One Sick Mother

Consider The Source -Revisited

I wrote a fun post entitled "Consider the Source" before. But this time I want to talk about a more serious topic, which is becoming more important in the blogging world.  I probably should have entitled this piece "Consider the Motive" and it would have worked, but I like to go with my first instinct for a title.

Every now and again, I am approached by someone who wants to talk about a "great new product" or a "great new service"  Usually, when I pull back the covers and investigate a little (because I investigate everything), it will turn out to be a false person endorsing Syrotab or some other scam.

Even if it is a legitimate product or service; e-mail or posts of this nature, -which are essentially solicitations- leave me feeling a bit skeevy. I always wonder at the people who will try to drum up free advertising for their product over the blogosphere.  Especially if they are mining the Autism or disability community to do it.

I got an e-mail yesterday today from someone; -we'll call her "Tiffany"-  who "thought this new Autism website would be of interest to you and your readers" and then included a very professional press release about it.

A press release.  Noooo thankyouverymuch.  OSM does not advertise. So I ignored the e-mail.

Tiffany does not like to be ignored, apparently.

This morning, I get a e-mail from her asking me if I was going to write a post about the "great new website". I told her OSM does not advertise. I thought that was the end of it. But nooo. Tiffany is tenacious  "We are not hoping for an advertisement. I just know that you blog about Autism, and this new service may be of interest to your readers". 

Um. OK. What is that, then if it is not an advertisement? Apart from the 'getting paid' part, of course? Oh wait... It's an endorsement (but still without the 'getting paid' piece). Silly me! It could also be called a mention, a plug or just plain old PR.  It is basically a way to get the fledgling (wannabe) brandname out there to a targeted audience.

Well, as Tiffany the Tenacious wasn't leaving me alone; I got curious. Usually when I say no, people go away. But she kept coming back. I decided to check out the "great new Autism Website", thinking that maybe they were an new, eager non-profit agency running on a tight budget and that Tiffany was perhaps a zealous volunteer or an intern. The site is slick and professional. No telltale 501(c)(3) notice anywhere. They are a for-profit organization. And they want your credit card information. The "great new service" that Tiffany was so gung-ho about is not provided for free, or even on a sliding scale for the needy. It will cost the average Joe (SickMother) $100 per month.  And yet here they are: contacting this Sick Mother in the hope that she will give them free advertising, or maybe spend $100 per month of her disability check on their (untested, unstudied, unproven) "great new service".

Niiiiice

And Tiffany is not a volunteer. She works for a New York City Public Relations agency.

Let me spell it out: This for-profit "Autism" agency is paying a New York PR agency to drum up free endorsements from Autism bloggers.  And that is not the end of it. The data of which bloggers take the bait, and how they 'perform' will be then saved, analyzed, measured and matrixed; and maybe the list of 'high-performing' blogs/bloggers will be re-used and/or sold to other for-profit firms, who wish to break into the Autism vertical.  Because let's face it guys: As I myself have pointed out, Autism is a growing market.

I know I am cynical, but this is how it works, people.

I don't know how many other bloggers have been contact by "Tiffany" and her ilk, but I am sending a warning out there to anyone who has been contacted about a "great new Autism website" to consider the source. And the motive. You may choose to give them a plug if you think the product looks good, (and I don't blame anyone who does), but I personally have a hard time with PR people being paid to trawl  the Internet, looking for bloggers to exploit.

For all bloggers: Here is a one-minute guide on how to spot a professional who may be looking to exploit you:

• Including a press release is a dead giveaway
• So is follow-up: "I was just wondering if..."  or my favorite: "I just wanted to touch base..."
• If the company/site that they are trying to sell is an US company, check their site to see if it says anywhere that is is a 501(c)(3) corporation, which signifies a not-for-profit.  Most NFP corporations state so clearly.
• Check the domain name on the e-mail address of the sender (the part after the @). Go to whateveritis.com and research *that* company. You will know pretty quickly if that company is a marketing or PR agency. If it is, ...well, proceed at your own discretion (but don't say I didn't warn you!).

So there you are, Tiffany.  You got me to write a post in the end. It may not be exactly what you wanted, but all advertising is good advertising, right? 

Or maybe; -as King Midas found out, you should be careful what you wish for.

Oh!  and put me on your "do not call" list.

K? Thx

Buh-bye.

That Good Night

Remember my old cat that was sick in November?  If you don't, most of that story is here and here.

Well, last week, I had to have her put her to sleep (HA! what a misnomer!).

I had written a huge long post about it, but the Typepad gremlins ate it. It is too painful to re-write, so suffice to say this:

Dylan Thomas would have been proud of my little cat. She did not go gentle into that good night. That Good Night came and got her, leaving her staring, melted and lifeless on a furry-blankie covered vet's table, the last words she didn't hear probably still echoing in her little ears:

My voice: "it's OK".

No. It wasn't.

(why did I lie?)

Oh the Guilt...

Oslo Health Solutions: Preying On The Sick Part III

I'm kind of sick talking about these people by now, to be honest with you. I have devoted hours and hours of rather nauseating research to Oslo Health Solutions and their claims. There are many, many more hours of work that could be done; -just on the Internet alone, before one starts on private and other channels, but I don't have the resources for it, financially,  physically or spiritually.

But there are two areas I do want to explore:  How people like this might think, because it seems to me,  their thought processes are very different than us trusting honest normal people. Maybe getting into their brains a little will help us to beware of others of their ilk.

And I also want to let you know how you can fight back; against people like this in general and against Oslo Health Solutions (OHS) in particular.  Because let's face it: Oslo Health Solutions run a pretty despicable operation and they need to be stopped.  Now.

So how do they think they can get away with it?  I have thought about this and I think I figured out a few um ....principles for Internet fraud.

1. Lie Big:
   It is a concept con-men have down cold, but one that most decent people can't get their heads around:  If you are going to lie to people: Lie big. Don't bend or massage the truth.  People are expecting that. Most normal people lie small, They exaggerate or use words like "almost" or "virtual".  But the truth is usually somewhere underneath. People expect this and watch out for exaggerations and small lies. People generally don't expect a lie to be totally bald-faced and to have no relation to the truth. Therefore we see the grandiose claims OHS make and we expect there is some truth to them. This is why OHS were so smart in their pitch. They understood this and therefore they sold so high, but delivered so low, they seem to have flown right underneath most radars.  
    
2. Divide and Conquer: 
   People with specific illnesses don't generally go looking for herbal treatments for other illnesses, so if one product was exposed as a fraud, then it is just that one out of ...what?  ...about 60 now that I have found?... I figure OHS simply dump the product that was exposed, find a new disease, re-brand the website and labels as "new disease-Tab" and then carry on selling the exact same product to a different market.
   
   I guess OHS didn't expect anyone to search on more than one or two of the diseases they cover. The must have figured that chances that someone would work out that they are selling  the same list of ingredients as  a completely guaranteed and clinically proven herbal treatment for up to nineteen (19) different conditions, from teething troubles to Multiple System Atrophy (MSA), which is generally fatal within two years of diagnosis (Elizabeth at Screw Bronze! has MSA. Read her blog if you want some graphic descriptions of what it does to one .... and   -Quick! give her some shallots and Red Earth!  That'll be bound to cure her...)
   
