Sclero Forums Guidelines

[Shelley Ensz]

ISN ScleroForums Guidelines

 

This forum is a free service of the International Scleroderma Network (ISN) at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

This is a moderated forum. Our volunteer moderating team provides daily coverage, even on holidays. Sometimes it may take up to several hours for submitted messages to be approved. Read our profiles. We edit many messages to make them compliant or more readable. Users cannot edit their own messages after they are submitted, however they can delete them or they can email [email protected] and ask us to make the edits. Our usual approach is to modify messages to keep them within forum guidelines, but in certain cases we will prevent users from posting new forum messages. (See ISN Guide to Forum Banning)

 

Let's Share! We are a wonderful resource for general support and information for people who are interested in scleroderma or related illnesses, and who are good-natured, team-oriented and basically well-balanced. We share our hobbies, challenges, coping tips, questions, and support. Post to the list as often as you like,especially if it is to lend kindness or comfort to others.

 

Mainstream Scientific We focus on proven remedies and legitimate studies from mainstream scientific studies, as covered on our main www.sclero.org website. We avoid discussions of vitamin,herbal and alternative therapies that have not yet been proven to be of benefit for scleroderma (Read More). To avoid malicious codes, we only allow links that are from and within our www.sclero.org website or from any of the Top Notch medical sites listed on our Googling for a Diagnosis page.

 

Freedom of Speech means that you may say anything you want on your own website, and at your own legal risk, but not on ours. To protect our mission and our forum, we vigorously exercise our right to edit or delete submitted or posted messages, and to modify member privileges, without explanation. If you are referring to a negative encounter, please do not refer to people or clinics by name or identifying characteristics. We still might not post negative reports, perhaps because the issue should be addressed directly with the parties involved, through medical boards, or by legal means.

Freedom of Speech: (Legal.) Assisted Dying. We do not discuss this subject, as it is not legal in many countries.

 

Who We Are All volunteers and forum users are assumed to be non-medical professionals. Even when expertise is acknowledged or claimed, always consult your doctor for medical advice, as we are unable to give a diagnosis. We provide basic support and general information, but we are not doctors, counselors, psychiatrists, social workers, or legal, financial or disability advisors. We cannot provide any help for mental health issues (plus we also need to discourage internet trolls, who delight in throwing fake emotional fits), so we all handle mental health issues with our own medical team, apart from this forum.

 

Our Limits We have the ISN mission to uphold. Therefore this is not a suitable soapbox, sales prospect, personal fundraiser, suicide hotline, emergency assistant, recruiting ground, social worker, disability, financial or legal advisor, pulpit, or political platform for any of us. We discuss fund raising, awareness, support groups, and research news only when the topics are initiated by our appropriate ISN representatives.

 

Financial Aid Requests Every nonprofit agency in the U.S. has a different scope and mission, as defined and limited by the IRS. The nonprofit International Scleroderma Network is authorized to provide research, support, education and awareness for scleroderma and related illnesses. However, we are not authorized by the IRS to provide personal financial assistance for any reason, or to assist with amnesty or visas. We cannot make medical appointments, engage in political lobbying, assist with personal or class action lawsuits or disability claims, prescribe medications or treatments, import or export any medications or relief supplies, nor review personal medical records. Such needs are covered by other authorized nonprofit agencies, but each of them is necessarily limited in their scope and ability to help in a particular situation.

 

Nondiscrimination We welcome people of every age, color, country, disability, race, religion, sex, and sexual orientation. Many of us need to translate posts into other languages or Braille, so we try to use proper spelling and normal punctuation and grammar. We keep in mind that using all capital letters is considered to be "yelling" on the internet.

 

Neutral Zone Our mission requires language that is appropriate for all ages, cultures, beliefs, and countries. We avoid cursing, swearing, "instant messaging" abbreviations, and slang (since it can be misconstrued or offensive in other languages and cultures). When we wish to address the sexual issues that can be encountered with scleroderma, such erectile dysfunction, Peyronie’s, low sex drive, or vaginal dryness, we may refer to the problem, but should not go into explicit, personal details over it. When we are asking or answering questions on these subjects, we must respect our own and others' privacy, avoiding embarrassment to anyone. We convey our faith-based thoughts without directly or indirectly mentioning any specific deity, religion, dogma, scripture, religious occasion, or denomination (including satanic, cult, pagan, neopagan, atheistic, psychic, horoscope/astrology) by using generic terms instead. For example, these nonspecific faith-based words are fine to use instead: blessings, celebration, choir, clergy, clergyman, devotion, divine, faith, holiday, holy, meditation, religion, religious, religious leader, rituals, sacred, spirit,spiritual, spiritual leader, spiritual path, worship, and worship services. (Read more.)

