M.E. or CFS?

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I'm brand new to the group. I haven't technically been diagnosed with M.E. yet. I've been treated by the VA in Nashville for the last 3 1/2 years and had been diagnosed with cortical myoclonus, yet after three clean MRI's they have recently decided that I probably don't have myoclonus.

Since I have been left to further investigate my illness, I have stumbled across a letter from a patient whose symptoms were so identical to mine, that I could have written the article. After all his testing he was diagnosed with M.E., not CFS. I have neevr joined a support group like this, so I am trying to get a better perspective from others who may have M.E. as well. My trouble is I am not seeing a distinction between ME sufferers and CFS sufferers.

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  • Posted

    Hi Dono,

    Basically there Isn't much difference a symptoms are similar/the same so, alot of the time it's called cfs/me.

    Hope that helps

    Beverley

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    • Posted

      Thanks for your response Beverly, but actually, I don't think it helps much. My due diligence has led me to understand, unequivocally, that Myalgic Encephalomyelitis is NOT the same thing as 'CFS.'

      The terminology is often used interchangeably, incorrectly and confusingly. However, the definitions of M.E. and 'CFS' are very different and distinct, and it is the definitions of each of these terms which is of primary importance to me. M.E. is also not at all the same thing as ‘ME/CFS,’ ‘CFS/ME, ’ 'ME-CFS,’ ‘CFIDS,’ or ‘Myalgic Encephalopathy.'

      And since I have an appt on Aug. 15 with a second Neurologist, I'm trying to make sure they are of the same mind set, so, as you can imagine, I am trying to gather as much info as I can.

      Thanks again.

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    • Posted

      There is so much uncertainty around these issues that not much can be said for sure. It does seem that people can get a diagnosis of CFS or ME or some combination, depending on the doctor they happen to be diagnosed by. This can have important implications, depending upon how those classifications are used, or it can not. Are you involved in any legal proceedings where classification is likely to be important?
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    • Posted

      Hi again,

      Yep, there's great disagreement about the whole name thing,there's an old post on here relating to just that! You could possibly check that out? Also, my last neurologist didn't even know what cfs/me meant and discharged me even though he'd ordered mri scan. I really believe that there are differences in who knows what depending on which country you live in.

      Best wishes

      Beverley

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    • Posted

      I get that, and you are absolutely correct. You may find this article interesting as to the politics and fiscal corruption of it all at the CDC ...

      http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

      I'm in San Diego, CA visiting my dad's neurologist, but I actually live in Nashville, TN now. My neurologist in Nahsville doesn't know, but jokingly said they could find out with an autopsy. My wife, who was with me, didn't find that amussing at all!

      From what I have been able to understand/learn, people with chronic fatigue may be tired because of cancer, MS, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.

      Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting six months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis.  Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.

      Alternatively, ME is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the WHO since 1969 as a distinct organic neurological disease with the code G93.3.

      I did look up that code this morning and it is associated with what they call benign ME. However, just to add more confusion it costantly makes reference to CFS!

       

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    • Posted

      Perhaps ... I've been unemplyed for 3 1/2 years due to this illness and I have a hearing with the disability judge on Sept 16. Although my neurologist filed paperwork that I am 100 percent disabled, the fact that they can't find the source of the myoclonus has given me cause for concern.

      I've had three MRI's two EEG's and they have all come back clean for Myoclonus, yet I still have all the distinguishable characteristics and symptoms.

      All that tells me is thay are either looking in the wrong place, or they are looking for the wrong thing. Those are the only two possibilities. Myoclonus emanates — as far as I know — from the center to the top portion of the brain. However, ME emanates from the brain stem and frankly, I don't know if my MRI's included the brain stem. And even if they did, they probably wouldn't have known what to look for.

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    • Posted

      Thankyou Dono,

      I will check this link out when my brain will give me the extra energy to do it !!

      I find reading things of any length really taxing myself. Books for pleasure? an ancient myth for me : )

      I'm a member of the ME association and they don't really refer to CFS in their literiture at all. 

      Beverley

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    • Posted

      I know what you mean. It took me a couple of days to read it, as it's quite lengthy and informative. In fact, My day job used to be photography and I recently contributed — for a nominal fee, of course ;-) — 35 photos to a book my buddy wrote on the history of the Nashville Predators (NHL) hockey team. I still haven't read beyond Chapter 3 yet. But the pics look great!

      My wife and I won't call it CFS either, it's a politically and financially motivated term!

      On an unrelated note, since I'm a newbie here, what's with all the buttons and points here? Are they like frequent flyer miles? Do we collect points to buy a new flat screen tv, a car, or trips. LOL, like any of us can drive or take trips.

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    • Posted

      Hi dono,

      Been a tough few days so apologies for late reply. I wish the points made prizes! That would be great! : ) I'd trade mine in for a foot massage : D you get badges-which are a novel idea. ... what would you trade your points in for if you could have anything?

      Sounds good re the photos in your friend's book, I find looking at photos ok but reading-like I've a marathon ahead of me.

      I've been or have felt quite ill for over a week now and couldn't even speak this morning. I know coughs and colds are going around so, I may actually be ill! It's hard o know with this condition.

      How's things going with you? Did you see seethe neurologist?

      Beverley

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    • Posted

      Hey Beverley,

      Sorry to hear you've been feeling poorly lately. I think I'd trade my badges for an even bigger and more powerful Apple iMac - 27" LED! I can still spend time in front of my computer for all my digital painting work, without too much trouble.

      I haven't had a cold or the flu in years, in fact, I can't remember the last time I had either. Although, when I'm on my feet too long, I get really dizzy and nauseated — kinda feels like the flu without the fever. I actually equate it more to sea sickness.

      I don't see the neurologist until Aug. 15

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    • Posted

      Yeah, this is why I never know If I'm ill or not! Symptoms that seem like something else that don't seem to materialize into full blown illness. I''ve spent alot of time resting today. It's the lack of fever that I've only just realized doesn't materialize, mmm.....

      Anyway, If you're trading your points in for an Apple iMac, then massages should be only 1pt each ; )

      B

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    • Posted

      Wouldn't you know it, that last post to you gave me another badge ... the the prestigious and much sought after "5 day streak badge!"  Who knew there was such a badge?! I feel like a Boy Scout collecting his Merit Badges.

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