- Chronic Fatigue Syndrome causes extreme fatigue that cannot be explained by any other medical condition.
- Symptoms and diagnosis
- Managing your symptoms
- Diagnosing Chronic Fatigue Syndrome — A Complicated But Important Process
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
- What is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
- Who is most at risk for getting myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
- How common is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
- What are the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
- What causes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
- Related posts:
Chronic Fatigue Syndrome causes extreme fatigue that cannot be explained by any other medical condition.
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is an illness that causes extreme fatigue that cannot be explained by any other medical condition. If you have CFS/ME you are likely to feel very tired, very often, even if you have not been active. You may also have a host of other symptoms.
Doctors do not yet understand the cause or causes of CFS/ME, and there is no simple cure. But if you or your child has CFS/ME, your doctor can suggest treatments you may find helpful.
Symptoms and diagnosis
The most common symptom is ongoing, unexplained overwhelming tiredness or fatigue as a result of minimal physical or mental effort. This is known as post-exertional malaise (PEM).
Other symptoms may include:
- muscle pain
- joint pain
- sore throat
- loss of memory or poor concentration
- not feeling refreshed after being asleep
- enlarged lymph nodes
- unusual tiredness after exercise
This tiredness may be your only symptom, or you may also have any or all of the other symptoms.
Some people experience mild symptoms, and others more intense symptoms.
There is no single test to diagnose CFS/ME. Your doctor will diagnose CFS/ME based on your symptoms and how long you have had them. Your doctor may do some tests to rule out other possible causes of your symptoms before diagnosing CFS/ME.
Patients can be diagnosed with CFS/ME only after they have had symptoms for 6 months or more.
Check your symptoms with the healthdirect Symptom Checker to get advice on when to seek medical attention.
Managing your symptoms
It may help if you:
- relax as much as possible
- try to go to bed at the same time each night and limit daytime napping
- limit your activity, even on good days — otherwise you may have more days when you are exhausted
- pace yourself — keep your activity level even
- avoid caffeine, alcohol, nicotine and anything else that could affect your sleep
Your doctor can also suggest treatments such as:
- medicines — for depression if you are feeling depressed, or pills to help you sleep soundly at night
- gentle graded exercise — which means you try different types of exercise that suit you, and increase the level of activity when you are ready
- psychological counseling
- cognitive behavioural therapy
Any suggested treatments for your symptoms will aim to make you physically, mentally or emotionally stronger. There is no simple cure. Any commercially available product or treatment promoted as a cure for CFS/ME should be treated with caution.
Your doctor may also suggest working with other healthcare professionals such as a psychologist and physical therapist.
You may want to talk to your doctor about how to manage work or school commitments while you are sick and when you feel you might be ready to return. Try to pace your activities so that you do not spend more energy than you have while you are ill.
Diagnosing Chronic Fatigue Syndrome — A Complicated But Important Process
The Many Steps to Diagnosing Severe Fatigue
Getting a chronic fatigue syndrome diagnosis will involve a physical exam and testing. Because pain is a common complaint among people with chronic fatigue syndrome, your doctor will want to examine any painful areas for swelling, tenderness, and range of motion constraints, and test for other possible causes of your pain, such as arthritis.
There is no single diagnostic test that will tell your doctor whether you have chronic fatigue syndrome. Instead, your doctor will order several tests, depending on the symptoms of chronic fatigue that you are concerned about. These tests could include:
- Complete blood count to help rule out leukemia, anemia, and lupus
- Lyme disease
- Thyroid function
- Blood chemistry to make sure sugar levels and other measures of health don’t point toward another possible cause, such as metabolic syndrome
- Urine tests
You may also be referred for psychological testing or even for testing in a sleep medicine center.
Other Conditions That Cause Severe Fatigue
Numerous health conditions can cause severe fatigue, including:
- Sleep apnea
- Multiple sclerosis
- Irritable bowel syndrome
- Ovarian failure
- Lupus erythematosus
- Rheumatoid arthritis
In addition, some medications also can cause chronic fatigue symptoms.