   
3. Avoid well-organized groups:
   There is No MS-Tab, no Breast Cancer-Tab, no Autism or Aspie-Tab, no Alzheimer's-Tab and I think there is a very good reason for this. It is probably the same reason Cardio-tab no longer exists:  These conditions are highly public and have well-populated organizations and lots of support groups surrounding them, the jig would be up pretty quickly with most of these conditions. -I was actually surprised to find MD-tab, Leukotab and Parkotab, as they are also quite well organized too.  
    
4. Use the Global Market to confuse your  umm... "customers":
   If you set up shop based out of a small, little understood country in Scandinavia, then ship your product from Pakistan, most normal sick people won't be able to figure out how to take action against you from halfway around the world... 
   
   But keep reading.  I have found a fair bit of information on this.

I have two imaginary scenarios for who could be behind Oslo Health Solutions:  In the first one, it is a couple of teenagers, now young men, who started it as little more than a lark out of someone's bedroom, not fully comprehending the real lives that could be effected behind the illness they researched on-line to create new markets for a Pakistani Hemorrhoid preparation.

It the other scenario, it was started very deliberately by adults who have no regard for others, knew exactly what they were doing and are in this game to make money, not caring at all who gets hurt in the process.

Regardless, it is wrong.

Several people asked me, both in comments and through other channels, if we could inform the FDA about this. I don't think the FDA has any interest, as natural remedies and herbal supplements are not very regulated here in the US. However, they might be interested to investigate if they thought Americans were being sold Strychnine as a supposed cure for Parkinson's disease.   I will look into this.

However, FDA aside (for now), the Norwegian government DOES regulate (and tax!) natural remedies. It falls under the jurisdiction of the Norwegian Medicines Agency, and they have an English version of their website, and of their contacts page (how cool is that?), complete with e-mail addresses, so you can send the links directly. I love Scandinavian efficiency!

Now, I suspect that Oslo Health Solutions are trying to get around some of the European laws and regulations governing sales of herbal remedies as well as false advertising laws by manufacturing and shipping their product from Pakistan. 

However, Pakistan now has the Electronic Transaction Ordinance (2002) which protect consumers in electronic commercial transactions, such as buying poison from Pakistan. More interestingly, there is the 2007 Electronic Crime Ordinance which has this interesting clause, potentially punishable by death:

17. Cyber terrorism. -

a. Any person, group or organization who, with terroristic intent utilizes, accesses or causes to be accessed a computer or computer network or electronic system or electronic device or by any available means, and thereby knowingly engages in or attempts to engage in a terroristic act commits the offence of cyber terrorism.

Explanation1: For the purposes of this section the expression “terroristic intent” means to act with the purpose to alarm, frighten, disrupt, harm, damage, or carry out an act of violence against any segment of the population, the Government or entity associated therewith...."

Do you think that selling Strychnine to Parkinson's patients over the Internet could be interpreted as "Intent to harm, damage or carry an act of violence against a segment of the population..." (what we in America would call a hate crime)?  I think it could be.  

Interesting stuff, eh? 

Now: Of the sites I investigated (and I have to admit that a few, such as Inisitab, and Abdotab were late additions to the party) the vast majority claimed to be run our of Norway, from this address:

Oslo Health Solutions

Oslo Health Solutions
Suite 329
Youngstorget
NO-0028 Olso
Norway

There are a few exceptions, Some had no address whatsoever, but when you click on the "order now" , button, it comes up as Oslo Health Solutions. These included Raynotab, Guillatab, Clearotab,

...and a few products seemed to be run out of the UK, from corporations (...or are they? "Inc" is not a UK corporation suffix  "Ltd" or "plc" are the norm over there.  ...Hmmmm.)  supposedly operating over there.  Note the addresses are all exactly the same.

Vertigo Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Anemia Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Psoriasis Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Vitiligo Tab was the one which had buried its tracks particularly well. No address, no telltale "Oslo Health Solutions" banner on the order form. The Web site was registered to a "Charls Dickens" (sic)  of

Berkeley Square House,
W1J 6BD
London,  W1J 6BD
United Kingdom

In the UK, companies making false claims over the Internet are regulated by  The Trading Standards Institute.  Vitigilo tab is claiming that "Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo" (my emphasis). Psoriasis Tab and Vertigo Tab also claim a "100% cure", whereas Anemia Tab claims a "completely guaranteed and clinically proven herbal treatment for Anemia".  Are these false claims?  I dunno, but I think they should be investigated by the appropriate parties.

So what you do is this: You go to their site and enter the postcode

for the guys against whom you wish to complain, which is KT2 6LX  or W1J 6BD (for Charls Dickens) and you follow the instructions from there.

Little people can fight back, you know. We just need to get the right muscle on our side.

Oslo Health Solutions: Preying On The Sick Part II

This is Part II of my little exploration of a unscrupulous company who takes advantage of sick people by selling them herbal remedies under false pretenses. In part I, I told you about the products sold by Oslo Health Solutions, which is by far the worst offender out there that I have found. In Part II, I am sticking with Oslo Health Solutions, and concentrating on the ingredients they claim are beneficial for a very wide variety of serious ailments. I am uncovering new and interesting information every day, none of it good.

 I promised you an analysis of the formulations that Oslo Health Solutions (OHS) purport to use for the various ailments that they purport to treat.  I performed this exercise a couple of years ago on the Syrotab formulation, what I am now calling "Formulation 1" herein, as it is touted not only for the "guaranteed treatment of Syringomelia" (a condition which cause hideous pain, disablement and eventual death), but as a "guaranteed treatment" for several conditions, including Post-Polio syndrome (potentially crippling), Osteomyelitis (potentially fatal) , Peripheral Neuropathy (often treatable if the underlying cause is located) and Muscular Dystrophy (both crippling AND fatal).  My little analysis at the time was done for fun, and it was amusing-if-a-little-scary then. Looking back and knowing what  I now know, Formulation 1

The main ingredients are listed as

Magnesium Murakab
Zinc Murakab
Berberis aristate
Ext Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

LETS BREAK THIS DOWN, SHALL WE?

Magnesium Murakab, Zinc Murakab
I could not find any information on these specific formulations of magnesium and zinc. So I looked up the work “Murakab”:

It is an Islamic concept meaning “complex ignorance” See the following explanation:

The classical ulama of Islam divided ignorance into two parts; namely; simple (basiit) ignorance and complex (murakab) ignorance. In simple ignorance one knows that one does not know whereas in complex ignorance one does not know that one does not know. Often people who do not have book knowledge, i.e., those who did not have the chance to study at universities are characterized by simple ignorance. This type of ignorance is not as deadly as complex ignorance since one does not have the arrogance and the pride that often accompanies the thought of considering oneself ’educated’.

Hmmm. Something smelled bad. So I kept looking down the ingredients list:

Berberis aristate Ext: OK this is actually something, though misspelled.  It is extract from the plant Berberis Aristata, English name Tree Tumeric, the root of which has antibiotic and anti-inflammatory properties. (To my eyes, They will need all the anti-inflammatory properties they can get to counterbalance that "Murakab" jab.)

