New study describes harm from pharmaceuticals

Discussion in 'Fibromyalgia Main Forum' started by richvank, Aug 26, 2010.

  1. richvank

    richvank New Member

    Hi, all.

    Perhaps this will "stir the pot" again here, but this sounds like a study that people might want to know about, since pharmaceuticals are often used to treat CFS and FM.

    Best regards,


    Pharmaceuticals: A Market for Producing 'Lemons' and Serious Harm, Analysis Finds

    ScienceDaily (Aug. 17, 2010) — The pharmaceutical industry is a "market for lemons," a market in which the seller knows much more than the buyer about the product and can profit from selling products less effective and less safe than consumers are led to believe, according to an analysis that will be presented at the 105th Annual Meeting of the American Sociological Association.

    "Sometimes drug companies hide or downplay information about serious side effects of new drugs and overstate the drugs' benefits," said Donald Light, the sociologist who authored the study and who is a professor of comparative health policy at the University of Medicine and Dentistry of New Jersey. "Then, they spend two to three times more on marketing than on research to persuade doctors to prescribe these new drugs. Doctors may get misleading information and then misinform patients about the risks of a new drug. It's really a two-tier market for lemons."

    Three reasons why the pharmaceutical market produces "lemons" are: Having companies in charge of testing new drugs, providing firewalls of legal protection behind which information about harms or effectiveness can be hidden, and the relatively low bar set for drug efficacy in order for a new drug to be approved, Light said.

    According to his study, independent reviewers found that about 85 percent of new drugs offer few if any new benefits. Yet, toxic side effects or misuse of prescription drugs now make prescription drugs a significant cause of death in the United States.

    Light's paper, "Pharmaceuticals: A Two-Tier Market for Producing 'Lemons' and Serious Harm," is an institutional analysis of the pharmaceutical industry and how it works based on a range of independent sources and studies, including the Canadian Patented Medicine Prices Review Board, the Food and Drug Administration, and Prescrire International.

    The foundation for the paper is the work Light did for a forthcoming book he edited, titled 'The Risk of Prescription Drugs," which is scheduled for publication this fall by Columbia University Press.

    In both his paper and his book, Light describes the "Risk Proliferation Syndrome" that is maximizing the number of patients exposed to new drugs that have relatively low efficacy and effectiveness but have greater risk of adverse side effects. Building on clinical trials designed to minimize evidence of harm and published literature that emphasizes a drug's advantages, companies launch massive campaigns to sell it, when a controlled, limited launch would allow evidence to be gathered about the drug's effects. Companies recruit leading clinicians to try using the drug for conditions other than those for which it is approved and to promote such off-label or unapproved uses. Physicians inadvertently become "double agents" -- promoters of the new drug, yet trusted stewards of patients' well-being, said Light. When patients complain of adverse reactions, studies show their doctors are likely to discount or dismiss them, according to Light.

    Despite the extensive requirements for testing the efficacy and safety of each new drug, companies "swamp the regulator" with large numbers of incomplete, partial, substandard clinical trials, Light said. For example, in one study of 111 final applications for approval, 42% lacked adequately randomized trials, 40% had flawed testing of dosages, 39% lacked evidence of clinical efficacy, and 49% raised concerns about serious adverse side effects, said Light.

    "Just recently, major reports have come out about biased, poor trials for Avandia and Avastin," Light said, who noted that orphan drugs are tested even less well.

    "The result is that drugs get approved without anyone being able to know how effective they really are or how much serious harm they will cause," Light said. The companies control the making of scientific knowledge and then control which findings will go to the FDA or be published.

    "A few basic changes could improve the quality of trials and evidence about the real risks and benefits of new drugs," Light said. "We could also increase the percentage of new drugs that are really better for patients."

    The paper, "Pharmaceuticals: A Two-Tier Market for Producing 'Lemons' and Serious Harm," was presented on Aug. 17 in Atlanta at the American Sociological Association's 105th Annual Meeting.
  2. simonedb

    simonedb Member

    That really makes me wonder why ampligen can't get approved then? Are they that lame on their trials or is there some obfuscation going on?
  3. TigerLilea

    TigerLilea Active Member

    Maybe ampligen isn't getting approved because the company is being honest about the results and aren't hiding anything :)
  4. gapsych

    gapsych New Member

    Trying to stir up the pot? Slow day? :>)

    This is the way I look at it.