The Symptoms Necessary for a CFS Diagnosis
If your doctor doesn’t find another cause for your chronic fatigue symptoms, you will get a chronic fatigue diagnosis if you have severe fatigue that is not due to your activity level, doesn’t improve with rest, and forces you to cut back on your daily activities.
Also, you will have had four or more of these symptoms for six months or more:
- Difficulty with memory and concentration
- Sore throat
- Sore-to-the-touch lymph nodes
- Painful muscles
- Painful joints
- Headaches that are unlike your normal headaches
- Sleep that does not make you feel rested
- Your symptoms get worse in the days after increased physical or mental activity
Data suggest that only about one in five people with CFS have been diagnosed. But the earlier you get diagnosed, the sooner you can start managing CFS. Keep asking questions until you get all the answers that you need.
If you or someone you know is living with CFIDS, you have either experienced or observed the chronic exhaustion, brain fog, debilitating stress, and other symptoms which characterize this illness. As you may already know, CFIDS is a complex, mysterious and long-term condition which relatively few physicians understand how to remedy. Moreover, despite the fact that the U.S. Center For Disease Control issued a diagnosis definition for CFIDS several years ago, many doctors refuse to believe that the disease truly exists. Among some physicians and the general public, there is still a widespread and misguided belief that CFIDS patients are mere neurotics with problems “all in their heads.”
Given the difficulties surrounding successful diagnosis and treatment of CFIDS, it’s hardly surprising that the doctors who specialize in treating it must navigate through medical mysteries, intellectual challenges, and occasional opposition or derision from their colleagues. While many physicians chose medicine because they wanted to heal people, “CFIDS patients often frustrate physicians because they do not always respond promptly to treatment,” says William Crook, M.D., of Jackson, Tennessee. Crook, a renowned authority on yeast-related illnesses, is the author of “The Yeast Connection” which has sold over one million copies. He has also written several other books, including “The Yeast Connection Handbook” and “Women And The Yeast Connection.” “It’s hard being a physician to CFIDS patients because you want them to respond promptly to treatment, you want to satisfy the patient and know that you’ve succeeded, but they can often take considerable time to improve,” he says.
As it happens, physicians who treat CFIDS patients often undergo a certain psychic wear and tear that other kinds of doctors may never encounter in a lifetime of practice. “Patients with CFIDS, fibromyalgia and yeast conditions take up a lot of office time in order for the physician to do an adequate job,” says William Crook, M.D., of Jackson, Tennessee. “I have cared for many CFIDS patients and have found it extremely satisfying but difficult, because the time demands can be so substantial.” Part of the problem is that physicians are forever pressed for time: they are usually paid for procedures and not paid proportionately for the time they spend with a patient. This is especially true in managed health care systems.
“Managed health care has unfortunately diminished the options for patients and doctors. I couldn’t survive it psychically…six months was all I could handle,” says Jay Goldstein, M.D., of Anaheim Hills and Santa Monica, CA. The author of several books about CFIDS and founder and director of the Chronic Fatigue Syndrome Institute, Goldstein’s brief involvement in “a mini-HMO arrangement, an IPA,” occurred in 1983. “I hated having to make the bottom line, rather than the patient, be the most important concern,” he recalls. “I’d lie awake at night, wondering if I missed a potentially lethal diagnosis because I hadn’t ordered a CT scan for a patient since I’d been trying to cut costs.”
For physicians who treat CFIDS, it can be very stressful balancing their patient schedule to make enough money to pay rent on the office and pay staff salaries, as well as support a family. According to Dr. Crook, “I’ve actually had kind, compassionate internists on our referral list tell me, “Please take me off your list. I simply can’t afford to see CFIDS patients…I need to set aside sufficient income to educate my children.” Perhaps the time-consuming and profit-gobbling aspects of treating CFIDS patients help account for many physicians’ rejection of the authenticity of the CFIDS diagnosis, as well as their refusal to treat such patients. “Any physician who truly cares about healing finds it dispiriting and wearing to hear other doctors say that CFIDS doesn’t exist because a disease marker has yet to be found and there are no laboratory tests for the illness,” Crook says.
