than were survey respondents in general.

These clinicians also were more likely than respondents in general to say that the name sounded like fatigue, laziness or deconditioning; that it sounded like it could refer to a psychological condition; and that it sounded bogus rather than scientific.

In order to gain more insight into this topic, the responses of clinicians treating patients (physicians, physician assistants, nurse practitioners and dentists) were pulled from the comments section of a Medscape article discussing the IOM report and the proposed name. (See Part 25 of the report.)

Almost all of the 18 clinicians who mentioned the proposed name change in their responses to the article suggested that it was a marketing decision designed to make the condition seem more serious than it actually was. None gave any indication that the name change would prompt them to take the illness more seriously or to think any differently about it.

Of course, these very small clinician samples may not be representative of the entire population of clinicians. However, this initial analysis provides no evidence that clinicians would respond more positively to the proposed name than patients have, nor does it support the contention that the adoption of the name would result in clinicians taking the disease more seriously.

 

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Many participants mentioned the need for quality biomedical research into the disease as affecting their opinion about what name should be used.

Some respondents referred to the need for research to justify their contention that the proposed name should be adopted. They expressed concern that if objections to the name are raised, this might make it more likely that the overall IOM report will not be accepted and therefore that research progress will be less likely to ensue.

A second group of respondents argued that promoting research is much more important than changing the name and that a name change has the potential of distracting from research. They argued that it would be best to leave the name wholly alone for the time being, rather than changing it to SEID or anything else.

A third group stated the position that the IOM definition is not specific enough to be used for research purposes and that, if adopted, it would lead to research that would fail to find important abnormalities. These people argued that a narrower definition needs to be adopted for research purposes – either instead of the IOM’s proposed definition, as a research definition to sit alongside IOM’s clinical definition, to point to a specific subgroup of patients with more severe illness, or as a new U.S. disease category totally separate from the established broader category. A narrower definition would appropriately have the name ME (or possibly Ramsay’s Disease) associated with it, many of these people suggested.

 

 

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Analysis of the quantitative survey data as well as of the open-ended comments suggests that a high percentage of survey respondents (possibly at least half of all participants) consider ME to be not just an alternative name for what the government has historically called chronic fatigue syndrome, but rather an established disease category of its own.

Many of these individuals pointed to the history and research literature of ME, to the recognition of ME as a neurological disease separate from CFS by the World Health Organization (WHO), and to ME consensus criteria definitions as support for the idea that ME should be considered to be a wholly established disease of its own.

A number of comments referred to continued frustration or anger over the fact that the U.S. government created a new disease category (chronic fatigue syndrome) in 1988, rather than recognizing ME (which at the time had been the subject of more than a hundred papers in medical journals and already was recognized by WHO).

This 1988 CDC committee decision is widely viewed among many patients and advocates as, at best, an imperialistic U.S. adventure in which knowledge generated in other countries was blithely discarded. Many see this decision as having been a purposeful obfuscation in which the government intentionally hid an extremely serious disease by burying it under something trivial. These perspectives were evidenced in many of the survey comments, especially those mentioning ME or the Lake Tahoe epidemic.

Many survey comments stated or implied that the IOM’s recommendation of a new name and a broader definition than has been previously used for ME was a continuation of U.S. government policy negligent in recognizing ME.

Despite the fact that the U.S. government thus far has not officially recognized ME (only ME/CFS and CFS), nearly half of the U.S. patients participating in the survey stated that they had ME. Those people tended to be particularly negative about the name proposed by the IOM committee as well as about the naming process.

A little less than a quarter of all U.S. patients surveyed rejected both the ME/CFS and CFS diagnoses, stating that they had only ME. These people were the most negative of all about both the proposed name and the naming process.

Unfortunately, this survey did not collect information from participants on level of illness.

However, in general the term ME often is used to refer to more severely affected sufferers who have many serious symptoms in addition to post-exertional malaise. This is how the disease is described in the International Consensus Criteria (ICC), for example.

Patients in this survey who identified themselves as having ME were more likely to express the opinions that the name did not serve the needs of severe patients, that the name sounded like the disease has just one symptom, and that the use of the name would result in other abnormalities such as those of the brain being less studied.

In addition, patients who said they had ME were less likely to agree that the name makes it clear that any exertion can be damaging. This may be related to severity level as well, since severe patients can be harmed by even trivial levels of activity (such as venturing to the bathroom) that likely would not be inferred by most people first encountering the term “exertion intolerance.”

Many of the comments by those supporting the official recognition of ME made reference to patients who are extremely ill and expressed anger that the broad government definitions had resulted in these individuals’ needs being overlooked.

