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» LymeNet Flash » Questions and Discussion » General Support » It is really Lyme will ther never get it ?

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Author Topic: It is really Lyme will ther never get it ?
MADDOG
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http://www.msn.com/en-us/health/medical/theres-a-debilitating-illness-that-makes-you-feel-exhausted-all-the-time-%e2%80%94-and-we-know-very-little-about-it/ar-BBmNv7v?li=AAa0dzB&oc id=iehp

MADDOG

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duncan
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Diagnostically, the problem with ME/CFS is, in part, the exact opposite of Lyme. In Lyme, the diagnostics have been constricted too tightly, the bar set at exclusionary - and far too often unachievable even for those with Lyme - levels.

With ME/CFS, diagnostics have been diluted beyond anything workable. Definitions have been made so broad as to allow for illnesses and disorders that have very little to do with ME/CFS at all. Who ever defined that diagnostic criteria made them (willfully or not) so amorphous as to make it hard not to fit in some how, so long as fatigue can be cited as existing over six months.

Ironically, most PWME will tell you that fatigue is just another symptom in a long litany of symptoms - frequently that fatigue is not their most serious complaint.

There can be little doubt there are people with Lyme that have been misdiagnosed with ME/CFS.

After that easy blanket statement, it starts to get frenetically convoluted very quickly. There are so many cross-elasticities, and purportedly only a couple distinguishing characteristics.

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poppy
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An interesting way to look at these two illnesses.
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Keebler
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Duncan makes excellent points. "cross-elasticities" is a good way to explain some of this. Of course, many with CFS / ME do have lyme as the cause - or other TBD or other chronic stealth infection -- but the tests are just too limited and most doctors' mindset too narrow.

Aside from the wide range of stealth infections in that statement, though, do we actually think that we know all about every stealth infection that exists? What guts it takes to think that if tests come back "just fine" there is no infection to consider. But that is modern medicine's approach. Much to miss there.

Adding to that that the term "fatigue" is a huge failure at communication the bone deep sheer exhaustion that is very painful.

Fatigue / exhaustion like this carries a ton of pain and, at times, a near paralysis & inability of the limbs to follow one's "orders" to move - even if for minutes or hours at a time and then, with some rest, it may lift - that kind of "fatigue" just is not even in the mindset of those who decide on the definition.

There is no word for that.
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duncan
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Thanks, poppy. Keebler, the problems with the word fatigue are myriad. You are spot on.

There are so many similarities between the way both communities have been orphaned and betrayed.

But there are interesting differences that each can learn from the other.

Too tired to write now, but, for example, we might be smart to review the deficiencies in CFSAC (CFS Advisory Committee to Congress) considering we are working to get our own federal Lyme advisory committee up and runnng sometime in the not so distant future.

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