Name Change Poll Results: ME Wins

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).

The overall response to the new name has been negative. Patients don't like it for various reasons, and even Simon Wessely thought SEID might "add to the confusion." In the aftermath of the IOM's announcement, Leonard Jason was contacted by hundreds of outraged patients, which prompted him to write a blog post calling for greater collaboration between patients, ME/CFS physicians and government agencies, so that "all parties are involved in the decision-making process."

The prompt to gather feedback has generated several polls and surveys on the new name, sponsored by Health Rising, Paradigm Change, the ME Association, and ProHealth, among others. 

In all of these surveys and polls, ME has been the name of choice.

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ME Association Poll Results

The ME Association in the UK conducted a poll which had a total of 724 respondents. In answer to the question, "Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?" the majority answered with an emphatic "no." This is not surprising given the historical use of ME in the UK.

But while most did not like SEID, there were mixed responses from among the remaining 38%, indicating that a significant number of people are not happy with having two names (ME and CFS) for the disease.

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Cort Johnson/Health Rising Poll Results

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In February, Cort Johnson conducted a poll in which respondents were asked to rank different names for ME/CFS. A total of 550 people took the initial poll.

When asked to rank their favorite names from first to last, ME was the preferred name. SEID was the least preferred.

• 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%)

In a second survey, Neuroendocrineimmune Disease was added to the list. It proved nearly as popular as ME, but once again SEID came in last. 

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ProHealth Poll Results

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

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 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.

The majority of respondents (75%) thought that CFS needed to be replaced. The primary reasons given were 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.) 

"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."

"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."

Some other name suggestions were:

• Myalgic Encephalopathy (20)

• Neuroendocrineimmune Disease (or Dysfunction) (10)

• Ramsay-Gilliam’s Disease (5) Note: Dr. Alexander Gilliam investigated the Los Angeles County outbreak 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 1,244 additional 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.

The full results of the ProHealth survey were sent to the IOM, HHS Secretary Burwell, and ORWH Deputy Director Susan Maier.

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Lisa Petrison/Paradigm Change/ME Advocacy Survey

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A joint survey conducted by Paradigm Change and ME Advocacy asked a total of 1,147 people about a possible name change for the disease. The results were analyzed in a 526-page report which can be downloaded from Paradigm Change as a PDF file.

As with previous surveys, the preferred name was ME. Neuroendocrineimmune Disease came in second, as it did in Health Rising's second survey.

The Paradigm Change survey broadened its scope by asking for reactions to both the name and the process. The majority of respondents thought that the name SEID was either very bad or pretty bad, and 46% thought the IOM had failed to produce a legitimate name. 72% of respondents said that if the government started using SEID without input from patients, they would find it unacceptable.

In addition to garnering responses to the name, this survey asked respondents about the IOM process itself. More than three-quarters (76%) thought that patients need to have more input ability in the naming process, and that the IOM had not allowed for sufficient input. About half of the participants (51%) said that they felt angry about the naming process.

The survey results were sent to HHS secretary Sylvia Burwell; to the heads of the NIH and CDC; to CFSAC members; to the IOM panel chair; to the NIH P2P committee; and to clinicians and researchers focusing on the disease.

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In sum, it is clear from these surveys that the people whom the new name will most affect - patients, as well as researchers and ME/CFS specialists - have been entirely left out of the process of devising a name for this illness. It is also clear that the preferred name - on both sides of the Atlantic - is myalgic encephalomyelitis. Regardless of the IOM's opinion that brain inflammation is not yet proven be part of the illness, or their belief that pain is "nonspecific," there are historical reasons for choosing ME. 

It is more than likely that the decision to abandon ME was not primarily based on medical reasons - as there are numerous illnesses whose names have been assigned by history - but on politics. 

ME is associated with outbreaks. One of the forces that drives decisions made by HHS, as well as most state health agencies, is downplaying epidemics. AIDS and Lyme are cases in point. Both of these epidemics - one with a human vector, and one transmitted by ticks - were ignored until they became too big to sweep under the rug. Sadly, the agencies that are supposed to be responsible for protecting public health have consistently used the same tactic with ME.

Ultimately, SEID needs to be rejected not only because it is an inadequate name that does a disservice to people who must bear it, but because through inventing yet another name it denies one of the fundamental aspects of the disease, which is its history of outbreaks. 

Petition Launched Against SEID

Below is a message from Kristina Bray, who has launched a petition calling on the IOM to cease any attempts to rename ME as SEID (systemic exertion intolerance disease). 

Kristina argues that the new name does not express the complexity of the disease and, as a consequence, will not be taken seriously by physicians. 

