Support And Coping Skills
The young person with ME/CFS needs to learn to adapt to the reality of the illness, and integrate it into a meaningful life despite sometimes severe physical limitations. Above all, the young patient needs to develop a sense of achievement in her/his life, however, small.
All aspects of the young persons life might need to be addressed. She/he might need to deal not only with physical and cognitive limitations, but also with misunderstanding of the illness, fear, grief, anger, guilt and isolation. Sometimes having ME/CFS can result in abnormal illness behavior, such as denial of the reality of the illness.
A patients needs early in the illness might differ from her/his needs in later years, as health improvement is being achieved. Young patients should be encouraged to verbalize their fears and needs. Only the young person her/himself knows how she/he really feels. For instance, many young people fear getting behind their peers academically, never being able to catch up, and consequently losing friends. There should be opportunity to talk things through with a trusted professional who understands the illness. Although the parents can be present, the discussion should be primarily with the patient, so that she/he is also involved in decision making and feels part of the team approach. Teenagers usually need an opportunity for discussion without a parent present.
Our experience suggests that the following elements of basic supportive therapy can be helpful:
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Diagnosis And Treatment For Me/cfs
Currently, there is no single test to diagnose ME/CFS. Doctors make a diagnosis by excluding all other illnesses that might be causing symptoms and following accepted diagnostic criteria. The persons results from routine medical tests will often be normal, but additional tests may show abnormalities.
Psychological Reactions Secondary To Me/cfs: Distinction From Depression And Anxiety Disorders
Studies focusing on psychological problems in pediatric ME/CFS patients are limited. In this section, available studies have been supplemented by the insights of our experienced clinicians. It is important to distinguish: normal emotional reactions to ME/CFS from clinically significant psychiatric symptoms such as depression or anxiety secondary to ME/CFS and from a primary psychiatric illness such as Major Depressive Disorder or an anxiety disorder without co-existing ME/CFS.
Emotional Responses to a Chronic Illness
Emotional responses to the difficulties of ME/CFS are common. These responses are similar to the responses of young patients with other chronic illnesses. Grief and anger can arise over illness-related losses, from negative responses to the illness from family members, friends and school staff, and from the pervasive stigmatization of this particular illness. Apprehension commonly follows the onset of an illness, which can be undiagnosed and about which there is generally ignorance. There can be frustration with the inability to do things that were easily done beforehand. Outbursts of weeping can stem from excessive tiredness and/or feeling overwhelmed. Emotional distress can also occur because of disbelief by others regarding the reality of the illness, or by the prescription of inappropriate remedies by health-care providers.
Identifying Clinically Significant Depression and Anxiety Co-Existing with ME/CFS
Factitious disorder by proxy .
School refusal .
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Find Out If You Have A Mthfr Genetic Mutation
Methyl-tetra-hydro-folate reductase is an enzyme that your body uses to convert folate into the active form of folate used by the body. This process is methylation.
There are a few common genetic mutations that can influence how effectively your body is able to make this important conversion. Poor methylators commonly experience symptoms such as sleep disturbances, anxiety, depression, fatigue and/or chronic pain. Here are some of the most common versions of the MTHFR genetic mutation, and how much it influences your bodys ability to convert folate from food and supplements into methyl folate, the form that is useable by your body:
- MTHFR C677T = heterozygous mutation estimated up to 40% loss of function
- MTHFR T677T = homozygous mutation estimated up to 70% loss of function
- MTHFR A1298C = heterozygous mutation estimated up to 20% loss of function
- MTHFR C1298C = homozygous mutation estimated up to 40% loss of function
You used to be able to find out if you have a MTHFR genetic mutation by taking a 23andme ancestry test and then accessing the resulting raw genetic data, but rumor has it they no longer include MTHFR in the raw genetic data, so the best bet is probably asking your doctor to run genetic testing.
Sip Some Potato Water
While a brimming glass of fresh potato water may not sound like the first thing youd want to relax on a hot summer day with, its actually a great home remedy for fatigue. Soaking slices of potato in water makes a potassium rich drink that can help you feel less tired and sluggish, as it replenishes a mineral many people have trouble getting enough of. Like magnesium, the body does not produce potassium-we have to consume it from outside sources. Because our diets these days tend to lean towards being nutrient deficient, its no wonder we find ourselves lacking in the potassium department.
Potassium doesnt give you a direct jolt of energy, per say, but along with magnesium it is an electrolyte that is vital for the proper functioning of our cells and the release of energy and the conduction of electricity. Without enough of it, our muscles wouldnt move properly and our nerve impulses wouldnt fire right. By ensuring you have healthy levels of potassium, you can get an edge on feeling dull and tired all the time.
