Healthcare Provider Guides

This section of the website is to guide all healthcare providers with best practice and practical resources that you can use when working with people with ME/CFS (adults and pediatrics). Also, all healthcare providers, please be sure to visit the “Diagnosis/Treatment - Physicians” page as well as the “Physician Resources” page on this website for other pertinent medical information and resources.

Exercise and ME/CFS – What You Need to Know

GET: Statement about ME and Exercise 

Humility and Acceptance

Physios for ME – Exercise and ME

Workwell Foundation GET Letter to Healthcare Providers

Workwell Foundation Videos on Graded Exercise Therapy Contraindications & Post-Exertional Malaise

Graded exercise therapy (G.E.T.) is defined as any activity progression that has a pre-established frequency, intensity, and/or duration increase regardless of the patient's symptoms. ME/CFS interventions need to be based on functional activities that are qualitatively evaluated, not quantitatively.

Pacing & Heart Rate Monitoring

Heart rate monitoring is a beneficial tool in monitoring activity levels and reducing the frequency of and severity of PEM. OT’s and PT’s, who are very knowledgable about ME/CFS and the dangers of G.E.T. for people with ME/CFS, can play an important role in teaching their clients how to calculate this (NOTE: It’s a lower number than you probably realize) and stay within the restricted heart rate via pacing, equipment recommendations, etc. when taking part in daily activities. A new “Visible” app is also available. Heart Rate Variability is another area that has proven helpful to track. It is another tool that OT’s and PT’s should be aware of when educating their clients.

Activity Pacing and Heart Rate Monitoring 

Heart Rate Monitoring – Physios for ME 

Pacing and Energy Management

ME/CFS Activity Management with a Heart Rate Monitor

Heart Rate Variability Information

Your Crash in a Graph? How Heart Rate Variability Testing Could Help You Improve Your Health

Heart Rate Variability (HRV) An Underused ME/CFS/FM Management Tool: PT II

Assessing & Documenting Post-Exertional Malaise in Patients

“Dr. Leonard Jason and his colleagues at DePaul University have developed several validated questionnaires to assess for post-exertional malaise (PEM) in adults and children with ME/CFS.These questionnaires provide much more useful information about the aftereffects of activity compared to tests like a functional capacity evaluation which only provides a snapshot in time. (Note: When working with Long Covid patients it is vital to screen them for PEM as well, because their treatment approach will need to be greatly modified from traditional treatment if it is present.)

The simplest to administer and score is called the DSQ Short Form PEM Questionnaire. Have your patients fill it out (or any other longer versions) prior to their appointment to avoid cognitive fatigue. To see the different versions of the questionnaire visit Dr. Jason’s website (first link below)” (Credit to Physical Therapy/Occupational Therapy Resources for Treating ME/CFS Facebook Group)

https://www.leonardjason.com/cfsme_measures-2/ (The PEM Questionnaires are found closer to the bottom of that website. There are also separate Symptoms Questionnaires.)

Documenting Disability

  • PTOT 4 MECFS Group - The start of this video pertains to Americans, but the rest of the video is excellent for OT’s, PT’s, and any physicians (especially those that perform Independent Medical Exams for insurance companies) who are seeing patients with ME/CFS. A KEY point is that if you are seeing someone with ME/CFS in-office to do an assessment (physical or cognitive), that individual may be able to do all your testing (and may do so despite feeling unwell), but you are not going to see the full effects of PEM (post-exertional malaise) that occurs AFTER that person leaves your office and goes home. So you, as a healthcare professional, need to ensure monitoring of symptoms and monitoring for PEM occurs AFTER that person leaves your office, and that you follow-up with that individual (may need to be done by phonecall due to PEM) on a different day(s). It is not sufficient to do a one-time, in-office assessment, never see that person again, and write up a report of how an individual is affected by ME, based on that one time where you saw/assessed the individual. Please realize that you are only capturing a small snapshot of a ME person’s life, when you see him/her. Your report needs to build this in. However, there are some useful tips, discussed in this webinar, that you could do at an in-home assessment, that would support the functional limitations and disability.

    The other thing you need to account for is that people with ME/CFS have good and bad days, and that it is unpredictable in nature. Another KEY point is that OT’s and PT’s may recognize a potential ME/CFS diagnosis before the physician does, simply because the therapists spend more time with these patients, and they can then alert physicians. PT’s and OT’s are in an excellent position to help provide functional information and challenges to an ME/CFS patient’s family doctor or to the specialist who is helping with the disability process.

  • Documenting disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) article - with input from Amy Mooney, OTR - Although this article is American based, many of the points apply to Canada as well.

Functional Ability Scales to Use with Patients/Clients

These functional ability scales are useful for all healthcare providers to use with their patients when establishing a baseline and monitoring symptoms and function of patients over time. A few different options are provided below.

CFS Ability Scale

CFIDS Disability Scale

Functional Ability Scale

M.E. Disability Scale

M.E. Functional Capacity Scale

Lessons Learned from ME/CFS to Apply to Other Post-Viral Illnesses

Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity

Resources Specific to Occupational Therapists & Physiotherapists

Physical Therapist/Occupational Therapist Resources for Treating ME/CFS Facebook Page

If you are an Occupational Therapist or a Physiotherapist who works with people with ME/CFS, or you are an OT or PT with ME/CFS, or are an OT/PT who is a caregiver to a family member with ME/CFS, it is highly recommended that you join this Facebook group. You will get up-to-date guidance on assessments and interventions WITHOUT causing harm or functional decline, as well as recognizing and treating common comorbid conditions in people with ME/CFS. Their “Guides” section is invaluable, and has been put together by PT’s and OT’s with personal experience of ME. In addition, there is a lot of information that is also applicable to people living with Long Covid.