Those are good arguments. In addition, it needs to be pointed out that "exertion intolerance" is a new term. Medical professionals are not familiar with it, and, more importantly, insurance companies do not include it on their roster of conditions that can be tested for. Exercise intolerance, on the other hand is familiar to both physicians and insurance companies. It is, however, not specific to ME/CFS, and therefore is fairly useless as a description.

Dr. Clayton has responded to the objections raised against the term SEID by saying that SEID could be used in addition to CFS and ME, each one of which would have its own definition. Clayton's solution would make it impossible for anyone to diagnose this illness - which defeats the whole purpose of the million-dollar IOM study.

Do we really need yet another acronym? Why not simply do away with CFS, and replace it with a name that has historic continuity, for example, ME? And wouldn't it have been more efficient to adopt the criteria that specialists have already devised for the illness (the CCC) rather than reinvent the wheel? 

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By Kristina Bray

As sufferers of, carers for or supporters of people suffering from the debilitating neurological illness M.E. (Myalgic Encephalomyelitis) we call upon the IOM (Institute of Medicine) to cease any attempts to have M.E renamed as S.E.I.D.

As people with first hand experience of the horrors of ME we do not feel that "Systemic Exertion Intolerance Disease" in any way expresses the severity, complexity nor the full impact that ME has on those who suffer from it.

Indeed, we feel that changing the name will hinder, rather than help people in seeking proper diagnosis and/or medical support and could also undermine attempts to raise awareness of this serious and chronic condition among the general public.

Sufferers of ME need awareness, support and treatment in the short term and research over the longer term to give them the best possible chance of achieving improvement, they do not need a "re branding" exercise that can do nothing to tackle the real struggles faced by people with ME.

You can sign the petition here:

https://www.change.org/p/institute-of-medicine-cease-calling-for-a-change-in-the-name-of-me-to-seid?

So, what do you think about the new name?

A version of this article first appeared on ProHealth.

Anyone may reprint or repost this article with a link back to the original, and attribution.

By Erica Verrillo

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).

The IOM's report on ME/CFS has generated a tremendous amount of media coverage (Time, CBS, NY Times Blog, The New Yorker), as well as considerable discussion in the ME/CFS community. While many have welcomed the report's emphasis on the serious nature of the disease, there have been some lingering doubts about the appropriateness of the new name.

(You can read and/or download the report as well as watch the video of the announcement HERE.)

A Brief History of the Name “Chronic Fatigue Syndrome”

In 1984, a mysterious illness struck residents of Incline Village, Nevada. At the time it was thought to be caused by Epstein-Barr virus (EBV), the herpesvirus that causes mononucleosis. For several years the disease was referred to as chronic EBV (CEBV). When EBV was disputed as the cause, Steven Straus of the NIH dubbed it “chronic fatigue syndrome” after its main presenting symptom. Straus was apparently unaware when he coined the term in 1988 that the disease already had a name that had been in use in the UK and Europe since 1959, “myalgic encephalomyelitis” (ME).

An outbreak of an illness identical to the one in Incline Village had struck the Royal Free Hospital in 1955. The attending physician of that outbreak was Dr. Melvin Ramsay, a doctor who not only documented the outbreak, but treated those who suffered from the disease for decades. The term he used for the disease was “myalgic encephalomyelitis,” in order to distinguish it from polioencephalomyelitis, the epidemic which had preceded the Royal Free outbreak.

Medical Impact of a Name

What people think we look like.
(Photo from thepsychologystudent)

Virtually from the moment of its creation, patients, as well as specialists, voiced reservations about the name “chronic fatigue syndrome.” Not only did the name trivialize an illness that could be devastating for patients, but it departed from medical tradition.

Illnesses are not named after a single non-specific (common to many ailments) symptom. Critics pointed out that there is no “chronic coughing disease” (pneumonia), or “chronic forgetfulness disease” (Alzheimer’s). In addition to these drawbacks, the focus on fatigue drew attention away from one of the cardinal symptoms of the illness, post-exertional malaise (PEM). It also led to confusion and ultimately to the misdiagnosis of patients who had other conditions that present with chronic fatigue, such as MS and leukemia.

What we really look like. (Jessica Taylor)

Public Reaction to SEID

While the ME/CFS community has universally welcomed the abandonment of CFS as a name for the disease, there have been mixed reactions to the IOM’s proposed new name, “systemic exertion intolerance disease” (SEID).

Those who like the new name have offered that “systemic” captures the fact that the disease affects multiple systems, and “exertion intolerance,” or PEM, is one of the cardinal symptoms of the disease. The fact that the IOM has defined the illness as a disease is especially important.

