It's been awhile since I've posted here.

In the intervening time I have been fast coming to the conclusion that my diagnosis is what I feared most; not because it is a death sentence but because of medical scepticism about it's very existance. Of course the condition is ME/CFIDS/CFS/FM (which basically is an umbrella term for a cluster of documented specific symptoms with a possible number of causes, for which at this stage, there is still no laboratory proof).

One very interesting thing (among many) about ME/CFIDS is that in the supporting literature it is often called among other things, a neurological condition, ....yet...

......not once in my search of algorithms and medical papers outlining various neurological disorders and causes of peripheral neuropathy did I find any whiff of a reference to ME/CFIDS. Yet burning, tingling and abnormal peripheral sensation can be a symptom, as can fasciculations (muscle twitches). Nor too did either of the neurologists I had consultations with, after hearing my long list of symptoms, ever allude to the fact or suggest that what I may have could be ME/CFIDS as the cause.

It's quite unbelievable to me that these supposedly learned people do not even consider or have the intellectual integrity to look at the whole picture and include this scenario as a possibility. They must see numbers of people who fit this profile and are sent away empty.

I have recently sought out a doctor who has some experience with ME/CFIDS and he believes that the 23 symptoms that I have been experiencing for the past 10-12 months do fit within the documented guidelines of this elusive condition. He is now eliminating (among other things) possible causative agent antibodies which may have stimulated a heightened/lowered immune response - like Ross River Fever, Q Fever, Murray Valley Fever, mycoplasma, psitticosis, legionella etc etc.

Regardless of testing outcomes it is heartening to know that my symptoms are being validated by someone who is listening and seems to understand - at last!

ME/CFIDS (?)
First time I've ever run across it.
Never heard of it, before.

Hugs to you. Hope you can find solutions now.

I just googled and spent the last 90 minutes or so reading about this disease/disorder . . . and all I can say is I want to give you a huge cyber-hug and hope that amidst this personal hell-type of waxing and waning existence, I hope that you are allowed some real, sparkling gems of experiences to make up for the struggle each day must bring. I hope you are able to find and maintain the most effective equilibrium for your particular experience with this disabling disease, and that the stream of humanity that flows by your life includes some incredibly wonderful and sensitive people along the way.

And having just learned about this, I hope I become even more sensitive and able to interact with those who function at levels and in ways I have never imagined.

being facetious? (that kind of means - just kidding)!!!! You have to be kidding me!

....or have you really never ever heard of ME/CFIDS before?

I just googled it.

Here you go. They have a whole website on it.

http://wwcoco.com/cfids/what.html

Megan,
This disease was the first thing I was diagnosed with about 20 years ago. I struggled for almost 15 years before being diagnosed with seronegative Sjogren's Syndrome ( with neurological complications) and seronegative Rheumatoid Arthritis. I was very lucky to find a doctor who believed in my symptoms and treated me in various ways for years before finally diagnosing the Sjogren's Syndrome.

It took me another couple of years to get proof and the diagnosis that Sjogren's Syndrome was causing the neurological symptoms I have.

I hope your doctor will also consider these two diseases also with his testing. They can both lie dormant in your system, coming and going with remissions. Mine did. I tested positive for Chronic Epstein-Barr also.

Good luck to you,
Billye

--especially from the historical perspective--is that people with many, many different kinds of symptoms were being lumped together under that diagnosis without them showing much commonlity at all on laboratory or other testing, so that the diagnostic category began to be looked at askance in medical circles, in much the same way "fibromyalgia" currently is.

For instance, for a long time, many people thought that one of the hallmarks of the chronic fatigue constellation was a re-activation of Epstein-Barr virus, as evidenced by various antibody titres. But some well-designed research showed that a large number of people who showed such "EBV re-activation" were not experiencing the symptomology of chronic fatigue, while many people WITHOUT such titre evidence were experiencing it. This certainly muddied the waters.

Recent thinking in this realm, by the way, involves a closer look at human herpes viruses 6 and 8 as underlying factors (Epstein Barr is human herpes virus 4--and all human herpes viruses are "immortalized" in the body after initial infection, waiting for an opportunity to reassert).

There is, evidently, SOMETHING going on with peiople who have symptoms of crushing fatigue, muscle and nerve pain, and the like. But there's yet to be a real "smoking gun" type of clinical/laboratory correlation that doctors can point to, and that has kept many from thinking it's a "real" condition. (My suspicion is that we're going to find that environmental toxicity/mitochondrial effects are a big factor here, as we unravel the human genome.)

