Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, December 28, 2012

The 5 Stages of Dealing with ME/CFS

I was having lunch with a fellow patient yesterday and we started talking about how many patients  pass through the same stages of dealing with ME/CFS.  This is evident when you talk to other patients online or in person.  We realized that very little changes over time in the ME/CFS community.  Patients who get ill today will basically follow the same path, trying the same treatments (often in the same order) as patients who first became ill 5 or 10 years ago.  Here's my attempt to define the stages of dealing with ME/CFS.

A caveat: there will be plenty of exceptions, as we all have different etiologies, levels of functionality, economic means, and social support.  But in my experience through interacting with hundreds of other patients online, this is generally how it goes.  Admittedly, this might be shaded toward my personal experience, although I've tried to eliminate personal bias.

Also, my sample must be biased toward online patients.  There is an entire subgroup of patients who never do any research and simply trust their doctors implicitly for diagnosis and treatment.  They are not represented here.

Keep in mind, patients are likely to drop out of this progression at any stage if they improve to about 90% or better.

Stage 1 - Pre-Diagnosis

This stage can last anywhere from 4 months to 10 years or more.  Beginning around the turn of the millennium  with the advent of the internet and the increasing acceptance of the ME/CFS diagnosis, it became more common for patients to receive an early diagnosis, i.e. within a year or two of onset.

This is often a time of fear and anxiety, as the lack of a diagnosis causes us to wonder endlessly about the possible causes of our illness.  Usually we visit somewhere between 10 to 30 doctors before receiving an ME/CFS diagnosis (rarely less than 10).  Often the ME/CFS diagnosis is guided by our own "process of elimination," having ruled out nearly every other possible cause of our symptoms before finally seeking out a doctor knowledgeable about ME/CFS.

Stage 2 - Heavy Research & Networking

After diagnosis, many patients begin a period of heavy research, if their cognitive abilities still allow.  Sometimes "brain fog" prevents this.  For those who can manage it, we often dive into ME/CFS literature with the goal of learning everything we can about this illness.  We start with internet sources, including message boards, and sometimes even branch into medical journals and books.  We often begin networking with other patients during this stage, through internet and in-person support groups.

Almost inevitably, the heavy research begins to slow down.  The term "burn out" is often used by patients reflecting on Stage 2.  For others, they don't so much burn out as reach the end of the line.  At some point, one begins stumbling across the same literature again and again and becomes satisfied that they're more-or-less familiar with the general ME/CFS landscape.  This is not to say we feel we've read "everything"that would be impossiblebut we have a working knowledge of most of the major theories of etiology and treatment.

Also during this stage, we usually begin exploring treatments, but maybe with only one or two supplements in combination with lifestyle changes (less work, diet changes).  Maybe a single prescription drug is tried.  Some of us overestimate our chances of a full and quick recovery.  If a patient has any inclination toward activism, it usually appears (and peaks) in this stage.

Stage 3 - Exploring a Multitude of Treatments

There's significant overlap between Stages 2 and 3Stage 3 usually begins somewhere in the middle of Stage 2.  But eventually many patients find themselves on dozens of treatments (supplements and prescriptions), either at the same time, or in a series of experiments.  Some of us look for the right combination of treatments, while others look for the best single treatment.  This stage is guided by a mixture of doctor advice and ME/CFS community advice.  The research usually doesn't end during this stage (or any other stage) but it slows significantly.  We will still fully explore any new research breakthroughs or "hot button issues" making the rounds on message boards, but we don't actively seek out new information as aggressively as in Stage 2.

There's a wide time frame for this Stageperhaps 6 months to 10 years or more.

Stage 4 - Settling Down

At some point, we become satisfied that we have explored most treatments that are reasonably available to us (given economic and geographical limitations), and we've ruled out many treatments that didn't help or made us worse.  We settle on one to three treatments that are most effective plus key lifestyle changes.

At this stage, some patients are more jaded and less hopeful for a full recovery.  The goal here is just  to regain some quality of life.  Hope for a full recovery at this stage often rests in the prospect of some future game-changing medical breakthrough.  We study news of ongoing and burgeoning research more closely than past research results.

(Stage 5 - Relapse)

If a patient suffers a major relapse or a sudden deterioration, sometimes they repeat Stages 2 through 4 in an abbreviated way.


If you are new to ME/CFS and you're reading this, you might be wondering, "can't I  skip ahead to Stage 4?"  The answer is, no.  My advice to you would be to go through the these stages like the rest of us did.  If you don't, you'll always be wondering if you might have found something that worked for you.  Good luck and may you never reach the next stage.

[Update 12/31/12:  I submitted a draft of this post for feedback in the Members section of Phoenix Rising.  Many users there offered interesting comments, additions and criticisms.  The discussion is worth reading if you are a PR member.]


