No one's denying that some really stupid doctors (and we do know that a fair few exist) might miss EDS. What's been debunked is that suggestion EDS is the same of ME/CFS, or that EDS can be entirely responsible for causing ME/CFS. The major symptoms, the onset, and the biomarkers are completely different.
I completely agree. No one is denying that EDS exists. No one is denying that EDS may be an alternative diagnosis in some cases (ME diagnosis was a mistake). No one is denying that EDS may be an additional diagnosis in some cases (ME patients can have more than one diagnosis).
The main point that is being disputed is the statement that EDS causes all cases of ME (or ME/CFS, or CFS). That statement seems to be overly simplistic.
I don't know any research studies that support a causal link between EDS and ME. I've read a few of the lists of diagnostic criteria for different types of EDS and none of them match up with the diagnostic criteria for ME (see
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/ -or-
http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf )
Who knows, maybe future scientific studies will go in that direction, but the evidence that we have now does not point to the fact that EDS is the primary cause for most cases of ME.
TheSpitfire said:
I think that's why so many on here don't really like new diagnoses coming into the forum sometimes. It's something else to think about, travel to and possibly not have it.
I can't speak for others but I am not trying to reject a new diagnosis. Far from it! I am happy to learn about EDS. I'm reading about it so that I can figure out whether it applies to me. Sure, no one
wants yet another diagnosis. But ignorance of the diagnosis is not going to keep it from being true.
(By the way, TheSpitfire, I'm another patient with an endometriosis diagnosis so I already have multiple diagnoses.
It would be pretty silly to ignore more diagnoses when I already have a bunch. And yes, endometriosis pain is horrible. I was in agony and can relate to wanting to end it all. Surgical excision of the endometriosis tissue by an endo expert,
not a hysterectomy, is what finally helped relieve my endo pain. That said, this surgery does not work for everyone, but it's too bad that some doctors tell patients that full hysterectomy is the only answer when there are other surgical options.)
In fact, I'm fascinated by the overlap between different types of Orthostatic Intolerance and EDS, for example. I've had a diagnosis of NMH (Neurally Mediated Hypotension, aka, NCS and other names) since 1995. I'm interested in all the different types of OI or autonomic dysfunction and what causes them. I would definitely like to learn more about EDS so that I can figure out whether it is part of my problem. I hope to go to a specialist to figure that out one day. (but I have to pace myself as far as money and energy so it might be a while before that happens.)
So, I don't think the problem on this thread is resistance to or denial of an EDS diagnosis. I think the problem on this thread is trying oversimplify things and give simple answers to complex problems. Remember that old saying,
For every complex problem there is an answer that is clear, simple, and wrong.
- H. L. Mencken
I do agree with the idea that what is useful for most patients is not the name of the diagnosis but whether there are any treatment options or a cure. For example, a diagnosis of either ME or CFS has given me zero helpful treatments over the years. But my 1995 diagnosis of Neurally Mediated Hypotension (a type of OI) has provided quite a few treatments (midodrine, florinef, extra salt/potassium, increased water intake, etc.) as well as the understanding of what types of things are likely to trigger my symptoms (e.g., heat, standing, sitting upright, etc.).
So I understand that most patients want a treatment or cure, not a name.