- Last Updated: 08 November 2015 08 November 2015
In Massachusetts the Registry of Motor Vehicles offers handicapped placards for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) who qualify as sufficiently disabled.
The placard allows for parking in designated handicapped parking areas. The placard also allows free parking at meters in Boston. (Check regulations for other cities and towns). These benefits can be quite important for those who are sufficiently disabled as to need the ability to park closer to supermarkets, places of business, etc.
To apply for a placard (the placard is mobile, so it can be used in different cars) or plate, a person with ME/CFS must have his or her physician complete a Registry form. The two most important criteria of eligibility as related to ME/CFS are as follows: (1) the doctor must state the diagnosis and nature of the impairment which would be to confirm the ME/CFS diagnosis. The doctor would also provide information on the prognosis of the illness (how long it is expected to last) and on its severity; (2) The doctor must confirm that the patient cannot move more than 200 feet. The Registry emphasizes that the mobility issue is of prime importance and must be documented by the physician. If the Registry gets only partial information, it will have to ask for a more complete evaluation. The essential focus for approval is for the physician to explain exactly how the patient is impaired: how easily, quickly, or unexpectedly the patient tires, and the extent of weakness and its direct effect on the lower extremities.
Note: With many patients, there are some days a person might be able to walk the 200 feet, but then suffer substantial after-effects—including relapse of substantial symptoms—so walking the distance is medically too risky. Again, the person might be able to walk the distance on some days and not on others, so the person should have the placard; or the distance might be walked but only under conditions of suffering. All these points should be taken up with the persons physician before submitting the Registry form.
Nothing should be submitted to the Registry which might be construed as a medical reason for questioning the persons ability to drive safely.
- Last Updated: 07 December 2015 07 December 2015
by Sally Jacobs, Boston Globe Staff
It is hard to write a book. It is harder still when looking down at a piece of paper makes you dizzy, when you are so persistently tired that just taking a shower requires a three-hour rest, and when, sometimes, the bookshelf across the room starts to ripple like an accordion.
Somehow, Laura Hillenbrand did it, managing to overcome a legion of crippling symptoms in order to write not just any book, but the stupendously successful Seabiscuit: An American Legend, which was on the bestseller list for more than a year and is now being made into a movie. Never mind that her disease, chronic fatigue syndrome, is one that some doctors do not believe exists at all. Never mind that she appears in pink-cheeked health, so much so that Pond's skin cream recently featured her in an advertising spread in Vanity Fair and Self magazines. Or that she is actively engaged as a consultant on the film. The fact is that much of Hillenbrand's life has been a saga of sickness, one now made worse by her immense effort to write her book, and one that is almost as gripping as that of the valiant 1930s racehorse who is the heart of her story.
Consider her troubles: Since the day she turned in her final draft two years ago, Hillenbrand says, she has been plagued by a recurrence of vertigo, spawned by her illness, so intense that she is barely able to read or write. She doubts she will ever write another book. Not only do shelves ripple, but the couch bucks, the armoire lists, visitors bob up and down, and sometimes the floor drops out of sight. Savaged by exhaustion, she rarely leaves her trim yellow brick townhouse and counts as a good day one when she can walk a whopping three blocks. She cannot drive a car or fly in a plane. She does not go to the movies because the light is too intense. She has been out to dinner only once in five years, and even then she had to be driven the one-block distance. Hillenbrand, in fact, says she is far too tired even to marry her live-in boyfriend.
''If I were to get married, I would really want to show up, you know?'' declares Hillenbrand, 35. ''I don't want to do it if it's going to be this really arduous deal, and I think right now it would be really hard to do. The deal is that we are waiting until I get stronger.''
Her boyfriend, Borden Flanagan, a political-science instructor at American University, agrees, adding, ''Another problem with a wedding is all those people coming from out of town. Laura doesn't know if she can do anything one day to the next, so I think we'll wait.''
It has been 15 years since Hillenbrand ate a piece of chicken at a hotel buffet and got an apparent case of food poisoning that culminated in her collapse and a diagnosis of CFS one year later. Since then she and Flanagan, whom she met at Kenyon College six months before she fell ill and has been with ever since, have endured the mercurial course that is characteristic of the illness. There have been periods of disabling fatigue that left her bedridden for months at a time. There have been night sweats and fevers, spasms of vertigo, and once a period of partial blindness. At times she was unable to shower for such a long stretch that her hair ''looked soaking wet.'' Some friends and family members, at least in the early days of her illness, rolled their eyes in disbelief. One doctor attributed her condition to puberty. Another told her, ''You've just got to get up and get going, honey.''
But there have also been periods of relative wellness, periods during which Hillenbrand began to write about the horses and the curve of the track that have long been her passion. Perched in her bed, she pecked out stories for magazines with names like Equus and Turf Flash. And then, in 1996, as she was going through some racing documents, Hillenbrand came across the name of Seabiscuit, the famous thoroughbred who triumphed over astounding odds to become a racetrack legend and an icon in Depression-era America. She knew the name well: A dog-eared copy of the children's book Come On, Seabiscuit, which she bought from the Bethesda Elementary School fair at age 7, sits on her bookshelf. But this time, it was the three unlikely men who helped transform Seabiscuit's career as much as the horse himself who fascinated her. Hillenbrand, who grew up riding horses on her family's Maryland farm, identified as much with Seabiscuit's half-blind jockey, Red Pollard, as the horse.
''I feel like I am Pollard,'' declared Hillenbrand. ''I can't write because I have vertigo. He couldn't ride because he had no talent. Seabiscuit saved him and gave him a reason to live. It's the same for me. I thought, `I can tell this story.' ''
A Runaway Bestseller
Five years later, the book was released to an avalanche of acclaim. In the first week, it landed on the New York Times bestseller list; it shot to first place in the second week and remained on the list for more than a year. It has sold nearly 800,000 copies, and the film, starring Jeff Bridges, Chris Cooper, and Tobey Maguire as the jockey, has begun production and is expected to be released in July 2003. Because of her illness, Hillenbrand has been unable to go on tour or even make it to the studios of all the television and radio stations that want to interview her. Instead, ''Good Morning America,'' ''NBC Nightly News,'' and the like have lugged their equipment up her concrete stoop and set up their lights in her small, lemon-walled living room. Her ficus, she says, laughing, has made so many TV appearances that it is ''getting its own publicist.'' On days that she does interviews, she rests in the morning and, she says, ''I tell Borden not to talk to me.'' Sometimes when she is being interviewed on the phone, she keeps her feet in the tiny refrigerator next to her desk to keep a check on her ever-present fever, to which she attributes her rosy glow. She is still sick, but it is different now.
''I'm on the other side of this illness, in a way, because I've had success,'' explains Hillenbrand, dressed in a black blouse and short red-and-aqua patterned skirt. ''No one could call me a malingerer now, and I think that is part of the reason I wrote the book. I wanted to achieve something in the world of healthy people, to demonstrate I am not a malingerer. That I'm not lazy.''
Hillenbrand's success, however, has hardly cleared the clouds that hover over CFS. Largely dismissed as ''yuppie flu'' in the 1980s, CFS has come to be recognized as a medical condition by the Centers For Disease Control and Prevention, one identified not just by fatigue, but by a constellation of symptoms such as muscle pain and headaches. It has neither a known cause nor a cure and endures as something of a medical mystery. Like many of its victims, Hillenbrand, a slender woman with straight blonde hair, can appear to be in good health. She withstood an interview of four hours and trotted up and down the stairs repeatedly. Although symptoms sometimes ease over time, cases that persist, such as Hillenbrand's, tend not to dissipate.
Dr. Fred Gill, Hillenbrand's former doctor and now chief of the internal-medicine consult service at the National Institutes of Health, says Hillenbrand's case is ''remarkably severe'' and describes her limitations as ''on the extreme side.'' Several of her symptoms, such as temporary blindness and the sensation of pitching and rolling, are not typical. But Gill and others say CFS symptoms vary widely. Hillenbrand has tried a few of the medications recommended by the CDC, but they have not worked well. Now she takes only diuretics to alleviate facial swelling. She rarely sees a doctor, she says, because ''there's nothing much he can do.''
