Prognosis of Chronic Fatigue Syndrome – The Ultimate Guide

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Image of woman looking into the future with binoculars

How to plan your future when you have ME/CFS?

Will you fully recover from Chronic Fatigue Syndrome or Fibromyalgia?

A full recovery is, unfortunately, not certain when you have one—or both—of these conditions.

However, what is certain is that you can very much improve your situation.

What’s more, you can be as happy as, or even happier, than before you were ill—even if you don’t belong to the group of patients who make a full recovery. And I don’t mean the “pretty-happy-for-a-sick-person” happiness. No. I mean real, unconditional, no regrets, “life-is-as-awesome-as-it-can-get” happiness.

I’m aware that this last statement might be hard for you to believe at this time, so I’ll prove and explain exactly what this means for you as part of this lesson.

What does the scientific research on recovery mean for you?

Given the nature of the illnesses, it is extremely hard to predict recovery rates in ME/CFS and FM. Some studies can be found online, however, and these suggest that full recovery occurs in only a minority of cases.

If you’d like to read a couple of study results about the prognosis of ME/CFS, have a look here:

To read a study about the prognosis of FM, click here:

To gain an understanding of recovery rates based on doctors’ and patients’ experience, you can have a look at this this blog together with its many interesting comments:

What the above studies don’t mention

Reading these studies and first-hand experiences can be disheartening.

Therefore it’s important to keep in mind Charles Shepherd’s words, reminding us that “these studies are conducted on the most severely ill patients, which means that, if you don’t belong in that category your chances for recovery are most likely better than these studies suggest”.

Even if you are very severely affected by your illness, please keep in mind that your situation is unique, which means that anything is possible.

Also, important social- and work-related matters have changed since these studies were published.

First, today you have many more resources—specifically designed for people with ME/CFS and FM—within reach via new education blogs such as Health Rising, this CFS Recovery Project and the Phoenix Rising forums; books like How to Be Sick; and products such as Amygdala Retraining Program and the Online Self Care Hour. This new wealth of resources can help you cope better with these illnesses, and improve your levels of functionality and well-being.

Second, it’s been my experience that the degree of disability and isolation that people experience with ME/CFS and FM can be tempered courtesy to the connection and work opportunities made possible through our internet-based interconnectivity. People who were previously not able to work at all may now be able to do some work from home with the World Wide Web as a way to provide their services.

Here some real-life examples of people leading a good, fulfilling life despite being sick.

ME/CFS patient Cort Johnson has found his passion and made a huge difference with websites such as Phoenix Rising or Health Rising, both of which he founded.

Toni Bernhard, who came down with ME/CFS in 2001, gives people inspiration and guidance for making the most of their lives with chronic illness through her books (highly recommended), blogs, and social media. At the end of her book How to Be Sick Toni expresses the fulfilment she found in her life: “I smiled, realizing that my life is indeed perfect.”

Joan Buchman, who shares about her life with Fibromyalgia in this essay, is not just getting by with her illness, but is finding meaning and happiness within it. She concludes her essay with the sentiment that she is currently enjoying the best phase of her life, “not in spite of [her] illness, but because of it.”

How I learned to live a fulfilling life with my illness

In hindsight, I regret that my doctor forgot to tell me, when he first diagnosed me with ME/CFS, that a fulfilling life with ME/CFS is possible. I believe that it would have made my first two years with the illness a lot less dark and hopeless.

When I got diagnosed, I thought my happiness depended on all the wonderful things I was able to do at the time: playing soccer with friends, dancing my heart out on the weekends, and striving towards my engineering degree in university.

I could no longer do any of these activities when I got sick, so I felt despondent and depressed.

I didn’t know that my happiness didn’t depend on these activities! I didn’t know that this period of my life, in which my illness robbed me from doing anything that was fun, would be followed by a period in which I would learn to befriend my changed body and live a fulfilling life within it.

Today, seven years after getting ill, I still don’t play soccer or solve difficult mathematical equations as an engineer. However, for everything that I lost back then, I’ve found another activity that makes me just as happy. Instead of playing soccer, I go on walks in the park; instead of dancing, I sing or listen to music; instead of connecting with my friends over a beer, I connect with them when I share with them heart-to-heart during my weekly meditation group meetings.

I’ve even learned to get back to contributing to this world—not as an engineer, but as a health coach and guide for people with ME/CFS and Fibromyalgia, which feels just as meaningful to me.

In a nutshell: what your prognosis means for you

In summary, Chronic Fatigue Syndrome or Fibromyalgia are likely to have a big impact on you and your family. There is no guarantee that your body will ever return to its former level of health, or if it does, how long it might take. Therefore, it is important to balance optimism with a realistic idea about your prognosis, so that you can make plan ahead and ensure that, wherever your illness takes you, you’ll be okay.

Despite the possibility of having a huge impact on your life, your illness does not condemn you to a life of misery. It poses a huge challenge, but one that you can–and will–overcome. It won’t be easy or free of emotional pain, but I believe that you have all it takes to make overcoming this illness a fulfilling challenge and a rich life experience.

Consider taking these actions

Although some of the decisions I had to make in the beginning of my illness were difficult, I’m glad that I made them. Making those decisions allowed me to create a strong foundation for reaching my optimum health and happiness, and to rebuild my life.

