Managing Chronic Fatigue Syndrome (ME/CFS)
ME (Myalgic Encephalomyelitis), also known as "Chronic Fatigue Syndrome" and "Tapanui Flu", has been described as an abnormal immune system response to any number of infectious or environmental triggers, causing a long term illness that can result in significant disability. It affects the functions of many body systems, particularly the immune, endocrine and nervous systems. More info on ME/CFS causes from "The Environmental Illness Resource" here.
Symptoms and Solutions
Note: Always seek advice from a doctor before beginning any listed treatments. Treatments can affect everyone differently and people with ME/CFS can be particularly sensitive to medications and supplements.
ME/CFS comes with a wide range of symptoms. Some of the main symptoms include
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Fatigue
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Loss of memory or concentration
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Sore throat
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Swollen glands
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Unexplained muscle pain
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Pain that moves from one joint to another without swelling or redness
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Headache of a new type, pattern or severity
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Unrefreshing sleep
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Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Managing Fatigue In ME/CFS
Fatigue is the main symptom of Chronic Fatigue Syndrome. This is not like
a normal feeling of being tired but more a feeling of debilitating exhaustion
following physical or mental exercise. This is known as a crash and fatigue
from a crash will last a minimum of 24 hours and in some case leaves the sufferer bed bound and in extreme cases unable to perform daily functions such as showering or brushing your teeth.
Medical Treatments For Managing Fatigue In ME/CFS
B12 injections:
Some patients with CFS have had increases in energy by receiving B12 injections. These can only be administered by your doctor.
Low Dose Naltrexone: LDN may be able to reregulate immune functioning and increase endorphins that may be low in the disorder. LDN’s ability to modulate natural killer cell activity upwards and reduce B-cell activity may help to re-regulate the immune response in CFS and/or Fibromyalgia. It has the potential to reduce the fatigue, pain and other symptoms in some patients.
Pacing:
Patients with CFS are advised to set manageable daily activity/exercise goals and balance their activity with rest to avoid possible over-doing which may worsen their symptoms. People who can function within their individual limits may then try to gradually and gently increase activity while maintaining pacing methods. Further information on this is available on the "Towards Wellness Program".
Professional Support:
Working with a trained practitioner can assist you to develop skills to calm anxiety and can also equip you with knowledge to find your next steps towards wellness. Please ensure that you find a practitioner who understands how to navigate the territory of complex chronic health conditions.
Alternative Treatments For Managing Fatigue In ME/CFS
D-Ribose:
Some patients with ME/CFS have had increases in energy by taking D-Ribose. D-Ribose is a unique sugar that supports the body's mitochondrial cycle and helps the the body recycle ATP.
Magnesium:
Some CFS patients benefit as magnesium supplementation may decrease fatigue, calm nerves, relieve muscle aches and spasms, relieve constipation and is also important for heart health.
Co-Enzyme Q10:
is an additional supplement for CFS patients to support their mitochondrial cycle and ATP production. It can be very effective when used in conjunction with D-Ribose.
Acupuncture:
Some ME/CFS patients find relief from acupuncture. Acupuncture clears any blockages in the body and assists the body to repair and heal itself.
Tai Chi:
An ancient martial art/exercise that has been used to help CFS patients. When performing any type of movement or exercise it is important to stay within your energy envelope and not over exert yourself.
Mindfulness:
CFS causes changes to the immune system and makes the nervous system "wired" which leads to fatigue. An excellent "no drugs" way to calm the immune system is through mindfulness techniques. Mindfulness is a set of skills for healing, intuition, insight, calmness, focus, resilience and hope that you can develop to counter the stresses that chronic illness brings. You can literally "train your mind to promote healing. Mindfulness has a positive flow on affect into every aspect of a person’s life.
Managing Cognitive Dysfunction In ME/CFS
CFS sufferers will commonly suffer from slow thinking, memory lapses, cognitive fatigue and
poor concentration. This is due to the fact that the brain has sluggish blood flow in sufferers
resulting in oxygen shortages to brain cells. In order to improve cognitive dysfunction as well as brain function we must look at improving brain circulation, metabolism, and neurotransmitter release.
