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I just spoke with scheduling department at Stanfords CFS Clinic. I was told Dr Montoya is on sabbatical, there is no acting director for the clinic, and they don’t know who will take over his patients. There is another doctor at the clinic, Dr Bonilla, who they said will continue seeing patients...

I am very surprised and disappointed to read of these allegations. I don’t think Montoya’s research will continue and question whether the ME clinic will either.

@Jonathan Edwards Thank you for taking the time to respond. I have a couple other questions I was hoping you could answer. Would you agree/disagree that when CCI occurs without blunt force trauma most neurosurgeons will not test for it or treat it? Is a connection between EDS and CCI an...

What do you mean there’s “no virus”? Is that known? How? 23&me does not test for EDS. Also, the genes for hyper-mobility EDS (hEDS) have not been identified. I’d like to know what exactly the 50% figure refers to—ie Ron Davis’ estimate or the percentage of Dr. Kaufman’s patients or...

Thank you @JenB for taking the time to respond. @Jeff_w would you be able answer my questions about why there would be only 4 doctors who can correctly interpret CCI imaging if this is a condition long established and treated? @JenB I can not seem to locate where I thought I read who your...

@Jonathan Edwards could you answer the questions from the first paragraph? If I understood your posts correctly, you are saying that CCI is a condition that all doctors are taught about (unlike ME, and actually from my experience in the US EDS either, though it may be different in the UK). So...

This is true. However, people should know what they are signing up for. My experience, which includes being a patient of Dr. Kaufman previously, as well as Dr. Kogelnik, includes times that I have been prescribed treatments without adequate warning/information/disclosure of risk/benefit. My...

So I appreciate the likes but really am honestly asking these questions, not being rhetorical. I am severely ill. I was able to read posts on this thread from bed for several days but was too sick to sit up or formulate my questions. Took great effort yesterday to sit up, join this group, and...

I have been following this thread with interest. What I don’t understand and hope someone here might be able to provide information about is whether it is accurate that CCI can only be accurately diagnosed by a handful of doctors worldwide? And, if that is accurate, why that is the case if...