Icipants Sampling And Recruitment
Participants were recruited from a specialist paediatric CFS/ME service. Adolescents were eligible if they had a diagnosis of CFS/ME, were aged 1217 years and self-identified as having used the internet for CFS/ME. Adolescents were excluded if they had insufficient proficiency in the English language to participate in an interview or if they were severely affected . Clinicians screened patients for eligibility, offered information sheets and took consent/assent to contact. The researcher contacted interested participants, and interviews were arranged at a time and location convenient to the participant . Written valid informed consent/assent was obtained prior to the interview. The interviewer was not previously known to the participant, and was independent of the clinical team that the participant was receiving treatment from.
Sampling was opportunistic insofar as it recruited eligible participants who were willing and able to take part. Recruitment ended when it was felt there was enough quality data to answer the research question, within the constraints of the study. Sample size was guided by the principle of information power and was reviewed during the process of analysis. Information power deems that smaller numbers are justifiable if the research question is narrow, if the sample is more homogeneous and if there is a good-quality dialogue.
Throw Her A Bone Now And Then
It might feel like your MIL is needy at times. She wants to rest, she doesnt want to dig the weeds today, work is too stressful for her, she wants to be in bed no later than 8:00 p.m. The list goes on and on. For goodness sake, throw her bone now and then! No. Scratch that. Throw her all the bones she wants and then some. I promise you the pay-off in terms of your health will be worth it.
Feeling Extremely Tired All The Time The Early Signs
The first sign of my faltering good health started to show itself about two and a half years into the job after a particularly stressful period in the workplace. I was fighting to show the changes I had made would bear fruit and struggling with the never ending office politics, constant company policy changes and brutal back stabbing in the office.
I knew my business strategies were right but I needed time for the changes I was making to flow through as a positive result and show up on the bottom line.
At first the only symptom I had was feeling a bit off and a general lack of energy. I didnt feel sleepy but felt as if my body lacked enough energy to get me through the day.
After work, I would arrive home and flop on to the sofa and remain there watching TV all night until it was time to go to bed. After a few weeks of feeling extremely tired all the time I visited my local GP as I thought a check up was in order.
My GP advised that I most likely was suffering from Post Viral Fatigue. Post Viral Fatigue? As far as I could tell I hadnt had any virus, so how could I have Post Viral Fatigue? This diagnosis didnt make any sense to me.
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How Will Me/cfs Affect My Quality Of Life
Not everyone will experience the same symptoms so itâs important not to compare people with ME/CFS. People with ME/CFS can have very different experiences of the condition and how long their symptoms last.
The impact of symptoms can be:
- mild
As symptoms change over time so does the impact they have on peopleâs lives.
What Can I Do About Pem
Managing your activities with a technique called pacing addresses the complications of PEM. The goal of the pacing exercise is to learn to balance activity and rest to prevent flare-ups of PEM. To practice pacing, you need to know your physical and mental limits. Keep a diary of your activities and symptoms. Then plan your activity and your rest to stay within these limits.
Living with chronic fatigue syndrome can make everyday activities such as brushing your teeth or grocery shopping very difficult. Practicing mindfulness with your limits can help you to cope with your CFS. It will help you find the right balance between rest and activity best suited for you. Simple things can bring on a CFS Crash. Do your best not to push yourself when you have a good day. Keep your pace! It isnt always possible to avoid some activities, but monitoring them and marking your symptoms can help you prevent a crash.
Chronic Fatigue specialists in rehabilitation or exercise may be able to help you cope and adjust to life with CFS. Finding easier ways to complete activities, like using a shower chair, sitting down to fold laundry, taking frequent breaks, and dividing big tasks into several smaller tasks can help.
Exercise plans must be carefully designed. People with CFS do not tolerate vigorous exercise and may even worsen the condition. However, creating a plan suited to your condition is essential for a CFS treatment protocol.
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What Is Chronic Fatigue Syndrome Exactly
Also known as myalgic encephalomyelitis or systemic exertion intolerance disease , CFS is a disorder characterized by extreme fatigue or tiredness lasting at least six months that doesn’t go away with rest and can’t be explained by an underlying medical condition, explains Kishor Gangani, MD, MPH, internist at Texas Health Arlington Memorial Hospital.
Other symptoms, per the National Health Service, include:
- Difficulty sleeping
- Fast or irregular heartbeats
According to the Centers for Disease Control and Prevention , between 836,000 and 2.5 million people have CFS in the U.S., with the reason for the wide discrepancy being that the condition often goes undiagnosed. It is less common in children and most often seen in adults assigned female at birth who are between the ages of 40 and 60.