Her real caretaker is Flanagan. It is he who has bathed her brow during the worst of it, who moved into her mother's Maryland home with her after she first collapsed in 1987, who turned her in her bed when she could not do so herself, and who now watches to make sure there is not too much salt in her food or that reporters do not tire her out. Although Hillenbrand's three siblings have been supportive, only her brother lives nearby, and he does not see her often. Her father, who is divorced from her mother, ''has nothing to do with my illness,'' she says, and her mother declined to be interviewed. Flanagan is the only one she allows to drive her, she says, because ''he works the brakes so well. It doesn't affect the vertigo.''
Flanagan, a wiry 37, acknowledges that the years have been hard on him, too. In the early '90s, when Hillenbrand was largely bedridden, Flanagan says he felt consumed by her illness and floundered in his graduate work; he still has not finished his dissertation. At some point, the couple realized Hillenbrand would probably never be able to carry a child. The future, he says, ''was empty. It seemed like my life was going to be an unending spectacle of Laura's suffering.'' He thought of leaving more than once.
But Hillenbrand's success has buoyed him as well. ''It's been so great to see her flourish after all the years of being ground down, to see her come back,'' exclaims Flanagan. ''I sort of feel like a roadie for Aerosmith.''
Hillenbrand's symptoms seemed to subside during the years she wrote the book, and as publication approached, she debated with her editor whether to discuss her condition in public. Since then, her frankness has only enhanced her appeal and drawn a steady stream of reporters to her side. And then, of course, there is the book itself, which by almost any assessment is a triumph.
Anything is Possible
Seabiscuit is a riveting story about a gimpy-legged horse who defied all the odds to become one of the greatest racers in history, one so beloved that his name was mentioned in more newspaper articles in 1938—the year of his sensational triumph as Horse of the Year over archrival War Admiral—than either Franklin Roosevelt's or Adolf Hitler's. It is a masterpiece of reportage, chock-full of arresting detail. Hillenbrand plays the drama of the backstretch like one teethed, as she was, by her father's side at the dusty West Virginia tracks. But what makes Seabiscuit astonishing is that the only place Hillenbrand traveled for the book was the library. She never interviewed a single character face to face or saw any of the scores of places that she writes about. She did not visit any of the tracks where Seabiscuit pounded out his fame, although she had visited a few long before she became ill. She did not touch a single horse.
Instead, she turned the thermostat in her beige-walled office down to keep her fever low. She stacked cereal boxes and bowls across the top of her desk so she did not have to waste energy going downstairs for food. She constructed an elaborate contraption to hold up reading material so she did not have to look down. And then she got on the phone. Over four years, she interviewed more than 150 people, many of them grizzled jockeys and track veterans in their 90s. She posted scores of notices on the Internet, searching for more. She pored over old newspapers and track records, emptied eBay and other web sites of track memorabilia. She hired a former jockey to visit a racing library. She listened to crackling audiotapes and watched scratchy newsreels. And in a way, as her editor sees it, her condition may have helped the book.
''Laura doesn't have kids and she doesn't go out, so for years this was her central passion,'' says Jonathan Karp, executive editor at Random House, which published Seabiscuit. ''Even though she has this illness, in a way it may have given her a focus and impetus that allowed her imagination to find some kind of deeper connection to Seabiscuit that perhaps other writers might not have. She got obsessed.''
Karp and Hillenbrand's agent, Tina Bennett, of Janklow & Nesbit Associates, say that Hillenbrand's illness did not slow her progress at all, despite several health setbacks, including a temporary loss of sight in her lower left eye. It did alter the standard relationship among writer, agent, and editor. Rather than Hillenbrand going to New York to work on the book, Karp went to Washington, D.C. Bennett did not actually meet Hillenbrand until one year after the book was published and they had worked together for five years.
But the editing homestretch—several grueling weeks and so many late nights—did Hillenbrand in. The day after she turned in her manuscript in the fall of 2000, Hillenbrand collapsed. Or, as she puts it, ''the sky fell again.'' The world began to pitch and hurl. The night sweats resumed in force. The exhaustion crept through her bones. Now she is able to read and write only a few paragraphs a day. She spends those paragraphs like a miser: a few e-mails one day, a few sentences in the article she is working on about her chronic fatigue. If her recurrence is, as she says, ''the price I am paying for the book,'' she feels it has been well worth it.