  1. After 2 1/2 years, looks like I've settled into Stage 4. Wish I could do more research but the neurocognitive function just isn't there most days. Poo.

    1. I can imagine how frustrating that must be with the brain fog. Arrrgh.

  2. I had a long comment that I just lost! UGH!! I'll try to recreate it....

    You are spot on with your observation of the stages. Though I became ill 20 years ago, I was fortunate to receive a diagnosis within a year. Those were the days before internet, but I had a friend at the time who was ill and put me on to Dr. Bell's book, The Doctor's Guide to Chronic Fatigue Syndrome...the primer at the time. I also read Timothy Kenny's book regarding his experience with CFS. You are right, here is a time of settling when what is available has been tried...and mostly failed...and a point of saturation with the available information. The stirrings have come for me when I've experienced long-term crashes and am in need of affirmation, contact with PWCs, and new information. I was fortunate to discover Cort Johnson's Pheonix Rising website in it's early days. There weren't many who had, so the forums weren't as overwhelming as they can be now. I am not a voracious internet user or blog reader, so PR has served as a springboard for any other research on the internet I've done. As you know, it was there I discovered your blog while looking for patients of Dr. Chia before my first appointment with him. As I have no one in my life I can talk with that has ME/CFS, I am most grateful for all of these connections.

    By way of encouragement, I pray, I'm not surprised you have been experiencing a crash, given your activities and incredible stress leading up to Christmas. Having the pressure of three very difficult deadlines in a position of such responsibility all at once would result in a crash during ANY season! I don't believe this is a permanent set-back. You have made incredible progress! I've had a bit of a crash myself, and I don't have work-related responsibilites anymore...but I was also able to do much over the last month. I have to remember that, like you, I am still in the midst of treatments that continue to change. When I left my first appointment with Dr. C, I was so hopeful and realized that for the next two years my new reality was TREATMENT for the illness, not just the symptoms...and would involve a roller-coaster ride with progress (hopefully) and crashes...but that it would all be with a purpose...actually getting me better!

    Here's hoping the Epivir helps to move you along in this process of getting better...and if not, you know'll what to do next. You are very blessed to have found Dr. C so early in your journey. For him, I finally have a doctor who I can ask what to do next without having to attempt to explain my illness and receiving a blank stare in return!

    I'm encouraged to see you back to tells me you are doing better.
    Hang in there!
    cris...resting thru the pain

    1. I hate when that happens, Cris...losing a post. It happens to me all the time. There's something about Blogger's reply format that sometimes loses information when you hit the "publish" button.

      Thanks for that insight into your history. That is really interesting. I always learn a lot from those who came before me in their journey with ME/CFS.

      Thank you for the support as well.

      Best to you and your family in the new year.


  3. Very true and accurate in your observations. This should be published in every book that deals with M.E. and how to cope with it, especially the "no you can't skip ahead to stage 4". This is probably one of the most annoying things about M.E. Many people who have M.E. are quick learners and can normally skip steps when learning something new, as they apply what they have learnt before.

    M.E. makes you take the time to properly digest information and formulate it into a usable working practice.

    I was diagnosed 6 years ago and have had severe M.E. for 7 years now, but through backtracking, my GP and my Consultants believe I have had mild M.E. for over 20 years. I find the research fascinating and at times infuriating. I believe that someone's way of dealing and coping with M.E. is as unique and individual as M.E. itself.

    I was very lucky as my Homoeopathic Consultant has M.E. as well, so much of what I would normally have to say was already implied with him. Were it not for homoeopathy I would not be as well as I am today. That said, this is my path and this is how I choose to walk it as it feels right for me. I don't expect a cure, nor even a full understanding of M.E. All I really expect is for me to enjoy each day, try the things that feel right and negate the things that don't.

    Thank you for posting this, very insightful.

    Annemarie (in pain, enjoying the day and ready to sleep once again)

    1. Thanks so much for sharing your story Annemarie. I always feel like a learn so much from hearing other people's stories of their journey with ME/CFS. I wish you all the best.

  4. I AM DEFINETLY IN STAGE 4, THE "JADED AND HOPELESS" .After over 25 years of seeking multiple "holistic" health care options, I ended up at this place.
    After a decade of treatment, another decade of 1/2 functioning, a decade of extreme personal life
    changes has put me in stage 4.
    I THOUGHT I WAS ON THE COMEBACK TRAIL. I had even enrolled in an OVR program and had sarted to
    take a beginning computer course so i could catch up to the millinium !
    Ironically, I was on my way to a medical physical at my PCP's office, when BAM ! i was rear ended !
    THE car accident , put me into a never ending cycle of pain, and the MRI reports took me out of the OVR program !
    After 7 years of attempts to "rehab" , I have resigned myself that "this is as good as it's going
    to get" .
    SINCE I am over 60 now, I pass myself off as "retired" . I live my life at my pace, do what i want to do, when i want to do it...and can do it. it's not an ideal existance.......but all other
    options have been removed.
    I have just recently found an on-line support group...all old frindships have faded away since i can no longer "live life" at their pace....they all grew tired of my pace.
    As a former Medical Technologist/Microbiologist , I find it a sad commentary on the state of affairs of the Medical / health care community that 25 years later, there is still no solid research into the case & cure of this illness.

