How to Get Diagnosed Properly
and Why It Matters

Image of Stethoscope and NotepadOne of the biggest mistakes I’ve observed with people who suspect that they might have Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) is that they never actually get diagnosed by a trained physician.

Self-diagnosing ME/CFS or FM can be such a serious mistake because the symptoms of these illnesses can easily resemble those of other illnesses, such as multiple sclerosis, lupus, or malignancies. These other illnesses have often more straight-forward treatments and must be treated in order to prevent them from getting worse.

Therefore, the only proper way to get diagnosed with ME/CFS or FM is by a trained physician.

Another reason for getting a proper diagnosis is that it is important to document your illness in case you ever want to apply for disability through your employer or the social security system. Of course, our goal is to prevent this from becoming necessary, but you want to be on the safe side.

A proper diagnosis also tends to initiate greater understanding and support from the people around you. By Understanding what’s going on with you, your network of support can better accommodate your needs and adjust to your new situation.

How to find a doctor who is knowledgeable in
making a CFS/ME or FM diagnosis

For many, the best option to get diagnosed is to find a doctor who already knows how to properly diagnose ME/CFS or FM.

The best strategy to finding a good ME/CFS or FM doctor in your area is to ask someone from your local ME/CFS or FM patient support group. The amount of wisdom your local support group holds about resources for your illness will blow you away.

How do you get in touch with someone from your local support group?

First, search the internet for something along the lines of, “Chronic Fatigue Syndrome Support Group [Name of Your Town].”

sccenshot of search results for local support groupIf you have Fibromyalgia, you’ll of course have to type into the search box Fibromyalgia instead of Chronic Fatigue Syndrome.

If the search result doesn’t display a support group in your town, try the Google search for the town next to you, or the next bigger town.

If you cannot or don’t want to attend a support group meeting in person, you can often just call or email the support group organizer to get your questions answered.

Another way to find a knowledgeable physician is to search for recommendations online. Begin you search at this list of databases for locating good doctors and clinics.

Getting diagnosed by a doctor who knows and trusts you

If you have a high-trust relationship with a local doctor who is not knowledgeable in diagnosing ME/CFS or FM, your best option may be to educate him or her about your illness, rather than switching to a new doctor.

When you have a difficult to understand condition, such as ME/CFS or FM, the trust between you and your doctor is everything. You’ve probably already experienced that it drives doctors crazy when, as is the case with ME/CFS and FM, their lab tests are useless in determining your condition.

The more trust there is between you and your doctor, the more weight your words will have, and the better the chance will be that your doctor will take you seriously and treat you respectfully.

I was fortunate in that my doctor knew me well, even before I got ill, because he had seen me many times for allergies, colds, and sports injuries. It also helped that he knew my parents and my siblings. He trusted me enough to try treatments with me that he had never even heard about, but that I had read about in a book on treating Chronic Fatigue Syndrome. Our trust played a huge role in his treating me not just as a “case,” but as a partner in recovering my health.

Now, if you decide to educate a trusted doctor about ME/CFS FM, how do you actually do it?

The two best resources I’ve found for educating your doctor about diagnosing ME/CFS are the guidelines to diagnosing ME/CFS from the University of Maryland Medical Center, which I highly recommend, or these guidelines from the CDC. A good general overview of ME/CFS provides this CFS fact sheet from the CFIDS Association of America.

My favorite resource on the diagnosis of Fibromyalgia is from the Fibromyalgia Network. Access it by clicking here.

Even if your doctor is familiar with ME/CFS or FM, I recommend that you or your caretaker read the above-mentioned guidelines, so that you can confirm that your doctor knows what he or she is doing.

Recommended actions for this week

  1. To find a doctor who is knowledgeable in making a CFS/ME or FM diagnosis, tap into the wisdom of your local support group.
  2. If you decide to educate a trusted doctor about Chronic Fatigue Syndrome or Fibromyalgia, familiarize yourself with these three excellent educational resources.

I wish you good luck this week with taking this important step for improving your health.

Best to your health,
Johannes' Signature


If you’ve got here without being subscribed to the free CFS Recovery Project E-Course, you’re missing out. This is lesson #2 on how to reach your maximum health and happiness potential if you have Chronic Fatigue Syndrome or Fibromyalgia. If you’re not already a subscriber, click here to learn more.

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