    You have two choices.

    The BigPharma meds. at least have had some kind of clinical trials. So some, not all, of the side effects, efficacy are known before they are in the marketplace. There is no guarantee that there will never be adverse events with medications.

    BigPlacebo is not regulated in this country and the companies are suppose to report adverse events but this is like closing the barn door after the horse is out. It is easier to cut corners, poor product control if you are not regulated and we really don't know if what it says on the bottle is what you are really getting. The supplemental industry is very very profitable.

    Unfortunately, many people think that supplements are regulated as they were before 1994(?).

    Being a skeptic/critical thinker, I apply the same set of standards if something hinky is going on with both industries.

    I go by the odds and that would be Big Pharma.

    If there is scientific proof a supplement works, then it is no longer alternative medicine. If there is a deficiency and you have a valid test to prove this, then it is needed.

    Unfortunately, even if you have a deficiency, you still aren't guaranteed that what you see is what you get.

    So door #1 or door #2? Possibly #3?


    ETA The paper you site is an opinion. Is there a source for the validity that 85% of new meds. are not effective?

    Some of the points in the above paper can be said about the supplemental industry as well. In fact it is easier for them to do this behind closed door type of stuff if you are not regulated.

    Even some of the more ethical companies are calling for regulation as they want validation.

    [This Message was Edited on 08/26/2010]
    [This Message was Edited on 08/26/2010]
  5. mbofov

    mbofov Active Member

    It was a slow day, wasn't it? ;D

    I'm not at all surprised by the findings. My elderly mother had adverse effects to several different drugs, but the doctors didn't know she was suffering from "side effects" (actual effects) of the drugs and would have just prescribed more drugs to deal with the "side effects". I read all the fine print on the drug handouts, showed it to the doctors, and they stopped the drugs, and symptoms disappeared.

    There are too many drugs for doctors to be up on all the side effects and too often they will dismiss patients' complaints. We were fortunate the doctors listened, but also fortunate that I read all the fine print. How many patients do that? You can't rely on your doctor for that.

    Drugs are not found in nature. They are unnatural products created in laboratories and the fewer we ingest the better. They're not something our bodies would ever come across in the ordinary course of events, unlike herbs.

  6. gapsych

    gapsych New Member


    Don't know how to break this to you but the number is now much higher than 3!!

    Yeah, exciting times right now in the CFS community. I'm keeping my fingers, toes, knees and eyes crossed.

  7. gapsych

    gapsych New Member

    The Goddess of beauty and wisdom, of course. You scoff, but it is a little known fact that GBW appeared in the original draft of the story. Unfortunately, the editor went a bit overboard and her character was deleted. Something about it being too long if they didn't, but don't take it personally.

    I also do not like horses. Long story. :>)

  8. amomwithsickkids

    amomwithsickkids New Member

    Here I am eating and reading and fried rice is on the floor.

    Rich, the "Yeah, I just couldn't pass that one up, and wanted to see if you "3 musketeers" were still awake! :)-)" comment totally made my day.

    Thanks for posting the research. Many people read your posts. And thanks for keeping it real.
  9. richvank

    richvank New Member

    Hi, Livvy.

    Here's something I copied off the internet that describes the three phases of testing required by the FDA for new drugs:

    Before a drug can be approved for sale to the public there is a set of clinical tests that must be performed. There is the Pre-Clinical Research Stage. Here the drug is synthesized and purified. Animal tests are performed, and institutional review boards assess the studies and make recommendations on how to proceed. If the recommendations are positive, then an application to the FDA occurs and clinical tests begin.

    Phase 1: clinical studies in this phase represent the first time that an IND is tested on humans either healthy volunteers or sometimes patients. The purpose of these studies is study in a clinical setting the metabolism, structure-reactivity relationships, mechanism of action, and side effects of the drug in humans. If possible, phase 1 studies are used to determine how effective the drug is. Phase 1 studies are usually conducted on 20 to 80 subjects.