You will need-8 ounces of fresh water
DirectionsSlice up the potato and add to a glass of water. Allow it to steep overnight in the fridge, and drink first thing in the morning.
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How Does It Happen
Doctors don’t know what causes ME/CFS, but they have identified different underlying abnormalities in people with the condition.
Immune system problems: Several parts of the immune system are different in people with ME/CFS. Some research indicates that these abnormalities may cause the symptoms of the illness. Fortunately, people with ME/CFS don’t have a defective immune system in the way that people with HIV/AIDS do.
Energy production: In you have ME/CFS, the cells in your body have trouble making enough energy.
Brain abnormalities: Abnormalities show up in pictures of the brain , in levels of brain hormones, and in the brain’s electrical system . These abnormalities can come and go, and aren’t necessarily permanent.
Blood pressure and pulse issues: When you stand, you blood pressure could drop and your heart might start to beat faster. You might feel faint or pass out if your blood pressure drops too low.
Genes: Some studies have found abnormalities in the structure of certain genes. Others point to abnormalities in the way certain genes are turned on and off inside your cells. Studies of identical and non-identical twins indicate that some people inherit a genetic likelihood for getting the illness.
Serotonin and cortisol: Several studies indicate that serotonin, a major brain chemical, plays an important role in ME/CFS symptoms. People with the illness have low levels of cortisol, a hormone the body releases in response to stress.
Problems With Current Research
Research into this important illness is hampered by small sample sizes, different definitions, and the lack of a coordinated approach. CFS is probably not one illness, and it is likely that the different phenotypes are due to different underlying biological pathways requiring different treatment approaches. This may explain the relatively low response rate to current treatments. To develop better treatments, we need larger trials with carefully characterized participants to understand more about treatment response. We need to develop treatments in the areas identified previously where there is no evidence for effective treatment. This includes the treatment of CFS and comorbid mood disorders, CFS in primary school children, those who are severely affected, and those with refractory fatigue. We also need to start to develop an understanding of the biology of CFS/ME and whether different biological pathways are associated with different disease phenotypes. Some early studies with small sample studies suggest that an omic approach to dissecting out the different subtypes may help to clarify different biological pathways. This approach will require a large bioresource of well-characterized patients.
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The Importance Of Education
The physician might need to take an active role in supporting young people with ME/CFS and ensure that they receive an education that is appropriate for their physical condition. Long-term follow-up of young people with ME/CFS shows that engagement in education is a key issue that improves their ability to function regardless of whether or not they recover . Students can become demoralized if they are asked to withdraw from school. Education helps students to fulfill their aspirations and allows important aspects of their lives such as socializing with their peer group, to develop . It widens the range of possible occupations in later life. Work that is low skilled is usually more physically demanding. Although students with ME/CFS have cognitive dysfunction and reduced energy reserves, intellectual reasoning is frequently retained and most students with ME/CFS are capable of keeping up with their peers in some academic classes provided that the number of their classes is strictly limited .
Your Brain Feels Foggy And Fuzzy
The cognitive impairment that can accompany CFS/ME often reaches debilitating levels. People who formerly were able to concentrate at a high level may find themselves unable to write a simple sentence after being stricken with chronic fatigue syndrome. Memory can become unreliable with CFS/ME, and many people have to stop working because they simply do not have the cognitive ability to focus on completing mental tasks.
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Presentation Course Of The Illness Prognosis
Myalgic encephalomyelitis/chronic fatigue syndrome can begin suddenly, gradually, or with an abrupt increase in the intensity and frequency of milder chronic symptoms. There can be a history of repeated minor relapsing and remitting prodromal illnesses over the months or years preceding the onset. An acute onset of fever and viral-like symptoms is common, and the onset also can be marked by severe orthostatic symptoms. ME/CFS can follow a known illness such as infectious mononucleosis . A gradual onset is more common in younger children and can occur over months or years.
While all patients experience a substantial loss of physical and cognitive functioning, there is a wide spectrum of severity. Mildly affected young people might be able to attend school full-time or part-time, but they might have to limit sport and after-school activities and have frequent school absences. ME/CFS has been found to be the most common cause of long-term absence from school . More severely affected young people can be wheelchair dependent, housebound, or bedbound. The more impaired might even have difficulty participating in home tutoring sessions. In young persons with ME/CFS, overall self-reported quality of life is often lower than in other illnesses such as diabetes, epilepsy, and cystic fibrosis .
