Impact And Prognosis Of Me/cfs
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- Mild: mobile and self-caring may continue working but will have reduced other activities
- Moderate: reduced mobility, restricted in instrumental activities of daily living, needs frequent periods of rest usually not working
- Severe: mostly housebound limited to minimal activities of daily living severe cognitive difficulties may be wheelchair dependent
- Very severe: mostly bedridden unable to independently carry out most activities of daily living often experience extreme sensitivity to light, sound, and other sensory input
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Depression Stress And Anxiety
Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.
Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patients psychological condition, they may recommend seeing a mental health professional.
Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies . These can reduce stress and anxiety, and promote a sense of well-being.
Getting Older And Me/cfs
There is very little information on getting older and ME/CFS, however people can develop ME/CFS at any age. Additionally, all of the strategies such as pacing to reduce PEM and managing symptoms still apply. As people age, other problems with their health may also arise, so discussing any new symptoms with their doctor important.
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So What Should You Do To Overcome This Debilitating Illness
Most readers of my blog will have a strong bias towards alternative/natural medicine over conventional/Western medicine. Im of the mind that this should not be an either-or debate. Instead, alternative and conventional medicine should work together. They fill in each others deficiencies very well. In the treatment of chronic fatigue syndrome, youre going to want a diverse point of view. Combining alternative and conventional therapies will be your best option.
In this post, Ill describe the most beneficial treatment options from a conventional perspective the treatments you need to try and the ones you should absolutely avoid. And in the second post of this series, Ill describe the most beneficial therapies from a functional or natural medicine perspective. I believe the ideal treatment plan for chronic fatigue syndrome involves a combination of therapies. In all likelihood, chronic fatigue syndrome describes many different conditions.
For you, fatigue could be caused by a viral infection like mono. Your friends fatigue could be caused by her hormones, her genetics, or even her gut. Exploring a multitude of treatment options is your best bet to regaining your energy.
Summary Of The Conventional Treatment Plan For Chronic Fatigue Syndrome
Lets assume the symptoms of your chronic fatigue include fatigue, sleep issues, pain, and depression/anxiety. With this symptom cluster, you may see four different doctors. A rheumatologist for your pain. A psychiatrist for your depression/anxiety. A sleep specialist for your insomnia. And your family physician. Each doctor will likely prescribe a different medication designed to address one of your symptoms. In this example, you may end up with prescription pain killers, sleeping pills, and an antidepressant.
There is no research done on either the long-term effects of taking those medications. Or, how those medications may interact with each other. And my greatest frustration is that there is no over-arching treatment plan. The treatment is to take these medications forever. This is not how you should treat chronic fatigue syndrome.
Note: this is the first article in a series. Once youre finished this article, be sure to check out part II The best ways to treat chronic fatigue through an alternative or holistic medical framework.
Now, I want to hear from you!
What conventional therapies increased your energy? Leave your answers in the comments section below!
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How Is Chronic Fatigue Syndrome Diagnosed
CFS diagnosis depends on two criteria:
A specific treatment for CFS has yet to be proven effective. Vitamin supplements and medicines have some benefit. Many treatments just relieve the symptoms of CFS.
How Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome Treated
There is no cure for ME/CFS. Treatment goals include managing symptoms and returning you to a higher quality of life. Some people arenât able to regain the level of health and function they had before their diagnosis.
First, your doctor works with you to determine which symptoms cause the most difficulty. Together, you will address those symptoms immediately.
Counseling is helpful for many people with ME/CFS. This type of treatment helps people better tolerate symptoms by changing thoughts and behaviors. Your doctor may prescribe medications, like antidepressants or sleep aids, if your symptoms are especially severe. These medications can relieve symptoms like unrestful sleep for some people living with ME/CFS.
Before prescribing sleep aids, however, your doctor may provide suggestions for improving sleep without drugs. For instance, he or she might suggest that you visit a sleep specialist. Other tips include:
- Develop a regular bedtime routineâgo to bed and wake up at the same time each day.
- Do not nap for more than 30 minutes total during the day.
- Use your bed and bedroom only for sleeping and sex. Take out all electronics.
- Avoid eating large meals before you go to bed also avoid alcohol and caffeine.
- Do your exercising at least 4 hours before you go to sleep.
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What Are The Symptoms Of Me/cfs
The most common symptom is ongoing, unexplained overwhelming tiredness or fatigue which worsens after exercise or mental effort. This is known as post-exertional malaise . The level of activity that triggers PEM will vary from person to person and can depend on how severe their condition is. PEM is sometimes delayed and can last for a few days. A more serious relapse can last for weeks or months.
