What Can I Do To Cope With Me/cfs
Talking about your feelings with a friend or family member can help. Sometimes it also helps to talk with people who are going through the same thing. Consider joining an ME/CFS support group. See the “ME/CFS Organizations” section at the end of this fact sheet for a list of organizations that offer additional information on ME/CFS and can help you find ME/CFS support groups.
Conservation Of Energy And Gentle Exercise
To avoid overexertion, daily activities should be prioritised so the most tiring tasks are done at the best time of the day. Plan to have a quiet day after a busy one. Resting regularly during the day for even brief periods can be helpful.
Unlike depression, where exercise may help to alleviate symptoms, exercise may worsen symptoms for people with CFS. That doesn’t mean exercise should be avoided – instead, it should be done gently and not all at once.
A physical therapist can help determine what exercises are best, gradually increasing the level of exercise over time. A gentle exercise programme may begin with range-of-motion and stretching exercises for just a few minutes a day.
Treatment Of Chronic Fatigue Syndrome
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Acknowledgment of patient’s symptoms
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Sometimes graded exercise, limited to avoid a setback
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Drugs for depression, sleep, or pain if indicated
To provide effective care to patients with CFS, physicians must acknowledge and accept the validity of patients’ symptoms. Whatever the underlying cause, these patients are not malingerers but are suffering and strongly desire a return to their previous state of health. For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.
If these measures are ineffective, hypnotic drugs and/or referral to a sleep specialist may be necessary. Patients with pain widespread tenderness of muscles, areas around… read more ) can be treated using a number of drugs such as pregabalin, duloxetine, amitriptyline, or gabapentin. Physical therapy is also often helpful. Treatment for orthostatic hypotension Treatment Orthostatic hypotension is an excessive fall in blood pressure when an upright position is assumed. The consensus definition is a drop of > 20 mm Hg systolic, > 10 mm Hg diastolic… read more may also be helpful.
Unproven or disproven treatments, such as antivirals, immunosuppressants, elimination diets, and amalgam extractions, should be avoided.
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What Does It Feel Like When You Have Chronic Fatigue Syndrome
Short-term fatigue, or a reduced ability to engage in mental or physical activity, is a typical experience that everyone goes through at one time or another . Harvard Health Publishing says that everyone goes through short periods of time where they feel low on energy a day or week, for example. In fact, according to a 2022 article published in the British Medical Journal Best Practice, fatigue is a popular complaint with an estimated 4.3% to 21.9% prevalence in the global population.
There are often logical, immediate explanations for short-term fatigue and solutions. Maybe you had a bad night’s sleep, have an extra stressful work week, or have been eating poorly . Getting better sleep, managing stress, or improving diet might relieve these causes of your short-term fatigue. However, long-term fatigue that prevents you from doing your regular day-to-day activities and even keeps you bedridden could be a sign of something more serious .
Etiology Of Chronic Fatigue Syndrome
Etiology of CFS is unknown. No infectious, hormonal, immunologic, or psychiatric cause has been established. Among the many proposed infectious causes, Epstein-Barr virus, Lyme disease, candidiasis, and cytomegalovirus have been proven not to cause CFS. Similarly, there are no allergic markers and no immunosuppression.
Some people who have recovered from COVID-19 infection COVID-19 COVID-19 is an acute, sometimes severe, respiratory illness caused by the novel coronavirus SARS-CoV-2. Prevention is by vaccination, infection control precautions Posttraumatic Stress Disorder Posttraumatic stress disorder is recurring, intrusive recollections of an overwhelming traumatic event recollections last > 1 month and begin within 6 months of the event. The pathophysiology⦠read more . In addition, in some patients COVID-19 seems to trigger typical CFS, but further study is needed to confirm this association and determine causality.
Various minor immunologic abnormalities have been reported. These abnormalities include low levels of IgG, abnormal IgG, decreased lymphocytic proliferation, low interferon-gamma levels in response to mitogens, poor cytotoxicity of natural killer cells, circulating autoantibodies and immune complexes, and many other immunologic findings. However, none provide adequate sensitivity and specificity for defining CFS. They do, however, underscore the physiologic legitimacy of CFS.
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How Can I Find Out If I Have It
The National Academy of Medicine has issued guidelines describing the combination of symptoms necessary for doctors to diagnose the condition. Unfortunately, there isn’t yet a diagnostic test that’s accurate enough to be useful.
Because extreme fatigue is a symptom of so many conditions, your doctor will want to rule out other conditions first, before considering a diagnosis of ME/CFS. You’ll need to get a complete checkup and talk with your doctor about all your symptoms.
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It Feels Like Im Seeing Everything From Underwater
Another thing Ive found useful in describing my symptoms to others is the use of nature-based metaphors. For example, I may tell somebody that my nerve pain feels like a wildfire leaping from one limb to another. Or I may explain that the cognitive difficulties Im experiencing feel like Im seeing everything from underwater, moving slowly and just out of reach.
