Patient & Caregiver Resources

ME/CFS often develops after a person does not recover from a flu-like illness, mononucleosis or another herpes virus, or other infection. Patients experience numerous symptoms and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.

ME/CFS is NOT a mental health disorder! In the past, physicians believed that ME/CFS was a mental health disorder or “all in the patient’s head.” However, studies and research illustrated that ME/CFS is clearly a biological illness, not a psychological disorder. Patients with ME/CFS are NOT trying to score drugs, nor are they being lazy or seeking sympathy. Patients have multiple pathophysiological changes that affect multiple systems in the body.

The first step, if you haven’t already, is to receive a diagnosis from your physician(s). If you are reading this, and you think that ME/CFS may be what you have, refer your doctor to this website which is full of resources to help him/her make the diagnosis. On the other hand, if you have already been diagnosed with ME/CFS, but you feel like your doctor would benefit from the information found on this website, we also recommend you give him/her the website address. We have spent a lot of time putting together the resources you’ll find on this website so that it represents best practices and the kind of care that people with ME/CFS deserve. The information on this site can also be shared with anyone on your healthcare team.

It is important to get the diagnosis for many reasons. One is that those who are diagnosed earlier on in their illness, have the best prognosis. Full remission is very rare in ME/CFS, but the goal is to keep the illness from progressing, resulting in more functional decline. In addition, when you have a diagnosis, you and your healthcare team know what you’re dealing with, and you can use this website to refer them to best practices so that you can advocate for yourself and retain as much health and quality of life as possible.

While you’re waiting for a diagnosis or if you already have a diagnosis, the most important thing you can do is learn how to MANAGE this illness.  This involves resting and pacing yourself to avoid the level of exertion which worsens your symptoms. Otherwise, multiple crashes can add up over time and cause disease progression; further reducing a person's already limited ability to engage in activity. There are things you can do such as heart rate monitoring (found under the “Healthcare Provider Guides” section of this website), using a shower stool to save your energy, and many other things. If you could use a wheelchair for outings to save your energy due to decreased mobility, a referral to an Occupational Therapist can be very useful.

But don’t despair. Many people with ME/CFS can lessen their symptoms or the frequency of them, and improve their quality of life by learning to pay attention to their bodies and what it is telling them. It is also a good idea to find other people who know what you’re going through, and we invite you to join our Manitoba Support Group meetings.

Below is some of the best and most beneficial information that the members of the group have found useful. Remember every person with ME/CFS has a different journey and not everything listed below works for everyone. We are hoping you will find something that works for you!

Important Note: We are not endorsing any of the below websites or their resources. Not all of them may fit your unique needs. Please do your own research and consult a qualified healthcare professional for advice, as needed.