Medical Treatments For Treating Cognitive Dysfunction In ME/CFS
Oestrogen:
The female hormone oestrogen has been shown to improve circulation in the brain of CFS patients. Both soy and linseed have high levels of oestrogen. Females can improve oestrogen via either the contraceptive pill in younger women and hormone replacement therapy.
Calium-channel blockers, Verapamil and Nimodipine:
Can improve blood circulation in CFS patients. Both these drugs may decrease blood pressure so increase fluid and salt intake whilst using these.
Neurotransmitter drugs:
Such as gabapentin can improve abnormal brain function in CFS patients. They slow down electrical activity which helps cfs patients as too much electrical activity is resposible for many cfs symptoms.
CFS sufferers will commonly suffer from slow thinking, memory lapses, cognitive fatigue and poor concentration. This is due to the fact that the brain has sluggish blood flow in sufferers resulting in oxygen shortages to brain cells. In order to improve cognitive dysfunction as well as brain function we must look at improving brain circulation, metabolism, and neurotransmitter release.
Alternative Treatments For Cognitive Dysfunction In ME/CFS
Mindfulness for CFS:
is a set of skills for healing, intuition, insight, calmness, focus, resilience and hope that you can develop to counter the stresses that CFS brings. You can literally "train your mind to promote healing. Mindfulness has a positive flow on affect into every aspect of a person’s life.
Sleep management:
Healthy sleep is very important for good brain function especially for CFS patients, refer under the symptom guide for "sleep" below.
Brain activities:
Exercising the brain is important for CFS patients and the phrase "use it or lose it" is applicable to the brain. Study, puzzles or art are great ways to exercise the brain.
Salt and fluid:
extra salt and fluids will increase blood volume and increase brain circulation for CFS patients.
B12:
Some CFS patients have low B12 levels in their cerebrospinal fluid, B12 supplementation through sublingual methylcobalamin b12 vitamins or b12 injections as above are effective.
Omega 3:
Rich fish oil has been proven to benefit brain function in CFS patients and is available in supplement form.
Ginkgo:
is a herb which dilates blood vessels, hence improving brain blood flow for CFS patients. As with all supplements please check with your doctor if this supplement is suitable for you.
Managing Muscle Pain In ME/CFS
For information on muscle and connective tissue pain, refer to our section on Fibromyalgia
For information on joint pain, refer to our section on Arthritis
Managing Headaches In ME/CFS
Most people with CFS will suffer from headaches at some point in their journey. In fact, “headaches of a new type, pattern, or severity" is actually one of the diagnosis criteria’s for people with ME/CFS. These headaches may be a symptom of your CFS or a possibly comorbid condition. It is important to see your doctor if you experience headaches of a new or more severe nature.
The two types of headaches that generally occur in Chronic Fatigue Syndrome are “tension headaches” and “migraines”.
Tension headaches have an uncomfortable feeling of a tightening band around your head, they are usually caused by factors that make your head and neck tense e.g poor posture
Migraines on the other hand have a feeling of intense pain, sometimes throbbing and sensory stimulation such as light or sound can make the pain much worse. (Refer our article on managing sound and light sensitivities here). Some people experience visual disturbances like seeing spots and blurry vision, nausea is common in some too. Both migraines and ME/CFS are caused by issue with irregular nervous system issues.
Medical Treatments For Headaches In ME/CFS
Painkillers:
Such as paracetamol can provide temporary symptom relief for CFS patients.
Tricylics:
Such as Amitriptyline, Nortriptyline and Doxepin are old style antidepressants which may be used to improve sleep and also give symptom relief for headaches for CFS patients.
Anti-migraine drugs:
are available to provide relief. Unfortunately people with CFS are often very sensitive to medication so always start on slow dosages.
Alternative Treatments For Managing Headaches in ME/CFS
Mindfulness for CFS:
Mindfulness is a strategy that has many health benefits including controlling pain.
Acupuncture and acupressure:
Have been used in china for years to help relieve pain and poor circulation in CFS patients.
