Saturday, September 20, 2008

CFS versus ME -- same? different? maybe?

There are some militant activists in the British Commonwealth who unequivocally declare that "CFS and ME are not the same thing." They’re half-right.

Some so-called experts, many of them British, have wrongly tried to apply the CFS label to psychologically-based Fatigue Syndrome, or to anyone who has the symptom of chronic fatigue from any cause, in order to dip their hands into the cookie jar of research funding, which they would not be eligible for as psychologists investigating a viral/neurological illness that has nothing to do with psychological or psychosomatic causes.

However, in the US, since 1988, it has been virtually impossible to get an ME diagnosis. Like Pluto was demoted from planetary status, ME was demoted entirely out of existence by CDC and replaced by CFS. Only a few doctors are radical enough to continue using the ME diagnosis in the face of CDC’s insistence that this disease must now be called CFS.

Dr. Elizabeth Dowsett observes "M.E. Research workers ... should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!"

What happened in 1988 to cause the mysterious disappearance of valuable information? That’s right, CDC wiped ME off the books and replaced it with CFS, and in doing so, effectively erased decades of prior research and experience, by claiming that ME no longer existed and CFS was something else entirely. However, some doctors trained before 1988 recognized that CFS was just ME by a different name, and have kept that name alive – humoring CDC and insurance companies by calling it CFS when they fill out billing forms, but continuing to use the knowledge they had from when it was called ME, telling the patients that it used to be called Myalgic Encephalomyelitis or non-paralytic poliomyelitis, and keeping alive the connection that before the polio vaccine, ME and polio travelled in side-by-side epidemics, and those who got ME were later immune to polio – if that’s not a clue that this is not a purely psychiatric problem, I don’t know what is!

So, don’t let these activists mislead you. While CFS and ME may not always be the same thing in British English, they are the same thing in American English.

Under political pressure from Social Security and private disability insurers, CDC has now tried to also legislate CFS out of existence, by watering down the diagnostic criteria to the point that one of the Original CFS patients observes that those of us who were diagnosed with ME or post-viral syndrome before the name change, now don’t really fit the diagnostic criteria for the disease which was "created" based on the patients (such as he) who have Formerly-Known-As-ME. Like the man without a country, we are now patients without a disease, since we’re no longer allowed to call it ME, either.

In a classic case of The Emperor Has No Clothes, a number of CFS activists have noted that CDC’s information page about CFS specifically states that certain tests are not necessary for the diagnosis of CFS: all of them tests which should be abnormal in someone who has what we have, i.e., Original CFS. To cover up past dastardly deeds, they continue to spread misinformation about CFS, to the detriment of patients whose doctors rely on CDC providing accurate information.

If the only symptom you have is fatigue, you probably don’t have the CFS that used to be called ME. Take a deep breath, relax, and find a doctor who is willing to figure out the true source of your fatigue: it may well be something that can be fixed.

But if fatigue is the tip of the iceberg and you have a whole host of neurological complaints (see the complete symptom list – no, you don’t need to have them all – at ), then you can feel comfortable in reading information about both CFS and ME.

No comments: