ME and cfs to be classified as seperate illnesses

WillowJ

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Dolphin, Willow, tania and oceanblue...

If I ask Mark to copy our latest posts to a brand new thread, to encourage more discussion on this specific subject, would you all be happy for your recent posts to be copied to the new thread, under a new title?
yes, that sounds like a great idea to me. :thumbsup:
 

Bob

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Something that I think is relevent for this discussion is something Dr Deckoff-Jones said in Cort's interview...

It is often said that ME/CFS is a heterogeneous disease, but it isn’t. There is a menu of signs, symptoms and laboratory abnormalities. Nobody has all of them and it is possible for there to be little symptom overlap between two particular patients. We each have a laundry list of symptoms that may make us appear different, but seemingly diverse symptoms often fall into broad categories by mechanism. For example, diffuse inflammation may cause a gut problem in one individual, but a bladder problem in another. One person may have migraines and another Raynaud’s as a manifestation of vascular spasm.

The underlying homogeneity by mechanism should lend itself to the creation of a decision tree that can be modified as we analyze our findings and outcomes statistically.

http://forums.aboutmecfs.org/conten...s-Talks-on-the-WPI-clinic-treatment-CFS-cfids
I think this is interesting, but it is a bit confusing, as the current diagnostic criteria does allow for other unknown fatiguing illnesses (i.e. not ME, as defined by WHO) to be included in the diagnosis...
But maybe most of the patients who the well known specialist ME clinicians see, all have the same disease (but with some "seemingly diverse symptoms").

The interview is worth reading if anyone hasn't read it yet.
 

Mij

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Let me try to explain better... my concern is about the subgoup that starts with fewer signs and symptoms and gets more later. I would not have quite met CCC during the first year or so of my disease. I remember no sleep disturbance at first. Don't remember for sure, but I may also have been missing another category or two. What could they have diagnosed me with under the "evaluate the entire course of my (so far relatively short) disease" guideline when I didn't yet meet CCC?

Then again, perhaps I had a different postviral disease first, and got ME later? But that doesn't meet Occam's Razor (it makes the explanation more complicated). However, it might mean that at that early point, maybe I would not have been a good pick for a research study, so using CCC for research might be best. I'm just not sure CCC for clinical diagnosis picks up everyone who will eventually meet CCC. Again, though, they have this same problem with Lupus, MS... diseases like this develop over time and it might take 2 years to get diagnosed properly.
This was my case too. I did not have sleep disturbances until the 9th year into this illness, no cognitive problems for at least 10yrs etc. My case was a sudden viral onset so I was initially diagnosed with PVFS. I went to see an ME specialist who helped put together the Canadian Criteria for ME and at first he didn't think I met the ME criteria but perhaps I had MS because of the relapsing nature. When MS was ruled out I was diagnosed with ME. So really it is a progression because the symptoms that are debilitating for me today are not the same as 20yrs ago.


Mij