One Sick Mother

The FTC Has Changed The Rules For Bloggers

We all thought bloggers aren't regulated, right?  That we cold say what we want on-line and -provided we didn't directly slander (or is it libel? I am never sure) someone who gave a shit, we were exempt from liability for speaking our minds about all sorts of stuff. The First Amendment and all that.  Yes there are copyright agreements and all that good stuff, but bloggers were never required to back up any statement they claimed as fact. I could say I ran into Elvis in the Public Library last month and no-one would bat an eye.

Well, as of December 1st, 2009 that has changed. The Federal Trade Commission (FTC) has introduced new rules surrounding endorsements and testimonials; and it includes bloggers and message boards as well as print, radio and the telly.  There are clauses that cover celebrity and expert endorsements, too. So now Valerie Bertinelli will have to tell you she was paid by Jenny Craig to lose that weight and keep it off. (What?  you didn't know?). Links to more information from the FTC is here; full Federal Register text here, and the FTC-produced videos explaining the new regulations are here.

So I'll have to watch me P's and Qs from now on.  Just kidding! Thankfully, the FTC doesn't care about foul or salty language, or OSM would be fucked entirely.  Not that I will be impacted much by the new regulations, anyway. I very rarely endorse anything. I once wrote favorably about a book, and I do carry links to books I recommend on this site (and there is no direct language that I could see in the FTC guidelines about hosting links -which I will get to later, because I found this point very interesting indeed). Other than books, most of my mission in life seems to be to find the flaws in things and highlight them in bitchy detail. And I am good at it!  So I can never claim to be an endorser of very much at all...

I find it interesting that I found out about this through Wellsphere, where I am a featured blogger -not that you would ever know that, because I never bothered to put the little picture thingy up here on OSM. Am I now in violation of some regulation?  Eek!  Is the FTC going to come and make an example of little old me?... (I digress).  Yeah, Wellsphere e-mailed me about these new rules. (I knew they would come in useful someday). I did search subsequently and the New York Times did have an article about it a few years ago, and there was some discussion about it mostly on marketing  and reviewers blogs and message boards. I think common-or-garden bloggers such as myself didn't have a clue about it. 

And I wonder how many consumers know?

I am going to jump on a lot of points in this post -and I apologize in advance if this piece seems a bit disjointed, but I am trying to cover as much as I can here, and there is a lot to cover.

This particular set of regulations was last revised in 1980; long before Cher was flogging shampoo, Chuck Norris was pushing excercise equipment, and Billy Mays became famous just for selling anything that wasn't nailed down. It was also long before the Internet took off commercially in the 1990s. The FTC had no real regulations for the WWW and it showed and was exploited for most of the past two decades. So the new rules are long overdue and very much welcome -by me, anyway and I think by anyone who strives towards honesty in their transactions with others.  This change will level the advertising and endorsement playing field.  Now, having said that, Please don't expect everything on the Internet to be true from hereon in. Because I think most scammers will just completely ignore these guidelines, like they ignore the FDA, morals and ethics; maybe thinking that their position overseas or hidden behind a series of front companies/sites will protect them. But at least now you know that you can more freely question 'truths' you find on the internet and report questionable practices to our Uncle Sam. 

Hurray!

But how does it all work?

One point I found mentioned  ...somewhere, is that internet reviewers will now be held to a stricter standard than print reviewers. For example The New York Times (let's say)  book, food or movie critics are not required to disclose in writing if they received the book, meal or movie ticket  they are reviewing for free. A blogger, on the other hand, would have to disclose if the book or product was provided for free and if there were any conditions attached to that gift (i.e. it is only free if you say nice things about it. Or you don't get more free stuff from us UNLESS you say nice stuff about this one (although the latter condition is usually implied rather than spoken, so how do you disclose that?)).   And then I wonder about the NYT critics and other gifts: If our print movie critic gets free popcorn to go with his free movie ticket, does he have to disclose the popcorn, even if the ticket is exempt?  And are there ever any conditions;  written, spoken or nudge-nudge-wink-winked between print reviewers and the people behind the products they review?  It all gets very interesting when you start to dissect this stuff.