Just like a descriptive part in a novel, these metaphors allow people to envision what I may be going through, even without having the personal experience.
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Caring For Someone With Me/cfs
Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS.
Everyone involved in supporting someone with ME/CFS needs to understand Post Exertional Malaise, which is an abnormal, biological response to exercise or activity. This means the patient will not be able to do all of the activities they used to be able to do, and will benefit from practical and emotional support. People with ME/CFS will each have different needs and preferences, so it is important to talk with them about how best to provide support. This may include help with daily routines, family life, accessing healthcare and other personal priorities.
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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Deterrence And Patient Education
Living with chronic fatigue syndrome can be stressful, as the symptoms can affect the quality of life. Most people are generally healthy and active before developing CFS, making it particularly distressing. The most crucial factor for patients to successfully cope with CFS is establishing a strong relationship with an experienced health care provider. Having a provider that patients can trust, who listens to them and understands that their symptoms are real, can be validating and helpful. While it is discouraging to know that there is no quick cure for CFS, an experienced provider can work with the patient to find ways to manage their symptoms and maximize their quality of life.
Discussing Treatment Options With A Doctor
The medical community differs over the exact treatment courses for those living with CFS. Youll need to work closely with a healthcare team to determine which symptoms are impacting your quality of life the most.
You may start with treatment of these issues and progress to others in time. Many treatment options are available, ranging from over-the-counter drugs to alternative therapies.
The most effective treatment for CFS is the one thats catered to you and your specific symptoms. A doctor may suggest a variety of treatments depending on what youre experiencing and what your treatment goals are.
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What Is The Latest Research On Me/cfs
Today, we have a better understanding of ME/CFS, but researchers are still searching for the cause. ME/CFS is sometimes seen in members of the same family, perhaps because of a genetic link. Researchers are also testing a variety of treatments for ME/CFS, including anti-viral medications and medications that affect the immune system.
Researchers also are looking at ways to help health care providers identify and diagnose ME/CFS more quickly. HHS currently supports a study led by the Institute of Medicine to recommend improved and updated criteria to help physicians make a diagnosis of ME/CFS. The IOM’s recommendations may also guide future research.
Can This Condition Be Cured
Not everyone makes full recovery but the majority of sufferers do improve with time. Moreover, symptoms of chronic fatigue syndrome fluctuate between mild to severe periodically. Reviews reports that younger people have higher and better chances of complete healing than adults. It means if treatment is done early enough, children can be cured and thus have a chance of leading a normal life.
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Other Treatment Options For All Patients
Ampligen , a drug therapy which is still experimental had the crowd buzzing about how effective it was. Users applauded the dramatic physical and cognitive symptoms improvements of the experimental drug. Although the drug is regarded as a miracle drug there were still few people who reported the drug did not work for them at all .
Intravenous saline, usually given to patients who crashed to help pick them up.
The antiviral or antibiotic medication the combination drugs has worked for so many patients.
Non-drug therapies Graded exercise therapy, chiropractic therapy, pacing, other physical exercises.
Why Is Food Important
A balanced diet is the main source of energy that is much needed to a person who is already feeling weak and tired. Eating small frequent meals was found to assist CFS patients as it fuels them up throughout the day without over-indulging them.
The truth is eating larger amounts can tire anyone sick or healthy because blood get directed away from the brain and limbs but to your stomach and intestines.
=> Have a look on our list of good foods to help you reduce fatigue !
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Graded Exercise Therapy Controversy
The PACE TRIAL
In 2005, patient recruitment began for the PACE Trial – Pacing, Graded Activity, Cognitive Behavioral Therapy, and randomized Evaluation, which was conducted in the UK under the auspices of the UK Medical Research Council, Depart of Health and Social Care for England, Scottish Chief Scientist Office, and Department for Work and Pensions. The investigators were Peter White, a psychiatrist, Trudie Chalder, a professor of cognitive behavioral therapy, and Michael Sharpe, a professor of psychological medicine.
This study, which is the most well-funded single piece of ME/CFS research ever conducted, was designed to compare three different approaches to treatment:
1) Specialist Medical Care , which included the use of medications for symptoms management and instruction in avoidance of extreme activity or inactivity to SMC plus Adaptive Pacing Therapy , which is activity engagement limited by symptoms of PEM on one extreme and complete inactivity on the other
2) Informing the group that they were not ill, but rather deconditioned and should gradually return to activities and that there was nothing preventing their recovery and
3) CBT and GET with the premise that deconditioning, dysfunctional cognition, and false ideas were the source of their symptoms and functional limitations. The GET was to be advanced in a structured manner with the ultimate goal of the patients participating in regular aerobic exercise.