Participants supporting the recognition of the disease of ME by the U.S. government seem to be mostly in agreement that that disease should properly be called ME if and when that official recognition occurs.

However, many of these individuals expressed the strong belief that the name ME should never be used to refer to any broader condition, such as the one identified by the Fukuda criteria.

A number of individuals stated in their survey comments that it would be inappropriate to link the term ME to the proposed IOM definition. In addition, at least a dozen people approached the researcher personally to express this position during the development phase of the survey project.

On the other hand, many participants objected vigorously to the IOM report’s contention that ME is an inappropriate name in general for this sort of disease, due to its mentions of pain and brain inflammation.

Many comments pointed to recent research suggesting that brain inflammation actually does exist in this type of condition.

Other participants stated in their comments that they were convinced that their own brains were inflamed.

Some participants stated that pain is a critical and virtually universal characteristic of the illness, and criticized the IOM’s proposed definition for not mentioning pain.

Other comments presented the argument that regardless of whether the term myalgic encephalomyelitis is accurate from a technical point of view, it is the established name of an established disease and thus can or should be used to refer to that condition.

In general, the results of this survey do not suggest that the adoption of the recommendations in the IOM report will result in participants who consider themselves to have ME or who support the recognition of ME feeling in any way satisfied.

Many or most of these individuals appear to feel strongly that neither the proposed definition nor the proposed name will serve the needs of severe patients with a wider variety of symptoms (e.g. those patients who qualify for an ICC ME diagnosis).

In addition, the high level of negative emotion expressed by many of these individuals in their comments – as well as the strong level of agreement by ME patients on the survey question about feeling angry about the naming process – suggests that these people may be unlikely to let the matter drop any time soon.

Two fairly new community advocacy groups – ME Action Network and ME Advocacy – have stepped up their activities supporting the ME concept since the IOM report was released, for instance.

 

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Another group of individuals (including a number of prominent ME/CFS advocates) expressed the opinion both in the survey comments and elsewhere that government and societal acceptance of the IOM report’s recommendations has the potential of resulting in increased research, improved funding, better clinical care, and easier disability approval for those afflicted with this sort of disease.

Many of these individuals expressed the opinion that the community thus should do what it can to support the report.

Roughly 20% of survey participants seemed to be at least somewhat in agreement with this viewpoint.

A current conflict in the patient and advocacy community thus seems to be between those individuals favoring the unqualified support of the IOM report and those who believe that the report does not go far enough to be of any substantial benefit to more severely affected patients (e.g. those who have ME).

This conflict can be seen in survey comments as well as in other public comments by ME and ME/CFS advocates. (See Part 23 on Community Voices, for instance.)

Feelings about the proposed name and about name alternatives need to be considered in light of that broader conflict.

For instance, some people supporting the acceptance of the IOM report and proposed criteria favor the adoption of the proposed name to go along with that. Many of these people acknowledge openly that they do not think that the name is a particularly good one but argue that it should be adopted anyway, because they fear that if it is not accepted the rest of the report may be not be accepted either.

Others who in general are positive about the report and the criteria openly oppose the adoption of the proposed name.

Most people who are in opposition the adoption of the IOM criteria and who favor a more traditional ME definition seem generally to oppose the use of the name SEID regardless of what definition is used, because it does not in their opinion appropriately describe the condition experienced by severe patients.

Some of these individuals also oppose the idea of using ME to refer to the collection of patients defined by the IOM’s proposed criteria, since they believe that ME should only be associated with a traditional narrower definition.

 

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Some survey participants said that they liked the words “disease” and “systemic” in the proposed name. A few others said that the name summarized what their own illness experience has been like.

As mentioned, some people expressed support of this name as part of their overall support of the IOM report.

About half the respondents agreed that SEID would be a better name than CFS.

Others argued that CFS actually was better due to widespread existing recognition of it, to its historical association with the Tahoe epidemic, to the established medical research literature on it, or to its simplicity.

Despite the fact that some participants were favorable about the proposed name SEID, a large majority expressed the opinion that it was neither a good name nor a legitimate name for the disease.

Therefore, if the government chooses to adopt the name SEID, it likely should anticipate a high level of dissatisfaction about that decision from the patient and advocacy community.

The results of this survey as well as the results of other surveys (see Part 24 of the report) suggest that the name SEID likely would be no more accepted by the patient community than CFS has been, and that it likely would be much less accepted than ME/CFS has been.

In addition, as of yet there is no evidence that the name SEID will be helpful in terms of getting clinicians to take the disease more seriously or to understand what the disease is like. The analysis in this report actually hints that the contrary may be true.