    The purpose of phase 2 clinical trials is to determine the efficacy of a drug to treat patients with a specific disease or condition, as well as learn about common short-term side effects or risks. These studies are conducted on a larger scale than phase 1 studies and typically involve several hundred patients.

    Phase 3 clinical trials provide more information about the effects and safety of the drug and they allow scientists to extrapolate the results of clinical studies to the general population. Phase 3 studies generally involve several hundred to several thousand people.

    There are several checks and balances in the process of clinical trials; among them is the use of institutional review boards (IRBs) and advisory committees. IRBs are designed to protect the rights and welfare of people participating in clinical trials both before and during the trials. IRB's are made up of a group of at least five experts and lay people with diverse backgrounds to provide a complete review of clinical proceedings. The CDER uses advisory committees of various experts in order to obtain outside opinions and advice about a new drug. It also provides new information for a previously approved drug, as well as labeling information about a drug, guidelines for developing particular kinds of drugs, or data showing the adequate safety and effects of the drug.

    Best regards,

  10. richvank

    richvank New Member

    Hi, Kina.

    It's good to hear from you. Sorry that your knee is still in bad shape. I hope they will be able to do something that will help.

    Take care.

  11. amomwithsickkids

    amomwithsickkids New Member

    is under the bridge (or under the table).

    Not to worry, I am not one to go without eating and I was able to fetch some leftovers. But please don't make me spill's the last batch that I'm eating now!

    I understand the temptation to rattle cages and the predictability of the responses. How many times can so many here say "been there, done that" ???

    You are above all the nonsense. Please refrain from negative responses. It's not worth your time and effort.

    Many here look to you as a resource. Don't involve yourself in petty nonsense. Focus on the things you've been doing all along.
    [This Message was Edited on 08/26/2010]
  12. u&iraok

    u&iraok New Member

    Some Pharmaceutical Clinical Trial Results Are Buried, Study Shows
    Results remain unpublished, hard to find.

    Antidepressants like Paxil, shown above, are one of the five classes of drugs for which all clinical trial data are not always available.

    Investors interested in pharma stocks and patients eager to know if an experimental drug works have one thing in common: they devour stories reporting the results of clinical trials, which assess whether a new drug is safe and effective. Now it turns out they have something else in common: they’re not getting the whole story.

    Results from fully one third of the clinical trials of five classes of drugs never see the light of day, finds an analysis published in Annals of Internal Medicine. The drugs were anticholesteremics, antidepressants, antipsychotics, proton-pump inhibitors (which reduce gastric acid), and vasodilators (which relax blood-vessel walls in order to reduce blood pressure).

    Such publication bias was supposed to be addressed by the requirement that all clinical trials be registered at, and the results posted when they come in. But as a British neuroscientist who blogs as Neuroskeptic notes, that is still a step short of requiring publication: “The problem is that doesn’t appear on PubMed [the online database of biomedical studies and publications], and medical science works on the rule of ‘PubMed or it didn’t happen.’ Someone searching for papers about ‘drug X for disease Y’—which I suspect accounts for the vast majority of clinical paper downloads—will still only get told about the trials that the authors chose to publish.”

    The specific pattern of nonpublication is particularly disturbing. The Annals study, led by Florence Bourgeois of Children’s Hospital Boston and Kenneth Mandl of the Children’s Hospital Informatics Program there, finds that of 546 drug trials conducted between 2000 and 2006 (the cutoff was to allow the trials several years to see the light of print), only 32 percent of those primarily funded by industry were published within 24 months of finishing. That compares with 56 percent of the trials funded by nonprofit or nonfederal organizations with no industry money. Combine that with another finding—that industry-funded trials reported positive outcomes in 85 percent of publications, compared with 50 percent for government-funded trials—and a worrisome specter emerges: industry is cherry-picking which of its clinical trials to publish, deep-sixing those that failed to show that a new drug is effective.