The consequences of the PACE Trial were:
What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome is a complicated disease for doctors to diagnose and even fully understand.
CFS is a chronic condition that makes people feel very tired and weak. They can also have headaches, dizziness, or other physical symptoms. Sometimes they have emotional symptoms too, like anger or sadness.
Different people with CFS can have different symptoms. Many CFS symptoms are similar to those of other health conditions, like mono, Lyme disease, or depression. And the symptoms can vary over time, even in the same person.
This makes treating the illness complicated. No single medicine or treatment can address all the possible symptoms.
CFS is sometimes called myalgic encephalomyelitis . Myalgic means muscle aches. Encephalomyelitis means that there may be inflammation in the brain or spinal cord.
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What Are The Symptoms Of Me/cfs
The key symptom or feature of ME/CFS is called post-exertional malaise . This means that your symptoms get worse after exercise or mental effort and dont improve after sleep or rest. PEM can be very disabling and can reduce your ability to function during regular daily activities. PEM is also common if you have long COVID.
ME/CFS may start suddenly or gradually over months or years. The level of activity that triggers your PEM will vary from person to person and can depend on how severe your condition is. For example, if your ME/CFS is relatively mild, you may experience PEM after going for a walk or a jog, but if your ME/CFS is severe, just reading a book or brushing your teeth could bring on your PEM. Your PEM may appear immediately after activity or may sometimes be delayed by up to 3 days. It can last for 24 hours or 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 common symptoms of ME/CFS, that may also increase with PEM include:
- thinking problems, loss of memory or poor concentration
- gastrointestinal changes such as nausea, constipation or diarrhoea
- sensitivities to light or noise, food, medicines or chemicals
- problems with temperature regulation
Everyone is different, so you might experience only mild symptoms, or you might develop more severe symptoms.
What Causes Me/cfs
If you can understand Chronic Fatigue Syndrome, you can understand any illness. Dr. Paul Cheney
Although ME/CFS has inspired thousands of scientific and popular publications, its cause remains, as yet, unidentified. The debate surrounding the pathogenesis of ME/CFS has raged for decades.
Some support the idea that a single pathogen produces the illness, while others maintain that ME/CFS is environmental, the result of exposure to a number of toxins that damage the nervous and immune systems.
Other proposed causes have been: bacterial infections, such as mycoplasma, exposure to mold, and genetic factors.
Each of these theories generates its own research, its own spate of tests, and its own treatment protocols.
ME/CFS is a complex illness, which makes the search for a cause laden with difficulties. However, enough is known of the illness to establish some basic parameters. Any proposed cause for ME/CFS must take into account the following: 1) multisystem symptoms, 2) chronic illness, and 3) outbreaks.
While most researchers tend to focus on the range of symptoms and the fact that symptoms are chronic, they often forget the infectious aspect of ME/CFS. Ultimately, any theory attempting to explain how ME/CFS occurs in an individual must also account for why it occurs in groups.
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How Is Cfs Treated
Theres currently no specific cure for CFS.
Each person has different symptoms and therefore may require different types of treatment to manage the disorder and relieve their symptoms.
Work with your team of healthcare providers to create the best treatment plan for you. They can go over the possible benefits and side effects of the therapies with you.
Mental Health Support And Me/cfs
ME/CFS is not a psychological disorder. However, living with a chronic illness is challenging, especially one that involves missing out on normal life activities, and this may lead to mental health problems like anxiety or depression.
Speaking with a qualified mental health professional who understands the challenges of living with ME/CFS can be very helpful. They can help with things such as coping with changes to schooling, employment or social activities, and symptoms such as difficulty with sleep or pain. With the availability of Medicare rebates for telehealth, many mental health practitioners now offer remote consultations which makes healthcare more accessible for those who are housebound or bedbound with ME/CFS.
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Children Young People And Me/cfs
ME/CFS can affect people of all ages, including the very young. Young people with ME/CFS, especially children under the age of ten, might have trouble knowing or articulating that something is wrong. They may not realise that their loss of stamina, or other symptoms they are experiencing, are not normal. Alternatively, they may not have the words to describe what they are feeling.
For both younger children and teenagers, schooling can be affected but ME/CFS is not school refusal. While school refusal can often be accompanied by physical complaints , and these complaints may tend to disappear when the young person stays home, the pattern is different with ME/CFS. In a young person with ME/CFS, some symptoms never ease and symptom exacerbation is triggered by activity. In ME/CFS, symptoms are likely to be worse after school attendance, and can reduce with pacing and rest, which includes time away from school or during holidays.
Some young people with ME/CFS can continue to attend school, and others may be too unwell for regular classroom attendance. Parents, healthcare providers, schools and the child or teenager need to work together to come up with a plan for the young persons continued education. This plan needs to take into account the energy limits of ME/CFS. Being creative and flexible is key and might include things like fewer subjects or school from home.
