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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Treatments Explored To Ease Post
Miriam E. Tucker
A variety of treatments, most already commercially available, are under investigation for treating the constellation of overlapping symptoms associated with myalgic encephalomyelitis/chronic fatigue syndrome , long COVID, and dysautonomia.
At the virtual annual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis , speakers presented data for a variety of approaches to ease symptoms common across post-viral conditions, such as extreme fatigue, post-exertional malaise , cognitive dysfunction , orthostatic intolerance including postural orthostatic tachycardia syndrome , and chronic pain. Most of the modalities are already commercially available for other indications, although some are costly and not covered by payers for these conditions.
Both post-acute COVID-19 syndrome and ME/CFS are forms of post-infectious viral syndromes and they have overlapping symptoms. In the past, patients were told you have chronic fatigue syndrome but theres nothing we can do for it. That certainly is not the case. There arent cures, but there are many management techniques to improve symptoms, Charles W. Lapp, MD, medical director of the Hunter-Hopkins Center, Charlotte, North Carolina, told Medscape Medical News in an interview.
Data for the following approaches were presented at the IACFS/ME conference:
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Fatigue In Peripheral Neuropathy
Unfortunately fatigue is a central part of many neuropathies and especially the immune mediated neuropathies. It is central to many other chronic illnesses that affect the bodys immune system. The causes are often complex and many.
Dr. Scott Berman, in his book Coping with Chronic Neuropathy notes in chapter VIII Dealing with Fatigue and Insomnia that this symptom is one of the most difficult and challenging for the neuropathy patient. Dr. Berman is a Psychiatrist, a member of the Board of Directors of the NSN and a Medical Advisor. Scott lives with untreatable CIDP.
that in one study looking at fatigue in autoimmune neuropathy 80% of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms. .
For decades in living with untreated Chronic Inflammatory Demyelinating Polyneuropathy , Autonomic Neuropathy and Progressive Polyneuropathy due to exposure to Agent Orange in Vietnam, I can attest to the facts noted above. While other major symptoms respond to treatment with Immune Globulin , the symptom of severe fatigue continues as one of the symptoms that responds only temporarily to the infusions followed by several days of total fatigue following infusion and then with some lessening until the next infusion.
Impact on family and friends:
Educating yourself about neuropathy:
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Nice Has Today Published Its Updated Guideline On The Diagnosis And Management Of Myalgic Encephalomyelitis /chronic Fatigue Syndrome
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
Paul Chrisp, director of the Centre for Guidelines at NICE, said:As well as bringing together the best available scientific evidence, weve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.
Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, said: This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on peopleâs quality of life.
People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patientâs preferences and priorities.
How Is Me/cfs Treated
Right now, there is no cure or FDA-approved treatments for ME/CFS. But, there are things you and your doctor can do to help ease your symptoms. Because the symptoms of ME/CFS vary from person to person, the management plan you discuss with your doctor may look very different from the plan of another person with ME/CFS.
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Increase Potassium And Magnesium Intake
Research shows that both potassium and magnesium can help improve the symptoms associated with chronic fatigue syndrome.
In a study published in the UK medical journal The Lancet, chronic fatigue syndrome patients were found to have low magnesium levels that accounted for a low red blood cell count.
In this study, patients that were treated with magnesium supplements self-reported improved energy levels, a more balanced emotional state and less pain. At the end of the six-week study, all patients that were given magnesium had their red cell magnesium levels return to normal.
If you have chronic fatigue syndrome, consider adding these magnesiumrich foods to add to your diet: spinach, chard, pumpkin seeds, yogurt and kefir, almonds, black beans, avocados, figs, dark chocolate and bananas.
These delicious foods can help you overcome chronic fatigue, one of the symptoms of a magnesium deficiency, and support healthy nerve function, healthy blood sugar levels, blood pressure regulation, and much more. Its estimated that nearly 80 percent of Americans are currently deficient in this essential mineral.
Potassium is responsible for proper electrolyte balance in the body. Potassium-rich foods include avocados, spinach, sweet potatoes, coconut water, kefir and yogurt, white beans, bananas, acorn squash, dried apricots and mushrooms.
Chronic Pain And Fatigue Syndromes: Overlapping Clinical And Neuroendocrine Features And Potential Pathogenic Mechanisms
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Mental Fatigue 8 Brain Fog Remedies To Improve Clarity And Focus
If youre easily distracted, have trouble focusing, find it difficult to follow conversations, and/or just generally feel out of it, you might be suffering from a condition called brain fog. Brain fog can be caused by stress and sleep deprivation, as a side effect from certain medications, or it can be the symptom of a more serious underlying medical condition. This post has everything you need to know, including 8 natural brain fog memories to help you feel more alert and energized.
Common Causes For Brain Fog
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Chronic Fatigue Syndrome Treatment
|This article needs more medical references for verification or relies too heavily on primary sources. Please review the contents of the article and add the appropriate references if you can. Unsourced or poorly sourced material may be challenged and removed.Find sources: “Chronic fatigue syndrome treatment” news ·newspapers ·books ·scholar ·JSTOR|
Treatment of chronic fatigue syndrome is variable and uncertain, and the condition is primarily managed rather than cured.
Whilst historically only two treatments, cognitive behavioral therapy and graded exercise therapy , have supposedly shown demonstrated reproducible evidence for their efficacy in people with CFS who are walking, large studies such as the UK’s PACE trial were actually based on falsehoods and misrepresented data. It is likely that poor data, misdiagnosis, and labelling ME/CFS as a ‘psychosomatic’ disorder rather than a biological disease, has set back the development of treatments by decades. In a 2006 journal discussing the wide variety of outcome measures used in CFS research, authors found diversity in both diagnostic criteria and what ‘recovery’ was deemed to be a “fundamental problem” for assessing the effectiveness of interventions in general, and no intervention has proven to be effective in restoring the ability to work.