Egg Shell Calcium (quoi? I know eggshells won't do any harm if ground up finely, but I don't think the type of calcium found in eggshells is can be absorbed by humans)

Sulphur:  (in what form? and some people are allergic to sulphur -where's the warning?)

Substituted olive Oil: Substituted for what? Or more interestingly; what was substituted for olive oil?

My summary at the time:

Should I ever get the urge to sprinkle my breakfast eggs with tree tumeric, sulphur and complex ignorance, then eat them shells and all, I will let you guys know how I get on. In the meantime,. I think that anyone with Syringomyelia or other conditions should save their money to apply to real medical expenses.

("Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be "possible for us to make such a bold claim")

Formulation 2:

The main ingredients, according to Oslo Health Solutions are:

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

These ingredients, presumably in different combinations (if one is to be kind) are "guaranteed" by OHS to treat the following

Muscular Fasciculation

Kugelberg Welander Syndrome 

Pseudotumor Cerebri

Ascites

Myelodysplastic Syndromes

Teething Troubles (Yes. They say you should give it to babies!)

Spasmodic Torticollis

Enlarged Tonsils

Arachnoid Cysts

Multiple System Atrophy

Ameloblastoma

Wiskott Aldrich Syndrome

Horner's Syndrome

Chordoma

Benign Essential Tremor

Myelodysplastic Syndromes

Benign Essential Blepharospasm

Cronkhite-Canada Syndrome

Megaloblastic Anemia

Really.

So I did a little research on each of these ingredients:

Berberis aristata D.C Ext.: Here again is our friend the Tree turmeric, spelled correctly this time.

Melia Azadirachta Linn Seed: Azadirachata Indica is an evergreen tree native to India and the region. It is used for medicinal purposes: The bark is used for fever, nausea and skin diseases. The leaves are used for skin diseases -but applied topically.

I couldn't figure out what the seed oil (I presume this is what Linn Seed means) is used for specifically.

Raphanus satirus Linn: I think this might actually refer to Raphanus Sativus Linn, which is the Chinese radish. Its seeds are used for natural medicine in diuretics and laxatives and also to help naso-pharyngeal affections and stomach troubles

Melia azadirachta Bark: Bark from the Azadirachata Indica tree as mentioned previously. The bark is used for fever, nausea and skin diseases.

Red Earth: Um. I think as the description suggests, this is earth (dirt) that is red, from India. It is seems to be used in face packs and the like. I don't know why anyone would eat it, but maybe there is a good reason.

Sulphur (purified): Used in Indian homeopathic medicine. I am not sure what for, exactly

Allium ascalonicum seed: Allium ascalonicum is the common shallot. Shallots appear to contain more flavonoids and phenols than other members of the onion family.

While researching these ingredients, I found them listed in the same order, with the same misspellings, on a site that appears to have nothing (publically) to do with Oslo Health Solutions.

Check out the information for Pileen, a natural remedy for hemmorhoids, which is marketed and sold by Ark Corporation (Rawalpindi, Pakistan)

Some text from their site:

PILEEN is an effective herbal remedy for treatment of piles or haemorrhoids. It stops bleeding of haemorrhoids and relieves pain and inflamation. Pileen also removes the constipation, which is one of the main cuases of piles. Pileen is equally effective for both (internal and extrenal) forms of piles.

WHAT IS PILES?
Piles, also known as haemorrhoids, are swollen blood vessels in the back passage. There are two types of piles - internal or external: Internal piles are the most common form of the condition and appear as bright red shiny swellings inside the anal canal, covered in the thin, moist lining of the rectum. External piles are swollen veins close to the anal opening, covered in a layer of skin with a dark red or dusky purple appearance and can resemble bunches of grapes.The main cuases of piles are constipation (for a long period) and use of too much chillies and spices.

To prevent piles :

• Ensure that there is adequate roughage (bran, whole grains, green vegetable, and fruits) in your diet.
• Avoid alcohol, tea, coffee and very spicy food
• Drink at least 8 glasses of water daily preferably non-refrigerated.
• If your life style is sedentary include some exercises in your daily routine.
• Get yourself treated for any condition that is causing you to strain such as chronic cough
• Attend to nature's call daily and do not postpone the urge to defecate, but do not sit for too long in the toilet.
• Maintain god hygiene and keep the anal area dry learn to relax mentally and regularize your life style
• Isabghol husk can be taken as a bulk forming laxative.

DOSAGE:
Two tablets thrice a day with water.

INGREDIENTS:
Berberis Aristata ,Melia Azedarch, Linn Seed, Raphanus Satirus, Red Earth, Purified Sulphur, Allium Ascaionicum Seed.

Just a side-by-side look at the ingredients again: Pileen above, multiple OHS products below

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

Fascinating, huh?

The funniest fact is this:  OSH do sell a product called Hemorotab, but the ingredients are completely different than the hemmorhoid treatment they apparently re-label and sell to treat MSA and other serious health conditions! Mad, eh? Here is the list for Hemorotab (Hemorotab! I ask you?! Sweet mother of God! I couldn't MAKE this stuff up!)

(The main ingredients of Hemorotab tablets are: Nuqra flakes , Ruby triturated, Turquoise, Agate green, Bombyx mori, Elettaria cardamomum, Conucilien, Corallium rubrum, Coral, Sea coconut, Ambra grasea, Aquilaria ovata, Delphinium denudatum, Doronicum hookeri, Lapis lazuli, Myristica indica, Pearls triturated, Vateria indica, zehar mohra, Crocus sativus

Hmmmm ...rather heavy on the precious and semi-precious stones, this one. Who knew hemmorhoids were so status-conscious?)

...but I digress...

On to Formulation 3...

This one is supposedly for the treatment of Idiopathic thrombocytopenic purpura (ITP), which is a bleeding condition in which the blood doesn’t clot as it should due to a low platelet count. OHS's "treatment" for this includes the following.

Ammonium Chloride
Potassium Nitrate
Cinnamomum
Tamala
Rheum Emodi, Wall
Base Q . S

My analysis:

Ammonium Chloride: Salt of Ammonia. Its expectorant action is caused by irritative action on the bronchial mucosa. This causes the production of excess respiratory tract fluid which presumably is easier to cough up. I'm not sure what benefit this woudl have to bleeding or platelets, exactly.

Ammonium salts are an irritant to the gastric mucosa and may induce nausea and vomiting.  (Again, not getting the platelet connection here)

Potassium Nitrate: Salt Peter. A popular misconception was that potassium nitrate caused impotence and it used to be added to food in all-male institutions. This myth has been debunked. However, potassium nitrate and other nitrates do successfully combat high blood pressure and are used medically to relieve angina.  (Fair enough -not that I think ITP causes either of these problems.)  Oh and BTW:   Platelets, anyone?

Cinnamomum Tamala: Indian Bay leaf. It is mostly used as a seasoning, but is reputed to help colic, diarrhoea, and "rheumatism". It is also said to reduce blood sugar.

Rheum Emodi, Wall: Reported to be useful in biliousness, chronic bronchitis, asthma, sore eyes and bruises.(OK! Maybe this one is for the platelets!)