    We’ve known for years that publication bias has skewed the perception that doctors and patients have of antidepressants. That is, the perception is that the drugs act on the brain’s neurochemicals and work. But the reality is that, when you analyze not only the cherry-picked data but the unpublished studies as well, that is far from the case, as I wrote earlier this year. That this problem also extends to drugs meant to reduce cholesterol or to treat serious mental illness, gastric acid, or hypertension suggests that many more patients have real reason to wonder about the effectiveness of their medication.

    There are two interpretations of why industry-funded trials that get published tend to be more positive than those without industry funding. The benign one is that industry is simply better at doing trials and picking winners, says Mandl. A more worrisome interpretation is that “bias may be creeping in that causes these drugs to appear to have more positive outcomes than they actually do,” he says.

    Publication bias does not affect whether a drug is approved; the Food and Drug Administration requires drugmakers to submit all data, published and unpublished, when they seek approval to sell a new drug. The problem comes later, when individual doctors comb through the literature for information on a drug. Selective publication of positive studies means doctors are getting an inaccurate picture of drugs’ effectiveness. And now that we are in an age of evidence-based medicine, there is an even bigger threat. Professional societies use published studies, not those locked in a safe at a drug company or buried on a Web site (in September 2008 began requiring that all results, published and not, be submitted), when they issue treatment recommendations and guidelines, Mandl pointed out to me. “The practice of medicine is heavily dependent on the published literature, which is synthesized into guidelines and recommendations,” he notes. It is the “evidence” of evidence-based medicine.

    This is not the first study to find that publication bias is still going strong, but it is the most complete one. A 2009 analysis in PLoS Medicine, a peer reviewed, open-access journal, examined a random 10 percent of registered clinical trials, and found that after at least two years from the study’s completion, less than half (311 of 677, or 46 percent) had been published. Again, trials primarily sponsored by industry were less likely to be published than those funded by nonindustry/nongovernment sources—40 percent vs. 56 percent.

    The consequences of selective publication have escalated in an age when millions of people are looking for health information online. Harris Interactive reported this week that 175 million Americans have gone online this year to look for health information—that’s 88 percent of all the adults online, and enough to inspire the term “cyberchondriacs.” Few of them have the knowledge to wade through the raw data at Instead, they perform searches that return links to published papers, or to Web sites and publications that report on those published papers. The result is that we are too often misled about whether drugs are effective.

  13. richvank

    richvank New Member

    Hi, Kina.

    I apologize.

    And I really do hope things will get better re: your knee.

  14. Debra49659

    Debra49659 New Member

    I knew it was possible to have a civil discussion...even adding humor on both sides. Kina I'm sorry about your knee. I hope you are feeling better today.

    I'm gonna throw this in Rich's pot, and stir it up some more. In a more serious note I use both supplements and pharma meds. All ok'd by my doctor. However, I could not get by prescription pain meds. Its an individuals choice, as to all our DD vary in intensity, and as individuals we have to make the choices that we believe are in our own best interests. Take what works and leave the rest:)

    August 22, 2010

    A dozen ingredients commonly found in dietary supplements should be avoided, according to a new report, because they are linked to cancer, coma, kidney and liver damage, heart problems, and death.

    Compiled by Consumer Reports, the report singles out 12 dietary supplement ingredients termed the ''dirty dozen." "The dozen we call out in this report are by no means the only dangerous ingredients," Nancy Metcalf, senior program editor at Consumer Reports, tells WebMD. "They are the ones we chose to highlight."

    A spokesperson for the supplement industry calls the report ''a little bit sensationalized."

    Dangers of Dietary Supplements: A Closer Look

    Researchers from Consumer Reports worked with experts from the Natural Medicines Comprehensive Database, an independent research group, first identifying from a database of nearly 1,100 ingredients a group of about 25 ingredients that had been linked to serious problems either by research studies or case reports.

    Next, they whittled down the list to the 12, evaluating adverse events as well as how available the ingredients were and how aggressively the products containing them are promoted, Metcalf says. ''It's to a certain extent a subjective thing," she says of the process. She and her colleagues combed medical literature and other data to arrive at the list of 12 that Consumer Reports advises people to avoid.