And Of COURSE there is my particular bugbear: The whole question of scammers and scam advertising on legitimate sites. I have made my thoughts and feelings on this issue very clear in my open letter to the head of WebMD recently. For a laugh, I wandered around some sites today that I KNOW advertise scammers and did a quick search.  Yes, it is after December 1st, 2009, but most of them are still carrying adverts for both direct and indirect scams.  Nice.  But are they breaking the law?

Sites That Carry Scam Advertising

WebMD.com

About.com

Wrongdiagnosis.com

Amazon.com

Google.com

Yahoo.com

People.com

CNN.com (in fairness, I only found direct scammers here, in my very quick search. Is that better?)

ABC.com

CNBC.com (interesting! see below)

Time.com

Newsweek.com

NYtimes.com (almost all of the scams are there!)

Washingtonpost.com

huffingtonpost.com

Timesonline.com

Irishtimes.com

Foxnews.com

I should have just listed the sites that don't advertise scammers (that I recognized as such, anyway). It is much shorter:

Sites that DON'T Carry Scam Advertisements*

NBC.com

MSNBC.com

BBC.com

Fox.com (no public search available)

CBS.com 

WSJ.com

TheCW.com (no public search available)

I could probably go on and on, but I think I have made my point. Lots and lots of legitimate internet names carry links to scams on their sites. They are paid to do this.

Now I wonder if and how these sites are liable under the new FTC regulations?

The FTC guidelines didn't specifically state that carrying product links or advertisements on a website or blog constitutes endorsement of those products. However, that is the public perception.  Read the comments on my Gordon's piece. Many of the people who bought into those products did so because a search on a legitimate site took them to Gordon's Habitual Scamming Center (through that notorious loophole: "sponsored links"). In my opinion, the legitimate sites who carry these advertisements do and should bear some of the liability burden here.  However the regulations seem to skirt around this issue.  (and I wonder how much lobbying went into the wording thereof? Hmmm)

Another thing I wonder about, in light of the the fact that different rules apply to blogs and print media: The Huffington Post (HP) is technically a blog, whereas I figure NYTimes.com is technically part of the newspaper. Does this mean the NYT carries more exemptions, as mentioned above?  Will the HP bear more liability than NYTimes.com, say if both carried the exact same review worded the exact same way?  What about if both carry exactly the same links or endorsements? 

...And what about broadcast media such as CNN and ABC? Will their site content be regulated differently than their broadcast content? 

And do responsible advertisers such as NBC and MSNBC (but not CNBC.  ...why NBC, why???) get any kind fo kudos for acting properly without a government stick as inspiration?

It's all interesting stuff, right?

Another thought that occurred to me is this one: How the fuck do the FTC plan to enforce these new regulations?  Do they have scores of staff reviewing review sites, or are they relying on consumers to report dodgy reviews? (and if so, how will consumers know what is dodgy and who to tell?) You know, although I really really welcome these new regulations and think they are a very good thing: It all seems rather poorly thought out.

However, it's a lot better than nothing, which is what we had before.

*i.e. advertisements that were immediately recognized by me as scams. However, I don't claim to be the all-encompassing authority on this subject...

The Trouble With Elbows

(No this isn't another post about pointy little Grace sleeping in my bed)

When you have Ehlers Danlos Syndrome, you get very used to rearranging  your joints when they go out of whack. I know I am probably supposed to seek medical advice, or to at least note when I pop a joint, but it happens too damn often to bother. If I went to Urgent Care every time I needed an adjustment, they would charge me rent. And taxes.

...and anyway. I can do a far better job reseating my wonky joints than a second party, no matter how many years they spent in school. Because I can *feel* where all the bits are, and I know exactly how much force to use to get them seated correctly.

The only joints I have problems repositioning by myself are my elbows and lower back. Especially the elbows, which have only recently started causing me any problems (and I hope this does not mean knees are next!).

