I have ME. What symptoms should I be aware of that would suggest CCI, tethered cord, or other mechanical conditions?

Consider the possibility that, for some, every symptom of ME can be caused by an underlying mechanical condition. This has become apparent as multiple people have substantially improved, or gone into remission, after addressing these conditions.

Some have reported improvement or resolution of POTS, PEM, brain fog, sensory sensitivity, muscle fatigability, and other symptoms.

More research is needed to determine exactly how many people with ME have underlying mechanical conditions.

How do I get evaluated for CCI, tethered cord syndrome, intracranial hypertension, and other mechanical conditions?

First, I’d recommend learning as much as you can about mechanical neurological conditions. Then, identify specialists who have the experience to evaluate and treat you.

After that, you will contact the doctor of your choosing. This is often a neurosurgeon, or, sometimes, a regenerative medicine doctor. They will have new patient forms for you to complete, as well as specific imaging requirements.

The idea of neurosurgery scares me, and neurosurgery is inaccessible to me. Are there ways to treat these conditions without neurosurgery?

Some people have reported improvement from non-surgical treatments. One promising area of treatment is regenerative medicine. Some people in the ME community have improved enough with regenerative medicine to avoid a fusion surgery. I have had two successful regenerative medicine procedures in my lower cervical spine, to address instability beneath my fusion.

Regenerative medicine is currently considered experimental. In my opinion, it is a promising new field. But, as with any intervention, there are no guarantees.

Does everyone go into remission from ME after neurosurgery or regenerative medicine?

While many people have gone into remission or substantially improved, not everyone has. There is still much to learn, and the research is in its relative infancy. Our situations are often complex, and there can be multiple causal factors.

I’d like to further explore these issues. Can I contact you for guidance?

Yes! I am now working as a consultant to patients, as well as to MDs and researchers who work with our community.

You can learn more about this, here.

I was told my imaging is normal. Does this mean I don’t have a mechanical condition?

At this point in medical history, most radiologists are not trained to recognize mechanical conditions such as CCI, occult tethered cord, and others.

During my years with ME, I had several MRIs, all of which were read as "normal" by non-specialist radiologists and other MDs. They just did not know to explicitly check for CCI or tethered cord. This problem is systemic. Many people in our community have reported similar experiences.

It is similar to how people with ME often have routine lab work read as "normal" by a general practitioner, but then, if they see an ME specialist, the specialist will run more sophisticated testing that might uncover various problems. ​The situation with mechanical neurological conditions is much the same.

I look forward to the day when this is no longer the case. Many of us -- patients, researchers, and MDs -- are actively working to make that day come sooner.

Interestingly, radiology errors are surprisingly common! This study found a miss rate of 43.6%. Another article found that 83% of radiologists failed to spot a picture of a gorilla that had been inserted into an MRI image.

So, radiology reports are not always infallible.