If improving clinicians’ attitudes about the disease is a main goal of the proposed name change, then more research needs to be done to ensure that clinicians indeed will respond positively to the name prior to going forward with the change.

 

ME

The survey asked participants to choose their top three names for the disease, with the caveat that an acceptable definition would be adopted to go along with the name.

In addition, the instructions for this question specifically said that the goal of this exercise was not to choose a final name for the disease, but rather just to get a preliminary idea of what people were thinking in terms of names.

With those caveats in place, ME was the runaway favorite name in terms of both first-choice mentions and general mentions in this survey.

The popularity of this name can be accounted for by several factors.

Many people believe ME to be the “real” name of the core disease that is at the base of the government’s broad CFS category. These people point to WHO recognition as well as the more than a hundred papers published in the medical literature about ME prior to “CFS” being adopted in 1988 as evidence that ME is the real thing and that CFS is merely a simulacrum of that real thing.

The fact that the name is in Latin and that it sounds like a serious condition also is liked by many people.

On the other hand, at least some clinicians (such as some of those commenting on the Medscape article) strongly object to the term ME, saying that it is medically inaccurate and that it scares people who do not have anything noteworthy into thinking that they are truly sick.

Since people who qualify for established ME definitions such as the ICC actually are truly sick (some desperately so), the fact that the name sounds serious and scary could be viewed as a strong reason to put it into use.

However, it seems that the name would be much more effective at changing clinicians’ perceptions that this is not a very serious condition if stronger evidence showing that brain inflammation actually is present in these patients already were established in the literature.

Although there are some studies showing brain inflammation in the literature now, these are not perceived to be conclusive by many medical professionals.

Another problem is that many people who believe that ME is the “real” name of the disease are strongly opposed to the idea of ME being used to refer to the condition identified by the proposed IOM criteria. The name ME should be reserved for a more specific condition, these people stated.

Insofar as the IOM definition is adopted without changes, many ME advocates plan to continue to lobby for the adoption of ME (criteria and name) as a separate condition or as an official subgroup.

Other people suggested that ME would be the right name for the condition described by the IOM definition if – and only if – brain inflammation can be conclusively demonstrated to be present in at least some cases. People taking this position expressed the belief that more research needs to be done before the decision about whether to adopt or discard the name can be made.

All of this suggests that despite the very high level of popularity of the name ME in this community, changing the official name from ME/CFS to ME at this moment in time should not be automatically assumed to be the right decision.

On the other hand, the general popularity of the name ME means that taking steps that seem to be associated with the permanent rejection of the name – such as discarding the term ME/CFS and adopting a totally different name – may not be considered acceptable either.

 

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ME/CFS is a name that began being used by many advocates and professionals during the past decade. Some government agencies (HHS and NIH) have followed suit within the past 18 months.

To at least some extent, ME/CFS has all the drawbacks of both ME and CFS. In addition, it is longer than either when spelled out.

An even bigger issue is the lack of clarity with regard to exactly what is meant by the government’s new use of the term.

Some ME advocates have expressed objections or doubts about the term “ME/CFS” in general, stating concerns that the government’s use of it may suggest that ME is just another name for its broad CFS category.

Nonetheless, many patients and advocates seem to perceive ME/CFS to be a more acceptable term than CFS, and it now is in fairly wide usage.

The results of this survey suggest that most respondents (including those who say they have ME) prefer ME/CFS to either SEID or CFS.

Survey comments as well as more general comments suggest that people who support the U.S. acceptance of the disease of ME seem to be of two minds about the use of the term “ME/CFS.”

Insofar as this term is taken to suggest that ME is just another name for the condition that the government already recognizes (e.g. defined by the Fukuda criteria), many supporters of the ME concept state that they object strenuously to the use of ME/CFS.

On the other hand, if the term is instead taken to point to something like “the government’s broad entity of CFS, which includes patients with ME even though the government thus far has declined to look at these unfortunate individuals specifically,” many (though not all) supporters of the ME concept seem to feel that the use of this term is at least somewhat acceptable.

A number of respondents pointed out in their comments that the government has not officially adopted ME/CFS as the name of the disease and that it is unclear how the government is defining this term.

Other people suggested in their survey comments that they perceive ME/CFS to be a hybrid term or a transition term that is good enough for the present but likely eventually should be changed.

An additional cited problem with ME/CFS is that because it is not the official name of the disease, it is not currently being used consistently either by the government or by the news media.

