Evidence Of Abnormalities In Me/cfs And Loss Of Normal Homeostasis
Concepts that are relevant here are those of homeostasis and allostasis. While homeostasis refers to the âstability of physiological systems,â allostasis has been defined as âthe adaptive processes aimed to maintain homeostasis following acute stress, and which contribute to wear and tear on the body and the brain, or allostatic overloadâ . A central characteristic of individuals with ME/CFS points to a state of homeostatic failure , aggravated by the incidence of, or increase in, levels of new stressors or by the increase in allostatic load . Typical stressors include infection , physical exertion and cognitive effort triggering post-exertional malaise , comorbid conditions and a range of environmental and individual factors .
There is a growing body of evidence on biological abnormalities in ME/CFS that has been reviewed elsewhere , and summarized by Komaroff . Of note, many of the abnormalities shown in severe injury have also been identified in ME/CFS such as: immune dysfunction, including pro-inflammatory response autonomic nervous system HPA axis dysfunction hypovolemia nitrosamine and oxidative stress endothelial dysfunction metabolic dysfunction dysfunction of membrane transport and, tissue hypoxia .
Management Of Chronic Fatigue Syndrome Symptoms
Rest and sleep in CFSRest periods in the daily routine are part of management strategies for all people with chronic fatigue syndrome. Relaxation techniques at the beginning of each rest period can be helpful. Try to balance the need for rest during the day against how you are sleeping at night. Introduce changes to your sleep pattern gradually.
Physical functioning and mobility problems in CFSStrategies to help maintain and prevent deterioration of your physical function and mobility need to be carried out in small amounts and spread out throughout the day. Strategies should include joint mobility, muscle flexibility, balance, postural and positional support, muscle function, bone health and cardiovascular health.
Care and support plans in relation to physical functioning and mobility may include bed mobility, moving from lying to sitting to standing, transferring from bed to chair, using mobility aids, walking, joint mobility, muscle stretching, muscle strength, balance, and going up and down stairs.
People with CFS may experience intolerance of changing position, such as when first standing up. This may include postural orthostatic tachycardia syndrome . You may need to be refered to a specialist if your symptoms are severe or worsening, or there are concerns that another condition may be the cause.
Pain in CFSChronic pain is commonly associated with CFS. You may need referral to specialist pain services if appropriate.
Who Is At Risk For Chronic Fatigue Syndrome
Because the cause of CFS is not known, its hard to know what might put someone at risk for getting the condition. However, certain factors are seen more often in people with CFS. These factors include:
- Gender. CFS happens up to 4 times more often in women than in men.
- Age. CFS commonly affects middle-aged people, but people of any age can get it.
Severity Of Chronic Fatigue Syndrome Symptoms
Symptoms vary widely in severity and people may have some symptoms more severely than others. However, the following definitions are provided by NICE to provide a guide to the level of impact of symptoms on everyday functioning:
Features of mild chronic fatigue syndromeThese include:
- You are able to care for yourself and do some light domestic tasks but may have difficulties with mobility.
- You are usually still able to work or attend education, but to do this you have probably stopped all leisure and social pursuits.
- You often have reduced hours, take days off and use the weekend to cope with the rest of the week.
Features of moderate chronic fatigue syndromeThese include:
- You have reduced mobility and are restricted in all activities of daily living.
- However you may have peaks and troughs in your level of symptoms and ability to do activities.
- You have usually stopped work or education, and need rest periods, often resting in the afternoon for one or two hours.
- Your sleep at night is generally of poor quality and disturbed.
Features of severe chronic fatigue syndromeThese include:
- You are unable to do any activity for yourself, or you can carry out minimal daily tasks only .
- You have severe cognitive difficulties and may depend on a wheelchair for mobility.
- You are often unable to leave the house or you have a severe and prolonged after-effect if you do so.
- You may also spend most of your time in bed and are often extremely sensitive to light and sound.
Possible Causes Of Inflammation
Much of the ME/CFS research community takes inflammation as a given. In the alternative name myalgic encephalitis , which has been adopted by some researchers, encephalitis means inflammation of the brain and spinal cord.
Some researchers point to possible inflammatory triggers that don’t involve autoimmunity.