Those who are critical of SEID have pointed out that every disease affects multiple systems, therefore the inclusion of “systemic” is meaningless. They have also pointed out that “exertion intolerance” is non-specific. “Exercise intolerance” - as exertion intolerance is better known in the medical world - is a feature of cardiopulmonary diseases, hypothyroidism, cancer, and many other conditions. To make matters worse, “intolerance” can be easily interpreted by physicians as “aversion,” which increases the likelihood that patients will be referred to therapists and told to exercise. (See my analysis of the report HERE.)

Other Name Choices

Keep in mind that the recommendations of the IOM are not public policy. No federal agency or department is obliged to follow them.

Some of the alternatives to both CFS and SEID that have been suggested are:

Myalgic Encephalomyelitis: This is the long-standing name for the disease.

Cons: 1) CNS inflammation has not been definitively proven. 2) Not all patients experience pain. 

Pros: 1) The fact that inflammation of the CNS has not been definitively proven does not prevent adopting this name for historical continuity, much like the names malaria (which means “bad air”) and cancer (from karkinos, which means “crab” in Greek). 2) The IOM recognized that pain was a definitive symptom of the disease, and that it was experienced in various forms by 94% of patients. 3) Myalgic encephalomyelitis, as opposed to either “chronic fatigue” or “systemic exertion intolerance,” sounds like a serious medical illness. 4) Myalgic encephalomyelitis has been the name for this disease for 60 years.

Ramsay’s Disease: Honors Dr. Melvin Ramsay.

Cons: 1) There already is a Hunt Ramsay Syndrome. 2) The WHO discourages naming illnesses after people.

Pros: 1) There is a longstanding medical tradition of honoring physicians who first describe an illness. 2) Ramsay’s Disease makes no claim about the etiology of the disease, which has yet to be determined.

Nightingale’s Disease: Honors Florence Nightingale, the founder of the Red Cross, and sufferer of a chronic ailment similar to ME.

Cons: 1) Florence Nightingale probably did not have ME, but a chronic bacterial infection. 

Pros: 1) Florence Nightingale is famous. 2) This name skirts the issue of brain inflammation.

Cheney Peterson Disease: Honors the two American physicians who attended the Incline Village outbreak.

Cons: Neither physician has wanted this disease to be named after them. 

Pros: This name skirts the issue of brain inflammation.

Incline Village Disease: Where the illness was formally identified in the US.

Cons: 1) The outbreak in Incline Village was preceded by outbreaks in Los Angeles, London, Iceland, and various other locales, many of which had names associated with them. A clear point of origin is hard to establish. 2) The state of Nevada would not welcome one of their tourist attractions being associated with a disease.  

Pros: This name skirts the issue of brain inflammation.

Why Your Opinion Matters

In a post published on the Oxford University Press blog  Dr. Leonard Jason stressed that input from the community on what to name this illness is crucial. As he has pointed out, names can stigmatize. He proposed that with the publication of the IOM Report we have been provided an opportunity to work together to devise a name that is appropriate.

Adopting an appropriate name for this illness is important because a suitable name is a crucial part of getting recognition, funding, and treatment. As long as this disease is called "chronic fatigue syndrome" no one will take it seriously. No physician will consider it as a potentially life-threatening illness, and no researcher will be able to identify a cohort.

Without a clearly defined cohort of people who actually have the disease (as opposed to people who are chronically tired), there will be no funding, and without funding for clinical trials, there will be no treatment - of any kind.

The IOM got that much right. The question is whether SEID is any better. If it isn't, then we are stuck in the same situation we have been in over the past 27 years of "CFS."

Polls and Surveys

Recent results of polls have not favored SEID. Paradigm Change and MEAdvocacy ran a poll (March 1) that was strongly critical of the IOM's proposed name. Some of the preliminary comments were:

* If you read Ramsay’s definition of ME, it states that ME is multi system disease. This is my experience of the disease. Intolerant indicates that if the patient were given exercise therapy, their tolerance could be improved. The whole name centres around the exercise intolerance view, as CFS centred Round fatigue. There are so any other far more debilitating symptoms to ME and the worse the disease gets, the more symptoms and the more debilitating they are.

* It’s not clearly defined and “intolerance” sounds like exertion is something I’m not interested in as in laziness. I wasn’t lazy before getting this disease and now I don’t know day to day how I’ll feel. If I was a doctor and seeing this name I would think this person has psychological problems. It’s a step up from “CFS” but not by much.

* just change the name to M.E.

Health Rising has conducted a poll as well in which SEID came in last of all preferred names. (Click HERE for the results.)

