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Information on the Web/Beware of Hoaxes
7 Replies
JJ1 - December 13

Found this in “The Fibromyalgia Connection” a newsletter out of Houston, TX. (Vol. 8, No. 3). It gives this info in regards to trusting various websites dealing with Fibromyalgia……………”A reliable site will present various perspectives
rather than claiming to have all the answers.
Question web sites that claim to be the best or
that disrespect other sites. ... patients
with incurable diseases are easy prey for people
with hidden agendas, so if a site claims to have
the cure, it is a sure sign of a hoax.”


Lynne-FT - December 13

Thanks for the reference, like I stated in an eariler post if someone had a magic cure we would have heard of it by now through one of the national organizations. Happy Holidays.


Amyloo - December 13

Thanks JJ1.


AmberRose - December 13

hey lynne...ive said that many times as well..there would ahve been a huge doctors conference and everyone would be privy to the info


larry - December 13

I wouldn't call anything a magic cure unless taking an antibiotic to treat a infection is a cure? Who knows? Anyway there have been huge doctor's conferences and this info is available however most doctors are still not trainned to understand and address diseases at the root. Because of the pharmacuetical companies in the US donating money to the medical schools the doctors are taught only to address the symptoms based on what drug can address that symptom. The rest of the world is ahead of the US on the holistic approach. There is a HUGE medical community out there that is sucessfully treating this syndrome. Mary Sholom's book "Living well with Fibromyalgia, what your doctor doesn't tell you" is just one book that has this info in it. Not all doctors are open to learning anything new after they have been in pratice so many years. Mary's books list some of the more progressive doctors that have opened their minds to treating the patient as a "whole" and not just a list of symptoms. It will take some time for the majority of the masses of doctors to follow and make their change- as their belief systems are being challenged. Holding onto one's belief system is very normal. However not at the expense of your patients health. The HUGE community of medical doctors that has successfully treated fibro is there, you just have to find them, ask questions about results and hold them accountable. We need to interview them. Self-education is the key.


barbar - December 13

Larry, stop it.


barbar - December 13

Lynne-FT is right. With all the research dollars being pumped into FMS, if there had been a cure, it would have been published in every journal from JAMA (Journal of the American Medical Association) to Journal of Rheumatology to the Journal of Musculosketal Disorders to the Journal of Fibromyalgia. Major research continues at the National Institutes of Health (NIH) and several major universities and research centers, including George Washington U, the Univerisity of Michigan, and the Washington Hospital Center, just to name a few. As I posted elsewhere, conventional medicine has been aware of the glandular and hormonal aspects of the disorder since at least 1999. This research shows that the glandular and hormonal aspects are merely symptoms and NOT the root cause (which, BTW, Larry/Kathy/Helen, you DID post that they were the ROOT cause, which was why your non-conventional approach was working). What concerns me, is that if we know that the glandular/hormonal aspects are NOT the root cause but are themselves caused by something else, then treating them as the root cause and not addressing a possible other source may gravely exacerbate the disease and harm the glands and the hormonal processes. There are a lot of hoaxes out there and there is a lot of bad so-called science out there. We are especially vulnerable. In the fifties, thyroid hormones were prescribed for a number of maladies until they discovered the negative effects. The thyroid, hypothyroid and pituitary glands are very delicate and tend to maintain the level of hormones. They found in the fifties that increasing these hormones in the system tended to cause the glands to cut down on production, often doing damage to the glands. In extreme cases, the glands actually atrophied. We all want to get better and we all are willing to investigate alternatives. But no-one wants to end up with the symptoms returning and a third eyeball growing in the middle of our chests 30 years later.


JJ1 - December 13

I am not sure if anything being touted can be considered a "cure". If you are "cured" you shouldn't have to continuously be getting injections and taking meds. I think that maybe this center has found a way that works to manage symptoms of some if you are willing to stick your neck out there.



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