Base Q . S: I could only find references to this as a listed ingredient in some shampoo that is supposed to prevent hair loss...

Formulation 4.

For Peptic Ulcer Disease,  -the thing that struck me -just looking down this list, was that there is a lot of strong, fragrant substances being sold to soothe a peptic ulcer? Logically, that doesn't compute...

Camphor: Camphor is used in several cough preparations such as Vicks and Buckley's as a cough suppressant and topical analgesic

Menthol: Menthol has analgesic properties that are mediated through a selective activation of κ-opioid receptors. Menthol also enhances the efficacy of ibuprofen in topical applications via vasodilation, which reduces skin barrier function

Oleum anisi: Oil of Anise is employed as an aromatic carminative to relieve flatulence. The oil may be administered on sugar or as Spiritus or Elixir Anisi. It is a mild expectorant, and is an ingredient of simple cough lozenges, often in combination with liquorice

Oleum carvi: Caraway Oil is used to impart flavor to medicines, and to correct their nauseating and griping effects

Oleum eucalypti: The oil of eucalyptus (which is chiefly eucalyptol) and eucalyptol, in small doses, are gentle stimulants; in large doses, they occasion irritation of the throat and fauces, with increased flow of saliva; cephalagia, with extreme fatigue; frequency of the pulse; increased temperature; diminution of vascular tension; gastric irritability, and, not unfrequently, diarrhoea, accelerated respiration, the peculiar odor of the oil being exhaled with the breath; and increase of the urinary excretion

Oleum pine: Pine Oil. It is given internally as a disinfectant and expectorant,

Thymol: Thyme extract. Recent medical research on rats concludes that "Thyme extract had relaxing effects on organs possessing β₂-receptors (uterus and trachea). Thymol has GABAergic properties via a mechanism of action similar to the anaesthetic propofol. Though much less potent, thymol may possess abuse potential (Nice!).

Tincture zingiber: Essence of Ginger  used to calm the stomach and also to treat pneumonia, acute and sub-acute dysentery

Formulation 5

This is purportedly for the treatment of Parkinson's Disease, Soft Tissue Sarcomas and Atrial Fibrillation. It was when I started to go through this particular list that I started to feel like I had stepped into the twilight zone. The lady from whom we bought our house had Parkinson's, and I saw a tiny piece of that that did to her. It is a horrible disease (most of the diseases OHS claim to treat are horrible. This seems to be deliberate). To think that these people are selling the list below (read it) as a "completely guaranteed and clinically proven herbal supplement that helps patients overcome the symptoms of Parkinson's Disease" just makes me want to vomit. Apparently, if I took some parkotab, I might do just that! Read on if you have the stomach for it:

Salvia Haematodes: (from a PubMed article) The aqueous extract of the root of Salvia haematodes has been investigated for its pharmacological actions on the cardiovascular and central nervous system. It was found to possess significant cardiotonic and anticonvulsant activities.

Centauria Behan: Centaurea Behen is the correct spelling. A white flower of the knapweed family. Said to be tonic.

Orchis Mascula: The ground-up root (called Salep) is very nutritive, astringent, expectorant and demulcent. It has been used as a diet of special value for children and convalescents,

Delphinium Denudatum: According to an Indian Medical site: "It helps in reducing the inflammation and also helps in relieving pain. It helps in curbing the infection happening in the body and wounds. It is a good nervine tonic and makes the nervous system strong. It improves digestion and normalizes the peristaltic movements in the gut. It stimulates heart for normal functioning and also helps in purifying the infected blood. It checks the respiratory system by expelling out the extra mucus from it. It is a good aphrodisiac agent and also normalizes the menstrual cycle". (I bet the men with Parkinson's will be pleased to have their cycles regulated. Quick! Call Michael J. Fox!)

Myristica Frargrans: Duplicate entry -a mispelling of Myristica Fragrans (i.e. nutmeg) -see below for details

Cinnamonum Cassia: "Chinese cinnamon", a key ingredient in 5 spice seasoning, but has no medical properties that I could find.

Doronicum Pardalia: Thanks to the misspelling of "Doronicum Pardalis" I found this little gem, from our friends at Ark Corporation in Pakistan.

Aren't misspellings fun?!

Doronicum Pardalis: -no such thing. Doronicum is a plant called leopard's bane and Pardalis is a descriptive word meaning well... leopard! (...so that means...what? leopard's leopard's bane? Leopards bane squared? The mind boggles...)

Zingiber Officinale: Common Ginger. It is often used as a natural remedy for stomach upset, motion sickness, and nausea

Asparagus Racemosus: A plant native to India. It is sometimes used to treat dyspepsia.

Paeonia Emodi: The Himalayan Peony. Not only is it purty,

it actually has a significant effect on the Central Nervous System.  Read this.

I don't know if this is necessarily a beneficial effect for Parkinson's sufferers, however...

Serpentine Bezoar:  It sounds like something out of Harry Potter, right? And it almost is. A bezoar is a mass found trapped in the digestive tract of an animal. A hairball is the most common kind (Yum!).

I couldn't find much information about serpetine beozar (outside of references on various OHS sites). I imagine most of the big ones would end up in a serpentine shape (think about it), as opposed to a having been taken from a snake's digestive tract, although maybe that's what they mean. Either way, I am not impressed.

In the middle ages, Beozars were highly prized and considered to be an antidote to any poison; -which theoretically makes it a good thing to put in this particular formulation,  given some of the other ingredients therein (see further down the list). But that myth was debunked in 1575.

Pearl Oster: This may refer to the remains of this woman (at this point, I wouldn't put anything past Oslo Health Solutions!)

...or it could mean "Pearl Oyster". This in turn, could either mean pearl oyster mushrooms, or it could refer to actual ground-up pearls (less likely).

Caryophilus Aromaticus, which are cloves

Kushta Qalee: I can't quite figure this one out. It appears to be some kind of substance popular for male performance improvement, It is used in several such products including  Ejacutab!  (hey look! There's the laughing couple again!)

Stychnos Nuxvomica: Misspelled. This refers to Strychnos Nux-Vomica, which is a product of the Strychnine tree. (Yes, really! Nux Vomica = poision nut!) According to the Internet, It can actually be used to treat flu, fatigue, hangovers, stress, headache and sleeplessness

...and to kill people, of course. Let's not forget that.

Asphaltum: No. This does not refer to ground-up road. Not quite, anyway. Asphaltum does occur naturally and is sold in India as Shilajit (which means destroyer of weakness in Sanskrit -love that!). According to a site I found "it works as a powerful anti oxidant thereby delaying aging. It is an effective remedy in arthritic conditions like rheumatoid arthritis, osteoarthritis, gout and other joint related problems and back pain".

Amber Gris: Ambergris occurs as a biliary secretian of the intetines of the Sperm whale and can be found floating upon the sea, or in the sand near the coast . Ambergris has been mostly known for its use in creating perfume and fragrance much like musk. During the Middle Ages, Europeans used ambergris as a medication for headaches, colds, epilepsy and other ailments

Bambusa Arundinacea: Thorny Bamboo. It is used as an aphrodisiac, diuretic, demulcent, tonic, pectoral, stimulant, and antifertility treatment.

