1. Get a doctor who believes ME/CFS is a biological illness
- If you have a trusted GP have him or her read this or this. Hospital stays are very hard on people with ME/CFS because they are stressful, involve demanding tests, prevent rest, and increase risk of infection.
- There aren’t many ME/CFS specialists yet, so find a local physician who believes you. Use telemedicine if you can.
- In many provinces, blood tests can be done by a mobile nurse – your GP should request this service.
- Keep hope: a cure is coming. In the past 3 years, enormous progress has been made in understanding the underlying biology of ME/CFS.
Many people with ME/CFS have an atypical sensitivity to medications. Therefore, most experienced physicians take a “start low, go slow” approach to medications and supplements. People with ME/CFS (or a subset of people with ME/CFS) appear to have widescale, immune system dysregulation, and this dysregulation appears to change with time. Their immune systems can be hyper-active or under-responsive, or both! It is complex and even dangerous to try to medicate your way out of ME/CFS without the aid of an experienced physician.
- Physicians who treat ME/CFS generally try to treat the most severe symptoms and avoid obstructing the body’s natural attempts to heal. Typically, they begin with sleep disorder, pain, orthostatic intolerance, and cognitive dysfunction. Some physicians treat cognitive problems with stimulants (e.g. Adderall), but most specialists recommend avoiding the use of stimulants because they cause an increase in fatigue. Effective medications are few, and many come with risks.
- There may soon be clinical trials available to Canadians with ME/CFS for the drugs
Rituximab (rituxan) andAmpligen (rintatolimod.) Both drugs are approved for use in Canada, but not accessible. To revive the testing of Ampligen Millions Missing Canada has launched a petition, and formed a partnership with the pharmaceutical company that makes the drug.
- Edited to add: A Phase III Clinical Trial of Rituximab for ME/CFS conducted in Norway did not provide the necessary evidence to proceed with a clinical trial in Canada.
- Researchers at UBC a developed a chip-based immunosignature assay (test) that can identify patients with ME/CFS who will benefit from B Cell Depletion with Rituximab. They are currently validating the assay using blinded blood samples from the Norwegian Rituximab Phase III trial. Results for the trial will be published in 2018. Rituximab is available for the treatment of Rheumatoid arthritis in Canada.
- Anti-virals such as Valtrex (valaciclovir) and Valcyte (Valganciclovir) are often used to treat ME/CFS. The courses prescribed are long-term and high dose and should be discussed with a specialist. Like most pharmaceutical treatments for ME/CFS only some patients will respond well. Cellular researchers provide a note of caution. Further clinical trial evidence is required to add clarity to decide who will benefit from these treatments and what in fact their mechanism on the cells is – whether it is killing virus load, or somehow otherwise regulating the immune system.
- Edited to add: in 2018, the Severely Ill trial showed that patients with ME/CFS do not appear to be ill because of the continuing presence of viral activity. Viral activity may trigger the illness, but it does not appear to be the reason why patients become so very ill. Read more.
- Recent research by researchers in Australia show that there is a “depression subset” of patients with ME/CFS. In British survey 35%- 40% of people with ME/CFS surveyed had taken antidepressants. Most felt relief of symptoms but 30% felt worse after taking them.
Sites such as HealthRising.org or PhoenixRising.org can be helpful sources for how patients have treated symptoms and personalized their own treatment protocols. All medication treatments need to be discussed with your physician.
2. Eliminate stress
Just as there appears to be a “depression subset”, there appears also to be an “anxiety subset” of people with ME/CFS. Both of the following appear to be true: ME/CFS alters your body’s ability to handle stress and one’s ability to handle stress may put you at risk for ME/CFS. In fact some intriguing new research and drug development related to stress response sensitivity is discussed in the “Cortene Hypothesis“.
For many with ME/CFS, the disease feels like a psychological problem because your body is in the same state as in anxiety. Remember it is physical first.
- If your “fight or flight” system is hyperactive. You feel anxious, your digestion is slowed and your sensitivity to light, sound, smell and touch are heightened.
- Some may be experiencing an autoimmune response to your Beta2 Adrenergic Receptors (β2AR). Beta Blockers can help, but also eliminate stress and minimize stimulation.
- You may need to scale back work, or put a pause on school. You may need to apply for disability income from your private insurer, a provincial social assistance program, and the CPP disability benefit.
- If you experience a lot of sensitivity, many people choose to limit stimulation from electronics. Avoid all games or challenges with timers or countdowns.
- Complex visual processing – watching movies, working on the computer, and watching or playing video games – is deceptively demanding on your brain. You need to rest or avoid them altogether until you have established what your energy envelope is/
- If you remain in school, get permission to have a reduced schedule, extended deadlines and more time for tests.
- Reduce interactions with stressful people and situations, but try not to blame them for your sensations and feelings. Remember, the illness itself is likely increasing your sensitivity. Suggest friends and families keep conversations brief, and avoid sad and stressful subjects. If you live with others, educate them on why you need more quiet and more routine than in the past, and ask for their support.
- Headphones, earplugs, and sunglasses can all help reduce sensory overload.
3. Develop a support network
At the very least, you may need help with essentials such as grocery shopping, preparing meals and navigating appointments.
- Be specific. People will express concern and want to help. Have a list of tasks on hand and don’t be shy about assigning them.
- Facebook has many groups for people with ME/CFS – use the “search” feature to find an online community that suits you, and ask to join (many are “closed groups” with an admin or moderator).
4. Eat differently
Diet changes are not a cure, yet changes to your diet can chip away at some of the symptoms of ME/CFS.