For instance, just within the past month, one article about the IOM report in The New York Times used the term ME/CFS, while another article on the same topic in that same paper used the term CFS. HHS and NIH seem to mostly be using ME/CFS, but the CDC website still refers to CFS.

Insofar as ME/CFS is selected as the temporary or permanent name of the disease, the formal adoption and consistent use of it by the government may be an important consideration.

In addition, a statement by the government regarding exactly what it means by the term would be helpful in increasing clarity.

For instance, if the government were to state that the broad category of ME/CFS includes both the narrower category of ME that is recognized by WHO as well as additional individuals at a less severe level of illness, that might be helpful in conveying to patients and advocates that the government is not trying to stamp the established disease of ME out of existence or working to hide the fact that some people are extremely severely ill with the disease.

 

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This name alternative emerged as a contender during the past few weeks, in response to the IOM report’s mention that ME might not be an appropriate name due to the lack of solid proof in the medical literature about the presence of brain inflammation.

NEID gained popularity subsequent to the suggestion by some people in the community that naming the disease after a person might not be considered acceptable by the U.S. government and/or by WHO.

NEID was the second-most popular choice in both this survey and in the Health Rising survey.

This name mentions neurological as well as immune system problems, both of which are supported by the literature and are important to many patients. Hormonal abnormalities have been demonstrated in the literature as well.

One concern about this name is that it may not be perceived as specific enough to refer just to the entity that is now called ME/CFS. Certain other recognized diseases (such as autism and GWI) also include abnormalities in all these categories, for instance.

This name also does not cover all of the possibly most important abnormalities in this disease. It leaves out the circulatory abnormalities that are well-established in the literature, for instance. Mitochondrial abnormalities and cytokine abnormalities also are left out.

In addition, insofar as a descriptive name with more than two words is adopted, it may be more successful if it has an acronym that can be easily remembered and preferably that obviously spells a pronounceable word (for example, AIDS).

Although many survey participants listed NEID as one of their name choices, almost no one brought this name up in their other comments on the survey.

Participants were much more likely in their comments to discuss their belief that Ramsay’s Disease would be a good name, or to explain why they thought that the name should remain ME/CFS for the time being, or to elaborate on the need to call the disease ME.

In addition to NEID, survey participants suggested a wide variety of other names mentioning affected systems or abnormalities of the disease.

Most of these names incorporated just a few core concepts: brain, cognition or neurological problems; immunological problems; mitochondrial or energy-production problems; pain; inflammation; post-exertional malaise; and/or environmental toxicity. The words “systemic,” “multi-systemic” and “disease” often were used.

Conceivably, some of these concepts could be combined into a new name that is both appropriately descriptive of the illness and that has a good acronym.

On the other hand, many respondents suggested that it may simply be too early to decide on this kind of name and that waiting until research provides a more definite understanding of the etiology could eventually yield a much better name of this type.

 

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The possibility of using Ramsay’s Disease for this illness began being frequently discussed in this illness community a little more than a year ago, subsequent to it being proposed by Dr. Derek Enlander.

Ramsay’s Disease was the third-most popular choice in this survey overall, and the second-most popular choice among U.S. patients describing themselves as having ME.

Ramsay’s Disease also was frequently cited in the general survey comments as a good name alternative.

Melvin Ramsay was the physician who was most involved in studying the Royal Free Hospital outbreak in London in the 1950’s. Although Dr. Ramsay did not coin the term ME, he brought it into general usage and then studied the illness intensively over the next few decades.

Ramsay’s Disease therefore is a name that has the advantage of being specifically linked to ME, but that does not have the apparent problems that likely would be associated with adopting ME as the name at this moment in time.

For instance, a number of ME advocates stated that it might be acceptable to use Ramsay’s Disease to refer to the people identified by the criteria proposed by the IOM, since this would suggest that these people had something closely related to ME without diluting the more specific existing definitions of the term ME itself.

The use of Ramsay’s Disease also would skirt the issue of whether brain inflammation is present in the disease and would imply nothing about etiology. If this term were adopted as the name, it would be appropriate to continue using it regardless of what subsequent research revealed, many participants argued.

Some people said they strongly preferred Ramsay’s Disease to Myalgic Encephalomyelitis in general, because it is easier to remember, spell and say.

The biggest potential downside of Ramsay’s Disease seems to be the possibility that it might not be considered an acceptable name by the U.S. government or by WHO.

Diseases have usually been named after the first doctors who discovered them, rather than after the doctors who intensively studied them later on. In addition, the trend possibly seems to have moved away from naming diseases after people at all in recent years.