 

Sales and Recruiting To minimize intrusive sales pitches, we only mention specific organizations, websites, products, brands or stores that are listed on our main www.sclero.org website. We use generic terms like "hand lotion" or "baby shampoo"or just bypass the topic altogether.

 

Graphics and Quotes Post your photos in the Pictures or Photo Gallery section. Avatars must be either from the selection we provide or from your own personal photos or artwork, and not from any other website, printed source or avatar collection. Consider our Safety and Privacy clause before posting identifiable photos and/or names. For copyright compliance, do not quote or copy anything other than that given on our main website at www.sclero.org. It is always okay to quote from and link to any pages of our main sclero.org website, so freely use that resource in your forum posts.

 

Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers, even many years later. We avoid personal indications of taking pain medication or other addictive medications so that we are not victimized by drug dealers or abusers (Read More). Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and user name, in keeping with our neutral zone policy. Spammers also frequent our board to harvest email addresses, so we do not permit email addresses within messages. Members will still be able to reach you privately by accessing your profile page.

[Shelley Ensz]

LIST OF APPROVED AND UNAPPROVED ALTERNATIVE THERAPIES FOR POSTING

SUPPLEMENTS **

You should always consult your physician before taking any supplements/herbs/or using natural remedies

Approved for Posting

Aloe Vera—Okay, but only when mentioned as hand cream or ointment.

Acidophilus—Fine. It is mentioned on our Bowel Involvement page. We mention that it may help scleroderma intestinal problems to use 1 to 2 tablespoons of yogurt with live cultures per day, every day -- provided people are not on immune suppressants, and have their doctor's approval. 

Arachidonic Acid—Okay to mention, but it is a catch-22 in that some arachidonic acid is vital for good health, but too much increases inflammation. Thus, discussions about it should be tempered with the message of “balance”.

Flaxseed oil capsules

Glucosamine—Helps make cartilage stronger and more rigid and there is some research that shows glucosamine supplements relieve pain in some people with osteoarthritis of the knee. Possible side effects include nausea,diarrhea, and increased blood sugar (people with GI problems or who are taking diuretics may especially experience problems with nausea and diarrhea. See Mayo Clinic: Glucosamine for more information).

Probiotics—Okay but cannot mention specific products or brands.

 

Slippery elm - Okay for heartburn and sore throats.

Not Approved for Posting

Aloe Vera—Not okay when promoted as a drink or "cure" for scleroderma.

Emu Oil—No studies yet support its usefulness in humans (2009). See Dr. Weil.

Papaya extract—Not allowed when promoted for scleroderma per se. It may be dangerous for pregnant women, may stimulate the immune system (which is often ill-advised with scleroderma), and can cause esophageal problems.

 

Protandim - See  Pursued by Prodandim Proselytizers.

VITAMINS

**No vitamin, herb or mineral should be promoted as a “cure” for scleroderma, nor can discussions of specific brand names or links to sites that sell herbal supplements be allowed.

All Vitamins Are Approved for Posting

Vitamin A—It is fat-soluble and can build up in fatty tissues if used to excess. Vitamin B6—Can cause nervous problems if used to excess.

Vitamin B12—Is often helpful for pernicious anemia (anemia is a possible complication of scleroderma).

Vitamin C—When taken with iron it can help the absorption of iron. Also, too much of C will just be excreted as will most of the B group.

Vitamin D—It is listed on our site, as Vitamin D deficiency may be a cause of scleroderma or other autoimmune diseases. (Also see: Causes of Scleroderma: Vitamin D Deficiency)

Vitamin E—Vitamin E can cause hypertension if taken in excess.


MINERALS

**Calcinosis is NOT caused by too much calcium in the diet. (Also see: Calcinosis)

Approved for Posting Calcium—Should not take calcium supplements within 4 hours of thyroid medication. Iron—Should only take this with doctor's permission or instruction, as iron accumulates in the system.

Magnesium—Can be useful for heartburn and constipation; is the main ingredient in Milk of Magnesia and many antacids.

Liquid Magnesium—Okay to mention, but without any brand name.

HERBS

**"Natural"does not mean that it is harmless or without side effects or interactions with other prescribed medications. Things that are healthy for healthy people are not necessarily healthy for someone with systemic scleroderma.

Approved for Posting (with cautions as noted)

Parsley—Can be a diuretic. However, prolonged use or abuse of any diuretics without medical supervision can lead to dehydration, which can cause kidney damage and an imbalance in normal levels of electrolytes (e.g., sodium and potassium), which are vital to heart, kidney and liver function.When electrolytes are out of balance, you’re at high risk for heart failure and sudden death. If you have a medical condition for which diuretics are prescribed, you would be much better off following your physician’s recommendation than trying to treat yourself with alternative remedies.

