Right, as I said. However, there’s a lot more that went undiagnosed because the symptoms of these conditions were interpreted by their doctors as...
All of these people diagnosed with ME/CFS who have subsequently been diagnosed with Chiari, CCI/AAI, stenosis, IIH, Eagle’s, tethered cord, etc....
I mean, I think this is basic info on many websites. I can dig into the literature but this is from the NIH for starters: Tethered cord syndrome...
I think people wonder this because so many of the onset triggers and/or factors that cause a worsening of symptoms in people with ME also cause...
It’s also important to note that in hEDS there ARE families with clear inheritance patterns and multiple people affected across generations with...
Of course. Especially not a diagnosis like CCI. The point of the exercise is to show why patients with tethered cord and/or CCI could be diagnosed...
Ramsay doesn’t which is why it isn’t in his part of the Venn. However, many different clinicians wrote about the outbreaks they observed and...
I just want to reframe slightly so we’re not confusing ME clinical diagnostic criteria based on symptoms with a CCI diagnosis (where CCI has no...
There are plenty of hEDS patients who developed symptoms after something sudden, whether an infection, accident, environmental exposure, or drug...
Many descriptions of POTS sound exactly like ME. It’s incredibly frustrating. I couldn’t agree more that our clinicians and researchers should be...
What I wonder is if it’s a problem of “selecting on the dependent variable.” You see people who are hypermobile and sick. (Sick in many different...
This study compares complex/severe and simple/mild cases of people with hypermobile EDS and hypermobility spectrum disorder and finds no...
Sorry, which definitions are fringe? I’m not sure if you are talking about certain ME definitions or descriptions of CCI? Re: CCI, my Venn...
It is definitely a fraction but at this stage, I don't think anyone knows how large or small a fraction it is, including ME/CFS clinicians. This...
The point of the diagram is to illustrate why a patient with craniocervical instability and tethered cord syndrome might be diagnosed with ME/CFS...
It is also worth mentioning that some symptoms not captured above by the ICC or Ramsay are mentioned in other case reports of ME outbreaks. For...
I believe this is part of why the ICC is actually thought to be more likely to pick up a wider range of diagnoses than the CCC: it has many more...
I just wanted to share an article that was recently posted to our Facebook group on ME/CFS and structural diagnoses. A woman in it who meets...
There are a few additional symptoms @Hip that are considered to be a part of the ICC. I believe dizziness and gastroparesis (described as GI...
I’ve been trying to say this but it’s often I think lost in all the discussion around my case, Jeff’s, Julie’s, etc. And that is that we are...
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