Myristica Fragrans: Nutmeg! (known as Jaiphal in India) Jaiphal is a aromatic, carminative, hallucinogenic, stimulant that is considered effective in digestive disorder, de-hydration & skin disorders.

I wanted to continue this exercise. There are at least 8 other formulations that I have not covered. But honestly, I am feeling quite ill right now. I think If before, anyone might have thought there may be something to the claims of Oslo Health Solutions, the idea of giving whale bile, posion, hairballs and unstudied anti-convulsants to someone with Parkinson's disease will make them think again.

There will be a Part III in this series, because I still have some questions which I think are relevant. However, in the meantime, here is a list of even more Oslo Health Solutions products I have found while researching this piece.

Hernotab, Hemotab, Hemnotab, Hemorotab, Ejacutab, Phyratab, Fibritab

Is there no end? ...

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

Blastotab

Product	Condition	*Formulation #	Price	Duration of supply
Absotab	Skin Abscess	10	$79.99	One month
Amylotab	Cutaneous Amyloidosis.	1	$79.99 (was $290.00)	One month
Anemia Tab	Anemia	Not listed	$89.99	Two month
Archotab	Arachnoid Cysts	2	$79.99	Two month
Ascotab	Ascites	2	$79.99	Two month
Atrophtab	Multiple System Atrophy	2	$79.99	Two month
Ameloblastoma	2	$79.99	Two month
Chordotab	Chordoma	2	$79.99	Two month
Clearotab	Dark Circles and Bags Under Eyes	1	$79.99	One month
Cronkatab	Cronkhite-Canada Syndrome	2	$79.99	Two month
dentotab	Teething!	2	$79.99	Two month
Emphotab	Emphysema	6	$79.99	Two month
Fascitab	Muscular Fasciculation	2	$79.99	Two month
Guillatab	Guillain-Barre Syndrome	1	$79.99	One month
Hornotab	Horner's Syndrome	2	$79.99	Two month
Lennotab	Lenox Gastaut Syndrome	2	$79.99	Two month
Leukotab	Leukemia	13	$79.99	One month
MD Tab	Muscular Dystrophy	1	$79.99	One month
meglatab	Megaloblastic Anemia	2	$79.99	Two month
MG Tab	Myasthenia Gravis.	8	$59.99	Two month
Myeloditab	Myelodysplastic Syndromes	2	$79.99	Two month
Osteotab	osteomyelitis	1	$180	Two month
Parkotab	Parkinson's disease	5	$79.99	Two month
Peniatab	Idiopathic Thrombocytopenic Purpura	3	$160.00	Two month
peptotab	Peptic Ulcer Disease	4	$180.00	Two month
Periotab	Periodontitis	10	$160.00	One month
Peritab	Peripheral Neuropathy.	1	$180	Two Months
Picknotab	Pick's Disease	11	$230.00	One month
pp-tab	Post-polio syndrome	1	$79.99	One month
prismatab	Benign Essential Blepharospasm	2	$79.99	Two month
Pseudotab	Pseudotumor Cerebri	2	$79.99	Two month
Psoriasis tab	Psoriasis	Not listed	$139.99	Six week
Ptosotab	Ptosis of Eyelid	9	$79.99	One month
Raynotab	Raynaud's Disease	1	$79.99	One month
Sarcotab	Soft Tissue Sarcomas	5	$79.99	One month
Sclerotab	Scleroderma	1	$79.99	One month
Sightotab	Age-related Macular Degeneration	9	$79.99	One month
Syrotab	Syringomyelia	1	Now $79.95 (was $230.00)	One month
Thyrotab	Thyroid Nodules	7	$79.99	Two month
Ticknotab	Tick Bite (?)	12	$190.00	Two month
Tonsotab	Enlarged Tonsils	2	$79.99	Two month
Tortitab	Spasmodic Torticollis	2	$79.99	Two month
Trematab	Benign Essential Tremor	2	$79.99	Two month
Vertigo Tab	Vertigo	Not Listed	$49.00	One Month
Vitiligo Tab	Vitiligo	Not Listed
welnatab	Kugelberg-Welander disease (SMA Type III)	2	$79.99	Two month
Wiskotab	Wiskott Aldrich Syndrome	2	$79.99	Two month

*I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

Show Business

This was a joke told to me by my uncle:

A guy walks into his local bar and is hit immediately by a dreadful smell, which isn't usually there.

"What's that smell?" he asked the bartender in disgust. A stanger; a smallish, skinnyish, unremarkable looking  man, raised his hand apologetically: "That's from me." he said. The stranger then went on to explain that he was with the traveling circus that had just rolled into town, and his job was elephant keeper.  The elephant, who didn't travel well, permanently had a dodgy digestion. Every morning, one of his tasks was to give it an enema. "you never get out of the way in time", he said apologetically (there is a lot more repulsive detailing of the man's job in my uncle's version of the joke, but you get the idea).

The local man was shocked. "You have to do this every day?  The man nodded "Sometimes twice a day". "But that's terrible!" exclaimed said the local man, utterly horrified. "Why don't you find a better job?"

Now it was the the stranger's turn to looked horrified. 

"WHAT....?  And leave showbusiness..?"

This post is in response to Dave Hingsburger's post on circus freaks. Because as my elephant story highlights, you don't have to look like a freak to join the circus, but you might get a better job there if you do. 

I have only seen the 1932 movie "Freaks" once, when I was a child (and it freaked me out then), but I have subsequently become kid of fascinated by it, particularly it's social impact, which had actually started before the movie: Some people had started to complain about the sideshows and their exploitation of people with differences, so many just shut down, ruining the livelihood of the performers who worked there.

The cast of the movie "Freaks".

Years ago, it was not considered demeaning to work as a freak in a circus or sideshow. It was an honest living and many of the people above made a good income and supported families. Yes, there was terrible mistreatment and exploitation of some individuals by ruthless handlers (isn't there always?).  However, there was also a community, friends, a sense of acceptance and belonging that came from being in a freak show that they would not have gotten in Suburbia. And -let's face it:

It was showbiz.

When the sideshows closed, many of these performers, who had visible disabilities and differences and were then left to try and fend for themselves with no skills and no community to support them.

It is quite sad.

The late Sandy Allen, who was officially the tallest woman in the world until her death last August, is one of my personal heroes. I remember seeing something about her on the telly, and it mentioned that at one point in her life, she had a job as a living exhibit in (I think) the Smithsonian Institute, as the world's tallest woman, where she sat behind a desk and spoke to people, educating them about her differences and similarities and about being kind to people who are different.  Ultimately, -although it was the Smithsonian (I think), how different is that job  than working in a sideshow?  The main difference is that there were probably more laughs to be had in the sideshow.  And funnel cakes.

The quality of this photo is not the best, but it is one of my favorite pictures of Sandy Allen, who stopped apologizing for her height and embraced it.  

There is a big difference between having a visible disability or (for want of a better word) deformity, and having an invisible one. I have learned this lesson hard as the mother of kids with invisible disabilities. Too often their differences are attributed to parenting or behavioral issues, because they look like everyone else. 