Gingko Biloba—Can help prevent Raynaud’s.

Ginseng—Ginseng is another famous tonic product. It comes from a species in the genus Panax, whose name comes from the same root as “panacea” meaning“all-heal." Used regularly, ginseng increases energy, vitality and sexual vigor, improves skin and muscle tone, and builds resistance to stress. Dr. Weil often recommends ginseng to chronically ill patients and to those who are debilitated or lacking in vitality. But he also says to make sure that no medication you're taking is contributing to high blood pressure. (Steroids, birth control pills, decongestants, NSAIDS and diet pills can raise blood pressure. So can over-the-counter medications containing licorice root, guaraná, kola nut, yerba maté, ginseng and yohimbe.) See Dr. Weil: Herbs for Hypertension. In general, these would not be recommended for systemic scleroderma patients since high blood pressure is a frequent complication of the disease.

Senna, is sometimes suggested for use as a laxative, HOWEVER, senna is an "irritant" laxative (seeConquering Constipation Naturally by Dr. Weil) and other methods of dealing with this problem should be considered first, especially the intake of ample water and fiber in the diet (not one without the other; too much water alone can cause diarrhea, too much fiber without water can cause constipation.) Senna side effects: If senna is used in high doses or for prolonged periods of time, it can lead to reduced potassium levels in the body. Low potassium levels can result in muscle weakness and potentially dangerous changes in heart rhythm. Chronic, long-term use of senna may also result in aching joints, weakened bones or muscles, and loss of weight due to decreased appetite. Cases of "clubbing" or rounding that occurs at the ends of the fingers have also been reported from taking senna for long periods of time.

Not Approved for Posting

Black Cohosh—Overall,the jury is still out on whether black cohosh reliably relieves menopausal symptoms (and, if so, how) as well as whether it may pose any long-term dangers. As far as side effects go, the herb may occasionally cause mild digestive distress. Studies in rats have not found any significant toxic effects at 90 times the therapeutic dosage over a six-month period, but studies have not looked at long-term effects in other animals or humans. Even if black cohosh relieves your hot flashes, there’s no good evidence to show it protects against the postmenopausal bone thinning that leads to osteoporosis as hormone replacement therapy does. See Is Black Cohosh Safe to Take? by Dr. Weil.

St. John’s Wort DGL/Licorice—Licorice contains a chemical called glycyrrhizic acid, which is responsible for many of the reported side effects (see below). DGL (deglycyrrhizinated licorice) has had the glycyrrhizic acid removed claims to reduce the dangers, but there are no definitive studies to back this up. Adverse effects include sodium and fluid retention, low potassium levels, and metabolic alkalosis, irregular heartbeats, heart attack, kidney damage,muscle weakness, or muscle breakdown. Licorice has been associated with acute pseudo-aldosteronism syndrome, paralysis, metabolic alkalosis and seizure. Licorice has been reported to cause high blood pressure, with symptoms such as headache, nausea, vomiting, and hypertensive encephalopathy with stroke-like effects (for example, one-sided weakness). High doses of licorice may cause temporary vision problems or loss. Ocular side effects have been reported. Central retinal vein occlusion has been associated with licorice. A case report exists of licorice-induced hypokalemia associated with dropped head syndrome(DHS).

Neem (any products where Neem is the primary active ingredient)—All of the research we could find has been done with animals only; no human research showed that it is efficacious.

OTHER NATURAL FOOD REMEDIES Not Approved for Posting

Quinine—Although it seems to be used frequently for leg cramps, recent studies have found some very serious sides effects ranging from blindness, pulmonary edema, and death. Here's a short statement from MedicineNet:“Quinine has been used outside of malaria as a remedy for fever and pain and to treat and prevent leg cramps. Prolonged administration of quinine may produce toxic symptoms such as deafness, disturbances in vision, skin rashes, and digestive upsets.”

Grapefruit Seed Oil—Do not post anything about using grapefruit seed oil on the message board at the present time. It is definitely NOT to ever be discussed as a cure for scleroderma and we are currently looking for more research to support its use as a digestive aid.

Caffeine, chocolate, peppermint or ginger can all exacerbate problems with heartburn or Raynaud’s for those with systemic scleroderma. Also, these things may never be discussed as a cure for scleroderma or associated ailments (e.g., ginger for migraines). (Also see: Raynaud's)


Approved for Posting

Manuka Honey—This is a rare exception to our “brand name” rule. Manuka honey is not just“regular” honey and there is research to indicate it may be useful for healing of skin ulcers.