Some of the therapies which help CFIDS patients include avoidance of foods that cause sensitivity reactions, anti-yeast medications, dietary changes and nutritional supplements including vitamin B12 injections and CoQ10. “Traditional conservative physicians may look askance at the physician who treats patients with these various interventions. They may consider him or her to be a “nut.” No physician likes to be regarded in such a manner,” says Dr. Crook. Being looked upon as an outlaw or a weirdo by one’s medical peers “can be disturbing, and when the same CFIDS doctor factors in worrying about how many CFIDS patients he or she can help while still surviving financially, they can feel overwhelmed, because more patients may come in than the physician can afford to treat.”
“One of the great satisfactions of working with CFIDS patients is that given enough time, I can help clear up some of their health problems and help them manage their illness,” says Dr. Crook. “It feels rewarding to make your patients feel better.” Although a medical colleague once told him years ago that his practice with CFIDS and yeast-weakened patients qualified him as “a voice crying in the wilderness,” Crook is proud of his pioneer status. “I recently wrote him and said that I was still crying in the wilderness. I would like to present my observations to medical students someday.” For now, Crook is content to continue lecturing, writing and publishing books through his own company, Professional Books, based in Jackson, Tennessee. “I can reach a huge number of people via my writings,” he says. “I just hope doctors, as well as patients, read them and benefit from studying the cases I discuss.”
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Dr. Goldstein, who has been treating CFIDS since 1983, when the condition was still called chronic mononucleosis, formerly worked in family practice and taught biological psychiatry at the University of California at Irvine. “Although I was in family practice, because of my teaching biological psychiatry, many treatment-resistant patients were referred to me.” Goldstein says that he found he could significantly help the vast majority of the people who came to him. His reputation grew accordingly: “Whereas I started out seeing 1 or 2 treatment-resistant people a day, by 1986 there were so many people calling that it became 20 or 25 patients a day. My office started booking appointments every 15 minutes but this didn’t work because these patients take an hour or more to give their history…”
Goldstein remembers feeling overwhelmed by trying to best serve both his family practice patient needs and those with chronic fatigue. “The needs for chronic fatigue patients are so much more complex compared to someone, say, who has a sprained ankle. And that person with a sprained ankle didn’t want to wait for three hours to be examined by me,” he says. “I found myself running three hours behind and this felt very stressful. The patients weren’t satisfied, either. I had to cut them off and run to the next room to see the next patient. I hated to do that.” After restricting his practice to chronic fatigue patients in 1987, Goldstein then encountered a new problem: “…It used to take two or three months to get an appointment to see me…that was aggravating for patients and me, it made all of us unhappy,” he recalls. “The good news is that it now takes two to three weeks to see me.”
Both Crook and Goldstein lament the fact that insurance reimbursement for CFIDS patients is very poor or non-existent. “This is another stressor,” says Dr. Goldstein. “By the time they reach my office, patients are often down and out, they’ve been abandoned by their insurance companies…they’ve always exhausted orthodox resources, they’ve seen ten or twelve doctors and I’m at the end of the funnel.” Coming from out of town or other countries, Goldstein’s patients typically schedule appointments with him over the course of a week. “After a week, 75 to 80 percent are between significantly improved and almost all better,” he claims. After the third visit, however, the improved patients often sadly announce that they can’t afford to continue treatment due to lack of support from medical insurance companies. Consequently, Goldstein makes the personal sacrifice of seeing about one quarter of his patients for free, or for a nominal amount, such as ten or twelve dollars a visit. His exceptional actions are motivated by compassion and a desire to heal the afflicted. “I do this…even though I’m making less than half of what I was making when I was in family practice…because I know if I stop treating these people, I’m condemning them to a life of horror.”
