Dr TL noticed a book I was trying to read. My cognitive function is not good at the moment. New information doesn’t seem to sink into brain. It feels like there is a shield on brain and it repels any new information trying to cross the shield. I had to read the same sentence over and over to somehow get some meaning out of it.
The book was a compliment when I attended a research information session. Dr TL joked if I got autograph from him. I realised I should have.
What puzzling me the most is that nobody talks about the hypothesis despite it explains every aspect of ME/CFS in detail. Only thing I don’t feel comfortable with is that this hypothesis is too good to be true. Dr TL suggested things don’t work that way, and I should market the theory. But I feel my voice is too weak to reach anybody…
He explained how some of medical conditions like asthma and epilepsy were stigmatised and dismissed as “all in mind”. And even with recognition as medical condition, not mental, some conditions are still struggling to receive much needed support. For example, asthma is still killing too many people each year, but there is still ignorance in medical community to prevent it. Also conditions that are mainly children suffer don’t attract private funding comparing with the conditions that older and wealthier people suffer. A medicine that treats malaria is promoted as hair loss solution in North America instead of saving children in the developing countries. Healthcare shouldn’t be profit making business. But this is the reality…
Going back to lack of Vasoactive Neuropeptide (VNs) Autoimmunity awareness…
I see the uniqueness of Dr Staines’ position. He is employed by Qld Government, so he is not making living on ME/CFS. Probably he doesn’t have time for advocating ME/CFS. Maybe, he has restrictions against speaking only about ME/CFS. I am a little disappointed that his in-depth knowledge and understandings of ME/CFS is not being utilised for helping people with ME/CFS. Maybe, publishing intelligent papers about VNs Autoimmunity and ME/CFS is his hobby.
Please don’t take me wrong. I’ve met Dr Staines and he seemed to be a down-to-earth kind of person and he seemed caring about people with ME/CFS.
Dr TL asked what I’ve learnt from the book so far. The book is full of medical terms, so my understanding is limited to grasping general idea. I know Dr TL is too busy to read the book, so I didn’t offer him the book. But I was humbled that he wants to learn as well.
Basically what it says is that VNs is a neurotransmitter that regulates and protects our body system. Dr Staines told us it is a newly discovered neurotransmitter, therefore it is not in Neurologists’ text book yet. He called it “master key”. It is a commander who controls everything.
I’m sure you know about autoimmunity. It is a condition with over-acting immune system. It attacks and damages healthy cell because it confused it as alien invading to the system.
Once VNs is damaged, everything in our systems goes wrong, sleep cycle & quality, hormonal regulation, central nervous system, gut and bowel function, cognitive function, balance, and etc. That explains multi functional problems and even delayed response in our system. He explained how damaged VNs mimics psychological conditions as well.
In the research I’m participating , they link pesticide to VNs Autoimmunity. However, in the book, he suspects any stress or trauma can trigger it; viral infection, bacteria infection, car accident, PTSD, prolonged stress, heat stress, and the list can keep going on.
He also explains “hit and run” nature of ME/CFS. The cause or pathological evidence for VNs Autoimmunity disappears quickly so that the body left with damages without measurable pathological proof. Dr TL was interested in this theory.
It is possible that VNs Autoimmunity can link to other fatigue related illnesses such as Gulf War syndrome, MS, Parkinson’s disease, Diabetes, and more. I think I also noticed its link to SIDS and autism somewhere, but I’m not sure…
I still have a lot to read. But I’m already fascinated by the hypothesis .
I would like to hear from other medical people what they think of it.