Even when treated, the prognosis of CFS is often poor. Recovery is “rare” even after a comprehensive rehabilitation programme.
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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Other Fatigue Fighting Strategies
If youre living with fatigue and exhaustion on a daily basis, its time to make an appointment with your doctor. The two of you can discuss your current medications and your dosage schedule. Sometimes splitting doses or taking the same medication by injection on the weekends can help to fight the fatigue. You may also want to discuss supplements with your doctor. Taking probiotics could help you deal both with the pain and your fatigue levels, as might vitamin D. Even investigating your sleep cycle can help quite a bit.
After you talk to your doctor, you may want to try a few other things. First, dont overdo it when you have a good day. If you feel good, keep in mind that your energy level may still be in short supply, and overdoing it will make your next bad day far worse. Knowing your limitations can help you avoid overdoing it.
Be sure to get some exercise every day. While this can be tough if youre dealing with chronic pain and fatigue, a little bit of exercise could help increase your overall energy levels while keeping your joints flexible.
Think about increasing the quality of your sleep, too. You should have a dark space in which you sleep each night that is cool and comfortable. If possible, make sure it is quiet, too, and dont take any electronics into the room.
Chronic pain and fatigue can make it tough to live your life, but there are things you can do to move forward. To learn more about how we can help you fight chronic pain and fatigue, contact us today.
Can Complementary Or Alternative Medicine Help Manage The Symptoms Of Me/cfs
Some people say that complementary or alternative medicine has helped their ME/CFS symptoms. Keep in mind that many alternative treatments, dietary supplements, and herbal remedies claim to cure ME/CFS, but some might do more harm than good. Talk to your doctor before trying alternative therapies to be sure theyâre safe.
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Clinical Burden Of Chronic Pain And Fatigue
Further understanding of pain and fatigue is clinically important as they are among the most frequent symptoms reported by patients.1 When these symptoms are persistent or unexplained they are associated with poorer quality of life and higher costs than other patient groups.2 They also pose a diagnostic conundrum and have a significant impact on healthcare utilisation costs and significant indirect costs.3,4
Fibromyalgia is characterised by chronic pain, fatigue and what are described as functional symptoms.5 Myalgic encephalomyelitis / chronic fatigue syndrome is a complex, chronic condition characterised by symptom clusters that include pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms.6
Chronic pain affects between one-third and one-half of the population of the UK, whereby fibromyalgia has a reported prevalence of 5%.7 In a population-based sample of middle-aged individuals, fatigue was present in one out of five subjects.8
How Can I Overcome Chronic Fatigue
How can I overcome chronic fatigue? 4 Steps to OvercomeChronicFatigue Syndrome Step 1: Eliminate Food Sensitivities and Allergens Step 2: Increase Your Vitamin B Intake Step 3: Increase Potassium and Magnesium Intake Step 4: Build Peace and Relax
What is the cure for chronic fatigue? There is no cure for chronic fatigue syndrome, so treatment is aimed at managing symptoms. Treatment usually involves a combination of medication and lifestyle changes such as preventing overexertion, reducing stress, managing diet, and nutritional supplements.
What are the best supplements for chronic fatigue? The following specific supplements can support the activities of the immune system and adrenal glands and are, therefore, frequently prescribed to people with chronic fatigue syndrome: vitamin C. beta-carotene. pantothenic acid zinc. magnesium adrenal extract.
What causes extreme fatigue? Infections especially viral infections are among the leading causes of extreme fatigue. Common, short-term viral illnesses associated with extreme fatigue include influenza and infectious mononucleosis. Other possibilities include viral hepatitis, Lyme disease and HIV/AIDS.
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Pacing Activity For People With Me/cfs
Pacing, or keeping within your available energy, is a self-management strategy to help people with ME/CFS make sure that they dont overdo activity or exercise. It reduces the likelihood of triggering PEM and can help reduce symptoms. Pacing is not a cure for ME/CFS and does not treat the underlying, physical cause of the disease.
The goal of pacing is for activity to be sustainable, so that the person can have some stability in their symptoms and what they can do each day. Pacing should be used in conjunction with rest.
The most challenging aspect of pacing is that PEM is very often delayed by as much as 24-48 hours, which can make it difficult to recognise when youve done too much. Using tools like an activity diary or heart rate monitor help you learn about your body and how much activity you can safely tolerate.
Suggestions on how to pace yourself include:
What Are The Symptoms Of Brain Fog
For anyone who isnt clear on what Brain Fog is, some of the symptoms include:
- Becoming easily confused
- Lack of ability to concentrate
- Lack of ability to multi-task due to lack of concentration
- Inability to recall words during a sentence , forgetting why you started the sentence or mixing words around and not noticing
- Short term memory problems
- Inability to carry out simple calculations or mathematical problems
- Losing things and not being able to find them, as you usually would
- Becoming easily lost and disoriented in places you usually know well
Brain Fog generally tends to get worse when you are anxious, worried, rushed or dealing with too much information at once. It can also occur when youre dealing with sensory overload, for example, too many bright lights or too much noise. I used to get completely overwhelmed in shopping centres and supermarkets, and would feel panicky and closed in. Once this had happened a few times, my parents knew to only offer to take me shopping to get me out of the house if they knew it was going to be quiet.
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Tips For Family Members
Chronic illnesses like ME/CFS may impact the whole family. Consult with a mental health professional to learn how to cope with changes in family dynamics. Don’t expect your loved one to “snap out of it” and return to their usual activities. Try to be supportive, because emotional health is vital for anyone coping with ME/CFS.