Nope!
Never did. Sorry.

your feelings and concerns, Megan.

I was diagnosed with CFS/ME by researchers here in the U.S over 20 years ago. I have also participated in the research over the years.

Even within research, there have been subcategories of groups. I've had researchers explain to me that there have been at least 5 subgroups. While one group might have an abundance of severe neurological symptoms, another group may be experiencing only overwhelming fatigue (which is more than enough, in and of itself). The groups in between are variations of a mix of symptomatologies between these two groups (at opposite ends of the CFS/ME spectrum).

I have been in the "group" with the "severe" neurological symptoms.

However, the researcher has been very clear in his opinion that he has felt I have had a neurological disease all along, we just have not been able to fully identify all of what has been going on.

Over time, we have identified an increasing number of autoimmune conditions. These have never explained all of the neurological problems over the years.

More recently (over the past 8 years or so), I have had increasing neurological issues, with abnormal biopsies, etc. I had been told then that I have an immune-mediated process of the CNS and the PNS. It was then we were also sure I'd had small fiber neuropathy, as well.

This year has been very tough "neurologically" and I am in the midst of having many different tests of both the peripheral and the central nervous system.
We are finding more nerve damage, with blatant EMG abnormalities, etc.
Since we are currently in the midst of testing, I cannot disclose the current full picture, as I do not yet know it. (I have had many tests for which I do not yet know the results of and have others scheduled for next week, as well.)

Right now...we are left guessing between an autoimmune process, a CIDP or a hereditary neurological illness. The EMG pattern of nerve problems looks very similar to CMT. (Ulnar nerves, peroneal nerves are currently problematic, with moderate atrophy in one hand... which will have a surgical intervention of some form as soon as possible.) I will also be having brain and spinal cord MRIs, etc., as a CNS process is also suspected at this time.

If you look as far back in CFS research as the 1980's, you will see mention of research subjects with abnormal brain SPECT exams and you will also read of many parathesias, nerve pain, etc. (Some cases were incredibly severe and blatantly "neurological" within the accounts of even the research papers and/or the various interviews with researchers throughout the history of all of CEBV/CFS/CFIDS/ME research.)

Interestingly enough, I had read a headline over the past two weeks, of a medical source, which was announcing that CIDP had been found in some patients previously diagnosed with fibromyalgia (only). I will have to search for that information again in order to give you a correct source on that. (Yet, that may have been a simple cases of misdiagnosis.)

I would encourage you to continue, as you are able to both finanacially and emotionally, and if you feel led to do so... to always try to gain more clarification than a CFS/ME diagnosis...if such is at all possible. I encourage this because a diagnosis of CFS/ME is not very helpful and if you can find out more...there may be a chance you can be helped more than if you settle on a CFS/ME diagnosis.

That being said, I hope everyone reading will understand that I mean this in an understanding and in a helpful way. I am not criticizing CFS/ME. I have seen too many people obtain this diagnosis and then... critical time passes when they actually had an underlying condition that could have been helped/intervened with much more successfully if they their doctors had not settled with the CFS/ME diagnosis.

I know it is not easy to continue the "chase" for the underlying cause(es). Sometimes, lives do depend upon this, however. For instance, I have known of a few women receiving a CFS/ME diagnosis for which they had explained all of their severe fatigue, while, in the meantime, they'd (maybe also or instead) had ovarian cancer and never realized this until it was too advanced to do anything to intervene.

Oh yes, I , too, am very surprised when someone has not heard of CFS/CFIDS/ME in 2008. However, there are so many people never having had a reason to know about this problem and there has always been a tremendous amount of resistance to public service ads, etc. (I have been involved in many of the "campaigns" to get some recognition for CFS/ME and also to have research monies "tagged" for CFS/ME and/or to "recover" CFS-designated research monies actually taken out of the research coffers and used by the CDC for other uses. The GAO had investigated this and has documented this "misallocation of research monies." This has been an uphill battle for a very long time now.) Thinking it all through, as I write, I guess I should not be so surprised afterall.

I wish you the very best and hope you can continue to get more clarity on answers/information for yourself. I'd like to see you have a really great shot at actually getting some really good help... the sooner, the better!