What do you think?

IOM's name change is not written in stone, It has not been formally adopted by HHS, or by any US Agency. Although the IOM has suggested a WHO code for SEID, the World Health Organization has not yet assigned one.

No matter what you think of the new name, you can still make your voice heard through a variety of ongoing polls and surveys. Some of their results will be distributed to the media, and even more importantly to relevant government organizations (e.g. HHS, CFSAC).

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ProHealth is currently running a three-question poll, "What name would YOU choose for CFS?"

The questions are:

1. Do you have ME or CFS? (Either diagnosis)
2. Do you think CFS should be replaced by a new name?
3. Which name do you prefer for this illness? (Names are listed.)

This poll will be open until March 21. You can take it HERE.

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ME Association has a one-question poll. "Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?'

You can take the poll (and see the results) HERE.

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Mass CFIDS and FM Association is running a more comprehensive survey, "What do you think about the IOM report?" 

You may leave as long or short a comment as you wish. The results of this survey will be sent to CFSAC. The deadline is March 20, 2015. Take the survey HERE.

These are the five questions on the survey:

1) What are the positive things in the Report that we can use to move forward?
2) What questions do you have?
3) What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
4) What parts of the Report are problematic for you?
5) Do you have other comments you would like to share?

CDC Issues Formal Apology to CFS/ME Sufferers, Changes Name

Unexpected Decision Signals the End of an Error

By A. Lotta Blarney

April 1, 2013. The Atlanta Centers for Disease Control and Prevention (CDC) issued a surprise statement this morning, announcing that it was changing the name of the disease formerly known as chronic fatigue syndrome (CFS) to Post-Infectious Low Energy Syndrome.

“The CDC feels that PILES more accurately reflects the seriousness with which we take this illness,” said CDC director, Thomas Frieden, in a press conference held early this morning. “We are sorry for the decades of misunderstanding caused by the use of the word ‘fatigue.’”

The CFIDS Association of America, while voicing its approval over the removal of the “f” word, expressed some reservations in a tweet to its 1400 followers. “Fatigue gone, now have piles.”

Though the AMA declined to comment, the American Board of Colon and Rectal Surgery welcomed the change in nomenclature, citing its years of experience in treating illnesses of a similar nature.

The CDC concurred. “People with PILES now have their own specialized branch of medicine,” said Frieden. “This is a name we can all get behind.”

Who Took the “ID” Out of CFIDS?

Et tu, Brute?

First published on Blogcritics as "Chronic Fatigue and Immune Dysfunction: Who Took the “ID” Out of CFIDS?"

Does anyone remember CFIDS, aka Chronic Fatigue and Immune Dysfunction Syndrome? Back in the 1990s this was the accepted term for what is now called CFS, or, if you are so inclined, CFS/ME. The ID was quietly dropped by researchers and doctors about 10 years ago in favor of Steven Straus’s infamous legacy: chronic fatigue syndrome. Everyone agrees that CFS is a confusing, misleading and utterly dismissive name for the illness. Not only does it harm people who have CFS, it harms people who don’t.

In a recent study of patients newly diagnosed with MS, nearly one-third had been diagnosed with CFS (or with the even more vague, “fatigue”) for one to two years prior to being diagnosed with MS. Imagine how many other patients with incipient cancer, heart disease, liver disease, diabetes (to name a few “fatiguing” illnesses) have had the catch-all diagnosis of CFS slapped on them simply because they were tired. The term CFS has been just as much a curse to those patients, whose correct diagnoses and treatments have been delayed by years, as it has been to patients with CFIDS.

Who did this? Who managed to drop the all-important feature of immune dysfunction from the name? After all, it is obvious that people with CFIDS have an immune dysfunction. Chronicity is, in fact, the product of an altered immune system. With a fully functioning immune system, the host recovers. Immune dysfunction is not just a feature of chronic disease, it is its definition.

What’s more, the furor over what to call the “Disease of a Thousand Names” has only intensified since the ID dropped about. Prior to the deletion of the ID, people who had been diagnosed with ME (on one side of the Atlantic) and CFIDS (on the other) maintained a cordial relationship. Since the change, they are at each other’s throats. People with ME do not want to be diagnosed with an illness that not only reduces all their symptoms to the “f” word, but is doggedly lumped into some ill-defined category of mental illness.

Who did this? Who managed to divide what was once a unified community into squabbling sororities? The CFIDS community could, and did, accomplish so much when it spoke with one voice: national organizations, political lobbies, well-subscribed magazines. Now, it is factionalized, torn apart by the desire to achieve maximum distance from the stigma of "fatigue."