    On the list are these ingredients, their uses, and what evidence Consumer Reports has they may lead to problems:

    •Aconite, used for joint pain, wounds, gout, and inflammation, but linked with nausea, vomiting, heart rhythm disorders, respiratory system paralysis, and death.

    •Bitter orange, used for weight loss, allergies, and nasal congestion, but linked with fainting, heart rhythm disorder, heart attack, stroke, and death.

    •Chaparral, used for weight loss, colds, infections, inflammation, cancer, and detoxification, but linked to kidney and liver problems.

    •Colloidal silver, used for fungal and other infections, Lyme disease, rosacea, psoriasis, food poisoning, chronic fatigue syndrome, and HIV/AIDS, but linked to bluish skin color, mucous membrane discoloration, neurological problems, and kidney damage.

    •Coltsfoot, used for cough, sore throat, laryngitis, bronchitis, and asthma, but linked to cancer and liver damage.

    •Comfrey, used for cough, heavy menstrual periods, chest pain, and cancer, but linked to liver damage and cancer.

    •Country mallow, used for allergies, asthma, weight loss, bronchitis, and nasal congestion, but linked to heart attack and arrhythmia, stroke, and death.

    •Germanium, used for pain, infections, glaucoma, liver problems, arthritis, osteoporosis, heart disease, HIV/AIDS, and cancer, but linked to kidney damage and death.

    •Greater celandine, used for upset stomach, irritable bowel syndrome, liver disorders, detoxification, and cancer, but linked to liver damage.

    •Kava, used for anxiety (and is possibly effective, according to Consumer Reports), but linked to liver damage.

    •Lobelia, used for coughs, bronchitis, asthma, smoking cessation, but linked to toxicity, with overdose linked with fast heartbeat, very low blood pressure, coma, and possible death.

    •Yohimbe, used as an aphrodisiac, for chest pain or diabetic complications, depression, and erectile dysfunction (and possibly effective, according to Consumer Reports), but linked to high blood pressure and rapid heart rate at usual doses and at high doses linked to severe low blood pressure, heart problems, and death.
    The possible problems listed for each are based on either case reports or clinical research, Metcalf tells WebMD. The report updates a previous investigation on supplements done by Consumer Reports, Metcalf says. The publication thought it important to update the information, she says, as ''half the adult population takes some supplement."

    In 2009, more than $26 billion was spent in the U.S. on supplements, according to the Nutrition Business Journal, a trade publication. In the last five years, supplement sales have increased by nearly 6% a year, according to Carla Ooyen, a spokeswoman for the publication.

    Despite the popularity of supplements, Metcalf says, "You need to be extremely careful about buying nutritional supplements, because there are several different ways they can be harmful."

    Some supplements, she says, include ingredients that can be ''inherently harmful" and lack proof of effectiveness.

    In other cases, manufacturer error may lead to excess amounts of ingredients in products. That was the case for a Tennessee man who took a supplement and experienced diarrhea, joint pain, hair loss, lung problems, and had fingernails and toenails fall off. In his case, detailed in the report, an inspection of the supplement maker's facilities found the samples had more than 200 times the labeled amount of selenium and up to 17 times the recommended intake of chromium, according to the report, citing FDA information.

    Dietary supplements are regulated under the Dietary Supplement and Health Education Act of 1994. Under an amendment effective in 2007, manufacturers are now required to report serious adverse events.

    But Metcalf and others think the FDA needs more regulatory power. ''The FDA should be given more power to yank these things form the market [when found ineffective]," Metcalf says.

    Dietary Supplements: Industry Views

    The report is termed ''a little bit sensationalized" by Andrew Shao, PhD, a spokesman for the Council for Responsible Nutrition, a trade group.

    "Any time you pick adverse experiences from a handful of individuals, you know it is being sensationalized," he says. "It doesn't represent the totality of the evidence."

    "Some of these ingredients [in the report] have been flagged by the FDA years ago," Shao says. But he also acknowledges that despite this, the ingredients are still readily available.