Below are some examples of decisions you may have to make at some point on your healing journey. Use the ideas in this list to come up with your own personal list of decisions you need to make in your life at this time:

  • Communicate to your family and friends that you have a chronic illness and how they will be affected by this in terms of your ability to earn money and fulfill their expectations of you as a parent or spouse.
    Example:

    While both my girlfriend at the time (now wife) and I, cried when I told her that my illness forced me to drop out of university, it was also incredibly freeing to get real about my situation. People will appreciate you for having the strength to be real. It will also make it easier for your network of support to adjust to your new situation.

    Sharing the truth with them is a necessary step in the process of forming a strong, illness-withstanding alliance.

  • Make sure you track the course of your illness with the help of a medical doctor, so that you have the necessary evidence you would have to provide if you ever needed to file a disability claim.
  • If your illness is debilitating and you’ve been ill for a long time, consider adjusting your current career or even transition into a new career, a career that you can be happy in even if you have physical and cognitive limitations.
  • What other decisions do you have to make to prepare for a life in which it is unknown whether you will return to full health?

It’s not easy to face your prognosis and make important decisions regarding your future.

You may be in a phase of your illness where you’re just holding on for dear life and any long-term decisions seem daunting. In this case, it’s totally OK to just have the goal of feeling better in the near future.

However, when you get to a phase of your healing journey in which you feel up to thinking about the future, I urge you to make these decisions.

They will pave the road for a fulfilling life with or without ME/CFS or FM, regardless of whether you belong to the group of people who return to their pre-illness level of health.

What actions will you take?

I’d love to hear about it in the comments. I also warmly welcome your questions and will be sure to respond.

This article is also part of a comprehensive free e-course that I’m teaching on the fundamentals of regaining your health and happiness. Learn more about the course and sign up for free.

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Comments

  1. The above journal article on ‘recovery’ rates is out of date, the updated (2005) version is here:
    http://www.ncbi.nlm.nih.gov/pubmed/15699087

    Most patients improve a little from their initial onset, but only about 10% truly recover. Then again, 1/10 sounds pretty good odds to me right now. LOL

    • Thanks for sharing the updated article, Andrew. I’ve updated the link in the article.

      I agree, 10% chance, with the right mindset can be motivating. Glad to hear your positive attitude.

      And then, the article speaks about untreated ME/CFS. I believe that treatment such as Amygdala Retraining and the Resources from Erica Verillo’s treatment guide do make a big difference.

  2. I was partially-disabled with Chronic Fatigue Syndrome for 6 years in my 20’s (ie couldn’t exercise without experiencing severe, debilitating fatigue the next day, couldn’t work full-time, severe impairment in my ability to function in life). I got my health back in 2005. Even though I have to still take great care with my health, I have been training in an intensive martial art for the past 4 years. I have been working full-time, enjoying a rich social life, and can say that I am much better off now than before I got sick.

    It’s always been so interesting to me that other people I knew at the time I was ill who also had CFS were not interested in learning about the things that worked for me. Not that healing is a one-size-fits-all arrangement, but I would think people who are ill with CFS would want to learn as much as they can from those who have broken out of the vicious cycle of this illness.

    This illness is quite complex, in my opinion, and there are multiple facets that have to be intensively addressed, often at the same time, in order to heal.

    Anyways, thanks for letting me share!

    Julie =)

    • Hi Julie,

      Thanks for sharing your thoughts.

      I’m glad that you were able to recover from Chronic Fatigue Syndrome.

      I believe that sharing one’s knowledge about what helps is a tender thing. Many people have tried so many things that they are quite discouraged to try “yet another thing” that helped someone else.

      I have had a different experience from yours in that people are quiet interested in learning what helps others. Still, thank you for sharing!

      Wishing you all the best,
      Johannes

    • Amber-Rose says:

      I’m into my second month of chronic fatigue, so i there fore have a long way to go. did any one else start with an onset of a constant headache ? Im 21 and have 6month old baby would love to hear how others have coped and managed there fatigue

  3. Kimberley B. says:

    I have recently been diagnosed with ME and I live in northern Alberta. I am currently seeing a specialist and waiting to see another and it has been a 7 month journey of which I have slept through most of it. I have become very depressed and I’m not certain that I can accept that I have this invisible condition.I really am not certain I can because at this point in time I feel like maybe I would just be better off being not here than having to live the rest of my life like this!

    • Dear Kimberly,

      It sounds like you are in a very rough patch on your journey right now.

      Please know that even though a full recovery is not guaranteed, most people can improve their health and, with the right support, can learn to live a good life even if they don’t recover fully. The people I mentioned in the article, Joan, Toni, Cort and I, are first class examples of people who moved on to living a fulfilling life with ME/CFS or Fibromyalgia.

      I, too, struggled a lot when I first got ill. I, too, did no longer want to live if I didn’t improve soon. I’ve been where you are and, given where I am now, this gives me some confidence that you, too, will be healthier and happier again soon.

      If you continue to struggle, or if you’d like to just speak anyway, I’d be happy to meet for a free chat with you to explore how I or anyone or anything else I know about can help you get better. I’d love to help. Just let me know if you’re interested, and I’ll stand by my offer.

      Warmly,
      Johannes

  4. Kelly Berendt says:

    Hi my name is Kelly Berendt
    Haven’t been diagnosed with CFS yet but pretty sure this is what I have it’s been 6 weeks now and has gotten worse had blood work done which all came back normal which I read is typical trying to stay positive my doc doesn’t seem to get it which scares me can anyone out there recommend a CFS/ ME doc in the Chicagoland area of Illinois?

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