Fish Oil—Useful for arthritis and reduces inflammation.

Green Tea—An article discussing its possible benefits in preventing autoimmune disease has been posted in the sclero.org news room: Green Tea

INTERNATIONAL CLAIMS OR CLAIMS FOR CURES

Approved for Posting

DMSO—OK when mentioned for Interstitial Cystitis as a treatment or cure; and with some disclaimers, for use for scleroderma; listed in our Clinical Trials section of the main ISN website

MSM—OK when mentioned as an anti-inflammatory; MSM is a form of DMSO (which see).

India—There is some scientific merit to the claims for Turmeric, Curcumin, and Curry.

Nonobacteria—We track this item on our Alternative Treatment Page on the website

Not Approved for Posting

Antibiotic “Cure” for Scleroderma—Disproved with major clinical trial; see our Clinical Trials page.

Chinese “Cures”—they haven’t cured scleroderma in China either; we have a link to read on our Alternative Treatment page.

Mexican “Cure”, “DNA Cure” Minocycline “Cure”—Disproved with major clinical trial; See our Clinical Trials pages.

MSM—Not OK if touted as a “cure” for scleroderma (only okay in context of an anti-inflammatory).

Roadback Foundation—David Trentham-Solely promotes the Antibiotic “Cure” which has been disproven with major clinical trial: See our Clinical Trials pages.

Low Dose Naltrexone—Is currently being touted as an effective treatment for all autoimmune diseases, but only has one phase II study to date and that was for Crohn's disease. Although it has received funding from NIH for a phase III study, it's still for Crohn's, so any mention of this treatment for scleroderma should be "unapproved" until more studies are done.

SPECIAL DIETS

**A well-balanced nutritious diet is important for people with systemic,unless doctor advises otherwise. See below for information for specific diets/foods that might be discussed. (Also see: Diet and Scleroderma)

Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications.Excessive use of alcohol and scleroderma really do not mix well at all. (Also see: Raynaud's)

Allergy Diets—Allergy diets help with allergies, but scleroderma is not caused by allergies.

Anti-inflammatory diet—There are some articles about it on the sclero.org website so okay to mention. Just remember that this diet has not been proven as a treatment or cure for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.

Atkins—A high-protein, no-carb diet, which can be dangerous for systemic scleroderma or anyone who is susceptible to kidney problems.

Caffeine/Coffee—Not advised if Raynaud’s or digital ulcers or heartburn are not under adequate control. (Also see: Raynaud's)


Dash Diet for Hypertension—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure”for scleroderma. It is possible, however that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.

Elimination Diets—Sometimes doctor advise for allergies or GI problems, but NOT a cure or treatment for scleroderma; however gluten may be a factor in causing or exacerbating scleroderma. See Celiac Disease and Gluten Sensitivity.

Gluten-Free Diet—There is evidence that gluten may play a significant role in causing or exacerbating symptoms of scleroderma in some people. See Celiac Disease and Gluten Sensitivity. People who are sensitive to gluten may also be sensitive to casein(milk and all milk by-products) and soy because they are very similar proteins. Gluten is found in wheat, barley, rye and all their by-products.

Liquid Diets—Are sometimes necessary with severe GI involvement in scleroderma. Even recipes are okay in this regard. Fasting—Very dangerous with systemic scleroderma, attempt only with a doctor’s supervision.

Jenny Craig—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion.

Mediterranean Diet—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure”for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.

Milk/Dairy/Casein Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk andall milk by-products) and soy because they are very similar proteins.See Gluten-Free Diet, above.

Peppermint—Can induce heartburn in some people by relaxing the lower esophageal sphincter (LES).

Pop/Soda/Soft Drinks with Caffeine—Not advised if Raynaud's or digital ulcers or heartburn are not under adequate control. Brands with lots of caffeine like Mountain Dew can be major causes of Raynaud's from the combination of the cold can and the caffeine jolt. Some of us can tolerate caffeinated coffee but not pops.

High Protein Diets—Can be dangerous for systemic scleroderma or anyone else susceptible to kidney problems.

Raw Foods Diets—Can disrupt G.I. function in systemic scleroderma.

South Beach—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion

Soy Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk and all milk by-products) and soy because they are very similar proteins.See Gluten, above.

TPN—Stands for Total Parenteral Nutrition,or tubal feeding. This is often necessary in end-stage GI involvement and discussion about it is entirely allowed.

Tubal Feeding—This is often necessary in end-stage GI involvement and discussion about it is entirely allowed.