Because the patients seen by Goldstein are frequently in desperate physical and mental shape, the drama quotient in his practice runs at a high pitch. Almost all of the patients he sees have been on anti-depressants, or are presently on anti-depressants. Many of them have also undergone electroshock therapy by the time they reach him. A physician treating cases like these must chart his own course: there are no reference books to consult for guidance on how to manage these extreme cases. According to Goldstein, none of them yet cover the complexities of CFIDS including its various neurological or psychiatric elements, such as severe depression.
With great deliberation, Dr. Goldstein “must carefully weigh each case to determine what is a scientifically rational treatment. I consider all the risks and the benefits,” he explains. “If there is an adverse outcome, I’m a lot more exposed, more potentially vulnerable.” Because Goldstein specializes in treating patients who have never been helped by other doctors and medicines, he claims, “There is a big potential legal risk associated with every patient I treat…” Moreover, he observes, “Treating severely depressed patients involves a big risk among certain patients for suicide. This is terribly sad for the patient, and for the doctor.” Goldstein reports that he receives about two or three calls each week from people claiming that they’re going to kill themselves if they can’t see him as soon as possible. Fortunately, no one has ever done this after calling him. “I often talk to people who are at their wit’s end and I help them calm down and schedule an appointment for them.”
A few of his patients, however, have broken under the stress of living with chronic fatigue. “About three patients I’ve seen have returned to their homes and were unable to find treatment and so committed suicide,” he laments. “As a physician, this is very hard to take, because I know I can help people.” About one or two times a week, a new patient proclaims, ‘You’re my last hope. If you can’t help me, I’ll kill myself.’ Oftentimes after Goldstein successfully treats a patient, they’ll tell him, “If you hadn’t been able to help me, I would have killed myself.”
The satisfaction derived from healing the sick, coupled with the enormous gratitude he receives, inspires Dr. Goldstein’s remarkable commitment to CFIDS patients. Although he says he works about seventy hours a week and doesn’t get to see his family enough, “I keep on going because it is so satisfying to help people feel better. Most people who come to me feel better within one to three days, and sometimes it may take a month or two,” he says. “Imagine how it feels to give a patient some medicine that you think will help them and hear them tell you a half an hour later that they feel their life has changed. To see that happen to a patient is completely gratifying.”
See related article(s): Coping with CFIDS
For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy known as cognitive behavioral therapy. The problem was that the evidence doesn’t support these treatments.
This summer, after years of resisting pleas from patients, advocates, and clinicians, the CDC quietly dropped the treatment recommendations from its website. Its decision represents a major victory for the patient community — and for science. But the country’s lead public health agency still has a long way to go to meet its responsibilities to the estimated 1 million Americans with this disease.
Exercise and psychotherapy might sound like the most benign of recommendations. But the hallmark symptom of chronic fatigue syndrome (also called myalgic encephalomyelitis, or ME/CFS) is that overexertion triggers relapses that can leave patients much, much sicker, as the Institute of Medicine documented in a landmark 2015 report. So a steady increase in activity can easily cause further harm, not benefit. In multiple surveys, more patients report getting worse, not better, from these “graded exercise” programs.
The theory underlying the two discarded treatments arose in earlier decades when the medical and scientific communities largely dismissed the devastating illness as illusory or psychological. According to that theory, such patients harbor mistaken beliefs that they suffer from an actual physical disease. As a result, they remain sedentary out of a misguided fear that activity will make them worse. They then develop severe deconditioning, perpetuating their symptoms.
However, more recent studies from Stanford, Columbia, Cornell and elsewhere have demonstrated that ME/CFS patients suffer from immunological, neurological, and other systemic dysfunctions. And scientists have reported that the bodies of ME/CFS patients generate energy inefficiently if they push beyond their limited capacities.
Moreover, the key piece of evidence the CDC once cited to support its recommendations of exercise and psychotherapy has been debunked.