In addition, there is an existing condition involving herpes zoster called Ramsay Hunt Syndrome. The use of Ramsay’s Disease for this disease therefore might be perceived as too confusing, though conceivably Melvin Ramsay’s Disease or some other variant could be used to distinguish this disease from the existing condition.

One ME advocate commented privately that the term Ramsay’s Disease might only be acceptable if it were accompanied by the Ramsay criteria for the disease. This position was not expressed in the survey comments about this name, however.

The first person to describe an ME outbreak was Dr. Alexander Gilliam of the LA County Hospital epidemic in the mid-1930’s, and Gilliam’s Disease did receive a few mentions in this survey.

Other physicians and locations associated with ME outbreaks (including Bell Cheney Peterson Disease, Royal Free Disease and Tahoe Disease) also were suggested by a small percentage of participants as possible names for the disease.

Although Nightingale’s Disease was mentioned a few times, some survey participants pointed out that there is no conclusive proof that Florence Nightingale actually had this disease.

At least so far, no other names mentioning physicians or patients have generated anywhere near the level of community enthusiasm that Ramsay’s Disease has.

Although further study would be needed to verify this, the results of this survey seem to suggest that the name Ramsay’s Disease might be widely accepted, used and liked by most members of this community if it were officially adopted.

Therefore, investigating whether the U.S. government, other governments and WHO would be willing to adopt this term may be worth doing.

Another suggestion was that Ramsay’s Disease conceivably could be adopted as the nickname of the disease by everyone in the community and then used consistently to refer to it, regardless of what the government chooses to call the disease.

The widespread use of the term “Lou Gehrig’s Disease” as an alternative name to ALS provides some precedence for this possibility.

Insofar as specialist doctors, researchers, organizations, advocates and patients all started using the term Ramsay’s Disease as a nickname for the disease on a regular basis, it seems reasonably likely that other clinicians, the media and the general public might follow suit.

If that happened, conceivably the government eventually might make Ramsay’s Disease the official name as well.

 

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The final name that received more than a few mentions in this survey is the ME variant Myalgic Encephalopathy.

This name has the benefit of likely being less controversial than Myalgic Encephalomyelitis, since evidence that brain abnormalities are present in the disease is much more well-established than is evidence that brain inflammation in particular is present.

Myalgic Encephalopathy was not a very popular name in this survey, however. It fared far less well than Myalgic Encephalomyelitis, NEID or Ramsay’s Disease, receiving only about as many mentions as SEID.

Not many people elaborated on why they did not choose this name. Possibly it is perceived to have less historical resonance than either ME or Ramsay’s Disease; less simplicity than Ramsay’s Disease; and less accurate descriptiveness than NEID.

It also may be that people who see brain inflammation as a core component of the illness believe that research eventually will validate this aspect and thus are disinclined to compromise on it at this time.

Whether Myalgic Encephalopathy would be an accepted name in this community was not examined in this survey. It does not seem to be a name that people are terribly enthusiastic about, however.

 

Next Steps

This survey was explicitly not designed to determine what name should be used for this disease. It only was designed to evaluate whether changing the name to SEID would be a good idea and to begin to explore other name possibilities.

Although the survey results provide some insight into how people are thinking about various name choices, they do not definitively point to the conclusion that any of the names being considered would be the right one to adopt at this time. The results instead make it seem that all of the names being considered have at this time significant potential cons as well as pros.

Based on the survey comments, it seems that many people believe that the definition needs to be finalized before a name can be chosen.

Many people also suggested in their comments that it may be best to delay the adoption of a final name until an even later date (for instance, after more research is completed).

While adopting a new interim name is a possibility, many survey participants suggested that this would be too confusing for all concerned.

In general, a common theme in the comments was that the name was an important enough issue that jumping into a decision about it without thoroughly considering all the ramifications would be a mistake.

Active solicitation of community feedback on all proposals related to the selection of the name before those proposals are adopted by the government may be an essential component of the naming process, the results of this survey suggest.

The development of additional surveys or other mechanisms to allow patients and advocates to have a voice in the process thus may be considered as the naming process continues.

 

Screenshot (365)Part 3 – On the Topic of ME

The third and final part of this series – focusing on the specific responses of the segment of respondents stating that they had ME – will be shared on this blog shortly.

For more information about the survey results, see the PDF summary of the full survey results.

DOWNLOAD THE FULL REPORT

 

To go back to article on this blog about overall results of the survey (“Survey Results (Pt. 1): Evaluating a Proposed Name to Replace ‘ME/CFS'”), click on this link:

GO TO PART ONE ON SURVEY RESULTS

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