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What is ME/CFS? How can we help?


Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, disabling long-term illness that affects many body systems. People living with ME/CFS are often not able to do their usual activities and at times, ME/CFS may confine them to bed with overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental.

Some people may experience tender lymph nodes in the neck or armpits, a recurring sore throat, digestive issues, chills and night sweats, allergies and sensitivities to foods, odours, chemicals, light, or noise, muscle weakness, shortness of breath, irregular heartbeat.

While most common in people between 40 and 60 years old. the illness can affect children, adolescents and adults of all ages. Women are affected more often than men. Caucasians are most commonly affected but many people with ME/CFS have not been diagnosed, especially among minorities.  Even though there is no cure for ME/CFS, some symptoms can be treated and managed.

 


Symptoms can include

People with ME/CFS may not look ill. However,


  • Chronic/severe fatigue not improved by rest or sleep.

  • Sleep problems.

  • Problems with thinking and memory.

  • Worsening of symptoms while standing or sitting upright (orthostatic intolerance).

  • Pain: muscle pain and aches; joint pain without swelling or redness; headaches, either new or worsening.

  • They are not able to function the same way they did before.

  • ME/CFS changes the ability to do daily tasks, like taking a shower or preparing a meal.

  • ME/CFS often makes it hard to work, study or take part in family and social life.

  • ME/CFS can last for years and can lead to serious disability


Researchers have not yet found what causes ME/CFS, and there are no specific tests to diagnose ME/CFS directly. Therefore, doctors need to consider the diagnosis of ME/CFS based on in-depth evaluation of  symptoms and medical history.  ME/CFS possibly has more than one cause, patients could have illness resulting from different causes or  two or more triggers might work together to cause the illness (see below).  Members of the same family sometimes have ME/CFS, however, scientists have not yet found the exact genes or other factors from the environment that may be responsible.


Infections

People with ME/CFS often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection or virus such as glandular fever, may trigger ME/CFS.

Immune System Changes

It is possible that ME/CFS is caused by a change in the immune system and its response to infection or stress. ME/CFS shares some features of autoimmune diseases in which the immune system attacks healthy tissues. However, other signs of autoimmune disease, like tissue damage, are not found.

Stress

Affects the body’s chemistry - physical or emotional stress affects the hypothalamic-pituitary-adrenal axis (HPA axis). The HPA axis is a complex network that controls our body’s reaction to stress and regulates a lot of body processes such as the immune response, digestion, energy usage, and mood. 

Changes in Energy production

Scientists have found differences between people with ME/CFS and healthy people in the way cells in their bodies get their energy. However, more studies are needed to figure out how these findings may be contributing to the illness.


What treatments are available?


In general, treatments for ME/CFS include both medication and self-care strategies. The emphasis is on minimizing symptoms and improving general health. No one treatment works for all symptoms but trying a variety of treatment strategies can have a cumulative effect.


Medications


Pain relievers

Over-the-counter pain relievers may be helpful. Opioid medications are not recommended, because they can lead to significant side effects and dependence and will worsen the pain over time.

Sleep Medication

Some prescription sleep medications help you get to sleep, such as: Eszopiclone  (Lunesta); Ramelteon (Rozerem); Zolpidem (Ambien). Others that your doctor may prescribe help you stay asleep. For example: Trazodone (Desyrel); Antidepressants; Benzodiazepines; Muscle relaxants.

Vitamin B12 Deficiency

A few studies suggest that low B12 levels may be involved in ME/CFS. Research on B12 supplements for these illness has begun, A 2015 study of B12 injections showed a positive response, especially in those who were also taking daily folic acid supplements.


All prescription sleep medications cause side effects. But some of them -- daytime sleepiness, dizziness, unsteadiness, and memory lapse -- are also symptoms of chronic fatigue syndrome. You and your doctor should weigh the pros and cons. The beneficial effects of many of these medicines wear off in a few weeks, so they are not useful for long-term treatment.


Therapies 

A variety of different therapies can help reduce the effect that ME/CFS has on your body and your life. Examples include:


Physiotherapy

A physiotherapist can teach you exercises that will improve your strength, flexibility, and stamina. Any physical activity programme should begin by establishing your physical activity capability at a level that does not worsen your symptoms and should only be offered on the basis that it is delivered or overseen by a physiotherapist with training and expertise in ME/CFS.  Latest NICE guidance states that graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.

Occupational therapy. 

An occupational therapist can help you make adjustments to your work area or the way you perform certain tasks that will cause less stress on your body.

Counselling. 

Talking with a counsellor can help strengthen your belief in your abilities and teach you strategies for dealing with stressful situations. Mediation and Mindfulness can also be effective.


Complementary Therapies 


Acupuncture

appears to modestly reduce many types of chronic pain, so it's not surprising that many people with ME/CFS are interested in trying it. While the studies on the effectiveness of acupuncture for ME/CFS symptoms are somewhat mixed, most suggest that it may have a beneficial role.

ME/CFS can be difficult to treat, and a combination of treatments may be necessary to control your symptoms. If you're having trouble finding relief for your symptoms, it may be worth trying acupuncture. But if your symptoms don't begin to improve within a few weeks, acupuncture may not be the right treatment for you.

Myofascial Release Therapy (MFR).  

This is a hands-on treatment performed on the skin with no oils or creams. By following the unique lines of tension in each patient’s body, the MFR therapist can reach deeply into the tissues and uncover significant restrictions.

MFR involves applying gentle, sustained pressure into these connective tissue restrictions to eliminate pain and restore motion. By going slowly and waiting for the body’s natural rhythm, the fascia responds by elongating, rehydrating, and reorganizing. If you're having trouble finding relief for your fibromyalgia pain, it may be worth trying MFR. But if your symptoms don't begin to improve within a few weeks, MFR may not be the right treatment for you.

Oxygen Therapy.

This is an effective, and safe means of treating and managing the symptoms of ME/CFS, particularly fatigue.   Oxygen Therapy is an intermittent inhalation of 98% oxygen in a barochamber chamber at a pressure higher than normal.

Oxygen Therapy causes a dramatic increase in the amount of dissolved oxygen carried by the blood which enables oxygenation of areas with compromised circulation. It also activates oxidant-antioxidant system, stimulates angio- and neurogenesis, modulates inflammatory response, induces brain neuroplasticity, and possesses analgesic effect. Oxygen therapy involves a 20 -session initial protocol, consecutive sessions, then weekly sessions to help manage symptoms.

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Disclaimer: The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment