Unfortunately, there is currently no treatment or cure for ME/CFS, but patients may work with a doctor or other medical professionals to help them manage their symptoms and co-morbid conditions. Every ME/CFS patient is different, and different treatments will affect people differently, but the key is to make every effort to improve the patient’s quality of life to some degree.

“Science is making great strides but unfortunately, returning to what life was like before getting ill is not usually possible for people with ME/CFS, FM (fibromyalgia) and MCS (multiple chemical sensitivities). “ Dr. Ellie Stein, Person with ME, Calgary, Alberta

Co-morbid conditions are those conditions that have symptoms that may overlap or worsen those caused by the ME/CFS. Treatment of these co-morbid conditions will not cure the ME/CFS, but can improve the quality of life for the individual. These co-morbid conditions should be tested for and treated by physicians and can include:

• Orthostatic Issues/Dysautonomia such as POTS (Postural Orthostatic Tachycardia Syndrome), hypotension (low blood pressure), etc - Family doctors can use the NASA Lean Test for ME/CFS (Bateman Horne Center) - can be done in office by physicians or at home by patients who can then take the results to their physician(s). Tilt Table Testing can be used in more complex cases, but it’s currently not something readily available to Manitobans, but would be beneficial for Government officials to consider funding for future patient assessment. The Nasa Lean Test (and/or the Tilt Table Test) can provide objective evidence of orthostatic intolerance issues in some people with ME/CFS. Here is more information from Dr. Brayden Yellman about Orthostatic Intolerance in people with ME/CFS, and here’s the 2020 Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic Intolerance (This article is NOT ME specific, but provided here as a resource due to it being a comorbidity of ME.)

• Mast Cell Activation Syndrome (MCAS). Here is the most updated Global Consensus 2 Criteria for diagnosis of MCAS, which included Dr. Lawrence B. Afrin, M.D.

  “This document is the most recent "consensus" document on MCAS. It was written in response to criticism of the earlier consensus document of 2011 which many in the field believed resulted in too restrictive diagnostic profile leaving many with MCAS improperly or undiagnosed. This document is criticized for possibly capturing too many individuals under the MCAS diagnostic umbrella but the argument is made that clinical treatment can then determine whether the diagnosis fits based on patient response to treatment.

  Take a look at the broad range of symptoms MCAS can generate. Are your complex, chronic patients familiar with this? Have they been examined for this? Increasingly it is seen that inclusion of MCAS management in those with ME/CFS makes a meaningful difference in symptoms.” (Credit to the “Physical Therapist/Occupational Therapist Resources for Treating ME/CFS” Facebook Group)

• Fibromyalgia and other sources of pain

• Temporomandibular Joint Disorder (TMJ)

• Irritable bowel syndrome or Celiac Disease

• Interstitial cystitis

• Chronic pelvic pain

• Multiple chemical sensitivity disorder

• Secondary depression

• Ehler’s Danlos Syndrome (including hEDS) or Hypermobile Spectrum Disorder (use the Beighton Scoring System- The Beighton score is a good screening tool that family doctors can use to detect generalized joint hypermobility. However, people often have hypermobility in joints not measured by the Beighton score, such as the jaw, neck, shoulders, wrists, hips, ankles, feet, and toes. In these situations, only relying on the Beighton score is not enough. If a person has joint hypermobility in many different areas throughout the body this can also be classified as generalized joint hypermobility.   (www.Ehlers-Danlos.com)

• Primary Sleep Disorders

• Hypothalamic pituitary adrenal axis dysregulation

Doctors and patients should focus on symptoms that pose the most significant challenge, while learning ways to manage those symptoms to allow them to resume some activities and some quality of life.

Although there is no treatment for ME/CFS, here are some other therapies that may help with symptom management or coping with the changes in one’s life. However, please be cautious about therapies that claim to cure ME/CFS, as there are currently no cures for this illness, only management methods such as energy conservation, pacing activities in your day, prioritization, and aggressive rest. By using these management methods, it can help decrease the frequency, intensity, and length of post-exertional malaise episodes. This is important to prevent the individual with ME/CFS from developing permanent worsening and a lower baseline of functioning.

Different types of therapy that may be of benefit include:

• Acceptance & Commitment Therapy (ACT)

• Acupuncture

• Chiropractic Treatments

• Cognitive Behavioural Therapy (CBT)

• Counselling

• Craniosacral therapy

• Naturopathy

• Meditation

• Massage Treatments

• Osteopathy (Perrin Technique for Manual Lymphatic & Glymphatic Drainage)

• Psychotherapy

• Trigger Point Therapy, Myofascial Release

• Restorative Yoga in lying down (speak to a qualified ME-knowledgable healthcare professional before proceeding)

  Important: CBT, ACT, and psychotherapy do NOT cure ME/CFS, and are only meant to be used to help patients with learning to cope with the emotions and changes in one’s life that accompany a chronic, physiological (and often invisible to the outside world) condition such as ME/CFS. Increased PEM, due to the cognitive and emotional effort involved of participating in CBT, ACT, or psychotherapy, is a real possibility that needs to be monitored closely. Graded Exercise Therapy (G.E.T.) is also NOT recommended for people with ME/CFS, as it can result in permanent worsening or lowering of a patient’s baseline of functioning.