The cold approach:
Headaches can be sometimes be relieved by going for a cold swim or putting a cold crystal band around the head. The coldness shrinks the blood vessels and can relieve pain and pressure.
Willow bark:
can relieve pain as well as aspirin and CFS patients may benefit from it. It contains the same ingredient as aspirin so those sensitive to aspirin and those with sensitive stomachs should avoid.
They may be due to brain or skull structure, or due to infections and inflammation, but the most common cause of headaches is stress.
Sleep Management In Chronic Fatigue Syndrome
Most people with CFS struggle with sleep either struggling to get to sleep or waking up multiple times during their slumber, because of this, sleep is rarely refreshing and healing.
What causes sleep disturbances in Chronic Fatigue Syndrome? Our immune system is regulated by two systems, the HPA axis and the sympathetic nervous system. The HPA axis controls reactions to stress and regulates many body other processes, including digestion. mood and energy storage.
The sympathetic nervous system is responsible for the body’s fight or flight response.
Both of these systems are affected adversely in ME/CFS, the HPA axis is weakened whilst the sympathetic nervous system is stimulated.
Our body needs a good night sleep in order to repair, heal, boost the immune system to fight off invaders and to recharge our energy stores. Unfortunately in ME/CFS when the body is supposed to be resting, the body is in fight or flight response which is a terrible recipe for a good nights slumber.
Why does this happen? Fortunately there are many strategies that we are able to implement to enhance our sleep.
Medical Treatments For Sleep In ME/CFS
Trycylics such as Amitriptyline, Nortriptyline and Doxepin:
are old style antidepressants which may be used to improve sleep in CFS patients and also give them symptom relief for headaches.
Melatonin:
Is excellent for helping people with CFS to fall asleep and is popular with shift workers for this reason. It may be used in conjunction with Trycylics. It can cause some to feel groggy the next morning.
Antihistamines:
like promethazine can help with sleep for CFS patients and they are also beneficial for those with allergies and sinus issues. They are non addictive but can also leave you feeling groggy the next morning.
Orphenadrine:
is a muscle relaxant and helps with night cramps, spasms, muscle pain and twitching.
Ropinirole:
can help relieve restless legs syndrome in CFS patients.
Quetiapine:
is a mood disorder medication however at very low doses it has helped ME/CFS patients with sleep issues.
Alternative Treatments For Sleep In ME/CFS
Environment improvements:
It is important for CFS patients to be comfortable, have the right temperature, be quiet and be really dark. Before looking at any sleep medication, ensure you have the basics right first.
Lifestyle:
Reducing stress levels is important and mindfulness can help with this. Avoiding alcohol, too much sugar and caffeine in the late evening is paramount to a good slumber. Exposure to sunlight during the day prepares the body for melatonin release at the right times which will help you fall asleep
Natural approaches:
Progressive relaxation techniques, soft music, massage and warm baths can all help. Chamomile tea has been proven to be effective with relaxation.
Magnesium and calcium supplements:
can relieve night cramps in CFS patients if these are a barrier to getting a good nights rest.
5-HTP:
Over the counter 5-HTP helps some CFS patients as does hot milk which contains the same ingredient.
Protein before bed:
Eating a protein snack (eggs, milk or nuts) or having a protein shake before bed helps regulate blood sugar levels throughout the night and helps promote good quality sleep.
Managing Digestion In Chronic Fatigue Syndrome
A common issue with CFS patients is IBS (Irritable Bowel Syndrome) and can include cramps, wind, pain, vomiting, bloating, irregular bowel movements and undigested food. This issue may be caused from chronic bowel infection, food allergies/food sensitivities, bacterial imbalance, stress, medication or an overactive immune system.
Medical Treatments For Digestion In ME/CFS
Losec:
is a drug that works by slowing down acid production in the stomach to relieve stomach pain in CFS patients.
Trycylics:
Low doses of amitriptyline or nortriptyline can improve sleep quality and also aid with pain management so these drugs are a good option for CFS patients suffering from IBS.
