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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 ME/CFS symptoms. I hope what I’ve been trying to say is at least clear now...

All of these people diagnosed with ME/CFS who have subsequently been diagnosed with Chiari, CCI/AAI, stenosis, IIH, Eagle’s, tethered cord, etc. do have PEM. (By definition and by self-reported fact.) What I am saying is that there is a tendency for physicians (including ME/CFS specialists) to...

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 is a rare neurological condition. The severity of the condition and the associated signs and symptoms vary from person to person. In some cases...

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 mast cell degranulation and/or are associated with MMPs. For people with hEDS, they observe an association between MCAS onset or flares and worsening...

It’s also important to note that in hEDS there ARE families with clear inheritance patterns and multiple people affected across generations with no clear shared environmental explanation. As with so many of these conditions, absent objective markers, definitions are going to be very difficult...

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 with ME/CFS by ME/CFS clinicians if they also have PEM. There is enough overlap in symptoms for ME/CFS clinicians (who are generally not...

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 several of them described something that I think can rightly be called PEM. See the symptoms here...

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 set symptoms). @Hip is in a better position to answer this question because he has actual data. Hip, are there people in your survey who tested...

There are plenty of hEDS patients who developed symptoms after something sudden, whether an infection, accident, environmental exposure, or drug (i.e., fluroquinolone antibiotic). There are also patients who have been sick and gradually worsening since they were 8. In the US, whether you get...

Many descriptions of POTS sound exactly like ME. It’s incredibly frustrating. I couldn’t agree more that our clinicians and researchers should be talking to each other. We’d get a lot done much faster.

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 but still some predictable ways, namely ME, MCAS, POTS, dysautonomia, fibromyalgia, etc.) You start to describe this and eventually say, “Ah, you are...

This study compares complex/severe and simple/mild cases of people with hypermobile EDS and hypermobility spectrum disorder and finds no association between disease severity and either (Beighton) hypermobility or hEDS criteria. https://www.ncbi.nlm.nih.gov/pubmed/30783660/ I thought you would...

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 Diagram does not use the the CMS symptom list. It uses the symptoms on this page, which draw on a variety of sources...

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 was not something they ever assessed their patients for in the past, so I don't know how they could possibly know.

The point of the diagram is to illustrate why a patient with craniocervical instability and tethered cord syndrome might be diagnosed with ME/CFS on the basis of the symptoms they describe to their doctors, especially if those symptoms began after a viral infection. These are our definitions...

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 example, stiffness of the neck and spine is mentioned in: Sigurdsson, B(May 1956). "The Lancet". Clinical findings six years after outbreak of Akureyri...

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 symptoms. I think this is exactly right. The challenge for my case is that many of the symptoms that were “classic” CCI or tethered cord syndrome...

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 ME/CFS criteria was recently diagnosed with bilateral internal jugular vein stenosis (IJVS). This is considered a congenital condition, however she never...

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 dysmotility) are in the ICC. There are also several additional CCI symptoms mentioned in case reports. Some are symptoms I associate more with intracranial...

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 observing many different structural/mechanical neurological problems in patients, not just CCI/AAI. I have been arguing that what connects these...