- To reduce the inflammation elements associated with ME/CFS, introduce fish oil supplements and oily fish (salmon, sardines, mackerel) to your diet.
- Amino acids used to produce acetyl-CoA are depleted in women with ME/CFS, and so many patients try a ketogenic diet to compensate. Others caution that the ketogenic diet harms the gut’s microbiome.
- Get lots of folate from plants. Try green smoothies – with ground flax and/or flax oil, spinach or other dark leafy greens, berries and nut butter. Edamame (green soy beans) are good sources of folate and protein – double win!
- Keep an easy supply of protein at hand, ideally with B12. Your gut motility (speed of digestion) will be slow, and may even stop, so it may not be possible to eat heavy meals. Small amounts of protein or plant-based proteins may be easier to digest.
- Regulate insulin by increasing fibre and decreasing simple carbohydrates. If you have Small Intestine Bacterial Overgrowth (SIBO), you will need the advice of a specialist, such as a naturopath or nutritionist to determine how to manage fibre. Some high fibre foods can make SIBO worse.
- For many, eliminating dairy alleviates some symptoms with ME/CFS, but not fatigue.
- Avoid drinking fluids with food, as you may have slow gut motility (it takes a long time for food to pass through your system). For many people who have the co-morbidity POTS you may be drinking more water. Just make sure it’s not at meal time, and include more salt in your diet.
- If you are having a lot of allergic-type reactions, try a FODMAP diet. You may want to get tested for celiac.
- If you can handle caffeine, some specialists suggest adding dark chocolate, or cocoa nibs
- Eliminate alcohol
5. Treat sleep
Hypersomnia (too much sleep), insomnia (too little sleep) and sleep reversal are common symptoms with ME/CFS. Most people with ME/CFS experience unrefreshing sleep. Some are exhausted and strugle to remain awake, others become “tired but wired”.
- It appears that people with ME/CFS get too much shallow “Alpha” sleep that gets in the way of deep sleep cycles. This may be the result of changes to serotonin levels, immune-system – cytokine activation, histamines, brain changes and gut changes.
- Talk to your doctor about treating sleep if you have insomnia.
- Stick with a sleep hygiene plan – with a long wind-down before bed (get off screens, dim the lights hours before bed); wake at the same time daily; experience natural light as soon as possible after waking, to activate the pineal gland.
6. Learn about pacing.
Pacing means knowing how much energy you have in a day and staying within it, by scaling back activities and resting frequently. Your body has less ability to produce energy and recover when you use it, probably from an autoimmune attack or Cell Danger Response. When you do too much, you experience Post Exertional Malaise (PEM), the key symptom of ME/CFS. Going beyond your energy envelope produces “payback” if it’s minor and “crashing” if it’s major.
- A heart rate monitor (such as Fitbit) can help you pace – as your heart rate is an indicator of exertion.
- Charting activity and rests can also help you remember what occurred on days when you exceed your limit, and go beyond your “energy envelope”.
- Read up on the Spoon Theory. When newly-diagnosed, getting a handle on your energy envelope is hard, as it may change a lot.
- Alternate activity with rest. Many people get sick quickly early on and need to limit physical activity to 2 minutes increments, with rest in between.
- Mental effort needs pacing too, followed by rest (this includes studying, conversations, watching TV, reading or surfing the net). In highly symptomatic phases, even 10 minute increments of mental activity can be too much.
7. Exercise is not a cure
Recent research shows that there is a huge problem with the excess production of lactic acid which leaps 70 to 100 fold in some people with ME/CFS when their cells are stressed by strenuous exercise.
The core symptom of ME/CFS is post-exertional malaise, caused not only physical activity but also mental activity.
- A large consensus of patients believe that “radical rest”, not exercise, is more beneficial to recovery.
Many people with ME/CFS rule out exercise completely so they can keep doing the essential activities of daily living. Graded exercise therapy (GET) is a controversial area for which the research has been largely discredited. Recent research show that steadily increasing physical activity, without regard to symptom change, makes many patients worse. Some have found very gradual increases in activity may be possible if added very slowly and only on days when you are rested and not experiencing other symptoms.
- There appear to be different subsets of people with mild to moderate ME/CFS who can do light activity (at 40% of VO2 max, or less). Many can not.
- It is important to keep moving in gentle ways. If you are severe (bedbound), but able to maintain movement, try to spend part of every day (ideally every hour) out of bed – sitting or walking a few paces. This helps retain your body’s circulation and lymph system. The very most severe will need specialized physiotherapy support to retain movement.
8. Practice diaphragmatic breathing
It seems silly, but it’s not. Diaphragmatic breathing (belly breathing video) helps on three levels:
- It increases oxygen flow to the brain – hypoperfusion is a problem with ME/CFS.
- It increases parasympathetic tone which makes you calmer and improves your digestion
- It maintains the elasticity of the diaphragm which may be experiencing cellular changes.
9. Grieve but don’t despair
Grieving is part of the early months with ME/CFS.
- If the symptoms get worse after a period of improvement, it’s natural to grieve all over again.
- Think about symptoms as the weather. You can only control and predict so much. And when it hits, you need to be prepared to wait out the storm, with food, warmth, and a roof over your head.
- Try to move through grief and don’t form patterns of despair. Toni Bernhard’s How to Be Sick has great advice.
10. Explore creativity
People with ME/CFS often achieve extraordinary emotional maturity and sensitivity. A new perspective is needed when living a more physically-restricted – and often socially-restricted – life.