You see, to reseat a joint, I pull it out a ways, and then gently turn or jiggle it to get it aligned, then I let it go back in. It is hard for me to pull my elbow out for  a few reasons:

1. It is usually my right elbow and I am right-handed,
2. If I take my hand to pull the elbow apart, the wrist comes out instead.
3. If I hold my forearm to unseat the elbow, the shoulder usually comes out first.

 

So this means in order to fix my elbow the upper arm must be held while the forearm is pulled. I can't do this by myself (and don't think I haven't tried hooking my arm around the stair pillar, because I have).

This means I have to call for outside help; usually from Himself.

Outside help is fraught, especially when using a non-medical professional, because -no matter how much you tell them not to twist or shake, that seems to be a tall order. Or maybe I ask too much of my spouse. I think nothing of rearranging my bits at the skeletal level, because I have done it for as long as I can remember. I do it to the kids if they take out a finger or toe. (pull, fix "ow! ...oh"). Personally, I don't think it is a big deal to ask someone to put my elbow back in place. But Himself get nervous and makes such a meal out of the whole operation. you'd swear I'd asked him to do something difficult.

Like re-seat a knee.

Responsibility

I always thought that taking responsibility was a learned skill. I didn't think it was something people did automatically and without life lessons. Or at least not without a lot of nagging.  Mostly from their mom. I have had to remind my kids many many times that X, Y or Z didn't "make them do it" that "doing it" was their action alone and  that is why they were the one being punished.

However, sometimes Joe surprises me. Sometimes he will come right our and accept responsibility for something he has done. He 'confesses'. I sometimes wonder if he is being super-smart and he knows the best way to defuse the mom-bomb is to disarm her first by admitting to the mayhem before she discovers it for herself. But although I would love to think that, I honestly don't reckon his social skills are up to that level.

I think he just can't help himself.  That he just blurts it out. Maybe the guilt of keeping a secret is too much for him?  Or maybe he can't stand the suspense involved in waiting for his "crime" to be discovered?  I don't fully understand the mechanics of this process with Joe, but I do know that he often takes responsibility for stuff; and way more than he should. He has apologized when I slept in and made him late for school.  "I'm sorry Mom. I should have woken up."

"But I'm the one with the alarm clock!"

My notion of reresponsibility and what it entails has been challenged to the extreme in the past few weeks by a small electronic device:

Joe's cellphone.

It became apparent after a few weeks of middle school that if we wanted to prolong my life, we would need to get Joe a cellphone. The point was that he could contact me if he got lost (which had happened several times). I decided to go with a pay-as-you go unit, so he had minute counts and other stuff to monitor, to remind him to be responsible and not go nuts texting everyone in the directory. This is quite an affluent town, and a lot of kids have fancy hardware and unlimited plans. However, I wanted to teach him the value of a minute, if not a dollar.  You know, to be responsible.  And we are not affluent, anyway.

Joe liked the phone, but not the responsibility of owning it.  (I didn't realize just how much responsibility owning a cellphone entails.)  Although I had assured him that the phone is insured, and no real harm will be done if anything happens to it, he is ridiculously protective of it. He keeps it switched off to preserve minutes and battery life, despite my telling him several times that this defeats a lot of the purpose of having it, as I cannot call him if I am running late, because then we have conversations like this:

Joe: "Mom, where are you? I've been waiting..."

Me: "You only just turned your phone on now so you could call me, right?

Joe: "yes"

Me: "Well, I have been trying to call you for the past 10 minutes to tell you I am stuck in traffic and to catch a ride with Mrs S."

Joe: "But Mrs S. left already..."

Me: ...(who knows that Mrs S only just left and am therefore too busy biting the inside of my cheek to utter anything intelligible, much less printable)

Me: (takes a deep breath)

Me: "I'm on my way. DON'T turn your phone off after you hang up." (because if I forget to tell him that, he will turn it off)

Suffice to say, we have had a few Issues around the damn phone. It is about the responsibility of owning a phone. He hates having to remember to take it places, not lose it, turn it on, keep it charged, track his minutes, not get it lost/broken and generally take care of it.  It is a lot of stress for him.

