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I can tell when i'm building up to PEM or its coming on or i'm borderline. I assumed most other ME/CFS patients can as well. This is the thing, i suspect that some of us may not have ME but have CCI. If our goal is to talk people out of getting tested "for the children" or because its a serious...

Very good news, its only a start but an impressive one. IIRC there was something similar for MS back in the 70s(?) It will be a very long process. Perhaps even longer then this was but the longest journey begins with a single step and we must persevere until we succeed. Indeed though what...

But it has yet to bring us the kinds of superpowers seen in fiction :D

Some people are relapsing/remitting. Like you i am not.

In the words of Grandpa Simpson

I assume its going to come and go for me and this is just a symptom of increasing ME severity That said if i figure out exactly what caused it i'll post it I'm very different i will seek testing if i can reasonably manage it. One of my greatest fears is that a treatment for ME will be found and...

The thing is if there is subsets they are likely different diseases but have to be named and disease mechanism elucidated

Thats more or less exactly what i am getting at. Stupid theories are a dime a dozen and morphing nonsense into a theory at a cognitive level of a 5 year old is just a waste of paper.

I had something similar happen when i took the train to an ME conference last year, afterwards i felt like someone put me on a roller coaster or centrifuge. Happened again when i was being driven but didn't happen when i was driving. Since then it stopped happening. No idea what it was or why...

I get where your going It can be hard to resist direction changes when its based on your own situation as well

As you said "We are talking about whether or not CCI is associate with a clinical picture that overlaps with ME/CFS" Obviously very new since as you said "I just did a Pubmed search on Craniocervical instability and fatigue. The result was: No documents match your search terms"

If it was not for this i might not be here typing this right now. Another poster suggested what worked for them in their N=1 situation and it helped guide me to something that i would not have tried otherwise. Ideas build on ideas, obviously verification and testing is needed but saying lets...

By this logic this quote would be channeled "Everything that can be invented has been invented" Obviously jumping to conclusions is ridiculous but you can't assume that a new idea can't be true since it has little published background. All successful ideas came out of ether (or more accurately...

Weird how there are so many differences. Earlier when i was mild/moderate my motor control was amazing, it was difficult but i could do things most people could not, i could hit baseballs in a batting cage with amazing accuracy (then crash), i could photograph objects moving in the air. I've...

I wasn't saying i am against it either, my point is that in rare diseases or rare treatments there are probably often very few experts in the world. Even for mainstream diseases, i know more then one person who was used a new or experimental treatment despite the commonness and huge NIH research...

I don't like the x-ray component, i would prefer ultrasound or MRI or other imaging due to the radiation involved but you could get this turned into a clinical test for widespread use after adequate R&D

Egads! This means a non surgical method could help determine if a patient is likely to improve. It needs verification, replication, documentation and all that blah blah blah but this is a huge deal :jawdrop:

Its not to me. In fact it may be normal. The cutting edge of science is by a few who have discovered it or have decided to specifically pursue it. I've had to go to some top world experts and have been offered opportunities by them to visit colleagues if i wanted to (lets just say going to...

Somehow i completely forgot about this thread. Don't ask me how Yikes. Mine is not like this but it is taxing and my writing has become almost doctor like at times I can understand this. Mine is more that my hands don't do what i am tying to get them to do or i can't get fine enough to get a...

... https://slate.com/technology/2019/05/werner-syndrome-speeds-up-aging-search-for-a-cure.html