Vegetarian—Vegetarianism does not “cure” scleroderma and should be attempted only with doctors guidance to make sure essential nutrients are included. It’s okay to mention being a vegetarian, but not to promote vegetarianism as a cure for scleroderma.

Weight Watchers—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion.

Whole Foods Diets—Usually well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion.

DRUGS

Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications. Excessive use of alcohol and scleroderma really do not mix well at all. (Also see: Raynaud's)

Cocaine—This can literally cause scleroderma.Our link to the study went bad on the site, but just FYI, it can cause systemic scleroderma. Can be discussed, but only within the context of being a known cause of scleroderma.

Marijuana—It is illegal in the US, so we do not discuss even medical use of marijuana or the ongoing debate about it. Nicotine—Definitely not good for systemic scleroderma, not good for health in general. OK to discuss when used in context of not healthy or about people who want to quit or have quit. Brand names of cigarettes are not okay. An ingredient in cigarettes is suspected of being beneficial to scleroderma so news articles about potential clinical trials for it are also okay; but this topic is allowed to come forth only through our newsroom articles.

Pain Medications—Okay when used generically but not okay when mention specific drugs such as "pain medication"or "Oxycontin" etc. (edit to be just "pain medication") and such,because some drug users haunt message boards trying to look for sources they can burglarize or con out of drugs.

EXERCISE

**Everyone should check with the doctor before beginning a new exercise program,due to considerations such as heart, lung or muscle involvement (this includes Tai Chi, Yoga, Qigong, etc.).

THERAPIES

**We do not promote any certain clinics or doctors for alternative therapies. It is one thing to have your back feel better after chiropractic adjustments; another to say all your scleroderma symptoms have gone in remission due to chiropractic treatment.

Approved for Posting

Acupuncture—OK for symptoms, but it is not a treatment or “cure” for scleroderma. Do not mention doctor’s name or clinic.

Ariculotherapy—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic.

Chiropractic—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic.

Not Approved for Posting

Chelation Therapy—Not approved for posting. Chelation therapy is not proven to be a treatment for scleroderma, and has been known to cause death. Also see: How the "Urine Toxic Metals" Test is Used to Defraud Patients on Quackwatch.org.

Colonic washouts—Could cause perforation in SD patients, so should only be done under the advice of a medical doctor, preferably proctologist, if things are that bad.

Compression Gloves - Not yet proven to be beneficial for Raynaud's or Scleroderma. In addition, avoid wearing tight wristbands, rings or footwear that compress blood vessels in your hands or feet. Link here to Cedars-Sinai for more information.

Copper (bracelets, etc.)

Crystals, Quartz Infrared therapy/Anodyne (pain relief) system—There is currently no manufacturer or brand of infrared therapy or anodyne(pain relief) system on the market with an FDA approval specifically to treat neuropathy. Anyone may claim a patent to treat neuropathy or other conditions, but a patent has nothing to do with FDA classification.

 

Essential oils regimen for Scleroderma. Although they're widely used, we don't include them on the forums as there appears to be no evidence to that they are beneficial to Scleroderma sufferers. See link to Anti-Arthritic Effects and Toxicity of Essential Oils of Tumeric (curcuma longa l)
 

Magnetic beds, bracelets, shoes, etc.

Naturopaths—Naturopaths are only licensed in a few states so we do not mention them on the forums.

Ozone and O3 therapy.- This is a quack treatment (Read more) which should never be discussed on the forum.

Shaman Healing—Not OK for posting as it is specific to a certain belief system and we avoid all mention/discussion of specific belief systems (can discuss our faith and beliefs in general terms only). Other Alternative Treatments approved for posting:

Banana Peel Treatment for Calcinosis: There are no scientific studies to support this. However banana peels are commonly used for household remedies such as removing warts and splinters. If your doctor agrees, you could try cutting a square of banana peel on the calcium deposit each night, yellow side out (away from the skin), and adhering it with a bandage. Use a new piece of peel every day for two weeks. If you try this experiment, please take photos, before, during and after. Whether it works or not, we’d love to hear your experience. Send an email about it to [email protected]org with the subject line “Banana Peels and Calcinosis”. (Also see: Calcinosis)

[Shelley Ensz]

Hi Fellow Forum Members,

 

Time for a thrilling episode of ISN Quick Bytes. These short posts are intended to clarify important points and serve as a helpful reminder.They may also help you to understand why certain things have been edited or even deleted in their entirety.

 

This first series deals with the Forum Guidelines (which, of course, you read and set to memory when you joined the Forums). The guidelines are always only a click away at the left of the blue toolbar at the top of every Forum page.

