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Rosebud77
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07-06-2015, 05:49 AM

Anyone out there with M. E?

I hear there is a new blood test that proves it is real. Not bothering with it here as I am in control of it and the hassle with drs takes too much energy! When I was in hospital with " the wrist" one supercilious dr asked if I knew what M.E stands for so I reeled it off easily. The only meds I use are painkillers at night and anti nausea when I need them. Mine is worse as I was misdiagnosed in the UK for over thirty years and the wrong "treatment" did a lot of damage. But hey! I have learned to live with it and get deep pleasure from what I CAN do.....
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Apache
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13-07-2015, 09:32 AM
Apparently the blood tests seem to rule out other conditions rather than to confirm ME (or CFS)?

"You may have blood tests, urine tests and scans to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems."
http://www.nhs.uk/Conditions/Chronic...Diagnosis.aspx
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Rosebud77
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13-07-2015, 11:30 AM
Originally Posted by Apache View Post
Apparently the blood tests seem to rule out other conditions rather than to confirm ME (or CFS)?

"You may have blood tests, urine tests and scans to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems."
http://www.nhs.uk/Conditions/Chronic...Diagnosis.aspx
No there is actually a new test that shows a clear M.E marker. In the mitochondria. So it is in effect no longer the old " diagnosis of exclusion" that you are referring to. So that NHS site is out of date which does not surprise me!
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mjfromga
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13-07-2015, 12:10 PM
M.E. is CFS? I'm confused as all get-out...
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Trouble
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13-07-2015, 12:23 PM
No but I have antiphospholipid syndrome which encompasses cfs as one of the many symptoms. It is diagnosed via blood tests and once diagnosed you have it for life, it's treatable but incurable. Just as well I was diagnosed when I was as every blood test since has been negative. So no blood test is ever definitive.
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Rosebud77
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13-07-2015, 02:55 PM
Originally Posted by mjfromga View Post
M.E. is CFS? I'm confused as all get-out...
Simple.. a rose by any other name. here it is called Myalgic Encephalomyelitis, in the uS and sometimes here CFS or CFIDS ie Chronic fatigue with Immuno Deficiency.
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Rosebud77
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13-07-2015, 02:59 PM
Originally Posted by Trouble View Post
No but I have antiphospholipid syndrome which encompasses cfs as one of the many symptoms. It is diagnosed via blood tests and once diagnosed you have it for life, it's treatable but incurable. Just as well I was diagnosed when I was as every blood test since has been negative. So no blood test is ever definitive.
Same happens with thryoid testing but in this case the mitochondria test is permanent and always there. And there are many forms of CF which is why most of us prefer the M.E terminology. Far more than simply fatigue. Yuppie flu it got called, post viral fatigue etc etc etc. M.E is a separate illness not part of another one.
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mjfromga
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13-07-2015, 04:11 PM
Originally Posted by Rosebud77 View Post
Simple.. a rose by any other name. here it is called Myalgic Encephalomyelitis, in the uS and sometimes here CFS or CFIDS ie Chronic fatigue with Immuno Deficiency.
Chronic Fatigue

Myalgic Encephalomyelitis

I think I prefer our version. You don't need a PhD to pronounce it!

In other news, I am a severe insomniac and have been for over ten years, but I don't think I have any extreme levels of fatigue despite that. It's all very interesting.
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Rosebud77
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13-07-2015, 05:08 PM
Originally Posted by mjfromga View Post
Chronic Fatigue

Myalgic Encephalomyelitis

I think I prefer our version. You don't need a PhD to pronounce it!

In other news, I am a severe insomniac and have been for over ten years, but I don't think I have any extreme levels of fatigue despite that. It's all very interesting.
But you see so many have been diagnosed wrongly both ways. Many who do not have M.E , as with M.E and vice versa and thus people get obsessed with the name. I am with the M.E ones as the illness is far more than fatigue, so don;t omit the immuno deficiency aspect! When I was in hospital in the Uk for tests, you see, each consultant kind of claimed my illness....the gynae said it was hormonal and prescribed accordingly, the psych said depression and prescribed accordingly.. the rheum man that it was fibromylagia and yes prescribed accordingly ( none of them checked what anyone else was prescribing) and the consultant physician, seeing the overall picture got it right. The mitochondria test is so important as it show clearly the marker for M.E so clearing all other illnesses from the picture. I heard about it some years ago. If you are scientifically minded google it, So simple and so clear. It isnt primarily about fatigue which is why I avoid the CFS label. Irish drs have chosen the CFS verion but they are not good here. One thing I was fascinated by re the test was that caffeine helps and we have erratic blood sugar levels and need to top up frequently. This is something I have found without knowing why and my blood sugar levels are measurably erratic and i crave strong coffee. Anyways sleep time here and my last word here also. Enjoy the reading re mitochondria; fascinating stuff.. but I avoid drs like the plague now. Over abd out from me,
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