To have a visible difference is a constant reminder to everyone that you are different, and people often -for better or worse- treat you accordingly. Even when people try not to treat you differently, they still do it; -the deliberate 'not looking' thing they do or the sidelong glances. I look the same as everyone else, so I only really experienced this for myself when I was heavily pregnant and standing in a New York City subway car; how all those AB men in the seats would suddenly and pointedly fail to see me. There is now a blog dedicated to ignorant subway riders. It's great.

   

The advantage of having an invisible disability is that you can often pass for normal. This can be a disadvantage, too of course. I carry my cane all the time, and it does serve a a useful visual reminder to others that it is not ok to push past me or let doors swing back in my face (as it that were OK under any circumstances. It's not, but many people just behave that way)/

So there I was, researching sideshows and I came across this picture. The man, who is identified as Nels Nelson, is stretching out the skin of his face and he clearly has Ehlers-Danlos Syndrome.

 

I say "clearly" because skin that stretchy is a hallmark of the condition, although not everyone with EDS has it (I don't -in case you are wondering. My skin is stretchy, but not like that.)

In a way, folk like Mr Nelson, who probably could not have worked a "normal" job because of joint pain issues, had the best of both worlds: He had the income and community of the circus/sideshow -providing he wasn't exploited. Like the elephant keeper, in my uncle's joke, he was still "in showbiz" and yet, unlike some of his colleagues, he could still go out in the town and blend reasonably well.

And so I got to thinking about Ehlers-Danlos Syndrome and the circus: 

The two most obvious differences in people with Ehlers-Danlos Syndrome is hypermobility of the joints and stretchy skin.  Many acrobats,  and probably all contortionists more than likely have EDS or a similar condition of hypermobility.

It is recognized in the acrobatic schools of China,  where there are many hypermobile people (it's genetic and a dominant gene) and a strong tradition of acrobats, that the performing life of most acrobats is short -the joint pain and arthritis usually becomes unbearable by the time the acrobat is in their mid-to-late twenties.  

...unless they happen to be this guy, of course. Wang Jiangsheng is 83 years old. He reminds me a little of me great-uncle Seamus, except Seamus was 78 and used to put both his feet behind his head.  it was his party piece.  ...but I digress.

I thought the solution that Mr Nelson, and more recently Garry Turner, who is probably the most famous person with EDS who is "out" about his condition, well he should be, he is famous because of it (Michael Phelps is -in my opinion- the most famous person who has Ehlers-Danlos Syndrome and has chosen to keep that fact in the closet) is that -unlike the acrobats, they found a way to exploit their condition without excerbating it. Repeated stretching and contorting will more than likely lead to The Pain of EDS, which is very nasty and difficult to manage. Of course many of us don't stretch and contort and we get The Pain anyway. We're just unlucky.

Now, I don't know if Nels Nelson had The Pain that is usually associated with EDS. Garry Turner has come out publicly and said that he does have it and he takes very powerful drugs to manage it; as most EDS-ers must.

 Many people with EDS don't like Garry Turner. They think he paints a false picture of the condition, that people think we can all do stuff like this, which -of course, we can't. Garry officially holds the world record for stretchiest skin. His skin is ridiculous, even by EDS standards.  

There are many people out there who work as acrobats or contortionists and probably have EDS but they don't know they have it, don't care they have it or don't care to know if they have it or not. However they make a living by exploiting their EDS. Most don't (can't) do it the safe way, by just stretching their skin. Most exploit the other hallmark difference of EDS, hypermobility.

Now, I wold bet money that this person, or Snake Girl and indeed most performers of this ilk has EDS or similar. And if they know they have it, know the risks and dangers and are legal adults, I have no problem with them choosing to exploit it to make a living. I expect many, if they were informed and educated about EDS would still choose to stretch and perform, either because they like the attention (showbiz!),  or could not make a similar income any other way. Snake Girl supports her entire extended family back in South Africa. I hope they remember that if she ever becomes disabled by EDS.

The advantage of EDS is that you can turn the freakishness off. It can be an invisible disability, expecially when one is young and using no assistive devices. When this young lady puts both feet on the ground, she will look like any other person.

 

I wonder if it is a sign of ...something, but freak shows, side shows and other strange and unusual acts and oddities are making a comeback. Garry Turner aside,  most of the acts don't feature people with deformities who are there just to be gawped at. Most of these acts feature performances. Of course of of the performances involve people hammering nails into themselves and picking up heavy objects by attaching them to their nipple rings. ....sigh.

Nowadays the "freaks" choose to be freaks.  They spend money for it.

...while Lobster Boy's daughter, who comes from a long line of carnival performers, is unemployed and  misses the limelight.

Who are the real freaks?

The people who pay money to see these shows, that's who.  That was always the case. Johnny Eck, once famously said (after his retirement from showbiz) ""If I want to see freaks, I can just look out the window."

Me too.

Frug: A Limbrel Review, Part I

I mentioned that I have started taking Limbrel for the arthritis in my hands.  Limbrel is officially approved for the treatment of osteoarthritis, However, we are not sure if this is the type of arthritis I actually have (me being me: test results indicate little wrong, but clinical presentation and pain say otherwise). I think my poor rheumy is desperate at this point, because my hands are getting worse, and nothing that has helped has been tolerated by my body (which appears to be the story of my life).

Limbrel is a new product. Not many people are taking it yet. So I thought I would write a little review here and document my progress on OSM for those of you who might be interested.

But before I do that, I am  going to explore Limbrel itself, how it came about, and why is it classified and marketed the way it is.

Limbrel is an interesting product. It is not considered a drug. It may sound like a drug; -with a generic name (flavocoxid) and everything. It may look like a drug (see picture of druggy looking product and packaging).  It is only available by prescription here in the USA. However, It is actually is classified -not as a drug- but as a "medical food product".

What the fuck does that mean? I hear you ask?  Indeed, I said it to meself. So I tried to find out.

According to the FDA, as defined in in section 5(b) of the Orphan Drug act (Orphan drugs! This is getting better already! Are they drugs without parents or drugs for kids without parents?  I have no parents, so I probably qualify either way...  but I digress...) a medical food product is:

a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.

Huh?

So by these guidelines, shouldn't Ensure be a medical food? Or the ketogenic diet? -or a lowfat diet, for that matter?  Indeed,  all food -if you think about it, is to manage a specific medical condition called malnutrition.  Naturally, some works better than others in achieving this end (resulting in many morbidly nourished people in this country -but that's a whole 'nother post!).

Where is the line between "food" and "medical food"? Indeed, where is the line between "medical food" and "nutritional supplement"? Because although Limbrel  looks like a drug, the descriptions sound more like a nutritional supplement to me. See for yourself. This is an excerpt taken from the official site:

Limbrel contains flavocoxid, a proprietary blend of natural ingredients from phytochemical food source materials. Flavocoxid is comprised primarily of the flavonoids such as baicalin and catechin. These or similar ingredients can be found in common foods such as soy, peanuts, cauliflower, kale, apples, apricots, cocoa and green tea. The fact that these and similar ingredients have been widely researched and used in medicinal products in other countries also supports biacalin and catechin’s safety and effectiveness. Limbrel provides levels of these flavonoids needed to meet the distinctive nutritional requirements of people with osteoarthritis and cannot be obtained through simply changing the diet.

