Sunday, April 7, 2013

How I Presented With Myalgic Encephalomyelitis (ME)

I won't go into too much detail, but I am doctor and was in the middle of my residency training (specialty training after medical school) and everything was going really well: I was very healthy and physically active, was learning a lot and doing well in a residency that I loved.

Then one day I woke up and felt like I was getting a viral infection. I had a sore throat, fatigue, myalgias, headaches, and malaise. I went to work anyway because I usually just push through such things but throughout the day my symptoms became worse and worse so that by the time the day was over, I was barely able to walk and had to take multiple little breaks to make it back to my car.

I was not too concerned at first - I thought it was probably a relatively harmless virus, or at worst, the flu, and that it would go away quickly. Unfortunately I was wrong and it got worse until I was bedridden and had to be cared for completely by my spouse within about a week. By this time I knew this was not the flu or anything remotely similar to any infection I ever had before - it was nothing like the flu or mono that I had personally experienced, or anything I had ever learned about in my extensive training. I went to a local doctor who, even though I was also a MD, didn't really listen to me when I tried to explain this this was no simple virus, and told me I would be fine in a couple more days. He ran some standard blood work that appeared relatively normal. After a couple days I decided to try to go back to work and will myself into feeling better - that lasted a couple hours before I literally could not stand or sit upright anymore. That was the first time that I noticed how slow my cognition had become and how my brain wouldn't correctly filter out ambient stimuli any more.

One of the reasons I decided to become a physician and went to medical school in the first place was that I am close to some individuals who have ME (they were diagnosed with chronic fatigue syndrome at the time) and saw how much they suffered from the illness itself and at the hands of those who swore to "first do no harm...."  Consequently, I kept up with the developments in the ME/CFS world throughout medical school and ever since. Because of that knowledge, it did not take me very long to figure out I had a classic moderate to severe case of Myalgic Encephalomyelitis per the international consensus criteria paper. I hoped and prayed that I was wrong. I even hoped something that, before that point in my life, I never thought possible - that it would turn out to be something else, anything else, even terrible diseases like HIV, lupus, a number of different cancers, etc. rather than the untreatable, severely disabling, and poorly understood disease I knew was wreaking havoc on my body.

I went to a few more local doctors who could not figure out what was wrong with me even though they had to admit something was wrong since normal people don't have a 60 beat per minute increase in their heart rate from lying down to standing, but they were downright unwilling to listen to anything I had to say regarding ME or even postural orthostatic tachycardia syndrome (POTS), which was blatantly obvious! Those doctors had never heard the term ME and clearly thought people with CFS were in some sort of gray area that they didn't really know what to do with, even though when questioned, actually had no idea what CFS really was other than that it involved "fatigue" in some way :-)

Eventually I went to one of the "ME specialists" in the USA and was officially diagnosed with ME based on my history, physical exam, and a number of diagnostic studies. Unfortunately, since then I have not significantly improved - I remain bedridden on bad days and essentially housebound on good days. So, at this point, this is not a story about how I beat ME, or an encouraging story about recovery, but just an honest one that I hope will help others with this same debilitating disease.

In the next few posts I will write about some things that I hope will help others including how to interact with doctors, what diagnostic studies may be helpful, and my own personal theories regarding the pathophysiology of ME. In the future, I hope to write summaries and critiques of ME research articles and whatever I feel might be beneficial for people reading my blog.

Soon, I will create a section where you can send me requests for things that you would like me to write about, but you can also use the comments feature on any of my posts.

At this point I wish to remain anonymous for a number of reasons but that could change in the future depending how things work out. Due to the fact that I am a physician I also have to include a disclaimer: anything I say in this blog is my own personal opinion and will undoubtedly change over time; this blog does not establish a doctor-patient relationship; nothing written here is specific medical advice for anyone; any changes to your treatment should always be handled by you and your personal physician.

5 comments:

  1. Fascinating post. I am sorry you have ME. I do urge you to "come out of the closet" about having ME as it will greatly help the credibility of the blog and thus usefulness to pwME. Also it will generally help pwME to have as many people come out of anonymity as possible especially MDs.

    Thank you for the two posts so far, they are very good. : )

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  2. Also thanks for calling the disease ME rather than CFS!

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  3. Hi, thanks for the comment you left recently on my blog. It really caught my attention that your user-name is MDwithME. Because even though the ME blogosphere is pretty crowded, I have never seen a blog by an actual MD with ME, as it were. I think this could be fascinating to follow.

    If you don't mind, I'm going to do a quick post on my blog alerting my small readership to this blog.

    And thanks for your comments on the Dr. Cheney video. I did not know.

    Patrick

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  4. Dr. Jamie Deckoff-Jones is an MD with ME and she has a blog: X RX Blog

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  5. Yes, I am very familiar with her and her blog, I will link it here for others: http://www.x-rx.net/blog

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