A common misconception is that people with ME/CFS have chronic fatigue and are just very tired. Persistent and profound fatigue is just one symptom of ME/CFS.
Other symptoms may include:
Some people may experience only mild symptoms, but others may develop more severe symptoms.
How Is Chronic Fatigue Syndrome Treated
Treatment is determined by your healthcare provider and based on:
- Your overall health and medical history
- Extent of the condition
- Your tolerance for specific medicines, procedures, or therapies
- Expectations for the course of the condition
- Your opinion or preference
- Medicine, including corticosteroids, antidepressants, and others
- Light-intensity aerobic exercise
- Dietary supplements and herbal preparations
- Psychotherapy and supportive counseling
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Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Essentials Of Diagnosis And Management
- Alison C. BestedAffiliations
- Lily ChuCorrespondenceCorrespondence: Address to Lily Chu, MD, MSHS, Independent Consultant, 16 Lorton Ave, Unit 4, Burlingame, CA 94010.
- Nancy G. KlimasAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
- Jose G. MontoyaAffiliationsDr Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
- Irma R. ReyAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
Causes Of Chronic Fatigue Syndrome
Despite considerable research, the cause of chronic fatigue syndrome remains unknown. Controversy exists as to whether there is a single cause or many causes and whether the cause is physical or mental, but either way the symptoms are very real to the person.
Some researchers believe the syndrome ultimately will prove to have several causes, including genetic predisposition and exposure to microbes, toxins, and other physical and emotional factors.
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How Chronic Fatigue Syndrome Is Treated
There is no standard treatment for chronic fatigue syndrome, clinically known as myalgic encephalomyelitis/chronic fatigue syndrome . However, there are many options for managing symptoms and improving quality of life, including lifestyle changes, stress management, therapy, and medications. With the help of your healthcare provider and other caregivers, these can be tailored to your specific symptoms.
Verywell / Brianna Gilmartin
What Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome is persistent and crippling fatigue 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.
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Concluding Remarks And Future Directions
This review suggests that the beneficial effects of nutritional supplements are not random, but that their action is due to the removal of one of the causes of the CFS/ME. There is evidence that supplements may benefit CFS/ME patients therefore, nutritional supplements should be recommended, at least in CFS/ME patients with a biochemically proven deficiency. Studies investigating nutritional interventions in CFS/ME remain very limited most studies have had small sample sizes, and lacked long term followup . Despite the relative consistency in case definition, the studies differed with regard to inclusion and exclusion criteria and reporting participants sociodemographic characteristics and clinical features . This heterogeneity in study design makes the application of the findings to the clinical setting more difficult. Therefore, longerterm RCTs in homogeneous populations that use more specific case criteria are now warranted.
In agreement with several previous studies, pacing was consistently shown to be the most helpful treatment, CBT was useful for some patients but not all for all graded training may cause the condition to worsen. However, the results must be interpreted with care, as the participants are not a representative sample.
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How Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome Diagnosed
Your doctor diagnoses ME/CFS by performing a mental and physical examination. Doctors will ask about your medical history and order blood and urine tests to check for infection. In many cases, doctors refer people with suspected ME/CFS to other specialists to rule out other illnesses that could be causing symptoms.
For your doctor to diagnose ME/CFS, you must have these 3 symptoms:
- Severe fatigue lasting at least 6 months that does not improve with rest or sleep
- Difficulty sleeping
- Fatigue that gets worse after mental or physical exercise
Additionally, you must have at least 1 of the following symptoms:
- Orthostatic intolerance
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Symptoms And Signs Of Chronic Fatigue Syndrome
Before onset of CFS, most patients are highly functioning and successful.
Onset is usually abrupt, often following a psychologically or medically stressful event. Many patients report an initial viral-like illness with swollen lymph nodes, extreme fatigue, fever, and upper respiratory symptoms. The initial syndrome resolves but seems to trigger protracted severe fatigue, which interferes with daily activities and typically worsens with exertion but is alleviated poorly or not at all by rest. Patients often also have disturbances of sleep and cognition, such as memory problems, foggy thinking, hypersomnolence, and a feeling of having had unrefreshing sleep. Important general characteristics are diffuse pains and sleep problems.
The physical examination is normal, with no objective signs of muscle weakness, arthritis, neuropathy, or organomegaly. However, some patients have low-grade fever, nonexudative pharyngitis, and/or palpable or tender lymph nodes.
Because patients typically appear healthy, friends, family, and even health care practitioners sometimes express skepticism about their condition, which can worsen the frustration and/or depression patients often feel about their poorly understood disorder.