 

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN)at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support,education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

Sales and Recruiting To minimize intrusive sales pitches, we only mention specific organizations, websites, products, brands or stores that are listed onour main www.sclero.org website. We use generic terms like "hand lotion" or "baby shampoo" or just bypass the topic altogether.

 

Hah! This is a goody. Just imagine this posting:

 

"Hi 'Itching in Minnesota', I'm really sorry you're so itchy. I know just the thing that will help, though. Have you tried ItchNoMore from Snake Oil Medications? It's great stuff. I know it seems expensive, but if you send me an email, I'll send you the link where you can get a good discount if you order 10 or more tubs and they even give you free shipping. I love it and use it all the time on me, the hubby, and the dog. It's so great we even changed the dog's name from Scratch to Spot. Big hugs, Ima Salesman"

 

Oh my~ Let's see, Ima's given you a brand name, a company name, and has tried to hook you into emailing her. The stuff sounds like it might work, so you break the kids' piggy banks and order the 10 tubs (after all you get free shipping, how can you go wrong?). A month has gone by and the only thing that you've gotten is a LOT of spam! Hmmm, Ima's email address doesn't work any more and the website is gone, gone, gone. You do a web search just in case they have a new site and hey, the only hit is an article saying Snake Oil Medications is being investigated by every government agency except the Federal Aviation Administration. :angry:

 

So, so sorry Ima, your post got deleted by the Forum's ever vigilant moderators!

 

Or how about this one?

 

But surely mentioning the brand name of my shoes or over-the-counter antacid isn't hurting anything -- it's obvious I'm not trying to sell anything.

 

Well, you see, naming the brands implies the site's endorsement of a particular brand, which may or may not be better than a similar brand or generic product. Also, that could open the door to every manufacturer in the world wanting an endorsement too. Wouldn't you really rather have an advertisement free Forum? It is OK to mention specific products when they are included in site articles such as Biotene products in the section on Scleroderma Dental Involvement.

 

 

Best wishes and happy posting,

 

Jeannie McClelland

[Shelley Ensz]

Hi Fellow Forum Members,

 

Time for another thrilling episode of ISN Quick Bytes. These short posts are intended to clarify important points and serve as a helpful reminder. They may also help you to understand why certain things have been edited or even deleted in their entirety.

 

This first series deals with the Forum Guidelines (which, of course, you read and set to memory when you joined the Forums). The guidelines are always only a click away at the left of the blue toolbar at the top of every Forum page.

 

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN)at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

Neutral Zone Our mission requires language that is appropriate for all ages, cultures, beliefs, and countries. We avoid cursing, swearing, "instant messaging" abbreviations, and slang (since it can be misconstrued or offensive in other languages and cultures). We convey our faith-based thoughts without directly or indirectly mentioning any specific deity, religion, dogma, scripture, religious occasion, or denomination (including satanic, cult, pagan, neopagan, atheistic, psychic,horoscope/astrology) by using generic terms instead, such as blessings, celebration, choir, clergy, clergyman, devotion, divine, faith, holiday, holy, meditation, religion, religious, religious leader, rituals, sacred, spirit, spiritual, spiritual leader, spiritual path, worship, and worship services. (Read more.)

 

Sorry, Forum Friends, if you were expecting something funny, you aren't going to find much in this Quick Byte.

 

Wars have been fought in defence of belief systems and ideology and continue to be to this very day. The forums will always be a place where we can comfortably discuss how chronic illness affects our lives.

 

On the subject of cursing, swearing, all sorts of abbreviations, and slang - well, slang can get pretty funny. How many of you would know what I meant if I said I was "right chuffed with my new G.P., ayup"? Hand's down, all you folks from Great Britain, you'll have heard my particular dialect and have an unfair advantage. For everyone else, what I said was "I am very happy with my new doctor, yes, I am."

 

Cursing and swearing are out too. For many of us, it is so much a part of our language, we don'teven realize it until the bad words filter substitutes ****** or ##### in the text box. Some of the more seemingly benign swear words are actually substitutes for religious epithets, and so hit two neutral zone points in one blow. Some words may be swear words in one context but perfectly usable in another. When in doubt, we leave it out. There are many better ways to make a point. (We have a nice selection of emoticons (clickable smilies) which are quite expressive.

 

Also, there is zero tolerance for cursing or swearing at anyone with any words.

 

Instant messaging abbreviations. I hear you asking "what's wrong with abbreviations?" Ever tried to read either a legal document or one in anotherforeign language that's riddled with abbreviations? The same unfortunately goes for text message abbreviations. A curious member could spend hours wondering why her rheumatologist didn't order a CSL (can't stop laughing) and AYK (as you know) test.