That evidence was a multimillion-dollar British study called the PACE trial, the largest ever of the illness. The first results appeared in the Lancet in 2011, with other findings published in Psychological Medicine in 2013 and many other journals. But the trial had a host of flaws that render its reported results nonsensical and uninterpretable. Most remarkably, the investigators relaxed their outcome measures so dramatically during the trial that participants could deteriorate during treatment on the key measure of physical functioning and still be declared “recovered.” Because of these changes, the findings were far more impressive than those the investigators would have obtained using the methods they originally proposed, as reanalyses of the trial data have shown.
The larger scientific community is up in arms over the problems with PACE. Earlier this year, more than 100 experts signed an open letter to Psychological Medicine (orchestrated and signed by one of us ) stating that the trial’s flaws “are unacceptable in published research” and “cannot be defended or explained away.” The letter requested immediate retraction of the claim that patients “recovered” from the treatments. The journal refused the request.
Yet the trial and its claims remain hugely influential. In the U.S., Kaiser Permanente, the Mayo Clinic, and WebMD all continue to promote the therapies. So does UpToDate, a popular decision-making tool for clinicians. In the United Kingdom, graded exercise and cognitive behavior therapy continue to be the most widely offered treatments for the illness through the National Health Service system. However, the country’s National Institute for Health and Care Excellence, which creates clinical guidelines that are widely followed, recently announced that it will be conducting a “full update” of its current recommendations, citing the CDC’s decision as one reason for the update.
Despite the significance of the changes, few medical professionals are aware the CDC has dropped the exercise and psychotherapy recommendations. Nor do they know about the extreme care with which people with ME/CFS need to regulate their activity. If your doctor were to diagnose you with this condition today, the odds are good that you’d be advised to exercise your way out of it and to consult a psychotherapist.
While the CDC deserves credit for having removed information based on bad science, that alone is not enough. The agency must also undo the damage it has caused.
First, the CDC needs to acknowledge that it got things wrong. So far, the agency has stated in response to questions that the changes were made because “there has been confusion about what we recommend related to exercise and therapy,” and the agency had not intended to recommend the PACE trial treatments despite using identical terminology. Given that ME/CFS advocates lobbied the CDC for years specifically about the problems with recommending these therapies, that explanation is hard to take seriously. An honest acknowledgement of error will go far toward reestablishing trust with the ME/CFS patient community.
Second, the CDC must actively disseminate the news that it no longer recommends these two ineffective and possibly harmful therapies and that no legitimate evidence supports their use. This should be part of a muscular plan, coordinated with the National Institutes of Health and other agencies, to counter the prevalent myths about ME/CFS among doctors, other health care providers, and the general public.
Third, the agency needs to reach out directly to health care and medical organizations, such as Kaiser Permanente and the Mayo Clinic, to urge them to stop recommending the treatments and ensure that the information they provide is truly up to date. That outreach should include the UK’s National Institute for Health and Care Excellence.
For decades, the ME/CFS patient community has been waiting for the CDC to get this right. The agency has finally taken a step in the right direction. Now it needs to redouble its efforts to find legitimate answers to the many outstanding questions about the illness and to investigate treatments that might actually work.
Julie Rehmeyer is a contributing editor to Discover magazine and author of “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand,” a memoir describing the science, history, and politics of chronic fatigue syndrome. David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME/CFS patient community generously donated to a crowdfunding campaign in support of Tuller’s position at Berkeley.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
What is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is persistent and crippling fatigue (exhaustion) lasting 6 months or longer. People living with ME/CFS often experience other symptoms, like unrefreshing sleep and muscle aches. The condition is also sometimes called chronic fatigue syndrome.
Doctors do not know what causes ME/CFS, and there is no cure. You may be able to manage symptoms with cognitive-behavioral therapy, exercise, and medications, like antidepressants and sleep aids. The goal of treatment is to make symptoms as manageable as possible to increase your quality of life.
Who is most at risk for getting myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
Women are more likely than men to develop ME/CFS. Young children and teenagers can develop ME/CFS, but the syndrome is much more common in adults.
How common is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
The number of people with ME/CFS is not clear; some estimates put the number at 1 million people in the US, while another estimate is as high as 2.5 million people. Many of these individuals have not received a diagnosis, even though they live with this condition.