This leads to me trying to pro-actively anticipate everything that might go wrong the the fecking thing and try to prepare him for it.

On the night we had the biggest 'phone' Issue (to date), it occurred to me that I had forgotten to show Joe how to put the battery back in. We have all dropped our phones and had the battery go flying across the room/ restaurant/ airport/ train station, right?  I figured (rightly) that if this happened to Joe he would freak out.

So I started to take out the battery.

Joe: "what are you doing, mom?"

Me: "I need to show you something"

Joe: "It looks like you are taking my phone apart"

Me: "well actually, I'm trying to"

Joe got very upset and walked into the adjoining room, out of my field of vision. I continued to remove the battery, struggling a little with bad fingers and a tight casing. When I finally got it open, I looked over my shoulder for Joe,  only to see him standing right behind me with a heavy musical toy held aloft in two hands, about to smash it down hard.

On my head.

It is really hard to explain the emotions you feel when you realize your beloved firstborn child was about to smash your head in over a mobile phone.  I was absolutely crushed.  I wanted to scream my head off and smash the fuckin phone against the wall.  But I didn't.  I got cold and stern and told him to Put. That. Down. Right. Now.  And he was in deep trouble.  Then I told him to finish his homework while I went into another room to cry and try and figure out what I had done that was so wrong.

I'm still not 100% sure. I know that in Joe's mind, the phone was considered the most important thing at that time. There were Rules about the phone, first of which was don't lose or destroy it. I had put the fear of God into him about keeping it safe. When he saw me taking it apart, he didn't know what else to do, but attack me to "save" it. (no it didn't occur to him to ASK me why I was doing what I was doing. He is after all, autistic).

You can fool most of the people most of the time.

You can even fool your mother part of the time

But underneath it all you are still Autistic.

I'm so lucky he hesitated. I was home alone with the kids at the time. He probably would have knocked me out (at least) if he had followed through with his plan.

Later, after we had both calmed down, and I had demonstrated how to replace the battery ("Ohhhh!"), I spoke with Joe about the incident, starting with the question that was foremost in my mind:

"Were you really going to smash that thing down on my head, or was it just a threat?"

"No. I was really going to smash in down"

(oh.)

(sometimes Aspie honesty isn't all it's cracked up to be)

I then tried to explain to him that mobile phones are ten a penny, but his mother only has one head, which is unique and irreplaceable, but he didn't get it. He kept saying stuff like "But you told me to protect the phone. I didn't know what else to do!"  Then I gently explained that he could have ASKED me what I was doing, instead of jumping to conclusions which could have led to pretty serious consequences.

"Oh." 

(my thoughts exactly)

We talked some more, but the upshot is this: Joe still doesn't fully get where he was wrong. He is hyper-responsible in some areas, but oblivious in others. He doesn't have the ability (yet) to prioritize life over possessions, or that it is sometimes appropriate to break Rules.  

I am hoping he will gain these skills in time, and without anyone getting seriously hurt.

ahhhh... Parenting is such fun!

Missed My Bloggiversary

Again.

For some reason, I had Nov 27th flagged in my head as my  Bloggiversary date. But I just looked back on my first post and it is dated November 10th, 2007.  I thought then that I wouldn't be blogging for long. Not blogging about searching for a diagnosis, anyway. I figured I'd be able to riff on all sorts of crazy stuff; that I would move on to use the other meaning of "Sick" in the blog title (I had it all planned, you see:  The three "B"s: Blog, get Better, write Book).

I didn't think two years later, I would still be in the same boat as when I began, and still no closer to a diagnosis than I was when I started. That's depressing.

And galvanizing.

I'm  going to call my PCP (#2 if you are counting) on Monday and get in his face.  

Power

A few months ago, a transformer blew on our street, setting fire to a tree right outside our house.  Since then, our street has lost power four times. Just our street.  As we are the first house on the street, we can clearly see that the houses behind us and on the cross-street right next to us are all merrily lit.  This is frustrating.