''The illness got me used to accepting that I couldn't do or have very much. All possibility disappeared from my life,'' says Hillenbrand. ''Now, with all this love coming in and people believing in me, I can believe in myself. So in a way, Seabiscuit is to me what he was to people in the Depression. He is possibility.''
Sally Jacobs is a Staff Writer for The Boston Globe. This was a lead story from that newspaper on 10/24/2002. © Copyright 2002 Globe Newspaper Co. Copyright permission granted.
- Last Updated: 23 January 2016 23 January 2016
by Dr. Robert Bennett
The 10th World Congress on Pain was held in San Diego CA August 17 to 22, 2002. This is a triennial meeting organized by the International Association for the Study of Pain (IASP), the leading world body for pain researchers and clinicians. It was a truly massive and overwhelming meeting with 1788 presentations of one type or another. I do not have a precise number for the attendees, but my estimate is about 3500.
The first day was devoted to refresher courses. I took part in one of these courses devoted to rheumatic pain disorders, giving a one-hour talk on fibromyalgia (FM). The other two speakers were from the UK; Professor Michael Doherty spoke on osteoarthritis and Professor Bruce Kidd spoke on rheumatoid arthritis. I was gratified to learn that at least some UK rheumatologists are focusing their attention on pain mechanisms—but as in many countries this continues to be an uphill battle. There were many sessions devoted to the basic mechanisms underlying chronic pain states such as FM. Indeed, FM was frequently referred to in many of these presentations as being the classical example of a "central pain state". By this is meant that peripheral tissue causes of pain cannot be readily identified in most FM patients and that most of the action is at the level of the spinal cord and above. The neurophysiological and biochemical basis of central sensitization is now being unraveled in minute detail. Much of this work relates to neurochemicals and their interaction with specific receptors. This is the basis of the transmission of sensory impulses from one nerve cell to another. In order to make advances in this field one must devote a large chunk of a research career to just one very specialized topic. Needless to say, the arcane nature of this work makes it very difficult to understand unless one is an "insider". However, understanding the detailed mechanisms of neurochemical receptor interactions will be pivotal in the creation of designer drugs for treating chronic pain, while minimizing the unwanted side effects that plague many of the currently available medications.
Glial cells lecture
A state-of-the-art lecture, by Professor Linda Watkins from the University of Colorado in Boulder was particularly noteworthy. For the past 10 years or so, she has studied glial cells. Until fairly recently glial cells were considered boring, as their only known role was to provide a skeletal type support for nerve cells of the brain and spinal cord. Prof. Watkins discovered that glial cells can be activated by infections and other stresses, and they then interact with nerve cells to produce chronic pain states via the secretion of small proinflammatory molecules called cytokines. For instance, 90 percent of patients with HIV infection have chronic pain. Prof. Watkins has shown that one component of the HIV virus (gp 120) interacts with glial cells to induce a chronic pain syndrome. This of course may be of relevant to FM patients who trace the onset of their problem to an antecedent flu-like illness. Furthermore she has recently shown to that the introduction of a cytokine called interleukin-10 into the nervous system of mice with an experimentally induced chronic pain syndrome, attenuates their pain. Interestingly, interleukin-10 inhibits the actions of the pro-inflammatory cytokines. This is obviously exciting and important work which may eventually have a relevance to FM patients—stay tuned.
Fibromyalgia and CFS
There was an interesting symposium entitled "The Biopsychosocial Approach to Fibromyalgia and Chronic Fatigue Syndrome". It featured researchers with differing views as to the nature of FM and CFS. Dr. Milton Cohen, from Australia, asserted that two fundamental errors have been perpetuated in contemporary research on the clinical phenomenon of widespread pain and fatigue. The first is the failure to distinguish a clinical feature from a disease process, without a unifying concept. The second major error is the failure to focus on the neurobiology of the defining clinical finding—i.e. increased pain sensitivity.
