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!