The first two times the power failed wasn't a problem at all. It happened late at night, and power was restored by morning. The kids didn't even know it had happened. Himself and myself, having been raised in Western Europe in the 70s, and having experienced the great Northeastern Blackout of 2003, are reasonably well prepared for short duration power cuts and weren't phased at all. 

Then a couple of weeks ago, the family arrived home after an evening at the movies to discover the power had failed again. The adults immediately went to the locations where flashlights and candles are kept, but the kids were completely freaked out.  Particularly Joe. Aspies don't like change, and an unexpected change to his safe place definitely unnerved him.

Luckily there was a charged laptop available, as so we all sat down with a movie to approximate normality for awhile.  I didn't realize how upset Joe was by the whole deal until he asked to sleep in our bed. He NEVER asks to do that. Joe loves his bed and his personal space.  So the kids and I slept in the big bed that night, while poor Himself, dispossessed,  slept in Joe's room.  The power was restored a few hours later, and nothing more was said, although each kids quietly received an extra flashlight to keep by their beds.

On Friday evening after dark, the kids and I were alone in the house and the power went out again. I called out to them to stay put, got the flashlight and enlisted their help in lighting the candles.  Himself came home shortly thereafter and wisely suggested a trip to the movies. After the movies, Himself, who was having good ideas that day, suggested we drop into Target and pick up some camping lanterns.  We got a few small lanterns and one big one. We also got a couple of glowstick/flashlights thingys for the kids. 

The lanterns were an inspired idea. Turns out Joe was freaked out as much by the naked flames of the candles as he was about the dark house, causing a lot of conflict (you blow out the candle to neutralize the threat of fire, it gets darker).  So he relaxed after we got the lanterns on and the candles off. He even announced that he wanted to sleep in his own bed.

I realized when I saw him wandering around on his tippytoes (he is a toe walker) with a lantern in one hand, a flashlight in the other and a glowstick around his neck, that his staying alone was probably a bad idea, but I said nothing.  As Grace and I were getting ready for bed he changed his mind:  "I think I am too scared to sleep in my own bed. Does it make me a chicken if I want to sleep in here after all?"  I said it didn't make him a chicken. It made him normal. And honest. So we all snuggled into the big bed, where I told them stories from my childhood and confessed that I liked power outages because I never got an opportunity like this otherwise.

Later, as I heard Grace's breathing become slow and peaceful in one ear, and Joe's slow and serious in the other, I thought back to his change of heart about sleeping in his own bed: I think he thought he had somehow failed by admitting he was scared, whereas I know it had been a kind-of breakthrough for him.

How can I explain to an eleven-year-old that knowing your needs and limitations is not weakness, but is a different kind of power?

Smell

Grace has been having trouble falling asleep recently.  She becomes scared of monsters and unnamed threats when left alone in her room. No amount of reassurances will allay her fears. She needs a different comfort. I have been lying with her to help her fall asleep, but this means either I fall asleep too, and wake up cold with a sore neck/back, or I lie there bored out of my mind, thinking of all the other stuff I could be doing. 

Even though I spend most of my weekdays alone, I like my time after the kids go to bed. I use it to watch some shows I have recorded, to knit, and to view any "Not Suitable for Work" (NSFW) material that might have been sent to my inbox. I have learned the hard way that NSFW means "Not suitable for Children".  I get twitchy when I miss my evening time.

The other option is to put Grace in the big bed, where I can at least spread out and/or read while I am staying with her. But Himself and I never sleep as well when Little Miss Pointy Elbows is in the bed.  

So last night, Grace -who always used to snuggle down happily in her own bed, was crying and apologizing that she was scared. I reassured her and told her there was no need to be sorry. Her fear -no matter how irrational- is real, and I although I do ask her to make an honest effort to self-comfort, if she can't do it the first time, I will stay with her.  But last night I had a TON of stuff to do and Grace was in my bed, not wanting to be left alone. "Can't you bring your work up here?" she asked. "I can't wash the dishes up here".  She laughed at that thought.