Alternative Treatments For Digestion In ME/CFS
Diet:
Eat little and eat often. Ensure your diet has variety. Avoid foods that aggravate, you may need to keep a food diary to identify food sensitivities. Do not drink too much with meals. Eat a small protein snack at bed time.
Stress management:
Reducing stress levels is important and mindfulness can help with this. Hypnosis is useful for soothing IBS, pain and nausea. Counselling and Cognitive Behavioural Therapy are helpful for many with stomach issues. Sleep can really help (refer sleep section above).
Probiotics:
work by increasing the numbers of healthy bacteria that reside in the gut while decreasing the unhealthy bacteria at the same time. They improve the ability of the gut walls capacity to act as a barrier to keep unwanted particles out of the body. Probiotics decrease your body’s own production of inflammation-producing compounds, lowering inflammation in the gut and throughout the body
Managing Anxiety In Chronic Fatigue Syndrome
Illness puts both emotional and physical stress on the body and often accompanying this stress comes a feeling of anxiety. Anxiety can express itself as feelings of fear or terror and you may also experience panic attacks (heart palpatations, shortness of breath, chest pain). Anxiety is not necessarily always strictly an emotional issue. In diseases with ANS (autonomic nervous system) problems like ME/CFS, POTS and Fibromyalgia, issues with the ANS, blood flow, blood volume or sensory integration can produce anxious or possibly even panic-like states.
Medical Treatments For Anxiety In ME/CFS
SSRI's (Selective Serotonin Reuptake Inhibitors):
Such as Citalopram and Paroxetine may be used to increase serotonin levels and relieve anxiety to some extent. It is important to note that many people feel worse before they feel better on SSRI's and those with CFS can experience mild to severe side effects in the beginning stages of this medication. Dicuss in length with a GP that has experience with CFS patients taking SSRI's before beginning these medications.
Benzodiazepines:
Such as Lorazepam and Xanax are drugs that slow your central nervous system (CNS) and provide a tranquilizing effect. This calming result can help you manage anxiety and nervousness. Both of these drugs are powerful medications and potentially addictive so are only prescribed for short-term use. They are often used when a patient is beginning SSRI's to relieve the potential increased anxiety from starting the SSRI's.
Alternative Treatments For Anxiety In ME/
Mindfulness for CFS:
Mindfulness is a strategy that has many health benefits including controlling anxiety. Mindfulness is a set of skills for healing, intuition, insight, calmness, focus, resilience and hope that you can develop to counter the stresses that chronic illness brings. You can literally "train your mind to promote healing. Mindfulness has a positive flow on affect into every aspect of a person’s life.
Music:
Everyone has individual music tastes but slow soothing music can promote feelings of relaxation which help reieve anxiety.
Yoga & Taichi:
Promotes good breathing, mental calm and gentle exercise. It is important to start slowly and pace yourself accordingly to ensure you stay within your limits and not over exert yourself. Some patients who are bedboun may benefit from breathing exercises instead if movement is not feasible.
Cognitive Behaviour Therapy:
Are techniques that help us identify when we have negative thought patterns and replace these negative thoughts with positive ones. CBT has had mixed results causing some people to get worse however it has produced good results for a few, do your own research and discuss with a CFS practitioner before engaging in CBT.
Managing Pain In Chronic Fatigue Syndrome
In most cases of ME/CFS some form of pain will be experienced at some point. These pains include joint pain, muscular pain, headaches, gastrointestinal, bladder, menstrual and lymph gland pain too. Widespread muscle and connective tissue pain is known as Fibromyalgia - more information on Fibromyalgia
Medical Treatments For Pain In ME/CFS
Analgesics:
Such as paracetamol or aspirin work best for localised pain. For more serious pain there is codeine and tramadol. For very severe pain prescription drugs include morphine, oxycodone and pethidine.
NSAIDs:
work by reducing inflammation. Diclofenac, ibuprofen and naproxen are good for sprains, strains, infection related pain and joint pain associated with arthritis. These medications can be quite harsh on the stomach and many ME/CFS patients cope with a subsidary medication known as COX-2 inhibitors such as celecoxib.