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 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.
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.
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Diagnosing Chronic Fatigue Syndrome And Fibromyalgia
ME/CFS and fibromyalgia are both diagnoses of exclusion, which means:
- They dont have objective lab or imaging tests.
- Other possible conditions must be ruled out.
- Multiple factors must be interpreted to come up with an answer.
This process can take a long time. You may have to push your healthcare provider to keep searching or to give you a referral.
Benefits Of A Chronic Fatigue Syndrome Diet
It is essential to mention that a diet designed for people with ME/CFS will not cure you of all the symptoms, but it can alleviate some of them and give you a healthier lifestyle.
Nutrient deficiencies can cause issues that result in muscle pain and fatigue, so addressing this will help you get into the best position possible.
Generally speaking, the kinds of food you eat and the different types you should cut from your diet should help with weight loss.
Carrying excess weight poses countless health issues, and not being as active due to ME symptoms can cause people to gain weight. Losing excess weight will make it easier to move around, reduce the pressure on muscles and joints, and make you healthier.
A healthy diet that ensures you get the vitamins, minerals, and essential fatty acids will improve your overall well-being. Including specific supplements in your diet can also benefit you.
Losing belly fat following a calorie-controlled diet
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Children And Teens With Me/cfs
As with adults, the degree to which a child or teens life is impacted by the disease depends on a number of things, including disease severity. If the child is mildly affected, he or she might benefit from a slightly modified school schedule and a reduction in social activity as long as parents and guardians recognize the need to avoid triggering PEM and worsening symptoms. If the child is moderately ill, the school and parent/guardian will need to work together to establish a substantially modified plan of education which might include private tutoring, remote learning, or some type of home-schooling. Children who fall into the moderate-to-severe range are generally unable to attend school at all and need help with even the most basic personal care.
It is important for family members and caregivers to know enough about the disease to understand what is happening and help guide the childs activities in order to prevent worsening of symptoms. For more information about navigating pediatric ME/CFS and working with your childs school, click here.
In Her Own Words: Living With Chronic Fatigue Syndrome
As told toAmy Scholten, MPH
Alicia is a 54-year-old mother of two who lives in New York. Having lived with crippling chronic fatigue syndrome for 10 years, she has learned how to get through each dayalthough some are much harder than others.
What was your first sign that something was wrong? What symptoms did you experience?
In 1990, I was all set to accept a new position in research, hoping it would help to finance my children’s college education. Instead, I ended up totally disabled.
The onset of my troubles was violent. A virus attacked my bronchial area and it was swollen shut, making it extremely difficult to breathe. I was under the care of a lung specialist for six weeks. I had a bronchioscopy, and they looked for tumors. The virus left me with asthma, a condition that I still have today. Eventually my breathing got better, but I felt that the life was drained out of me.
Aside from tremendous fatigue, I have blurred vision, dizziness, pain mostly in my breast bone and hips. I experienced pressure headaches, orthostatic intolerance , low blood volume, irritable bowel syndrome, and loss of short-term memory. I often know what I want to say but I can’t think of the word. I have other symptoms too.
What was the diagnosis experience like?
What was your initial and then longer-term reaction to the diagnosis?
How do you manage your disease?
Did you have to make any lifestyle or dietary changes in response to CFS?
Did you seek any type of emotional support?
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Warning: Graded Exercise Therapy Can Cause Harm
Graded Exercise Therapy is NOT the same as pacing. GET requires you to increase your activity over time, potentially pushing you to repeatedly trigger the PEM response. GET has been reported by many patients to be harmful and has left some patients significantly worse than they were before they started. GET can repeatedly push a patient to the point where the PEM response is triggered, resulting in an overall worsening of symptoms. For more information, read the open letter to healthcare providers from the Workwell Foundation.
How I Got Diagnosed With Chronic Fatigue Syndrome
Chronic fatigue. It sounds like something were all experiencing, right? It seems like everyone is functioning on too little sleep, getting by on fumes, hitting the weekend too tired, stressed, and worn out. Fatigue seems to be an epidemic. And yet, when I talk about chronic fatigue syndrome, Im talking about a whole different animal.