    Like Consumer Reports, he says more enforcement power is needed by the FDA.

    Another expert took exception to some parts of the report, saying some of the ingredients Consumer Reports calls dangerous are not when used appropriately. But he agrees with other points. "I agree some should be avoided," says Mark Blumenthal, founder and executive director of the American Botanical Council, a nonprofit research and education organization in Austin, Texas. On his list: coltsfoot, comfrey, and yohimbe.

    Consumers should always discuss supplement use with their health care provider, Blumenthal says. His organization favors stronger regulations, including the requirement to report adverse events, he says.

    In the report, Consumer Reports also identifies 11 supplements "to consider." On that list: calcium, cranberry, fish oil, glucosamine sulfate, lactase, lactobacillus, psyllium, pygeum, SAMe, St. John's wort, and vitamin D.

    For safer supplement use, Metcalf says, consumers can beware of products that have been linked with the most problems - those for weight loss, sexual enhancement, and body building.

    A product that has a "USP Verified" mark means the manufacturer has asked the U.S. Pharmacopeia, a nonprofit standards-setting authority, to verify the quality, purity, and potency of its raw ingredients or the finished product.

    Consumers can also check out alerts and advisories regarding dietary supplements on the web sites of the National Institutes of Health Office of Dietary Supplements and the FDA.


    •Kathleen Doheny, Danger Lurking in Some Dietary Supplements?, WebMD.

    Edited to add that I miss Nofools antic's at times as well:)[This Message was Edited on 08/27/2010]
  15. gapsych

    gapsych New Member

    So sorry for what you are experiencing and feeling.

    You did not need this.

    If the same comment had come from one of us we would get banned for a week.

    I hit the inappropriate button.

    What's good for the goose is good for the gander.

    Take care.

    [This Message was Edited on 08/27/2010]
  16. gapsych

    gapsych New Member

    It's called oneway tolerance and gets old very quickly.

    Tsk, tsk, tsk.


    Rich I was not talking about you per se as I think you were just being kind of flippant. But unfortunately, some take advantage to personally bash people who might have a different take on things and I think that is a sad statement about the human condition.[This Message was Edited on 08/27/2010]
  17. amomwithsickkids

    amomwithsickkids New Member

    I am sorry to hear you aren't feeling well. I hope you are feeling better soon. And I am sorry if my comments hurt you.

    I never expected Rich to refer to any disagreements that have happened on the board. He just seems so serious with his posts. So when I saw what he said it struck me as odd and I literally spilled my rice. It made my day because I've been going through some things myself so I found it funny that some guy who I imagine as a nerdy scientist in a lab coat (sorry Rich) would even mention the nonsense that we all get involved in from time to time.

    I agree that he probably had a "flippant" moment. And I apparently did as well which unfortunately hurt others.

    I am sorry because I would never intentionally hurt someone. And I prefer to rise above the arguing. At the end of the day everyone here is fighting a battle and everyone has something to offer.

    Kina please accept my apology. I wish you good health and a speedy recovery from this setback.
  18. amomwithsickkids

    amomwithsickkids New Member

    Kina that isn't what I meant at all. I was not implying that by saying Rich posts seriously that you do not. I think that many of us-me included-get embroiled in disagreements and the end result is drama which none of us need. That is the nonsense.

    In reading back you didn't say anything at all one way or another. So yes it was wrong to mention your name and I am sorry if I caused you aggravation.

    You are right that it is good to have dialogue and opinions. I too think that the vast majority here do not intend to hurt and have good intentions. I do as well but unfortunately I did not convey that in this thread. It is hard because we are all reading what is written. If a bunch of us were in a room together we would find more things in common as opposed to things we disagree with.

    Again, I apologize and I wish you good health.
  19. Janalynn

    Janalynn New Member

    Yep, "drugs" have side effects, and they are all listed in the pamphlet inserts. Can Dr.s keep up with ALL of them, highly doubtful. You should also ask your pharmacist when filling the prescription if there are any side effects they know of. There is some patient responsibility. Should YOU call if you experience something out of the norm? YES! Sometimes individuals experience side effects that are not even listed because we are all different and have different reactions.

