Complaint Review: CIIN Chemical Injury Information Network - Internet

I disagree with the person above.  CIIN provides excellent research for consumers. The report they sell' are usually peer-reviewed medical journal papers - which the medical journals charge them for. Many journals charge $25 to $35 a paper or make you become a member at hundreds of dollars per year.

The services provided by CIIN saved my life.  CIIN does the research and provides them to you - saving you time and money. They were able to find studies that I would never have found in my lifetime- they know where to get the information, This is a small non-profit - and their expenses are high.

I don't mind the fees - they are worth every cent if you have a chemical sensitivity, cancer, neurological or other condition caused by chemicals. 

 Chemical Injury Information Network has consistently provided excellent chemical injury information in the newsletter for patients, attorneys and medical personnel. I have benefited from their information so I am writing to say their information is helpful. The founder, Cynthia Wilson, is not excellent.

She knows she is mentally unbalanced, she is rude and abusive to patients, probably to every one. She attributes it to her "health problems."

I suggest information seekers join at the reasonable price and avoid any contact with Cynthia Wilson. Mental Illness is as real an illness as physical illness, as real as chemical injury. CIIN has a lot of good information to offer, just avoid the abuse.

Wonderful information (which is obtained elsewhere and compiled into a "newsletter" yet the ability to have a dialogue without hostility deteriorated over time (10 plus year member).

As a person who ended up nearly dead from chemical exposures in 1995 (paralytic, internal organ damage and bleeding, unable to cognate and other symptoms) and was introduced to C.I.I.N by a Dr. Grace Ziem having been led to her by the author of "Artist Beware" (I had a background in both sciences a degree in Psychology - study of brain and more and was working towards my MA, chemistry of arts, and holistic therapies) I have many years of experience with this newsletter. This was when few had the internet (or could be around Electromagnet radiation) and mostly postcards were sent to other members. The member ship fee is small (at the time don't know about current rates) or one gave what one could.

While MCS/EI/Sick building (various labels) and associated dis-eases such as FM, CFIDS,) were not well *acknowledged at the time by main stream doctors or the legal system (1994-5) this newsletter was invaluable. I received legal, medical and other resource information from members (then by postcard). And the ads led to companies that cater to this population with various products or Medical information.

*(damage from synthetic or even natural chemicals had been around since they were created post Wars)

That said, years later when I wanted to post, NOT an ad but a request in the (if memory serves) the one to one section (and by now I was on the internet) I was charged a fee. No matter how I said it was the "one to one" which is free they wanted to charge me (I was indigent by then). I have to say I was not spoken to in a polite manner when I called and spoke to both (husband and wife) and stopped my membership. I am only here as I dug out an old copy to see if I can find a EI doc in WA to obtain a letter so housing won't put shampoo in the carpet cleaner! This is 22 years later (not counting the downward spiral) and yes it is a devastating condition on all fronts (many homeless living in tents and cars).

Prior to that, a certain expert in the field (MD) was "banned" from writing in for their newsletters because she wrote about healing. When I contacted the author of the newsletter she stated that there is "no cure" and my reply was who cares if one can go from nearly dead to functioning. There is no cure because it is not a disease but poisoning and one attempts to repair the damage (mostly nutrients and other measures). (the MD in question was not only one of my MD's but I am testimony that the body can heal (using my own therapies as well). They gave a negative opinion on another MD, again one whom I had seen and actually posted my "rebuttal" of their review with the assistance he gave me.

That said one can never be around these toxic products again if one wants to stay that way - as she states "avoidance").

This "selectivity" is noted by me on many forums, blogs, yahoo groups - the moderator allows certain discussions if it agrees with their beliefs. Unlike the aids newsletter that I found great information from (I studied any dis ease and what healed) whereby one could post anything and membership could pursue the newsletter and make their own suggestions.

To conclude they are not a "sham" but all with this illness are under great pressure. The Rx companies own our Congress (minor in City Government) Medicare is being drained for Medicaid, only 11 states have medical freedom acts (where one can choose their own treatments) and many Doctors loose their licenses if they do not comply with Rx treatments.

The brain (Central Nervous system) is a major target and emotions can be all over the place due to chemical imbalances. Still have someone else do these duties if one treats membership (as I was myself) in any manner outside of professional.

I agree, I never knew where the funding went to? I asked once as I was about to be homeless?  I can only state that having worked for law firms long ago, all funding activities have strict and complicated guidelines that have to be followed (and lawyers are usually hired to oversea this).

All of the information btw can be found by going to Dr. Grace Ziem’s website and she has a research arm, ranging from medical studies, ADA and other sources of valuable information (I paid 2k for all of the research at the time, as I had a background in research) and there are many other sources now. They are just reprinted from other sources and complied into this newsletter. I gave it all away to another group in the Northwest thinking they would publish it for others but they never did! With the internet there are a great many resources now.

"Sensitivity" by the way is not one is more delicate, but a phenomenon of the cells (the chemicals both anesthetize and/or sensitize the cells) meaning - like being punched in the arm, over time it can be so damaged (bloodied and bruised) that even a light tap can cause severe damage.

It started out great then seemed to deteriorate over time which is unfortunate. NOT in the information it provides but by how it is run.

Freedom of the Press still exists and no company can put this one "out of business". Dr. Ziem was targeted (60 minutes) sued and won! As more and more people become injured (the Labor Board stats in 95 estimated 79 million) the more this will not be ignored - too costly!

The Chemical Injury Information Network is operated by victims of chemical injuries who are medically disabled from chemical exposures and were given the brush-off by the big companies who make the chemicals & have the money to intimidate victims into silence. Some people can be 1000 times as sensitive as others to chemicals, so the claim that some chemical "doesn't bother me, so what's your problem?" is used as a basis to deny legitimacy and compensation to victims whose injuries are less visible than physical injuries, but are sometimes totally disabling and life-changing to the victims. (As a primary-care physician, I have seen several such patients. Chemical injuries are real, and often persist for years after exposure with damaged immune systems and nervous systems, and weakness.) The CIIN has no outside funding and no lawyers to help them fight back, and is run by volunteers (many of them disabled) who can only fund their operations from private donors who have also been injured. They have also been harrassed by corporate lawyers for publicizing chemical hazards. That is why they request membership payment for the otherwise poorly-publicized reports on chemical hazards (to see if you're serious or just a corporate lurker). They aren't making any money for themselves, and are used to being harrassed and intimidated for speaking out. Many public-health schools (who should be studying community health hazards) receive major donations from chemical companies, so that any faculty member who tries to study chemical hazards is soon told not to rock the boat, study something else instead. Even some state & Federal government reports on "acceptable levels" of chemical exposure were submitted by the chemical companies themselves, with no independent verification. Remember the example of the tobacco companies who denied any harm from tobacco for decades after the medical evidence had determined otherwise; the politicians were kept bought off by large campaign donations. When the fox guards the henhouse, no one is safe. The real ripoff is by the corporate greed (profits over safety), allowed by bought-off politicians and, where necessary, corporate litigation that can bankrupt the little folks who complain. (The mortgage industry is another recent example of corporate ripoffs of little folks.) When in doubt, follow the money!