Dr. Lawrence Bradley from Birmingham AL contested Dr. Cohen's statement regarding the lack of research on the neurobiology of FM and presented impressive evidence for abnormal pain processing and dysregulation of neuroendocrine function in FM. He noted that disorders such as FM, CFS and irritable bowel syndrome (IBS) had a large degree of overlap. But he also noted that not all persons with CFS showed the abnormal pain sensitivity of typical FM patients. Dr. Bradley concluded that a better understanding of the natural history of these overlap syndromes, looking at genetic contributions, developmental stressors and triggering events, will be essential in unraveling the relationships of these common disorders.
There were 27 individual poster presentations devoted to the topic of FM. Here I review the 9 that I consider to be most relevant and understandable for patients.
1—A study from France explored the efficacy of subcutaneous ketamine on improving pain in FM patients. Ketamine is a class of drugs known as NMDA receptor antagonists. In high doses it is used as an anesthetic. Activation of the NMDA receptor is a critical event in the biochemistry of chronic pain states. Fifty patients received subcutaneous ketamine (up to 50 mg daily) for ten days via an infusion pump similar to that used by diabetic patients. There was a significant improvement in pain scores in 78 percent of the subjects. At six months after discontinuation of the ketamine, 45 percent of the patients still showed improvement. This is an intriguing study but suffered from lack of a control group using a placebo.
2—There was a fascinating study from a New York group exploring the effects of the September 11th World Trade Center disaster on symptoms of FM. In a study prior to September 11th, this group had screened a population of 9000 women in metropolitan New York and New Jersey for FM symptomatology and psychiatric symptoms. In February and March of 2002 they re-contacted 1000 of the same women to determine whether existing symptoms had changed. Interestingly they did not find any major changes in FM like symptomatology, although there was a minor increased in anxiety-related symptomatology. Interestingly, there was a significant reduction in the number of doctor visits. I asked the author of this study for her interpretation of the reduced doctor's visits. She conjectured it was due to a changed perspective of their problems in the light of the devastation wreaked upon so many others.
3—There is an ongoing question as to whether FM may be set off by whiplash injuries resulting from motor vehicle accidents. A study from Switzerland applied an objective measure of increased central nervous system sensitization (the nociceptive withdrawal reflex) to 3 groups of subjects; one group with whiplash, another group with FM and a group of healthy controls. The FM and whiplash patients, but not the healthy controls, showed unequivocal evidence of increased central nervous system sensitization. This is an important study that brings some objectivity to this issue.
4—On the same subject, a group from Seattle looked at the onset of FM following whiplash injury. This is an ongoing NIH funded study which aims to eventually enter 400 whiplash subjects. To date 25 subjects have been studied and 20 percent have developed widespread pain, and 80 percent met the tender point criteria for a diagnosis of FM. The authors concluded that some of the findings of FM are common in women 2 to 3 months following whiplash injury. They suggest that part of this increased prevalence may be due to a clustering of tender points in the neck region—as expected in the soft tissue trauma following hyperextension/flexion injuries to the neck. But they also noted that the high prevalence of FM symptomatology is probably not entirely artifactual, as 68 percent of the whiplash subjects also demonstrated tender points in other parts of the body.
5—A psychophysical research study from Gainesville Florida studied FM patients and healthy controls with an objective measure of central sensitization called "temporal summation." They asked the question as to whether central sensitization could be modified by the placebo response, fentanyl (a long acting opioid drug) or naloxone (a drug that antagonizes the analgesic actions of opioids and the placebo response). They found that FM patients had increased levels of central sensitization compared to healthy controls. Temporal summation was attenuated by both placebo and fentanyl to a similar degree and was not influenced by naloxone. It was concluded that central sensitization, which is thought to be a critical component of increased pain sensitivity in FM, can be centrally modulated by both endogenous (i.e. placebo) and exogenous (i.e. fentanyl) manipulations. There is increasing evidence that one's own endogenous pain modulating apparatus, modulated by endorphins, involves the same neural pathways as opioid analgesics. Thus strategies aimed at activating a patient's own endorphin system, such as exercise, adopting positive coping strategies and having an optimistic outlook, are important tools in the effective management of FM.