Anticonvulsants such as carbamazepine and sodium valproate:
are drugs intended for chronic pain which decrease `electric impulses` and decrease our experience of pain. The dose needs to be built up gradually over time and initially you may experience side effects however most of these go away with time. As with any medication, discuss with your doctor.
Alternative Treatments For Pain In ME/CFS
Mindfulness:
Mindfulness is a strategy that has many health benefits including controlling pain.
Acupuncture and Hypnosis:
Are methods that have been proven to relieve pain in some individuals.
Willow Bark:
A natural painkiller that contains the same active ingredient as aspirin. Avoid if you have an aspirin sensitivity.
Omega 3 Fish Oils:
Help to block inflammatory cytokines, and may give pain relief to some.
Olive Oil:
Contains similar properties to ibuprofen.
Capsicum Cream:
Can be used for localised joint or muscle pain. Use carefully and avoid broken skin as it can burn.
Managing Sound, Smell and Light Sensitivities In ME/CFS
Refer our article on managing sensitivities - click here
Diagnosis and Tests For Chronic Fatigue Syndrome
There is no one specific test to diagnose ME/CFS so in order for a diagnosis to be made, tests must be undertaken to confirm that nothing else is the cause of the ME symptoms. It is also pertinent to do symptom specific tests, for instance if the patient has liver related symptoms then the doctor may wish to do additional liver tests such as an ultrasound etc.
A good guide for preliminary tests to help with a CFS diagnosis
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Full blood count and differential
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Eythrocyte sedimentation rate (ESR) and C-reactive protein (CRP)
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Iron studies
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Vitamin B12, Folate
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Vitamin D
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Routine biochemistry (urea, electrolytes, calcium, glucose)
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Liver function
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Renal function
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Thyroid function
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Creatine kinase
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Morning cortisol
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Urinalysis
Frequently Asked Questions
Will I recover from ME/CFS? How long does recovery take?
Whilst it may feel like ME/CFS is never ending, the outlook is good. A significant amount of patients will see improvement over time.
Approximately 10% of adult patients make a full recovery; the percentage is higher in younger patients. Those who get an early diagnose and begin treatment earlier tend to have a higher chance of recovery than those that don’t.
Recovery time varies from patient to patient, to be diagnosed with ME/CFS symptoms must last at least 6 months. Generally the symptoms are worst in the first 1-2 years before the patient begins to improve.
I can’t get a diagnosis for ME/CFS, what should I do?
There are a couple of reasons why getting a diagnosis can be difficult, there is currently no specific biomarker or blood test for ME/CFS and some doctors have not been educated in the illness. The best fix for this problem is to find a ME/CFS friendly doctor, your local ME/CFS support group will be able to point you in the right direction.
If changing doctors is not an option for you then print off the pages here and take them to your doctor
Is ME/CFS contagious or fatal?
There is no current evidence to prove that the illness is contagious or fatal. People with the illness are currently not able to donate blood however this is believed to be a cautionary measure taken by the blood banks until more is known about the illness.
Should ME/CFS patients get a flu shot?
There are pros and cons associated with getting a flu shot for ME/CFS patients.
Pros – A dose of the flu could cause serious complications for those with ME. Having a Flu shot could protect you from this.
Cons - people with ME/CFS do sometimes report having a relapse or significant exacerbation of symptoms following a vaccination.
There was a survey done in the UK by ME Association and nearly half said the vaccination did not affect their ME, 20% said it made them slightly worse, 25% said it made them much worse and 6% actually had an improvement with their ME.
It is advisable to discuss the pros and cons with your treating physician.
Is ME/CFS causing all of my symptoms?
It is common for people with ME/CFS to have co-existing conditions. Ensure that you have all symptoms investigated by your doctor and have all appropriate tests performed. The sooner you get any other conditions treated the better your chance of recovery.
Do you have ME/CFS?
I hope you have found this page useful.
I highly recommend you check out my article “43 ways to manage ME/CFS" which has some very useful ideas that may just help you on your road to recovery.
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