Hmmm.  So it is a food and not a drug because it is a naturally occurring product which is extracted from plants.  Ah! OK then.

But hang on a minute: Morphine is extracted from the dried milky exudate of the unripe seed capsule of the opium poppy (Papaver somniferum). (-I found that definition on a web site, BTW. OSM has pretty good English, but "exudate" is not a word I use daily. Nor is "somniferum" -but I kind of like it!).  So Morphine is a natural plant extract, too. Why then is Morphine, which is a natural plant extract, classified as a Schedule II narcotic drug, and Limbrel, which is also a natural plant extract, classified as a medical food?  Indeed, why is St. John's Wort, which is also a natural plant extract, and only available by prescription in Ireland, classified as a "nutritional supplement" (i.e even lower on the totem pole than "medical food" ) and available over-the-counter here n the US? 

It's all quite confusing, really.

OK. Let's get the simple explanation out of the way first: One keyword is "narcotic"  Morphine is narcotic, which according to Dictionary.net means:

A drug which, in medicinal doses, generally allays morbid susceptibility, relieves pain, and produces sleep; but which, in poisonous doses, produces stupor, coma, or convulsions, and, when given in sufficient quantity, causes death.

Death is not a good side effect. Nor is addiction, which is the other big thing with narcotics. I can understand why morphine would be regulated so closely. You can't really sell it in the vitamin aisle.

So taking this same logic: Is Limbrel a food, not a drug because it is not addictive and cannot be overdosed on? So if I happened to down me entire bottle of Limbrel in a single sitting, does this mean I wouldn't get seriously ill or die?  This is not a theory I intend to ever test, BTW; -especially given the side effects I have experienced on just the regular dose (more on this later), but I am thinking out loud here.

And what about St. John's wort (SJW)?  That is available on the supermarket shelf and you can overdose on that. An overdose can cause Seratonin Syndrome, which is dangerous.

Symptoms of serotonin syndrome include:

 

• Confusion
• Seeing or hearing things that are not really there (hallucinations)
• A fast heartbeat (tachycardia)
• Feeling faint
• Fever
• Sweating
• Muscle spasms
• Difficulty walking
• Diarrhea.
   

In one reported case, an overdose of St. John's wort caused seizures.

But SJW is not regulated as heavily as Limbrel is. SJW is not classified as a "medical food" but as a nutritional supplement, and is therefore available in me local supermarket, parading merrily on a shelf my kids can easily reach.

Hello, FDA?  Here is a new word for you: Consistency.

I am still curious why Limbrel walks like a drug and talks like a drug but is not a drug?  I did a little patent search: Limbrel has two so far; this one  and this one  and a couple pending.  I suspect the answer is the simplest one:

Money.

If you control the patent and the product, -especially with the backing of the FDA, you become the sole and defacto supplier for 50 years.  It's a really clever move.  If Limbrel was simply marketed as a nutritional supplement, it would lose a lot of cachet -AND it would mean open season for competitors.  Getting classified as it has been was pure genius. Not only for the patent and FDA protection, but because most consumers think "prescription" means "better".

Limbrel was developed by Primus Pharmaceuticals, a private company run by a bunch of late-middle-age-to-mature white guys. As it is private, I can't get hold of their financial reports, which is a shame. I was pretty curious about some of their activities. I am particularly interested to see how they managed to make a common substance found in everyday food into a prescription product.  I strongly suspect their real genius lies in management, marketing  and lobbying, not in science.   I could be wrong, of course. OSM is rather known for her cynicism.

I tried to find some evidence to back me suspicions, thinking I would unearth a huge amount of political contributions, but I only found a few campaign contributions by JD Weir, who is the Head Honcho  there (although I'm sure that's not what it says on his business cards) to support some local right-wing republicans. No big surprise there.  I'm sure the real money was hidden behind some ostensibly independent lobbying group.

I'll have to dig a little deeper.

You know the biggest irony is the amount of time this piece has taken me to write. There is a simple reason for this. My hands are KILLING me at the moment. I have had to take many breaks, and slather on the Voltaren gel. The irony of this is not lost on me. I aggravate the inflammation by writing about Limbrel, so I need Limbrel to combat the inflammation.

It's messed up.

As to how I am doing with Limbrel? Well,  It is early days yet -not even a week. As it is not a drug, I was told not to expect results immediately. I have mainly had side-effects so far: upset stomach and noxious flatulance that could clear the mall in record time. I was told this is my body being "cleansed of toxins" I don't know if I buy that or not, but I am giving it more time, but not much. If the toxins aren't out soon. Himself will leave me and the children and animals will go with him. 

BTW my new name for Limbrel the half-food/half-drug is this:

Frug.

It sounds filthy, doesn't it? Time will tell if it is.

Worlds Are Colliding

I wrote very recently that I had had The Big Conversation with Joe about having Ehlers-Danlos Syndrome. He took it well at the time. In fact, for a ten year old boy with Autism, he took it very well. I had a feeling he would process a lot of this slowly and he may NOT be OK with it soon and for a while thereafter. I figured this process would happen slowly, maybe over the course of this calendar year, and then he would accept and carry oon with his life.

However, events conspired against me.

The first event was that Joe fell spectacularly during Gym a couple of weeks ago and got hurt in several places. Everything righted itself, except one. He complained of continuing pain around his hip/buttock.  I told him not to worry, we were seeing the pediatric rheumatologist last week, and she would have a look at it.

Ther rheumatologist visit was the second thing. First off, it involved taking them out of school early, which messed with their routines. Then when the doc did look at his sore bit, she said if it was still hurting on Monday (today) to call her and she would arrange for an x-ray.  Joe was quite put-out at the thought of an x-ray. He mentioned this to me at the time (he has had some prior bad experiences, which are not documented here on OSM). I thought I had put his fears to rest.

I hadn't.

Many people don't know this, but a lot of people with Autism suffer with anxiety. Joe is one of them. And while a lot of autistic anxiety manifests as whining, nagging or ritualistic behaviors, Joe tends to be a bottle-it-up-then-explode kind of guy.

He exploded at 11pm the following night. Over this time, the concept might need an x-ray had morphed into WILL need surgery and will be permanently disabled and need a cane in Elementary school (and all the kids will laugh at me).

It just so happened that Himself was not home that night. Joe got very angry with me "It's all YOUR fault. I got this from YOU!" and locked himself in the bathroom. I ended up on the floor outside, trying to talk him down through the door (I could have opened the door with the little thingy, but decided against it).  Eventually he came out to talk, but he was still very upset and self injuring.

I got him calmed down and we talked for a long time. I explained that an x-ray does not mean automatic surgery. It just means taking a picture, and that even if they saw something wrong in the x-ray, that probably would just mean extra physical therapy outside of school. I promised him he would not need a cane in elementary school.  -I don't like to make promises like that, as I can personally make no guarantee but he only has a few months of elementary school left.

So Ehlers-Danlos Syndrome meets Autism and worlds are colliding in my little house.  Joe is still having quite a lot of fears about EDS -particularly the x-ray and it's implications, but he has not had another meltdown about it.   

Yet.