6—Most physicians who specialize in managing FM patients believe that a multidisciplinary approach to treatment is an essential prerequisite for success. A Canadian group developed a ten-week program for FM patients which included education, group support, coping skills training, physical exercise in a pool, goal setting and daily activity diaries. Patients were seen in groups of 10 to 15. Overall 395 patients had been analyzed at the time this study was reported. Highly significant improvements were seen in the Fibromyalgia Impact Questionnaire (FIQ), a widely used outcome measure in FM studies. Women showed greater improvements than men, and women under 40 showed the most improvement.
7—A study from Brazil reported on the effects of acupuncture on pain and quality of life in patients with FM. Forty-eight women with FM were randomly allocated into 2 treatment groups. Group 1 received amitriptyline plus twice-weekly acupuncture sessions for 3 months. Group 2 received amitriptyline plus stretching and relaxation exercises twice a week. There was a significant reduction of pain intensity and improved function in both groups, but the acupuncture group had significantly better response than the other group. The authors concluded that acupuncture is an effective tool for treatment of FM patients.
8—A study from Salt Lake City attempted to evaluate whether FM patients would be more susceptible to pain experience during mammography and Pap smears. A questionnaire was sent out to 100 women who were randomly selected from a database of FM patients. Fifty- nine patients agreed to take part in the survey. They rated pain and anxiety during their last mammography and Pap smear on a scale of 0 to 10. The mean pain score was 4.32 for mammography and 2.45 for Pap smears. Mean anxiety scores were 2.33 during mammography and 2.2 to during Pap smears. It was concluded that women with FM experience a moderate amount of pain during mammography, and rate mammography as significantly more painful than Pap smears. Anxiety levels were comparable between the two procedures. As pain is a deterrent to women for undergoing mammography, the authors suggested that more effective pain management during this procedure should be considered for those women susceptible to discomfort during mammography, such as FM patients.
9—A study from the UK evaluated the use of a new antidepressant drug called Reboxitine in a study of patients with FM and neuropathic pain. Reboxitine is a class of drugs that selectively inhibits the reuptake of noradrenaline. Thus its mode of action is somewhat similar to fluoxetine (Prozac) but it inhibits noradrenaline reuptake rather than serotonin reuptake. One of the mechanisms whereby the brain can control the relay of pain impulses upwards from the spinal cord is via a descending pathway from the midbrain which uses noradrenaline as a neurotransmitter. Thus it was conjectured that Reboxitine would modulate pain via this descending noradrenaline system. Twenty-five women with FM and 14 with neuropathic pain (nerve pain arising from conditions such as diabetes or shingles) were included in the study. Eight (32%) of the FM patients had a very significant reduction in pain intensity and 6 elected to continue with Reboxitine after the trial ended. Six (43%) patients in the neuropathic pain group reported significant pain reduction but only one wished to continue using Reboxitine after the study ended. The reason for not continuing with the medication after the end of the study was the side effects of insomnia and agitation. However, in some patients the sense of agitation was interpreted as a feeling of increased energy, which was particularly welcome in some FM patients. This study did not contain a placebo control group and thus the specificity of the Reboxitine effect cannot be assessed.
Overall the 10th World Congress on Pain was a stimulating and somewhat exhausting experience. As is often the case with large international conferences one was subjected to intense information overload. However, I came away with a sense of awe at the magnitude and quality of the research which is being done worldwide to reduce the burden of chronic pain. As an FM researcher, I was gratified to see that the diagnostic term "fibromyalgia" is being used increasingly by pain researchers who often refer to it as a "classical example of central sensitization." As a rheumatologist, I am increasingly impressed that FM is primarily a neurological disorder which presents as a musculoskeletal pain syndrome. Having said that, I believe that rheumatologists will continue to be the major specialty who treat FM, as the correct diagnosis of musculoskeletal pain is complex, and furthermore there is often an overlap of FM with chronic rheumatic problems such as osteoarthritis, lupus, and rheumatoid arthritis. Interestingly, neurologists seem to be one of the last standouts in accepting the FM concept.
Dr. Bennett is an internationally known FM specialist, Professor of Medicine at Oregon Health Sciences University (OHSU), and Chairman of Arthritis and Rheumatic Diseases Division. Permission was granted to publish this article from the Fibromyalgia Information Foundation's website. © 2002 Robert Bennett M.D., FRCP.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.