Its hard to clarify for those who havent experienced it the difference between the fatigue that most adults are functioning with and what living with chronic fatigue syndrome is like. The name betrays the significance of the actual condition. This isnt simply being tired all the time, this is bone-weary, joint and muscle pain, extreme exhaustion that remains unchanged with sleep, and sleep is often elusive. For most of us, CFS is accompanied by additional symptoms of the illness like swollen glands, sore throats, headaches, cognitive difficulties, fevers, night sweats, and difficulty recovering from any kind of exertion. For me, it feels a lot like an unrelenting flu.
Getty image by Khosrork.
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What Does Living With Cfs/me Feel Like
The condition can change your life in many ways. It can be hard to adapt to and affects your overall quality of life. Simple tasks, like showering or getting dressed in the morning, can be difficult to complete, meaning you get tired quicker than usual.
Not knowing you have this condition can be very worrying. The patients we see at The Fatigue Clinic are often quite distressed by the time we see them. Typically neither they, their families nor their doctors have been able to explain or understand their symptoms. If they have been given a diagnosis of CFS/ME, they have usually experienced a lack of sympathy or disbelief from health professionals, friends or relatives. Symptoms are tough to cope with, hard to describe, and there is an unhealthy climate of scepticism surrounding it which is really very difficult for those living with the condition. Many of our patients have been told that everyone gets tired now and then, which belittles their illness without providing any tools to cope with it. Some people who have a mild form of the condition manage to carry on at work or school, but only by drastically reducing their social and/or sporting life. Many are in a worse condition by the time we see them and have had to take a substantial amount of time off work. In very rare cases, some are confined their houses or even bed-bound.
Resources For People With Me/cfs & Caregivers
As someone living with and managing ME/CFS, we know you have questions. Below are links to information about some of our most commonly asked questions.
These resources are not intended to substitute individual, professional medical advice, diagnosis, or treatment. Please seek the advice of your medical provider before starting any new medication, treatment, or therapy. Solve M.E. cannot give medical or legal advice.
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You Look Good Today You Must Be Feeling Better
Looks can be deceiving, trust me.
I know this comment is often said with the intent of being a compliment but sometimes it can be reflected as a lack of understanding.
Living with chronic fatigue for a while has meant that Ive become better at being able to conceal how its making me feel.
I know that a lot of the things Ive listed here are said with the best of intentions and people are merely just trying to empathise and perhaps, trying to understand in their own way.
Whilst empathy can go a long way, what really makes a difference is when someone asks me to explain my condition and how it affects me, when they say they want to gain a little more understanding. Whilst I dont always have the energy to comb through the finer details of how CFS affects my life, I will always try to explain as best as I can.
Id rather people ask questions than avoiding them and then, perhaps, making unnecessary assumptions which lead to all of the above being said.
Chronic fatigue can be lonely at times, especially if I miss out on doing things because of how Im feeling. So, having people around me who are willing to understand is invaluable.
Not everyone knows what to do or what to say but I hope that posts like this can help to shift social attitudes and contribute to more awareness being raised about chronic illnesses.
Elin x
Can You Have Both Chronic Fatigue Syndrome And Fibromyalgia
You can have both chronic fatigue syndrome and fibromyalgia. In fact, many people do.
These conditions are considered cousins, of a sort. They belong to the same family of illnesses, which is called central sensitivity syndromes.
The symptoms are extremely similar. So, it can be difficult to tell if you have just one or both of these conditions.
Until theres better diagnostic testing, it may sometimes be impossible to tell if you have both. It may never even be clear which one you have, either, depending on your specific mix of symptoms.
Fortunately, the treatments are similar. So, you may get the right treatments even if youre not correctly diagnosed.
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What Are The Early Signs Of Chronic Fatigue Syndrome
Typically, chronic fatigue syndrome/myalgic encephalomyelitis, often shortened to CFS/ME, begins with a viral infection. The first signs of this are usually a sore throat and fatigue. Glandular fever, also known as infectious mononucleosis, can trigger this condition. While most people who get glandular fever recover fairly quickly without any specific treatment, studies show that as many as 20% of people suffer months of fatigue and flu-like symptoms afterwards. Having other infections such as HIV, viral hepatitis, Lyme disease and Q fever can also cause post-infectious symptoms that persist longer than usual.
Experiencing profound malaise that lasts a long time, could be a sign that you aren’t recovering as quickly as you should be. The patient may find themselves bed-bound for more than one week, or experience extreme disruptions to sleep pattern. This can mean being totally unable to sleep for more than 24 hours, or sleeping more than 18 hours a day.