A 2012 study published in Psychiatry Research attempted to separate chronic fatigue, chronic fatigue syndrome, and myalgic encephalitis into different categories. Researchers found that ME patients had higher levels of two specialized immune proteins called cytokines, which promote inflammation. They’re called interleukin-1 and tumor necrosis factor-alpha. They also found elevated levels of neopterin, which is an indicator of pro-inflammatory immune activity.
More recently, studies have shown that inflammatory markers can accurately distinguish ME/CFS from depression or sickness behaviors.
A study published in Metabolic Brain Disease is just one of a growing body considering oxidative and nitrosative stress coupled with low antioxidant levels as a possible mechanism of ME/CFS, suggesting that these factors could point to an immuno-inflammatory pathology.
Other researchers have suggested that certain pathogens may, in predisposed people, trigger a chronic immune activation, which would create chronic inflammation and a cascade of problems. One of the main suspects in this scenario is the Epstein-Barr virus, which causes mononucleosis .
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How Do You Fix Chronic Fatigue Syndrome
The bad news is that there is currently no cure for chronic fatigue syndrome from standard allopathic medicine. Your doctor can help with symptom relief by prescribing pain medication, antidepressants and sleeping pills as a way to help you manage your illness.
Some of the more enlightened doctors may also give you advice on pacing to help prevent energy crashes. However, this is simply to help you cope, and is not a cure for your chronic fatigue syndrome.
When you are in the midst of your illness pacing or staying within your energyenvelope is essential to help you manage your available energy.
The important element to understand about chronic fatigue syndrome is that something or more likely several somethings are causing your illness. And until you get to the bottom of what those somethings are, you will be unable to recover.
The good news is that once you do find out the root causes of your particular form of this debilitating illness, you CAN recover.
I had chronic fatigue syndrome for eight years and once I found the root causes of my illness I made a full recovery. It took two years of careful and consistent testing, effort and treatment compliance but I did fully recover.
Working with a naturopath/functional medicine practitioner experienced in treating chronic fatigue syndrome will ensure you receive the right care and guidance on your journey to recovery.
What To Expect From Natural Treatment
You might not be familiar with visiting naturopaths/functional medicine practitioners and may be very wary about being treated by one. But, I would urge you to get over any belief you may have that they use all sorts of hocus pocus and their treatments dont work.
The aim of naturopathy is to provide the body with the nutrients and conditions it needs to heal itself, with the focus on treating the disease itself rather than just the symptoms.
Naturopaths/functional medicine practitioners use a system of holistic healing providing healthcare methods drawn from several traditional natural healthcare systems. Healing systems and methods that have been in use for centuries.
If you already have a diagnosis of chronic fatigue syndrome, you may have had a battery of tests carried out by your doctor. When you visit your naturopath be prepared for more testing to be run.
After taking an extensive medical and symptom history you will probably need to undergo further testing. Blood, work, saliva, hair and poop samples may all be taken for analysis.
This part of the treatment can be frustrating. As Sherlock Holmes like your naturopath starts to look for clues from your test results that will point the way to the root cause of your illness. Your results might uncover something very quickly, or it can take some time before the clues become apparent.
It helps to realize that you wont get better overnight and each small improvement in your symptoms is a reason to celebrate.
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Epidemiology: Estimating Disease Prevalence
- Results from epidemiologic studies, which have attempted to estimate the prevalence of ME/CFS, vary according to the population being studied, the survey methodology used and the criteria used to establish the diagnosis.
- From the information currently available, and the consensus reached in the report to the Chief Medical Officer on ME/CFS , we make the following conclusions:
|A prevalence rate of at least two per 1,000 of the adult population although the actual figure is probably closer to four per 1,000 , i.e. 0.2-0.4%. This means that somewhere between 150,000 and 250,000 people in the UK have ME/CFS. A general practice with 10,000 patients could have up to 40 cases of ME/CFS.
- All age groups and social classes are affected although it is rare for patients below the age of seven and above the age of 60 to have a new diagnosis of ME/CFS.
- The most common age of onset is between 13 and 15 in children and between early twenties and mid-forties in adults.
- Older people with ME/CFS demonstrate a disease phenotype very different from younger people.