An even more disturbing consequence of dropping the ID is that supposed friends, clinicians who once championed the cause, have not only slipped into using the term CFS, but are adding insult to injury by dropping the S part and referring to this illness, which not only destroys lives, but can eradicate them, simply as “chronic fatigue.” It’s bad enough that the patients call their illness “chronic fatigue,” but Nancy Klimas, head of the Neuro Immune Institute and world-renowned CFIDS specialist, should know better.

Who did this? Who trivialized this illness among formerly committed researchers and clinicians? Who robbed CFIDS patients of their defenders?

Benjamin Natelson.

In 2002, Benjamin Natelson, noted CFIDS researcher, was given a grant by the NIH to do a meta-analysis of immune studies in CFIDS patients. Meta-analyses are not research studies, they are simply analyses of studies that have been performed in the past. Because meta-analyses basically serve as Cliffs Notes for researchers who are too pressed for time to read the original work, their ultimate value to the research community has been questioned. Natelson’s meta-analysis, entitled “Evidence for the Presence of Immune Dysfunction in Chronic Fatigue Syndrome,” examined 79 studies of immune function in CFIDS patients. Natelson found that that there was no consistent immune dysfunction. Some studies indicated that there were increased pro-inflammatory cytokines, others found increased anti-inflammatory cytokines.

Given the fact that one of the hallmarks of CFIDS is waxing and waning symptoms, this "inconsistency" should not have come as a surprise. The immune dysfunction that characterizes CFIDS is that it both under- and over-responds. Immune, as well as neuro-endocrine, swings are the inevitable outcome of the loss of homeostasis that lies at the heart of the illness.

Natelson ignored this aspect of immune dysfunction, just as he ignored the one consistent piece of data he found across these studies – low natural killer (NK) cell function. He concluded that, “the available evidence does not support chronic fatigue syndrome as being due to any consistent immunological dysfunction … we believe that the term “chronic fatigue syndrome” is preferable to the older “chronic fatigue and immune dysfunction syndrome.”

Aside from the damaging consequences of this conclusion, it turns out that Natelson was wrong.

In 2012, a group of Australian researchers headed by Ekua Brenu completed the first longitudinal study of immune function in patients with CFS/ME (CFIDS). This was the first time researchers had examined immune function over a long period of time, in this case, 12 months. The value of longitudinal studies to measure immune function is that the immune system is a moving target. It responds instantly to environmental input. Even the best short-term study of the immune system can’t give researchers more than a snapshot.

The Brenu study found that patients with CFIDS do indeed have an immune system dysfunction. It is the same immune dysfunction that most other studies have found over the past two decades: low NK function. The natural killer cells of CFIDS patients ignore invaders, tumor cells among them (which is perhaps why so many people diagnosed with CFIDS in the 1980s went on to develop lymphomas). The authors concluded that because cytotoxic activity was consistently decreased during the course of the 12-month study it “may be a suitable biomarker for diagnosing CFS/ME.”

Notwithstanding the tantalizing possibility that a biomarker may have finally been found, the real clincher came at the end of the discussion section, where the authors explained why previous short-term studies had been equivocal:

“Cytokine release in CFS/ME patients undergoes shifts during the course of the disease where patients may present with either an amplified or depressed anti-inflammatory or pro-inflammatory cytokine profile. These alterations in cytokine secretion may occur during the course of the disease and at different times causing either a shift towards a predominant Th1 or Th2 immune response in CFS/ME This makes it difficult to establish a unique CFS/ME-like inflammatory cytokine profile. The observed pattern of cytokine distribution among our CFS/ME patients is consistent with equivocal findings in the literature. In adolescents with CFS/ME, cytokine secretions have been observed to be correlated with seasonal variations. Therefore, CFS/ME may be associated with oscillations in pro and anti-inflammatory cytokines, supporting the heterogeneity and multifactorial nature of the disease and the diversity in symptom presentations.”

That paragraph alone should have heralded a new age in CFIDS research. It should have stimulated a lively discussion. It should have prompted a retraction of Natelson’s damning conclusion. It should have reinserted the ID.

But instead of doing any of those things, it was ignored, not just by the broader scientific community, but by CFIDS researchers, clinicians and, saddest of all, by those who would have benefitted the most - the patients. We are now lying in the bed that has been made for us.

And it is a hard one.

References:

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Natelson, Benjamin H., Mohammad H. Haghighi, and Nicholas M. Ponzio. "Evidence for the Presence of Immune Dysfunction in Chronic Fatigue Syndrome." Clin Diagn Lab Immunol. 2002 July; 9(4): 747–752. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC120010/

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