About ME/CFS

First up: "Chronic Fatigue Syndrome" has to be the lamest and most misleading name they could possibly have come up with for this condition.  I actually laughed when my doctor first suggested it.  Feeling tired was the least of my problems!  I was far more interested in finding an explanation for the dizziness, headaches, sore throat, bruises, muscle pain, reduced lung capacity, blurry vision, dehydration, nausea, sensitivity to smell and sound and the marked decrease in ability to digest food.

Chronic Fatigue!  What a joke!  I wanted to know what was really wrong with me and I wanted to know fast because frankly, after three months with no diagnosis I was pretty scared that I might just keep getting worse until I died!

Then I looked through the info she gave me.

Good News: People rarely die of CFS (though to be clear, there have been fatalities - early heart failure being a big culprit).

Bad News: There's no cure and no way of predicting how the illness will progress.  Some people seem to get relatively well again over time, others end up bed ridden for the rest of their lives.  Most are somewhere in between and many (like me) find there is an ebb and flow, with symptoms both improving and worsening unpredictably over time.

But what exactly is ME/CFS?

Well, the acronym stands for: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

 In English, Myalgic Encephalomyelitis translates to: Muscle Pain and Brain/Spinal Cord Inflammation.

Current research suggests that ME/CFS is a Neuroimmune Disease, not unlike MS or Lupus.  Post mortems have found inflammation of the spinal cord in those who have died from the condition.  SPECT scans indicate abnormal blood flow and sometimes legions in the brains of the living.  Loose connections have been identified between a number of viruses and the initial onset of ME/CFS.

More research desperately needs to be done to better understand the current findings.  Funding is almost non existent.  (To put it in perspective there is approximately $5 of research money per CFS patient worldwide, compared to $400 for MS and $3,000 for HIV.)

The Symptoms of ME/CFS?

ME/CFS effects every system of the body. It is not just fatigue. Fatigue is a big factor with ME/CFS and post exertional malaise (i.e. "Payback") has been identified as the key symptom, but people with ME/CFS also experience dysfunction of the immune, digestive, cardiovascular and nervous systems.  Cognitive functioning is also quite impaired.

Basically, when you have ME/CFS, there is no part of your body that works quite as it should.

I'm not going to go any further into the specific symptoms of ME/CFS here as there are enough pages all over the web with different versions of what the syndrome entails and I'd prefer not to add another one.

Instead, I'll recommend that people interested in better understanding the condition go with:

The Canadian Clinical Guidelines

The Canadians have done an awesome job with this, much preferable to the unhelpfully vague CDC guidelines which annoy the heck out of many people with CFS - mostly because it makes research into treatments close to impossible if your guidelines do not exclude, for example, people with clinical depression rather than CFS.

Even less helpful is the psychiatric approach still favoured in the UK.  If you have just been diagnosed with CFS and your doctor is trying to tell you it's a psychiatric disorder because they've read the "research" coming out of Britain, my advice would be to find a new doctor as soon as you can.

That said, situational depression can go hand in hand with the forced decrease in activity that CFS inevitably brings about, and if you think cognitive behavioural therapy can help you with that ... who am I to stand in the way?

The Canadian guidelines are preferred by most of the patient group because they are much more detailed and specific when it comes to the symptoms of CFS and advocate treatments focused on the biological.

A really great resource for family members of people with ME/CFS can be found here: 

I particularly liked the part about acceptance.

Acceptance of whatever level of ability the person with CFS is at, with no particular expectation of change or improvement, really is the key to that person's sanity.  Beyond pacing and eating healthy there's not a hell of a lot we can do about being so damn ill, so it's very important to know that the people close to us will support us despite this.

Also, there is nothing more annoying than people thinking they've discovered the magic bullet on Google.  People with CFS improve and relapse all the time and attribute it to all sorts of things that they then post on the internet.  It's not consistent though, and you can't try all fifty thousand "cures" at once, especially since they all tend to be pretty expensive.

Just let the person with CFS work out their own treatments with their chosen medical professional.  No pressure.
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