[Lightrail11]

I have been selected to be a participant in the NIH study "Life Improvement Following Traumatic Brain Injury" (LIFT).

The "other" part of the news is I'm part of the control group, meaning I don't receive the therapy treatments; my progress is measured against the CBT study group. . Still, if by participating I can contribute in some small way to increasing the body of knowledge on treating depression in TBI survivors I consider that gratifying in and of itself.


http://clinicaltrials.gov/ct2/show/N...+injury&rank=1

[Mark in Idaho]

There they go trying to add more statistics to use to tell TBI survivors that they should be getting better because the CBT study shows that 60% do.

Another example of government thinking they have the answer.

Why can't they just try CBT for those who are willing to try it and let the individual results determine if the CBT works and is worth continuing.

As the saying goes, "If you have seen one brain injury, you have seen ONE brain injury."

I bet there is a CBT lobby hoping to get government funding to offer it at taxpayer expense. Or, they want it to be approved for Medicaid and Medicare funding thus pushing other insurance companies to have to pay for it as 'medically necessary.' can anyone say Obamacare. I bet it is in one of the 2700 pages.

[Lightrail11]

Originally Posted by Mark in Idaho

Another example of government thinking they have the answer.

I disagree. If they had the the answer they would have no reason to do the study. I've spoken to both the doctor in charge and the lead research analyst and I found them both to sound genuinely interested in both the study and with me as a participant.

I didn't post this to start a political discussion, I respectfully request we don't make it one.

[Mark in Idaho]

I have followed lots of research, almost all of it funded by the government. The millions of dollars spend by the VA and NIH over the past ten years have done very little to improve care or even recognition of the vast range of symptoms of TBI.

There have been good studies done that have been rejected because they did not support specific powerful industries and their financial goals. The quality of much of the research is very poor. Research is a cash cow for researchers, not a system for moving forward with patient oriented improvements.

CBT has been around under that specific label since the 1960's. The concept has been used since the early 1900's. The research parameters used are often severely limiting the scope of the research. This leaves room for follow-up research to fill some of the holes.

Even the NIH operates with an policy of support the researcher rather than the patients. Those paid to do the research retain copyright for years before the taxpayers have access to the research paid for with taxpayer dollars. At least now there come a time when the taxpayer finally has access to the research. It was only a few years ago that Congress finally claimed eventual taxpayer ownership or access to federally funded research.

There have been attempts by a few in Congress for years to get these issues before the public but the insurance companies and trial lawyers fought it tooth and nail. If it was not for a few high profile NFL lawsuits, we would still be in the dark ages, even though thousands of studies have been done. The valid research goes back to the 1970's.

I don't care whether it is Obamacare, Romneycare, RonPaulcare or Santorumcare, when the gatekeeper is a bureaucracy, the patient will always be last in line to receive benefits. I have lived with managed care that uses statistics to decide what treatment gets offered. When they do approve the treatment, they get stuck using only a preset protocol that severely limits the effectiveness.

I wish I could be as excited about the possibility of this research helping the injured.

btw, We have a local entity that has been researching the needs of the mTBI/TBI community here in Idaho since 2002. They have received 3.7 million dollars, that $3,700,000 and so far no injured have been helped. They have less than 50 people registered in their database. The researchers travel the country attending symposiums and hiring lecturers to lecture to very small crowds. Very few of these lecturers even allow their lecture outlines to be published claiming copyright privileges. The only noticeable benefit is some post-grad students have had their studies funded.

Maybe my experience has left me jaded or maybe just more realistic.

[EsthersDoll]

I'm starting the proces of being accepted into a study that is researching fatigue after mTBI. The researchers need some paperwork from the hospital where I was initially diagnosed in order for me to be accepted. I don't even know if the hospital will be able to provide them with the proper information but I'm hoping they do because I have to deal with an obscene amount of fatigue especially when compared to how energetic I was before the accident I was in.

They need to see a CT scan - which wasn't done on the day of the accident I was in but about two weeks after. Or they need some kind of glasgow coma scale - which my Dr. says they probably didn't do because I was too awake. So... ?

Anyway, I think it's important to give researchers all the information they need to be able to help people recovering from mTBI in the future.

I didn't apply to be a participant in the study you're taking part in because I'm already receiving CBT for the head injury and its effects since the injury I sustained and I can't imagine what my life would be like without my therapist! I definitely think that talking to her every week helps me a great deal and I'm not willing to give her up just to be a part of the study. I think my life would be more stressful without her right now. I am having a lot of trouble accepting my limitations still - I still want to be the person I was before the accident and I don't like that I'm not.

Anyway, please keep us updated about the study. I'll be interested in reading what their conclusions are.