We want to repeat: Unfortunately, there is currently no treatment or cure for ME/CFS, but patients can work at managing different symptoms they have with other treatments.  As an example, let’s look at just pacing their daily activities or pain management.

Doctors can prescribe medications that ease pain and brain fog, and that improve sleep. The single most important thing a patient can do is to rest and pace themselves to avoid the level of exertion which worsens their symptoms. This is best done early on in the disease, and that is why early diagnosis is very important. Resting early on is associated with the best prognosis for ME/CFS patients. A pedometer or heart rate monitor (See here for more info on heart rate monitoring) can be very useful in this regard. These monitors can be set to alarm when a certain threshold is reached, alerting the patient to the need to stop and rest so as to avoid the onslaught of post-exertional malaise (PEM). Very severely affected patients may need to set a monitoring device to "sleep mode", even when they are awake, in order for it to pick up their very limited movements throughout the day.

Each patient's PEM (or anaerobic) threshold is unique to them, and depends on factors such as age, pre-illness physical fitness, and the severity of their illness. The best way to determine yours is to pay close attention to how you feel while doing different activities and pick the heart rate which corresponds to activities which do not trigger PEM versus those that do. Further information can also be found at the Workwell Foundation website.

The idea of pacing daily activities may sound simple enough to begin on one’s own, and although these principles sound overly easy, they do take some time to learn, implement, monitor, and adjust activity levels as necessary. A lot of it requires a change in mindset and remembering that it’s not a race to the finish line, but instead slow and steady that can help. Here are 5 very basic principles.

• Stop before you overdo it.

• Don’t use goals, but instead use internal cues.

• Switch the type of activity

• Insert rest periods in between activities.

• Help yourself by using a diary or activity tracker.

Many things that can help are, in fact, not therapies but life skills that need to be adjusted because of ME/CFS. Pacing is just a pain and energy management strategy. It does not alleviate all symptoms of ME/CFS, but it can help reduce the number of times a patient’s PEM gets triggered.

A referral to a ME-knowledgable Occupational Therapist and/or Physiotherapist may be helpful for patients to learn how to implement the methods (of pacing activities of daily living, energy conservation, heart rate monitoring, pain modalities, etc) to manage their illness, but OT and PT cannot “fix” this illness. Instead, OT’s and PT’s (and physicians) can teach people how to MANAGE the illness. Physicians, Occupational Therapists or Physiotherapists can also complete the 10-minute NASA Lean Test, and learn more about how to assess for and treat the co-morbid conditions of ME/CFS, and communicate this to the physicians. Physicians, PT’s and OT’s also play an important role in recognizing co-morbid conditions in their patients, such as joint hypermobility or Ehlers Danlos Syndrome (EDS) which further hinder the energy, functioning, and quality of life of patients with ME/CFS.

You must also consider that asking a patient to attend appointments out of their home can also cause further decline in functioning as the time necessary to get ready, drive or be driven to appointments, attend appointments, etc. is very energy taxing (See Spoon Theory above) for the majority of people with ME/CFS.

We cannot stress the ME-knowledgable OT or PT enough. Harm (i.e. further decline in baseline functioning) has frequently happened in the past when patients were made to do traditional “Rehab, particularly physiotherapy” programs involving graded exercise (G.E.T.) to “restore their functioning.” See Physios for ME website.

Instead, the following commonly used PT/OT modalities can easily be adapted for utilization by the ME/CFS patient population: gentle soft tissue and joint mobilizations; thermal and electrical modalities; ADL/IADL efficiency trainings; safety training, especially focused on fall and decubitus ulcer prevention; ANS-retraining; assessment for and instructions in use of assistive devices; bracing and orthotics; gentle pain-management modalities; activities and environmental analysis and modifications; appropriate therapeutic exercise instruction (that focuses on ADL and IADL, if possible, without inducing PEM); and thoughtful referral to other helpful healthcare providers and/or collaboration with healthcare team. (Courtesy of the PT/OT Resources for Treating ME/CFS Facebook Group). Keep in mind that all therapeutic techniques, including ADL and IADL activities, must be monitored for the potential for PEM.

Doctors, please ensure that you are not causing more harm to your patients by referring them for inappropriate graded Rehab exercise programs (G.E.T.) that cause more functional decline, and can potentially cause a patient to become sicker and more housebound or bedbound. People have even deteriorated to the point of eventual death related to the illness (organ failure, as an example). The links provided throughout this website provide guidance for current best practice by ALL healthcare providers in order to ensure safe and competent practice be provided for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Please also see Physician Resources for other important and evidence-based information.