    1. Patricia, your story is heartbreaking and just goes to illustrate another of the difficulties we deal with. Not only does ME/CFS make us sick directly, but it makes us so much more vulnerable to other health issues. It seems to use up all of our cushion between health and total collapse so that things like car crashes can set us back indefinitely. For some, a car crash or other physical trauma is the thing that kicks it all off in the first place...just ask Laura Hildenbrand.

      Thanks for your insights, and best of luck to you.

  5. This is a very interesting blog post. We're into stage 6. You have to re-invent yourself. You'd love to find a treatment that would mend you but you stop looking, settle on what you've got, occasionally checking if there's anything for the new bits and pieces of symptoms that come along. You develop a hobby or interest and even though you can only do it at a lowish level that becomes more of your identity than the ME is. We live like the elderly and have a shadow existence on the fringes of society but we have made ourselves a life and although not fulfilled in the ways we would want to be, it's a life. Those who don't make it into 6 get stuck with depression, an unresolved bereavement. The Kübler Ross stages of bereavement can prove helpful for identifying this and helping move on.

    1. Great points Liz. You know, I considered addressing some of your points in my original post, but I wasn't sure where to put them. It seems that for those who do reach Stage 6, it can happen at any point on the timeline. In other words, based on my conversations with other PWMEs, it seems we're liable to reach Stage 6 at any point while progressing through stages 2, 3, 4, or 5. I should probably address your points in my post somehow. I'll revise it when I get a chance. Thanks for bringing that up!

  6. thank you so much for posting this version of stages of ME...I have been diagnosed with fibromyalgia for almost twelve years now, and always felt there was more to the diagnosis than first told about it. Now in the past two years things have gotten much, much worse in my daily activities and just trying to live a basic lifestyle. I fit the description of ME to a tee,...and I find its not good news for me,...but, at least it is an answer to the confusion of what's been happening and why I have gotten no answers or direction for the way my body has been going through a slow "death" so to speak over the past two years. There is never enough sleep,...sometimes I can't sleep at all !! Other times I am like a walking zombie or I fall asleep standing up or sitting up in a chair. I've been checked for the sleep disorders and have mild apnea,...nothing serious according to the test results and doctors opinion. However, if you saw me or knew my daily struggles and evening struggles you would know I suffer from sleep problems. My appetite leaves nothing to be desired either....and the muscle weakness has limited me tremendously. I can't seem to accomplish any activity at all even when I have a great desire to do so....its very frustrating. Pain....its just unbearable at this point....areas under the skin feel like "bubble wrap" that cause a great deal of pain and seems have no relief either....doctors have given no answer to these problems either...which greatly disturbs me. Breathing during activity has become difficult and tests of the heart show no areas of trouble after being tested with numerous procedures which were painful in themselves showed nothing to be concerned about with the heart. Yet, my pulse raises when I move around,....I have swelling in different areas of my body that don't even look normal anymore...I get distended abdomen (not stomach) in the upper region of abdomen that doctors don't give me any answers to why this happens....I'm just a mess!! Not one doctor has the answer to my health issues when I discuss them with them either....they brush it off or they tell me to lose weight....I have lost weight!! Not a little weight...enough to make a difference!! But, again, answers for me and no help to make me feel better!! So, now I read the post about ME and BAM!!! It describes me and my health issues so well,...its almost like you had a camera on my life!! But now what do I do with this knowledge?? Afraid to approach my doctors and worried no one will even listen to me....this may just be brushed off like any other time I've mentioned these health issues before.....even with some direction to go in I feel it will be the same as before with my doctors....what to do.....

    1. Hello ladibugcrazi, 12 years :-( As far as I know fibro and ME could well all be part of the same illness. Most fibro sufferers have lots of ME symptoms and vice versa. I'm part of a really nice fb group where we chat about these things. Link below. We all have very mixed experience with doctors. The new International Consensus Criteria for ME which was published last July should have helped but it seems to have been overlooked. I've put a link to my blog too, I hope Patrick doesn't mind. I don't give answers but some of the stuff I've found useful, we've been ill since 1996. and there's a page with some useful links too. xx


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  8. I ended up doing stage 1 and 3 at the same time, because I kept getting diagnosed with other secondary things by my naturopath like heavy metal poisoning and food allergies. By the time I finally got a fibro dx and then later a genetic connective tissue diagnoses (with ME as a secondary issue, most likely), I'd already pretty much tried a lot of the treatment options.

