What We Knew Then
First of all, the textbooks of medicine didnt describe an illness like this. In addition, all the usual laboratory tests to screen for various diseases came back normal. At this point, a doctor has two choices: decide to believe the patient and keep searching to find what is wrong, or to tell the patient, There is nothing wrong. Indeed, some doctors seeing people like my patient did just that, adding insult to injury.
Fortunately, many physicians and biomedical scientists around the world became interested in this illness, and over 9,000 scientific studies have been published in the past 35 years. The Institute of Medicine has concluded that the condition, now called myalgic encephalomyelitis/chronic fatigue syndrome is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients. It affects up to 2.5 million people in the United States, and generates direct and indirect expenses of approximately $17 to $24 billion annually.
How Your Family Can Help
Always remember that youre not alone. Support from your family can make your condition easier to bear by spending time with you on good days as well as the bad days.
I try to make family members a partner in treatment, he says. When you just want to spend the day in bed watching TV because of fatigue or pain, a family member can encourage simple, fun activities to help get you moving.
Whether your diagnosis is chronic fatigue or fibromyalgia, a doctors role in treating the disease small. A doctor is there as the coach and can help you with the first 10% to 15% of improvement, while you have to help yourself manage the remaining 85% to 90%.
If youre suffering with chronic pain and/or fatigue, talk to your doctor. A diagnosis can put you in a better position to manage your symptoms even if there are still some mysteries surrounding your disease.
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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.
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The Multiple Sclerosis / Chronic Fatigue Syndrome Study
Theyre mumbling that HIV/AIDS is quite treatable? I think they would agree that multiple sclerosis is not. Wouldnt they, like anyone, quail at the idea of having MS?
Hit them with a study showing that multiple sclerosis patients were twice as functional, experienced considerably less pain and had greatly increased vitality compared to people with ME/CFS All this in a disease known for the high rates of fatigue it produces.
Prevalence And Clinical Features
It is difficult to establish the prevalence of CFS, since it depends on the diagnostic criteria used and the study population. Initial research suggested a prevalence between 0.002% and 0.04%. . However, latest epidemiological studies in the USA and in the United Kingdom show prevalence rates ranging from 0.007% to 2.5% of the general population. These rates increase up to 0.5-2.5% when the population assessed includes individuals seen in primary care facilities instead of the global population. In the United Kingdom, according the Oxford criteria , the prevalence in the global population has been estimated in 0.6%. In Japan the prevalence has been found to be 1.5% in the general population. Thus, the prevalence in the general population appears to be much higher than previously indicated. Even with strict criteria for CFS, it is estimated that approximately 1% of the adult population experiences this condition. Interestingly, a large part of this group remains unrecognized by the general practitioner. A striking similarity in lifestyle pattern between SF, CF and CFS calls for further research.
CFS mainly affects young adults from 20 to 40 years, although the symptoms also exist in childhood, adolescence and in the elderly . It has a 2-3 times higher prevalence in women than in men. No evidence exists showing that any socio-economic group is more affected than others .
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Causes Of Extreme Fatigue
Many people struggle with fatigue, which has many causes some obvious, others not so much. Causes of chronic fatigue include poor quality or not enough sleep, a bad diet, not exercising, and metabolic and hormonal imbalances. It becomes a vicious cycle when fatigue sets in and worsens your fatigue.
But you can manage your fatigue when you first figure out the root causeor causes of feeling tired all the time. Some reasons why you might feel extreme fatigue include:
- Adrenal burnout
- Toxicity including things like environmental pollutants, but also less-obvious toxins, including mold, mercury from amalgams, and electromagnetic fields from electronics.
This list goes on, and oftentimes multiple factors create or worsen fatigue. On the other hand, chronic fatigue might result from one primary reason, like poor sleep, stress, a bad diet, or not getting the right nutrients. These five strategies may help you boost your energy.
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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:
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What Are The Symptoms Of Chronic Fatigue
Among the symptoms are severe fatigue that comes from work, physical activity, shopping or something as simple as showering. Other symptoms include sleep problems and muscle pain and aches.
Fatigue is a vague symptom. It could be coming from a lot of different things, Dr. Zaidi said. We have to properly investigate how long its been occurring, and rule out secondary causes. Could it be sleep apnea, depression, a thyroid problem, could it be anemic? Those are to name a few.
Dr. Zaidi recommends talking to your doctor about your symptoms and have the appropriate bloodwork done to eliminate other causes.
What Else Should I Know
Having chronic fatigue syndrome can be hard. But for most people, the symptoms are most severe in the beginning. Later, they may come and go. Teens with CFS generally get better faster and recover more completely than adults do. Most teens get partial or full recovery within 5 years after symptoms began.
Many new and experimental treatments for CFS are available. But don’t use any unproven treatments until checking with your doctor.
CFS is a misunderstood illness. But scientists continue to learn about it through research and clinical trials. They’re trying to better understand its symptoms and causes in kids and teens.
Good medical care and coping techniques are the keys to helping your child manage chronic fatigue syndrome. You can find more information and support online at:
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How Is Me/cfs Diagnosed
Because many symptoms of ME/CFS are also symptoms of other illnesses or side effects of medicine, your doctor will need to do physical exams and tests to help determine if you have ME/CFS. There are no standard lab tests to diagnose ME/CFS.
If you think you may have ME/CFS, see your doctor. Your doctor may:
- Ask you about your physical and mental health.
- Do a physical exam.
- Order lab tests based on your symptoms, such as urine and blood tests, which will tell your doctor if something other than ME/CFS might be causing your symptoms.