 

NB*: We are working on a glossary of medical abbreviations which should be available very soon.

 

*NB (an abbreviation for noto bene, meaning "note well"), not NB (not bad) nor NB (niu bi, a Chinese expression similar to "you the man")

 

Best wishes and happy posting,

 

Jeannie McClelland

[Shelley Ensz]

Hi Fellow Forum Members,

 

Time for another thrilling episode of ISN Quick Bytes. These short posts are intended to clarify important points and serve as a helpful reminder. They may also help you to understand why certain things have been edited or even deleted in their entirety.

 

This first series deals with the Forum Guidelines (which, of course, you read and set to memory when you joined the Forums). The guidelines are always only a click away at the left of the blue toolbar at the top of every Forum page.

 

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN) at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

This Guidelines Quick Byte is about how free (or not) Freedom of Speech can be.

 

Freedom of Speech means that you may say anything you want on your own website, and at your own legal risk, but not on ours. To protect our mission and our forum, we vigorously exercise our right to edit or delete submitted or posted messages, and to modify member privileges, without explanation. If you are referring to a negative encounter, please do not refer to people or clinics by name or identifying characteristics. We still might not post negative reports, perhaps because the issue should be addressed directly with the parties involved, through medical boards, or by legal means.

 

So what does this mean to us? Well, try this for example:

 

Iwant to tell you about my awful ex- doctor. Dr. Woefully Ignorant, MD,of Careless Clinics, is dumber than a box of rocks, got his degree from one of the Big Box Stores, and shouldn’t be allowed to treat a hangnail. He completely misdiagnosed me, caused me grievous bodily harm, and at the urging of my lawyer Simon Shyster of Ambulance Chasers, Ltd., I am instituting a fully justified malpractice lawsuit!

 

Oh no!! The Mean Moderator deleted it. Everybody should know about horrible Dr. Ignorant. What was wrong with it? Let me count the ways:

 

• I gave the doctor’s and clinic’s names.

• I made unsupported statements in a public forum.

• I made a blatant plug for a particular lawyer and law firm.

 

Worst of all, if it had been posted on the forum, the Mean Moderator and I would have just set up our beloved International Scleroderma Network for legal action on the basis of libel.

 

Best wishes and happy posting,

 

Jeannie McClelland

[Shelley Ensz]

Hi Fellow Forum Members,

 

Time for another thrilling episode of ISN Quick Bytes.These short posts are intended to clarify important points and serve as a helpful reminder. They may also help you to understand why certain things have been edited or even deleted in their entirety.

 

This first series deals with the Forum Guidelines (which, of course, you read and set to memory when you joined theForums). The guidelines are always only a click away at the left of the blue toolbar at the top of every Forum page.

 

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN) at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

This Guidelines Quick Byte is about who we are and if you sometimes are like me and wonder just who you are, it'll help you to know that too.

 

Who We Are All volunteers and forum users are assumed to be non-medical professionals. Even when expertise is acknowledged or claimed, always consult your doctor for medical advice. We provide basic support and general information, but we are not doctors, counselors, psychiatrists, social workers, or legal, financial or disability advisors.

 

Ah, but I am a doctor. I have a Ph.D., ABD.

 

I am not familiar with the ABD degree.

 

Of course everyone knows ABD means All But the Dissertation. But I did most of the coursework.

 

And what is your field of expertise?

 

Ah, um, well, horticulture. But that doesn't matter! I've read just about everything on the internet about scleroderma and I know what I'm talking about. You'll save yourself a lot of time and money taking my advice instead of wasting it at your doctor's who isn't all that sympathetic to your problem anyhow.

 

Do I hear everyone saying "Hey, I know where she's going with this! It'sthose silly disclaimers, isn't it?" Well, you are right. This is a demonstration of why we put them in. Anybody can claim to be anyone, but even if the claims might be true, they should be posted with appropriate references and disclaimers.

 

Even those of us who have been vetted (screened) through the volunteer process with the International Scleroderma Network must support our own statements with appropriate references and disclaimers.

 

We can't approve posts that imply special knowledge, offer a diagnosis or suggest a treatment (no matter what the claims of professional standing, however insightful and helpful the posts may seem to be) without editing in a disclaimerand the just-plain-common-sense advice to check first with your own doctor.

 

Best wishes and happy posting,

 

Jeannie McClelland

[Shelley Ensz]

Hi Fellow Forum Members,

 

I’d like to introduce a new feature to help us all make the most of our forum experience: ISN Quick Bytes.These short posts are intended to clarify important points and serve as a helpful reminder. They may also help you to understand why certain things have been edited or even deleted in entirety.