    Thank Goodness for medications! Thank goodness for research being done and those who are trying to find cures for diseases that people are dying and suffering from. I know people who are against taking "pills". When asked if they were faced with a terminal illness or even a debilitating one, yet if there was a pill they could take that could cure them would they take it, they all say 'yes'. So anyone can say they are against this and that, but when push comes to shove, are you making a blanket statement or picking and choosing?

    Pain medication isn't BAD, sometimes the users are to blame for the bad effects. Pain medication has it's place in this world.

    Someone can list they are one 8 prescribed medications and the list is outrageous. They can take 20 supplements but it's okay. (people who are "for" both, don't care)

    One could argue (which I've heard from well respected Dr's) that most don't need additional daily supplements, you should be able to get what you need in your diet. That is the best way to get everything. You CAN also get too much of things. So I don't believe that you can't harm yourself. Natural doesn't mean safe. Opium is natural.

    Nature does provide us with the most wonderful things on earth. However we not only don't have access to a lot of them, but what we're dealing with in this day and age, were not things humans were dealing with thousands of years ago - cancers, Parkinsons, organ transplants etc. the list is long. We need the pharmaceuticals.

    I trust what a Dr. would tell me about supplements more than I would anyone other than a good friend, family member or even someone here who believed in the benefits of both "bigPharma" and using supplements. It would have to be someone who I completely trusted. I feel like everyone is a pitchman. If it isn't your basic Vit D, Vit C, B, B12, COQ10 etc, Multi Vit, it seems like everyone is selling the latest greatest newest miracle. It seems like sales to me.

    Here, specifically I would LOVE to hear about what helps FIBRO, but I don't. I don't feel like I get objective information because it's from the "one or the other" point of view. I really wish people would understand that some people have a need for pharmaceutical medication and a respect for them as well. That doesn't mean that I wouldn't love to know about other options but it's harder for ME to trust the information for the reasons above and also because I'm on a Fibro board, I want what is going to help what ails me. If I want generals supplement info, I'll go to the alternative board or another site altogether. (yes I ignore)

    Thanks for listening to my long "opinion"...

    The question stands...does anyone take any supplements (who is not anti-pharmaceutical) that has helped your Fibro. Energy would be a biggie. D-ribose didn't do much for me.

  20. kerrilyn

    kerrilyn Member

    The question stands...does anyone take any supplements (who is not anti-pharmaceutical) that has helped your Fibro. Energy would be a biggie. D-ribose didn't do much for me. "

    I did get remarkably better over the summer. So much so that if I'd gone to the doctor for a FM tender point test I think I would flunk it (or pass it) depending how you look at it. And just to be clear, I've had pain absolutely everywhere, everyday, for many years. Plus other localized pain conditions, unrelated to FM, but still affected by FM which also improved. My energy levels improved greatly as well. At times I pushed myself too far, who wouldn't when you get some new found 'freedom' and are adjusting to new boundaries, and the FM pain returned, but not nearly as intense or lasting as long as it had in the past.

    Some here may consider me in the anti-pharmaceuticals category since if I have my choice I'd take supps vs. meds. But I don't feel the need to come on here and continuously preach one way or the other, or debate my POV to the death either. I really don't care what someone decides to use to improve, but I equally don't appreciate people trying to convince me what I should or should not be using because they disagree with it or if they want to limit my right to choose. Supply the info, and be done with it, I'm capable of researching something and making up my own mind.

    It wasn't one miracle cure for me, honestly I don't think that exists, and I'm not selling anything. It was just a variety of new supplements that seemed to help ME. I think everyone is vastly different and you have to find what will work for YOU.

    That being said, I can feel myself slipping back into poor sleep patterns, the varieties of pain returning, and less energy. It could be because I've been lax taking the supps lately and I need to be more diligent or it could be that the seasons are changing and I've always been affected by that in the past. Either way, I know these 'good times' can end at anytime.

    Normally I wouldn't post on a thread that is so rapidly, and not surprisingly, deteriorating but since you asked, just wanted to let you know it is possible.

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