The NIH announced today that it is launching its “Undiagnosed Diseases Program”. This program will evaluate patients who are referred by physicians. They will also ask for input from so-called advocacy groups.
This should be interesting. I’m sure they will be receiving requests from people with “chronic Lyme disase”, “Morgellons syndrome”, and “chronic fatigue syndrome”. From what I can tell from reading the press release, the program is aimed at the individual patient, and is does not focus on epidemiology. This has it’s pluses and minuses. The individual patient is the smallest “unit” of disease, and for very rare diseases, sometimes one patient is all you can find. On the other hand, it is more common to see an odd variant of a common disease, than a brand new strange disease.
The other interesting bit is that this counts on doctors to refer patients. Will regular docs like me do most of the referring? Or will it be docs that are aligned with “advocacy groups” who practice at the “outer limits” of medicine?
Either way, they will only be evaluating a handful of patients yearly. It will be interesting to follow their progress. Hopefully they will find a good way of reporting their findings.
14 thoughts on “It’s zebra season at the NIH”
What happens to a “typical” patient diagnosed with chronic fatigue syndrome in the US, currently? I realize most patients would not consider themselves to be typical, and my question is not meant to be to be dismissive or critical in any way. Just wondering what sorts of treatments, therapies, medications, disability benefits, etc. are available for individuals diagnosed with CFS, and whether this new NIH program will actually have the potential to improve quality of life or access to care.
I am very discouraged ( if its true) that NIH will not interview a patient without a Dr’ referral. Some of the Morgellons patients will not receive referrals out of the fear for many Doctors to get involved. We are left without valid options if we do not have money nor insurance.
“We are left without valid options if we do not have money nor insurance.”
Posted by: SalleMarti | May 19, 2008 9:46 PM
Morgellons patients are not the only ones without money or insurance. In fact, there are tens of millions of people in this country who are also “left without valid options” when they get sick.
M1…you are right. I did not mean to sound selfish. I worked as a nurse for 23 years and know that many sick people with many different illnesses die without the medical care or medicines they deserve.
I only meant to state that because “Morgellons” is a “condition” that has so many strange and varied symptoms that are so very unbelievable, that most in the medical field are reluctant to even acknowledge the possibilities. Research takes money and time as well as an open mind and most of all dedication.
As a person who has had an undiagnosed illness, this sounds good. As a skeptic, I’m concerned. This sounds like NIH is taking a step toward becoming the TV show House!
Once you’ve calmed down a little, you may wish to more clearly state your case. Exactly what is your disagreement with the world, and what are your proposed solutions, with evidence to back up both.
Also, I’d be more careful throwing around defaming words such as malpractice and fraud. Someone might get cranky (but not me).
No where here have I presented an opinion or fact about Lyme disease. I may in the future however, and if you have any interesting data that I should be considering, feel free to post it.
Ignore Niels. He’s a long time crank and believer in the chronic lyme nonsense. I’d just disemvowell now to avoid encouraging him.
I’m not really a regular reader (especially of the comments) but I’ve got to wonder about people like Niels – do they read this blog (and presumably many others) obsessively scanning for mention of their particular pet theory that scientists/doctors are ignoring out of dogma/malice/ignorance, or do they google for such mentions and then invade…?
Perhaps at some point I’ll put something together on lyme disease. The literature is pretty good and pretty clear. But I won’t tolerate trolls coming through slinging invective. Vigorous debate is just fine, even if I don’t agree, but senseless hostile ranting is useless. Take it somewhere else.
Oh, and Julius, consider becoming a regular reader.
I actually just posted on Lyme Disease myself, but just on the causes and clinical manifestations (I’m even trying to get some pictures of my own ongoing Lyme Disease, I have a lovely erethema migrans). However, it wasn’t until I put the post up that I was aware that there was a great deal of dispute over chronic Lyme. I would really like to know what the (current) consensus is on whether or not it really exists.
I’m a little surprised that they’re asking for advocacy group input. Are the studies being run out of academic institutions?
Also, Niels’ comments are showing up on my computer as unreadable gibberish with no vowels. Is that intentional?
I’m with you David Amulet.
Pal what is your general opinion about diagnosis of exclusion?
I can see a lot of cause to be skeptical of diseases that you can’t really test for. But on the other hand, the doctors tell me I have vulvadynia which is a diagnosis of exclusion. I know more research on my particular problem would be amazing because since none of my doctors really know what is wrong and how to fix it. I kind of feel like I’m in the dark ages. (For comparison, before being diagnosed with vulvadynia, I had Hodgkin’s lymphoma. Being a very well researched disease, my doctors seemed to always know what steps to take in my treatment, what drugs were intended to do, why they worked, and had several strategies for managing side effects. For my vulvadynia I have numbing cream, off label seizure medication for pain, and when that is not enough, ice.) So I sympathize with wanting more research about undiagnosed diseases, but I really want that money spent on diseases that are more likely to be under studied and than unrealistic.
Niels got diemvoweled.
Diagoses of exclusion are “trash can” diagnoses we use when we have failed to find any specific pathology behind the symptoms. They are defined by the fact that we’ve run out of tests (basically).
Actually, Wayne State in Detroit has an expert in vulvar diseases.
I have a post on Morgellons. My own thought is that it is due to chronic low basal NO levels, with the organ of presentation being the skin. Low NO increases the sensitivity of mast cells in the skin, making them so sensitive they activate with little or no provocation.
I suspect that some of the diseases that are characterized as “chronic infections” are actually due to low NO (actual bacterial infections would either be cleared, or unresponsive). The reason that chronic antibiotic use seems to help is (my hypothesis) due to a Jarisch-Herxheimer reaction from gut bacteria being killed by the antibiotics. The LPS and other antigens from the killed bacteria stimulate the immune system causing expression of iNOS and production of NO. That NO from iNOS adds to the basal level and causes slight improvement. This continued stimulation of the immune system by the Jarisch-Herxheimer reaction actually perpetuates the low NO state by what I call the “low NO ratchet” (discussed in my post on fever therapy and autism).
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