Jennifer Brea, patient, one of the world’s biggest ME/CFS advocates and creator of award winning “Unrest” documentary about the disease, is in complete remission. After eight years of absolute hell, at her worst unable to tolerate even the rustle of bed sheets, has no more symptoms. How? About a year ago she found another to to add to her long list of comorbidities: craniocervical instability and tethered spinal cord. She had surgery to fix those. Several months since surgery, all her ME/CFS symptoms are completely gone. She’s off all medication. This is nothing short of miraculous. But it’s not uncommon. Another guy shared his story. For years, with really severe CFS, he was ridiculed by every doctor and neurologist. He was almost paralysed, unable to breathe, HR of 30 doctors told him it’s anxiety!!! When he eventually had surgery, he also experienced complete remission.
Any problems with the spinal cord and hence the autonomic nervous system, have the power to ruin just about every system in your body hence the list of symptoms as long as the Eiffel Tower.
This is what happens when you finally find a doctor that listens and takes you seriously. You must also have the means, which are far beyond most patients. There are four specialists in CCI in the world: three in the US and one in Spain. It costs £100k I’ve been told. Everyone else, unless you have an accident, will laugh you out of the room. Doctors don’t believe this can occur randomly. Thing is, Jen and this guy both had viral onset CFS. No idea what caused their CCI and thethered cord.
This shows, you must never stop fighting to be heard. 99 doctors may kick you out of the door and tell you it’s in your head. One doctor might have answers needed to get your life back.... still, you need to have the means.... But it gives great hope that when you finally stumble upon the cause of your CFS, a solution may already exist. That’s what I’m praying for.... - 2 hours ago