What Can You Do For Chronic Fatigue Syndrome
You may have sleep problems that make your ME/CFS symptoms worse. For example, you may:
- have problems getting to sleep
- have unrefreshing or restless sleep
- need an excessive amount of sleep
- sleep during the day and be awake at night
You should be given advice about how to establish a normal sleeping pattern. Having too much sleep does not usually improve the symptoms of ME/CFS, and sleeping during the day can stop you sleeping at night.
You should change your sleep pattern gradually, and your doctor should review how its going regularly. If your sleep does not improve after making changes, you may have an underlying sleep problem that will need to be addressed.
Its likely youll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.
If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.
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What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome is a complex illness marked by extreme or debilitating fatigue that is not improved by rest. This condition includes other symptoms that may come and go. Chronic fatigue syndrome can affect your ability to think clearly, sleep or perform ordinary activities without exhaustion.
The cause of chronic fatigue syndrome is unknown. Some experts think two or more contributing risk factors might work together to cause it. This illness is most common in white women between 40 and 60 years old. However, it may be underdiagnosed in other groups of people.
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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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Forms Of Oi In Me/cfs
Orthostatic Hypotension
Orthostatic hypotension is defined by a sustained BP reduction of at least 20 mm Hg systolic or 10 mm Hg diastolic during the first 3 min after assuming an upright posture . This problem is rarely seen in children except at times of febrile illness, acute dehydration, hemorrhage, adrenal insufficiency, excessive histamine release, or as a response to certain medications.
A more common pediatric variant, termed initial orthostatic hypotension , is characterized by a transient drop in BP immediately after standing, but resolving within 60 s. Its recognition requires a continuous beat-to-beat BP measurement device. The diagnosis is missed by standard, automated sphygmomanometer measurements . Although this is not usually a condition that requires clinical treatment, chronic orthostatic symptoms in those with IOH have been reported , suggesting that they can develop other orthostatic abnormalities on more prolonged monitoring.
Postural Tachycardia Syndrome
Postural tachycardia syndrome is increasingly being recognized as the most common form of OI in pediatric ME/CFS. As is the case for pediatric ME/CFS, postural tachycardia syndrome is more common in females than males, is more common after the onset of puberty, and often follows an apparent infectious illness .
Neurally Mediated Hypotension
Causes Of Chronic Fatigue Syndrome
We still know very little about chronic fatigue, and sadly, the cause is still unknown. While researchers continue to search for the root cause of CFS, there are preliminary findings that hormonal imbalances, poor immune system response, viral infections, chronic low blood pressure and nutritional deficiency are contributing factors.
In addition, research indicates that chronic fatigue syndrome may be linked to oxidative stress, Celiac disease, and food sensitivities or food allergies.
Most researchers believe that its a combination of factors that can vary from individual to individual. Viruses that can cause CFS include HHV-6, HTLV, Epstein-Barr, measles, coxsackie B, parovirus and cytomegalovirus.
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A Sjogrens Syndrome Segue
Sjogrens Syndrome is of interest because of its growing association with POTS in particular. A Johns Hopkins 2014 case series used a high resolution magnetic resonance neurography to diagnose abnormal dorsal root ganglia in ten Sjogrens Syndrome patients.
The authors pointed out that the burning sensations found in SS often do not follow the typical stocking and glove pattern that occurs with most people who have small fiber neuropathy. They called small fiber neuropathy a surrogate marker of DRG neuronal loss but noted that the unusual distribution of SFN in SS can complicate getting an SFN diagnosis. Plus, some SS patients with burning or raking pain may have dorsal root ganglia problems without having small fiber neuropathy.
Five of the ten SS patients in the study had abnormal DRGs. The fact that none had evidence of small fiber neuropathy, and that two of the patients improved markedly on IVIG therapy, suggested that dorsal root ganglionitis by itself can cause these burning, painful sensations. It also suggested a new way to search for sensory ganglionitis.
In any case, the finding of sensory ganglionitis in Sjogrens Syndrome suggests that it may not be long given the proper studies before its also found in POTS, FM and ME/CFS.
Continued Research Should Lead To Better Understanding And Treatments
A great deal more is known about ME/CFS today than 35 years ago. With continued and expanded support from the NIH, CDC, and private foundations dedicated to ME/CFS, I expect a lot of progress in the coming decade. Instead of doctors saying, The tests came back normal, there is nothing wrong, they will say, Tests showed us what was wrong, and we have treatments to fix it.
And doctors will recognize the wisdom of the wise advice we all learned in medical school: Listen to your patient. The patient is telling you the diagnosis.
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