What are the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
For many people, the symptoms of ME/CFS resemble other diseases, like influenza. Symptoms may come and go over time and may increase or decrease in severity. ME/CFS symptoms vary widely from person to person.
Many of the symptoms of ME/CFS make daily life difficult. These symptoms include:
- Severe fatigue lasting at least 6 months that does not improve with rest or sleep
- Difficulty sleeping
- Flu-like symptoms, including swollen lymph nodes (small immune system structures that filter harmful substances), headaches, and joint pain
- Cognitive (thinking) difficulties, including attention and memory problems
- Muscle aches
Less common symptoms of ME/CFS include:
- Problems with vision
- Night sweats
- Irritable bowel, an intestinal condition causing painful bloating, gas, constipation and diarrhea
- Psychological (mental health) issues, including mood swings, irritability and anxiety
- Tingling or numbness in the feet, hands or face
For many people, ME/CFS symptoms get worse following physical exercise or strenuous mental exertion. In some cases, orthostatic intolerance (symptoms that get worse if you stand or sit upright) causes dizziness, weakness, and fainting.
What causes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
Doctors do not know what causes ME/CFS.
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Q1: How do you differentiate chronic fatigue syndrome from other factors that contribute to fatigue?
The name Chronic Fatigue Syndrome (CFS) suggests that the fatigue is chronic and that it does not come and go the way the rest of us experience normal fatigue. Chronic Fatigue Syndrome usually results from never getting restful sleep and usually waking up tired. Several underlying diseases may also lead to the problem: an autoimmune connective tissue disease (Lupus and Lupus-like diseases), a hormone disorder (low thyroid values or low cortisone values or low sex hormone values), a chronic infection (Tuberculosis, blood infections, chronic viral infection, chronic urinary tract infection), chronic pain that keep you from getting restful sleep of any cause, chronic immune deficiencies (low gamma globulin levels), chronic vitamin or mineral deficiencies (b12, folate, magnesium and others). These conditions can eventually lead to the equivalent of a sleep deprived state and you mind becomes confused, disorganized, and tasks you easily did before become very difficult. For example, math majors can have difficulty balancing their checkbooks.
Q2: How would someone be tested for chronic fatigue syndrome?
There is no specific diagnostic blood test or imaging study. CFS is a clinical diagnosis where a previously productive person who is not mentally ill becomes chronically tired and disorganized and sleeps poorly. We have to be sure that they do not have something obviously correctable and if not, try various remedies to see if they can be helped to get better.
Q3: What are the symptoms of chronic fatigue syndrome?
Fatigue, insomnia, wakes up tired always, disorganized; has difficulty getting things done they could easily do before.
Q4: How is CFS related to rheumatology?
Some doctors believe that lack of restful sleep leads to trigger point tenderness and chronic muscle and joint pain also know as fibromyalgia. It is also believed that CFS represents the worst cases of fibromyalgia in which the patients not only have chronic pain, but because they are so deprived of restful sleep that they also become disorganized and can’t do many things that they were good at before. If you can restore their normal sleep wake cycle, over time some can recover. Sometimes other co-existing medical conditions also need to be fixed in order to restore patients back to the original abilities.
Q5: What are common treatments for chronic fatigue syndrome?
Medications and supplements that can help to fight insomnia, reduce musculoskeletal pain, fight depression and correct underlying medical illness. These can include vitamin b12, thyroid hormone and cortisone if appropriate, antibiotics if infection is present, gamma globulin shots or infusions if immune deficiency exists. If fibromyalgia exists, the FTA-approved drugs are Cymbalta and/or Lyrica. No one has the magic bullet medication for all patients with fibromyalgia, and about 20% of the patients struggle to get completely well despite our best efforts. It is important to consult with your physician before starting any new medications or supplements.
Dr. Whitman, an experienced rheumatologist, has an active clinical practice treating patients with a variety of musculoskeletal and autoimmune diseases. Dr. Whitman brings more than 30 years of experience and an extensive knowledge base to HSS.