Jen Brea no longer "has" ME CFS

"Unrest" documentary filmmaker and activist, Jen Brea writes, "By any definition, I no longer meet the criteria for myalgic encephalomyelitis. My physical and cognitive post-exertional malaise (PEM) are both gone. I have not crashed since I left the hospital. My POTS is gone. My peripheral neurological symptoms, sound sensitivity, sensory processing challenges, difficulty regulating my body temperature, intracranial pressure, brain inflammation and muscle fatigability are all gone. I am off Valcyte, Famvir, Mestinon, and all other ME or POTS drugs...

I was an acute, post-viral onset patient. I have never had any symptoms that I would have interpreted as structural, rather than systemic. I never had any discernible problems with my neck. As it turned out, the mechanism was structural. Its impacts were systemic...

And now, Jeff Wood and I are the first two patients (as far as we know) to meet the International Consensus Criteria for ME and to have our ME resolve due to this fusion surgery...

I found improvement of essentially all symptoms with rest/pacing (not included in the table). Specific symptoms further improved with mold avoidance, Valcyte, Mestinon and Fludrocortisone. Even with these treatments, I still met the criteria for ME but shifted from the “severe” end of the spectrum to “moderate.” I found resolution of essentially all of these symptoms after my craniocervical fusion and tethered cord release surgeries, and no longer meet any criteria for ME or CFS...

Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it..."

Read her incredible story here: https://medium.com/@jenbrea/health-...0OX7PuPEPqGNeawRmDQy0xGfSfmGCcIrUWlBuRiadxwUk

UPDATE
I immediately reached out to Jen's surgeon, Dr. Bolognese in NY. Irene from his office replied via email. She had me fill out a bunch of forms and told me to get PT with traction ordered and to keep a log before and after of how I responded. I replied with all of the forms and said that I had already done NRCT, a form of traction on the neck, and described my response. Irene also said to get an MRI of the lumbar and cervical spine. So then I got my neurologist to order the MRIs and I sent the disc to Irene for evaluation. She emailed me and asked for the forms that I'd already sent. So I re-sent those. Then Irene emailed me and asked for the reports for the MRIs. Then Vanesa emailed and said I needed an Xray of the lumbar spine and that the doctor wanted me to do home traction for a month, as follows:

Here is the protocol for Traction
Trial of Cervical Traction with PT (manual or with devices, for a total of 5-6 times) – the patient will keep a journal recording how the chief complaints are before the traction, during the traction, and in the 2-3 hours following the traction, keeping in mind that in some cases a transient rebound effect can occur after the removal of the traction – the trial should be aborted if severe pain occurs (mandible, occiput, neck)
1.-How long should the PT hold the traction?
5-15 MIN

2.- How much pressure should the PT apply?
TRACTION WEIGHT BETWEEN 10 AND 20 LBS

3.- How many times should traction be performed?
4-5 TIMES

Make a JOURNAL of how your top three MAIN symptoms are:

* Immediately before cervical traction with PT
* During cervical traction with PT
* In first few hours after cervical traction with PT
Save the JOURNAL in a WORD file.
Keep it short and to the point.

EXCUSE ME BUT DOES ANYONE UNDERSTAND THESE DIRECTIONS? I surely did not.

And shortly after this I received an email that I did not meet their criteria and would not be granted an appointment. The practice seems very impersonal and disorganized to me. I've also read some reviews of the doctor that raise a red flag. I truly don't know where to go from here.

Comments

I am glad that Jen was able to make a full recovery from this awful disease, be it ME or CCI. Her condition might lead to other cures for ME/CFS, hopefully.
 
Reading your update, @I AM ...were there any reasons given for saying you "didn't meet the criteria"? Was the refusal based on your MRI reports or some other issue?
 
@Wolfcub nope! They just sent a letter in the mail with my CD and what I wrote in my update was all that the letter stated.
 

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