    But I do see so many people in this basic cycle that you've described here, so it's helpful. I agree with Liz that the reinvention stage is vital, also.


    1. I had heavy metal poising too, to some extent. I think it's from the breakdown of our bodies' natural detox pathways that comes along with ME/CFS.

      Thanks for stopping by Amy - good to hear from you.


  9. Patrick, your five stages are right on. I have had ME/CFS for over 20 years. I know now that it was a mild case in the beginning. I was able to work at my highly stressful management job until the "crash". I was at stage 4 during those working years. All my energy went to my job. I could do no extracurricular activities on week nights. This was not always possible, and I would suffer the next day. I also tried to rest during the weekends. If I had a choice, the social/planned activity would be on Saturday. A busy Sunday usually ruined a few days of the week for me. I am fortunate to live in Houston, TX; where there is a leading authority on ME/CFS and she is my doctor. She has a handout in her office that intrigues me. It is called Chronic Fatigue Syndrome and Mitochondrial Dsyfunction. "A very useful analogy is to think of the body as a car. What supplies the energy and the power to make that car work is the engine. Effectively, mitochondria are the engines of our cells-they supply the energy necessary for all cellular processes to take place. It supplies the energy in the of Adenosine Triphosphate (ATP). ME/CFS is the symptom caused by mitochondrial failure." My doctor recommends intravenous glutathione or glutathione/ATP injections. I tried the glutathione injections at two different times and did not get any relief. I am going to ask about intravenous glutathione. This is because I went to stage 5, major relapse, in January 2011. I went to stages 2 & 3 with a vengeance. I am participating in a study for Fred Friedberg, Ph.D. at Stony Brook, State Univ of NY.
    I was very fortunate to love my work and my manager. But the high stress took it's toll on me-I had to retire In Sept 2011; earlier than I had planned. My computer and tv are my best friends.
    It saddens me that my husband does not understand. He works, and then goes to the lake house he has been building. I see him one or two nights a week. Does anyone have any suggestions?
    Sorry for the long post.

    1. Dear Joyce,
      I'm so sorry you were so badly advised in the first place. If you'd been told to have 6 months complete rest at the beginning you might have been able to recuperate properly instead of having to live sort of half a life for so long and eventually crashing. It really is disgraceful.

      Has your husband ever accompanied you to the dr - it might help him understand. That's if he wants to understand.

    2. Joyce, thank you for sharing your story...I always learn so much when people share their experiences with ME/CFS.

      You know, I have been tirelessly researching ever since I became ill (like so many of us) and I'm now fairly convinced that ME/CFS comes down to two issues- mitochondrial energy and the immune system. (These are related, and every thing else traces back to these two issues). Except it seems the mitochondrial/ATP issue is larger than that because it's tied into the methylation cycle. A block in any part the methylation cycle could affect the ATP cycle downstream.

      The authorities on fixing the methylation block will probably tell you that supplementing glutathione won't help unless/until you fix the methylation block. (See Yakso, Van Konyenberg, etc). I'm becoming more and more convinced that the way to go is to get genetic testing and figure out exactly what your SNPs are, and then follow a neutrigenomics regimine that's specifically tailored to your genetic polymorphisms. Otherwise, we're just guessing and trying to stumble on the right combination of supplements & diet (which would be like winning the lottery.)

      I'm just starting down that road now, so we'll see if it works, but Dr. Yakso (and patients who have tried it) are very convincing that this is a major key to remission. For a basic overview, check out

      Anyway, I'm sorry to just dump a bunch of esoteric nonsense on you, which might not make any sense unless you've also researched this stuff. But I wanted to give you my thoughts on the glutathione issue since I think you're on the right track, but I wondered if it might be a little more complicated that supplementing glutathione alone. Just my $0.02.

      Over the next 6 months or so, I'll be following Dr. Yakso's plan tailored to my genetic testing results, so we'll find out if my suspicion is correct.

  10. antibiotics can help. i've collected some links on my blog xx

  11. Liz and Patrick, thanks so much for your responses. I did find your feedback helpful.
    Patrick, I look forward to hearing how you do with Dr. Yakso's plan.

    Thanks, Joyce

  12. "No [you can't skip to step 4]. If you don't, you'll always be wondering if you might have found something that worked for you." SO true. Even if you just halfway do Steps 2 and 3, you'll be haunted every time you watch someone else go through them, wondering if you'd just worked at it a little harder or longer if you'd be where you are and feeling ashamed for being sick so long and knowing less.