- Order tests that check for problems found in people with ME/CFS.
- Classify you as having ME/CFS if:
- You have the main symptoms of ME/CFS, including extreme fatigue or exhaustion that does not go away and that prevents you from doing the things you want and need to do for you and your family exhaustion that comes after mental or physical exercise sleep problems and pain AND
- You have had the extreme fatigue and other symptoms for 6 months or longer AND
- You and your doctor cannot find another explanation for your symptoms.
The process to make a final diagnosis of ME/CFS can take a long time, so try to be patient. It is usually best to develop a relationship and follow up often with one doctor so that he or she can get to know you and see how you respond to treatment over time.
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Where Can I Get Support
ME/CFS can have a significant emotional and financial impact on your life. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
Information on entitlements to welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E. They also offer resources and services for children and young people affected by ME/CFS and their families.
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What Is The Outlook
The long-term outlook varies from person to person. Although some people recover or have a long period of remission, many will need to adapt to living with /CFS. The outlook is better in children and young people than in adults.
CFS affects everyone differently and its impact varies widely. For some people symptoms still allow them to carry out some activities, whereas for others they cause severe impacts on different aspects of the lives of people with CFS and their families and carers, including activities of daily living, family life, social life, emotional well-being, work and education.
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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.
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How Do I Know If I Have Chronic Fatigue Syndrome
As the pandemic continues, some COVID-19 survivors are experiencing a variety of health issues such as severe exhaustion, headaches, muscle pain and cognitive issues. These experiences have some medical professionals believing there may be a connection between COVID-19 and chronic fatigue syndrome .
We know that viruses have been implicated in chronic fatigue syndrome, said Syed Zaidi, MD, a family medicine provider with OSF Medical Group.The diagnosis is more than six months of profound chronic fatigue, so do we have patients coming near that six-month point? They got this early and are just recovered from COVID, but their life still isnt where it used to be and that is where this conversation is coming from.
What Are The Symptoms Of Myalgic Encephalomyelitis/chronic Fatigue Syndrome
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
Less common symptoms of ME/CFS include:
- Problems with vision
- Irritable bowel, an intestinal condition causing painful bloating, gas, constipation and diarrhea
- Psychological 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 causes dizziness, weakness, and fainting.
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What Is The Treatment For Chronic Fatigue Syndrome
There is no known cure for chronic fatigue syndrome, although symptoms can be self-managed with support and advice. When CFS/ME is suspected, you should be given individual advice about managing your symptoms. This advice will include:
- Not to use more energy than you feel you have. Try to manage your daily activity and do not push through your symptoms.
- Rest and convalesce as you need to. This might mean making changes to your daily routine, including work, school and other activities.
- Maintain a healthy balanced diet, with adequate fluid intake.
You should be referred to an CFS/ME specialist team to confirm your diagnosis and develop a care and support plan.
Children and young people with suspected CFS/ME should be referred to a paediatrician for further assessment and investigation before referral to a paediatric CFS specialist team to confirm the diagnosis and develop a care and support plan.
You should be referred to a physiotherapist or occupational therapist working in an CFS specialist team if you:
- Have difficulties caused by reduced physical activity or mobility.
- Feel ready to progress your physical activity beyond your current activities of daily living.
- Would like to incorporate a physical activity or exercise programme into managing your CFS/ME.
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
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Home Remedies And Lifestyle Changes
Making some lifestyle changes may help reduce your symptoms.
Limiting or eliminating your caffeine intake can help you sleep better and ease your insomnia. You should limit or avoid nicotine and alcohol too.
Try to avoid napping during the day if its hurting your ability to sleep at night.
Create a sleep routine. Go to bed at the same time every night and aim to wake up around the same time every day.
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Housebound Or Bedbound With Me/cfs
About 25% of people with ME/CFS are housebound or bedbound. Those who are housebound may be able to undertake minimal daily tasks for themselves, such as brushing teeth, cooking or using a computer for short periods of time, but they have to pace their activity and often use aids to help them . They are unable to leave the house, often because this requires more energy than they have available. When they do leave the house, they often need mobility aids such as a wheelchair or mobility scooter, or other assistance . Recovery from a trip out of the house can take days, or longer.
Some people are so severely unwell that they are bedbound some or all of the time. The most severely unwell may be unable to undertake even simple tasks, like eating or going to the toilet by themselves. They may require additional medical devices, such as feeding tubes, to help them get enough nutrition and fluids, and can be totally dependent on carers.
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Is There Any Treatment
There is currently no cure for CFS. The therapies for this disorder are directed at symptom relief. It is important to maintain good health by eating a balanced diet and getting adequate rest, exercising regularly without causing more fatigue, and pacing oneself because too much stress can aggravate the symptoms of CFS. Working with a physician to develop a program that provides the greatest benefits also will help in reducing frustration with the illness.
Non-pharmacological therapies include acupuncture, aquatic therapy, chiropractic, cranial-sacral, light exercise, massage, self-hypnosis, stretching, tai chi, therapeutic touch and yoga. Certain psychotherapies such as cognitive behavioral therapy also have shown promise for facilitating patient coping and for alleviating some of the distress associated with CFS.
In pharmacological therapy there is a variety of medications that can relieve specific symptoms. It is important to begin with low doses and to escalate the dosage gradually as necessary.
Some CFS patients may also find it therapeutic to meet with other people who have this illness, and this can be accomplished by joining a local CFS support group. Support groups are not appropriate for everyone, and may actually add to their stress rather than relieving it.