- The combination of differing underlying pathogenic mechanisms and the physiological aspects of ageing result in a greater disease impact on those in the older age group .
Additional support from the ME Association:
Mortality In People With Me/cfs
- There is very little research examining mortality in ME/CFS. Anecdotal information, as well as some research studies, indicates that there is an increased risk of suicide.
- McManimen et al have examined whether people with ME/CFS are dying earlier than the overall population from the same cause. This was done through analysing data on cause and age of death from 56 people with ME/CFS.
- The findings from this very small study suggest that there is a significantly increased risk of earlier all-cause and cardiovascular related mortality along with a lower age of suicide and cancer. As the authors point out, this is a small study with over-representation of people with severe ME/CFS. So, these findings cannot be regarded as conclusive evidence.
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How Me/cfs Impacts Daily Life
ME/CFS tends to follow a cyclical course. You may experience periods of intense fatigue followed by periods of well-being. It’s vital not to overdo it when you’re feeling well, because this may trigger a relapse. Most people with ME/CFS experience symptoms that worsen after strenuous physical or mental activity. Work with your health care team to determine the right activity level for you.
Treatment For Chronic Fatigue Syndrome
Unfortunately, there is no cure for ME/CFS. People with the disorder shouldnt give up hope, however. A variety of treatments may be used to lessen or eliminate symptoms.
- Cognitive Behavioral Therapy . CBT teaches patients how to recognize fears of potential fatigue. With the aid of CBT, patients can also learn how to redirect thoughts that may provide a more positive outlook about recovery.
- Exercise. Through graded exercise therapy, patients with ME/CFS exercise to increase overall physical and mental function.
- Sleep Management. Poor sleep is a common symptom of ME/CFS. Treatment of sleep disorders that accompany ME/CFS can lessen its overall effects. Patients can begin by improving their sleep hygiene. However, additional steps, such as prescription medications or therapies for specific sleep disorders may be necessary.
- Pharmacologic Therapy. Currently, there are no drugs that specifically target ME/CFS. Instead, patients may take drugs to treat symptoms of ME/CFS, such as pain, depression, and sleep deprivation.
- Stress Reduction and Relaxation. Certain practices can help with managing chronic pain and fatigue. These include meditation, massage, and acupuncture.
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What Treatments Are Available
There is not yet any treatment that can cure ME/CFS.
Until a cure is found, there are a number of approaches that can help people manage their illness, although it is very important that these are discussed with a GP beforehand.
Drug treatments are available for some of the specific symptoms of ME/CFS, such as sleep disturbances, pain, headaches, abdominal symptoms and balance disorders.
Many people with ME/CFS find that managing their activity by pacing or other methods helps them to live with the illness day to day, and a variety of coping strategies are available that can make a real difference.
None of us at ME Research UK are medically qualified, and so we are not in a position to offer any specific advice or help on treatments.
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.
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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.
Myalgic Encephalomyelitis And Chronic Fatigue Syndrome
NHMRC established the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee under section 39 of the National Health and Medical Research Council Act 1992 to advise the NHMRC Chief Executive Officer on the current needs for research and clinical guidance on ME/CFS. The Committee finalised its report in late April 2019.
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Sleep Rest And Relaxation
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 it’s going regularly. If your sleep does not improve after making changes, you may have an underlying sleep problem that will need to be addressed.
It’s likely you’ll 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.
What Can Be Done
If you think you may be struggling with chronic fatigue, it is important to discuss your symptoms with your healthcare provider. Symptoms that are particularly important to discuss include:
It is also important to tell your healthcare provider about the medications you are taking, including dietary supplements, natural remedies, and complementary treatments. Some medications can exaggerate the symptoms listed above. For example, stimulants , as well as corticosteroids, may cause sleep disturbances. Your healthcare provider can provide guidance on what medications and interventions may restore your sleep, as well as advice on medications to avoid.
It is also important to discuss chronic pain symptoms with your healthcare provider because chronic pain often leads to sleep difficulties, which in turn leads to chronic fatigue. Your healthcare provider may order laboratory tests to determine if organ involvement may be causing chronic fatigue.
For those with arthritis, maintaining a healthy weight and participating in regular exercise may also help reduce symptoms of chronic fatigue.
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