 

The first series will deal with the Forum Guidelines (which, of course, you read and set to memory when you joined the Forums). The guidelines are always only a click away at the left of the blue toolbar at the top of every Forum page.

 

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN) at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

 

Today’s Guidelines Quick Byte is Mainstream Scientific:

 

Mainstream Scientific We focus on proven remedies and legitimate studies from mainstream scientific studies, as covered on our main www.sclero.org website. We avoid discussions of vitamin, herbal and alternative therapies that have not yet been proven to be of benefit for scleroderma (Read More). To avoid malicious codes, we only allow links that are from and within our www.sclero.org website or from any of the Top Notch medical sites listed on our Googling for a Diagnosis page.

 

Many alternative therapies have been reviewed and discussed on the website pages linked above. The (Read More) link above leads to our list of Approved and Unapproved AlternativeTherapies in the How To Forum. Our support staff uses this list when approving messages and will edit out mention of unapproved items.

 

Accessing certain sites can cause possible damage to your computer. Because of that, we only allow links in member posts that are already linked to the www.sclero.org site. If you have a valuable resource to share, please send a PM to Jo Frowde our ISN News Manager.

 

Please bear in mind that we try to have the most current, most reliable information anywhere it might appear on the International Scleroderma Site and that includes all the Forums. As much as I think my grandmother’s recipe for wilted dandelion greens with hot bacon dressing will cure most of man’s ills, it’s not current, proven, or even studied beyond those members of my family who’ve been forced to eat this springtime delight.

 

Best wishes and happy posting,

 

Jeannie McClelland

[Shelley Ensz]

Our Forum Guidelines require that we not mention any narcotic pain relievers. The purpose of the guideline is to avoid mention of drugs that are sought by drug addicts, and pain medication (as well as narcotic-like substances, e.g., pain medication) often fall into that realm. Some drug abusers frequent message boards like ours trying to find members who are on "good" drugs so that they can befriend them and perhaps make an interesting purchase or a surprise burglary. So we just skip around the topic by discussing pain medication in generic terms only.

 

We no longer allow medication lists in forum signatures, as it is both a privacy and safety issue.

[Shelley Ensz]

Rationale for Forum Guidelines

 

Yes, our guidelines are strict, no doubt about it, so all members should read them before joining, or certainly before trying to post a message. They are at: Guidelines  

 

Our goal is to be a suitable place for people worldwide to find top notch scleroderma support and information. We have legal obligations as an international nonprofit to be nondiscriminatory. It is not discrimination if policies are broad and all-encompassing; it is discrimination if a policy gives preference to any certain group of people. People of every persuasion in the world can get scleroderma and our members encompass all religions, politics, and countries. Therefore, we have to always remain focused on what we have most in common, and not on what separates us.

 

We are not the word police; we are forum administrators for an international nonprofit agency. We are not a private site that can have free-for-all conversations, and we never will be, because we have legal obligations under our specific IRS nonprofit charter and Articles of Incorporation.

 

Our guidelines are intended to help keep us on topic, within the very specific limits of our mission and abilities.

[Shelley Ensz]

Just a reminder for us to focus on non-specific faith-based words for the holidays. Such as, Season's Greetings!

 

Happy Holidays to everyone, this winter!

:emoticons-yes: :terrific: :happy-day:

[jettech]

I realise that you are able to mention accupuncture but are you able to mention acupressure which is acupuncture without the use of needles and instead uses light pressure to locations where needles could be placed?

[Joelf]

Hi Jettech,

 

Welcome to these forums!

 

We do have a page on Alternative therapies for Rheumatoid Arthritis which includes acupressure. We only mention alternative treatments on the forums that have been clinically proven to be of benefit and I'm afraid that we don't include the names of specific people who administer these treatments.

 

Do post again and let us get to know you.

 

Kind regards,

[Shelley Ensz]

I just modified our Mainstream Scientific guideline to read, "To avoid malicious codes, we only allow links that are from and within our www.sclero.org website or from any of the Top Notch medical sites listed on our Googling for a Diagnosis page."

 

The prior version (from 2009) read, "To avoid malicious codes, we only allow links that are from and within our www.sclero.org website" but in reality, we do allow safe links to high quality, recent information on top quality mainstream medical web sites, namely, the ones listed on our Googling for a Diagnosis page. 

 

Our general rule of thumb is that we like to stick to medical abstracts that were published within the past three years, whenever possible, and especially when it comes to medications. For some rare or obtuse topics, we realize that just isn't feasible.

 

Thank you for helping us make and keep Sclero Forums a thriving and responsible resource for people, all around the world!

[Sweet]

Just took the time re-read all this valuable information. Thanks, Shelley, for being so detailed.