Other Lifestyle Changes To Manage Me/cfs
Other ways to manage ME/CFS include:
- equipment â some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study â when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There’s limited or no evidence to recommend:
- resting completely â there’s no evidence this helps
- complementary medicine â there is not enough evidence that it’s helpful for ME/CFS
You should not take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.
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Treatment Plans For Me/cfs
There’s no single way of managing ME/CFS that works for everyone, but there are a number of treatment options.
The National Institute for Health and Care Excellence says you should be offered a treatment plan tailored to your symptoms.
Your doctor should discuss all of the options with you, and explain the benefits and risks of any treatment.
They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.
You may need advice about making lifestyle changes, specialist treatments, or a combination of both.
If your symptoms are severe, your doctor should ask a specialist for advice.
Your treatment plan should be reviewed regularly.
Keep Track Of Your Symptoms And Their Onset
Tracking the frequency, timing, and severity of your symptoms might help your doctor better understand what youre experiencing. Tracking your activity level and symptoms can also help you draw connections and learn your limits so that you can reduce flare-ups.
When tracking your symptoms, remember to write down everything ailing you, not just fatigue. People with CFS/ME often also have issues with pain, cognition, such as memory and concentration, and sleep. You might also consider keeping a sleep diary, so your doctor can see how well youre sleeping and determine if sleep might play a role in your symptoms.
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The Wrong Way To Treat Chronic Fatigue Syndrome
Now you know the conventional medical therapies that are best suited to treat chronic fatigue syndrome. A lot of them dont have great research to support their use. So, be sure to have an in-depth discussion with your doctor. Discuss whether the potential side effects of the medication are worth it for the potential benefits.
There are other treatments that are often prescribed in conventional medical settings that are known to not be effective. And they may even have dangerous side effects. Below, I detail the conventional treatments of chronic fatigue that need to be avoided. These include:
- Graded exercise therapy
- Sleeping pills
Graded exercise therapy
Graded exercise therapy or GET as its commonly referred to is an exercise plan specifically for those with chronic fatigue syndrome. Most patients with CFS report something known a post-exertional malaise this is a feeling of exhaustion or tiredness following exercise/activity. GET was developed in hopes to improve CFS patients resilience to exercise programs.
Graded exercise therapy remains a common conventional treatment for chronic fatigue syndrome. Even though patients typically remark that GET makes their symptoms worse. Thankfully, new research confirmed what CFS sufferers had been saying all along GET does not work. And it may actually make your fatigue worse.
Do not include GET in your chronic fatigue treatment. Instead, follow the recommendations I lay out for exercising with fatigue here,here, and here.
What Are The Symptoms Of Chronic Fatigue Syndrome
Symptoms of CFS often mimic the flu. The following are the most common symptoms of CFS. However, each person may experience symptoms differently. Symptoms may include:
- Sensitivity to light
- Low-grade fever
- Depression
The symptoms of CFS may look like other medical conditions. Always talk with your healthcare provider for a diagnosis.
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How Does Me/cfs Affect People
ME/CFS affects different people in different ways, some more severely than others. There are four levels of severity of ME/CFS, which give an indication of the level of disability ME/CFS can create:
- mild: 50% reduction in pre-illness activity
- moderate: mostly housebound
- severe: mostly bedridden
- very severe: totally bedridden and need help with basic activities including nutrition and hydration.
The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. For some patients, their disease can worsen significantly with no known cause. Other patients have a fluctuating illness where they have better and worse periods, which last for months or years. It is unclear why this happens.
For most people, ME/CFS is a lifelong disease. Full recovery is rare and estimated at less than 10%. For some people with ME/CFS, as time passes and their disease improves, they will find they can do more, but it is a slow and gradual process. However, this is not the case for everyone. Some people find their disease worsens over time, others may remain somewhat stable. With support and pacing, people can often improve their quality of life.
Diagnostic Criteria For Me/cfs Using The National Academy Of Medicine Clinical Criteria
For a diagnosis of ME/CFS, the person must have the following three symptoms:
Diagnosis also requires at least one of the following two symptoms:
It is important to note that these are not the only symptoms of ME/CFS, just the minimum needed to meet the diagnostic criteria.
While diagnosis requires that a person has had symptoms continually for six months, early intervention with pacing and rest can help reduce symptoms, improve quality of life and reduce the risk of exacerbating the disease. Research suggests that patients who are able to pace their activity and not push themselves tend to do better in the long term. Pacing and rest can start even prior to an official diagnosis.
While there is currently no cure and no evidence-based treatments, it is important to find a doctor who is not only sympathetic to ME/CFS, but can work with you to help manage your symptoms.
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