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National Institute of Health

NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

This place is the largest research facility of it's kind in the world for dealing with rare diseases. It is funded by the US government so they don't charge anything. The doctors and labs there work with cutting edge technology and it does not cost the public nothing. All we have to do is write them about our problem, it goes thru a review board made up of lawyers, doctors, scientists, and biologists.

They work with the cutting edge technology like  immunotherapy. Yes this is still in its infancy stage but they have made much head way.

On their web site, they mention that they will work with rare diseases that doctors and specialists give up on or have never heard of. I'm going to write them about our problem and see where it goes from there.
4 Responses
Avatar universal
This is a great idea.
Avatar universal
Hey Ray, I think it's a great idea.

I have one question though. What is the intention of the letter? For them to help us reinterpret the current results from Mebo? To find a cure? To restudy all from the beginning with no mention of what MeBO has done so we can have fresh start?

If I know the answers to the above questions I think I can point out various strengths and possible weakness of the approach to avoid.
Avatar universal
I think the letter should be a group thing. At least a few active member of this board need to agree on the content. If you write it and blow it - you might blow it for every PATMer out there..

Can we please do this as a collaborative thing?
Avatar universal
I also think that's a great idea.

We can describe in a letter our problem, symptoms, complaint. We can ask them to conduct the medical examination of the PATMers group. Let the clinic MEBO continues research. And National Institute of Health begins its study. The more organizations will explore PATMers the better.

Anyone can write a letter from yourself. But a collective letter it is necessary to write. We can mention in the letter that similar symptoms have with people in other countries. 20-40 Russian PATMers confirm.

So we need a non-profit organization. So we can quickly collect signatures for such letters. 100-300 signatures in a month, not in three years.

Each hospital will explore PATMers and ask one main question. Patients see hallucinations? They have valetudinarianism and paranoia?

No one will deal with the proof of the existence of people's reactions on PATMers: cough, sneeze, rubbing noses. Except us. Researchers will be more confident to examine if there is evidence of the existence of the reactions.

Before writing the letter, we need to understand one thing. Different PATMers have slightly different symptoms and complaints. Everyone may have different causes of the disease. But about the same reaction. Perhaps there is something in common. But there's something different.
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