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 impossible
—but 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 3
—Stage 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 Stage
—perhaps 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.
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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.]