10-Minute NASA Lean Test for Orthostatic Intolerance (OI)

Orthostatic Intolerance is common in people with ME/CFS, and there are medical treatments (medications, salt and fluids, etc.) and OT interventions (activity modifications, equipment) that can be beneficial.

This 10-minute NASA Lean test is an important test that can be completed by family physicians in their offices, by an Occupational Therapist or Physiotherapist, or by the patient (with the help of a caregiver/family member). The NASA Lean Test (NLT) is a simple, point-of-care method which can aid ME/CFS diagnosis and guide management and treatment of Orthostatic Intolerance. It also provides OBJECTIVE evidence of symptoms described by patients with orthostatic intolerance.

The most updated 2022 instructions are included here.

And here is a video about the topic of OI in ME/CFS from the Education Videos available at the Bateman Horne Center

ME/CFS in the Pediatric Population

Voices from the Shadows

Pediatric Primer 2017: Diagnosis & Management in Young People (Printable version)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

2016 Revisions to the 2010/2011 Fibromyalgia Diagnostic Criteria

As Fibromyalgia is a common co-morbidity of ME/CFS, it is important to understand the most recent diagnostic criteria.

“ME/CFS and Fibromyalgia both have fatigue as components of their symptom profiles. Going back to the basics with a thorough history will potentially uncover whether someone has PEM due to ME/CFS or fatigue due to disrupted sleep and pain due to Fibromyalgia. In more straightforward cases of Fibromyalgia (be careful, these are clinically rare), gentle, gradual progression of exercise is appropriate and ultimately tolerated, whereas when Fibromyalgia occurs with ME/CFS, it is not. ME/CFS guidelines for treatment prevail including using heart rate pacing, rate of perceived exertion, and assessment of any type of PEM that may occur post activity. Treatment in these cases should remain function-based and not graded exercise-based (GET).” (Credit goes to the Physical Therapist/Occupational Therapist Resources for Treating ME/CFS Facebook Group)

Here are the key points (credit also goes to the PT/OT Resources for Treating ME/CFS Facebook Group - link listed above):

Current criteria include: 

(1) Generalized pain, defined as pain in at least 4 of 5 regions, is present. 

(2) Symptoms have been present at a similar level for at least 3 months. 

(3) Widespread pain index (WPI) ≥ 7 and symptom severity scale (SSS) score ≥ 5 OR WPI of 4–6 and SSS score ≥ 9. 

(4) A diagnosis of fibromyalgia is valid irrespective of other diagnoses. A diagnosis of fibromyalgia does not exclude the presence of other clinically important illnesses. 

Here is the link to the Revisions

AAPT Diagnostic Criteria for Fibromyalgia

Hypermobile Ehlers Danlos Syndrome (hEDS) & Hypermobility Spectrum Disorders (HSD)

People with ME/CFS often have associated joint hypermobility (connective tissue disorders), which is significantly underdiagnosed despite the impacts on quality of life. You may have learned that EDS or HSD is not a common disorder, but that couldn’t be further from the truth. Although not always a fan of news stories which need to be taken with a grain of salt, this one is well-done.

One of the reasons you need to screen for hypermobility is because, when paired with ME/CFS, it can multiply the impact on a patient’s quality of life (uses up more daily “spoons”). Some types of EDS have vascular components, which are very serious and life threatening.

Physiotherapists and Occupational Therapists have the unique skillset to identify these people, in addition to patient’s physicians. In fact, joint hypermobility may be identified before the diagnosis of ME/CFS is made, or vice versa. In any case, careful and thorough assessment by therapists can bring this to the attention of the patient’s doctor. By being aware of this association, you may assist with a more timely diagnosis. Hypermobile joints and ME/CFS together can further worsen the symptoms (including pain and levels of fatigue and reduced functioning) that a patient experiences.

Hypermobile Spectrum Disorder (use the Beighton Scoring System- The Beighton score is a good and quick screening tool for the likely presence of generalized joint hypermobility. However, there has been some criticism of the Beighton, because 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. So this is something that clinicians need to be aware of. 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)

“Sometimes when you hear hoofbeats, it really is a zebra.”

Communicating Via Spoon Theory

Patients and their healthcare providers can benefit by discussing activities of daily living by referring to “spoons,” or how much energy it takes to do certain tasks. It is important to understand that the number of spoons an activity takes can fluctuate from day to day, and be impacted by rest/sleep (or lack of it), pain levels, having a cold, and more. Click on the image below for examples. This is the best example to understand what Spoon Theory is.

Caring for the Severe to Very Severe People with ME/CFS

Please see this part of the website.

Also see this article for more Practical Tips as well

Learn from Whitney Dafoe (Person with very severe ME) Trigger Warning: Very emotional content illustrating the very real and devastating effects of severe and very severe ME on people’s lives. And here is Whitney’s blog.

Understanding the Cognitive Dysfunction in ME/CFS