Post by sadsack on Mar 4, 2009 12:02:41 GMT -5
Everyone:
I just got off the phone with NIH Undiagnosed Diseases Program, speaking first with a line operator and then up to a supervisor.
I was unable to get a clear answer as to why Morgellons is being rejected as a syndrome worthy of study. I know two very articulate people who applied and had lots of medical documentation and letters from their health care providers asking for their inclusion.
The "reason" for denial into the program...get this...is that "they already have a diagnosis". I made it very clear that NO ONE gets diagnosed with Morgellons - it is ALWAYS a "self-diagnosis" based on the afflicted researching their symptoms and finding the right match.
She then said something about there being a "parasitic disease" section at NIH that perhaps these people could look into. To this I said that the leading researcher into Morgellons has found NO EVIDENCE of parasites (Dr. Wymore).
I was polite but did not allow this "wiggling" to continue. I let her know that there is a ground swell of anger and frustration within the community about the government's apparent lack of concern about this rapidly spreading horror. I told her that many people are so debilitated that they cannot function, yet they are denied Social Security benefits because Morgellons is NOT recognized officially. I also told her that suicides are common, and that the NIH's position regarding Morgellons is unconscionable and suspect.
I told her to let Dr. Gahl know that specific actions against the NIH are the subject of discussion in the Morgellons world and that he should expect organized protests and publicity regarding this travesty.
I recommend that people start innundating the NIH with calls/complaints about this very obvious effort to side-step the issue. Here is the number: 1-866-444-8806
You will be asked your name and number; be prepared to give it to them. Stand up and be counted!
Also be prepared with factual information based on verifiable research. One of the best sites that I have seen that pulls it all together is: Morgellons: Unexplained Dermopathy.
Don't get into theories in your presentation, just stick with the evidence and the numbers of people afflicted, etc. Don't back down, but don't lose your temper and get abusive, etc. A sustained, rational approach to this will eventually wear them down.
Remember, the NIH is a FEDERAL PROGRAM paid for with your tax dollars. Their sole purpose for being is public health and disease enquiry. THERE IS NO REASON FOR THEM TO CONTINUE TO IGNORE MORGELLONS!!!
anewday
PS - The supervisor is passing my call up to a higher supervisor who will call me back. I will report the results of this call when it occurs.