I don't know how many other moms have gone through this. I know I am not the first, but this feels like uncharted water right now.  I am doing the best I can for us -that is all I can do as every case is different, and I hope it is enough.

I will update you on the x-ray. He still hurts today, so I called to arrange it. I should tell you guys about the time he had a CT scan, then you will have some idea how much I am NOT looking forward to this...  *sigh*

Maybe that can be tomorrow's post.

The Horrible Word

I am a member of Facebook, and it has been very nice for me to get to know many readers and other people from "here" through that medium. I also reconnected with several old friends, who searched on my name and found that I was still recognizable after many years. (I am particularly unimaginative when it comes to my hairstyle).

I have joined many interest groups and causes on Facebook: some for chronic pain, Syringomyelia, Ehlers-Danlos Syndrome (of course) and several others. These groups allow us to connect with people with similar differences, interests or with a common goal.

However, social networking is a double edged sword: In the same way that charities and other groups can get together to work towards a common good, there is also ample opportunity to form groups that condone and spread hatred.  There is a Facebook group that is trying to get the company to remove groups that spread hatred against people with disabilities; physical, developmental, intellectual and
invisible. Here is a link if you want to check it out.  You have to have a Facebook account to see it.

There is also a very interesting discussion on that board regarding language and semantics: Which words to use and which words are/are not offensive.  I have been thinking about that all day and I realized what the most offensive word really is.

Surprise to say: It's not "retard".

And forget gimp, crip(ple), spaz, cretin, Mongol, moron, idiot, "slow", "handicapped", "special (needs)" and imbecile. OK most of these are not acceptable in general usage (and I feel quite sick having typed them all out like that) -especially when used by the able-bodied to reference a person with a disability. HOWEVER, there are some in the disability community who may use words like this to reference themselves or their peers, either ironically or descriptively. So a lot really depends on context and the intention behind the words. I do agree that the noun "retard" should be banned. There is no reason to use it. Ever.

But it is not the worst word out there. The really horrible word is this one:

Hate.

Put "I hate" or "we hate" in front of any of the words in my little list of horrors above, and you have yourself a good example of the kind of nastiness that is out there.  The group I recently joined is doing a good job having many of these groups removed by reporting them to Facebook. But as of yet there is no Facebook policy to ban or prevent these kinds of hate groups before they form.

Now, some of the "hate" groups are actually very constructive: "We hate Cancer";  some are nice "I Hate Hate" or "I hate Intolerance"; some are fun: "I hate Big Brother", and some are supportive: "I Hate Spiders" Naturally, there are a lot of sports-related ones out there ("I bet I can find 1,000,000 people who hate Man. United"), and there are also some anti-(various) races or nations, anti-(various) religions, anti-gay  and anti-(various) minority groups; which are not cool at all. "I hate faggots" has no reason to exist on a site like Facebook, which is trying to sell itself as a more sophisticated MySpace.

...And some of these groups are pure vile, like  "I fucking hate retards" (that is actually the name of the group) This is the description: 

A group for all people who hate mentally handicapped people that are pampered and not taught, with a full understanding, of the world they are so luckily living in. if you hate how fairness is promoted with a double standard in today's society with mentally challenged folk; this is a group for you."

Interestingly enough, this group was started by an Austrian. Welcome back, Adolf! We didn't miss you in the slightest. Now FUCK OFF.

I had another group all picked out, but I couldn't find it again. I had reported it to Facebook earlier, and I think maybe it was removed. Yay me!

So there is something we can do. Way down on the bottom right of every Facebook page there is a "report" link, where you can report a violation of Facebook terms, as Facebook claims it does not tolerate any attacks on a person or a group.  And yes so many of these hate groups are allowed to exist and flourish just a few pages away from all the happy little "save the planet" applications. I have a problem with using Facebook now, knowing that it willingly, if passively harbors so much nastiness.

I have been criticized for my zeal on this issue, told to leave well enough alone. This is not my fight. But if it is not mine, whose is it?   I am reminded of a poem about the Nazis:

First they came for the Communists,
and I didn’t speak up,
because I wasn’t a Communist.

Then they came for the Social Democrats,
and I didn’t speak up,
because I wasn’t a Social Democrat.

Then they came for the Trade Unionists,
and I didn’t speak up,
because I wasn’t a Trade Unionist.

Then they came for the Jews,
and I didn't speak up,
because I wasn't a Jew.

Then they came for me,
and by that time there was no one left to speak up for me.

(attributed to Pastor Martin Neimoller)

The fight against Hate is everyone's fight.  Let the haters congregate and spread evil elsewhere. If Facebook cannot or will not address this issue, then I for one will vote with my (electronic) feet, hang out elsewhere and leave Facebook to the haters.

The Wednesday Woman

For well over a year, I have taken my kids to the local community center to swim in their (purportedly) heated indoor pool during the wintertime. We try to go at least 3 times per week; exercise is very important. Our favorite night to go is Wednesday, because several other families we know meet up there at the same time, right after the swim team training.

Now, the entrance to the health center is policed, usually at that time by a woman of mature years. You hand her your membership card, smile, and maybe exchange some pleasantries. There are two women we see regularly. Both have kept up their appearance, and always keep their their hair dyed to hide the gray, and have managed to find lipstick in shades which were probably outlawed three decades ago.

The woman who works most days is very smiley and nice, always ready with a kind but misguided complement: "What beautiful girls you have!" (Joe cut his hair shortly after that!)

The only problem with Wednesday was the Grumpy Woman works on that day. I always make a point of being nice to people who have to deal with the public, because so many make the mistake of treating them as non-people (especially around here). I always make eye contact, smile and say hello.  The Wednesday Woman always made an effort to respond, so I figured she wasn't born grumpy. Something had happened to make her that way.

We missed  swimming for several months because of ...stuff.  When we returned, I notice the Wednesday Woman was markedly changed. She was much more pleasant, seemed much happier and looked ...younger! (although a different lipstick would definitely have helped there). She smiled at the kids as well as at me.

This has continued for several visits.

So on Wednesday, when we were leaving, I hoisted my cane up under my arm (the wrist strap broke awhile ago) and Wednesday Woman spotted it.  "Is that a cane?" 
"Yes"
"I have the same one."
"I bet more than one, right?". she nodded
"I have two in the car, and two in the house"
She laughed. Well, I've just been upgraded to a walker.  She indicated the folded rollater behind her.  "Nice. Is that the one with the seat?  She nodded again. "I hear they are great." She nodded.
"I have spinal stenosis", she volunteered.  I was instantly sympathetic.
"Ooooooh. that HURTS"  She nodded. "Is the cord trapped?  She nodded again.  "I'm sorry. Do they at least give you decent drugs for the pain?" (I know many people -especially women, are denied proper pain management).
"Yes" she said. Demerol. Takes it right out.  In fact I take one before coming here, and I'm.." she made a level hand gesture. "...fine".

I almost laughed out loud. That solved the mystery of the Wednesday Woman who had been grumpy and was now nice. The poor dear had been in horrible pain all that time. Is sounded like she was finally getting some decent treatment for it.

I was glad for her.  And glad that I had always tried to be nice to her, back in her dark days; -she had obviously noticed and remembered.  You just never know what is going on with people on the inside, do you?