Then I had an idea. I took off the shirt I had been wearing, turned it inside-out and handed it to Grace.

"What does this smell like?"

She gave it a cautious sniff, then inhaled deeply.  "It smells like you!"  She cottoned on immediately and snuggled down with the shirt.

"I feel like you are holding me"  (I was sitting on the edge of the bed, not touching her.)

"Do you want to try staying alone for five minutes, and I will come and check on you?"

She was already visibly relaxing into the bed. She nodded.

I checked on her five minutes later. She was fast asleep.

WIN!

When I went to bed a couple of hours later, she was still cuddling the shirt.

They say that the sense of smell has the most connections to the emotions and to past associations. I guess that is true.

Tomorrow night, I am going to try her with the the shirt in her bed.

And Waiting...

Remember that old Diana Ross song, "I'm still waiting"?  Well, that has been going through my head recently, despite the fact that I hate it.  Now don't get me wrong, it is a lovely song and all. You know the story, right?  A little girl has a crush on an older neighborhood kid and he tells her not to bother. And then he moves away and tells her

"Little girl
Please don't wait for me
Wait patiently for love.
Someday will surely come.."

And of course she doesn't listen.  She waits for him. And as far as I know, she is waiting still.

Because - and I realized this years later, -after I grew a clue. He's GAY!  She can wait until Hell freezes over, gets hot again and then freezes AGAIN, and he's STILL not going to be interested.

...and that's why I hate that song. 

So I heard back from #30 about the whole brain scan thingy. It is a study, won't cost me a bean for the scans (which is good because Insurance won't cover), and maybe some of the other stuff is covered (even better).  However, they are waiting for Board approval or somesuch red tape so I need to hang out some more until that comes through. #30 was very apologetic about the waiting, which was nice of him. However, I don't like hanging around when I could be getting answers.  So we had a conversation which went something like this:

Me: "You know, I'm still confused as to why -if this is CFS- do I feel so much better when I eat hardly anything at all? Yesterday I only ate a few crackers every few hours and I felt great. No episodes at all.  Is that normal for CFS? (subtext: unless you rule everything else out, I won't fit the criteria for your study).

#30:  "That's Interesting. I'll tell you what: While we are waiting for the approval to come through, why dont' we go ahead and schedule a Glucose Tolerance Test to get your glucose and Insulin levels.  Because you know; -just recently I had a woman with that very thing..." (Subtext: Good point. I don't want you buggering up my CFS study if you have a metabolic problem.  Let's rule that out before we get started...)

Ahhhh. The old give-and-take of the negotiating table. How I missed it! 

My GTT is scheduled for tomorrow.

Myasthenia Gravis Herbal Remedy Scams

Myasthenia Gravis can happen at any age and is very difficult to treat. This makes  MG sufferers and their families prime targets for predatory scammers who look for people with medical problems to exploit for their own gain.

There are two types of scam site to look out for: 

• The straight scam product
• The comparison scam site

Let's start with straight product scams. like the ones listed below.  These sites are all for a single product, each of which claims "guaranteed treatment" or "results within days" and list all sorts of herbs, -some of which may be dangerous- as ingredients.

The scam sites have a lot in common: there is no real contact information listed anywhere: No names of people, no phone numbers, no e-mail addresses. The contact information is a mail forwarding service, and/or an online form which you fill out, which gives you no e-mail address and no way to follow up. Every single scam site I have found (over 900!) uses CCNow to process their payments. Make of that what you will. I am just stating the fact.

Here is the list of scam products I have found for Myasthenia Gravis. The product name is linked back to their site. If you click on the company name,  you will be linked back to my article on the particular company selling that product and why it is bad. Please be aware that most of these companies advertise directly on WebMD and other legitimate medical sites. This does not make their products  legitimate. Contrary to what WebMD would like you to believe, they do not verify all of their advertisers, due to a loophole in their advertising policy. 

MG-tab by Oslo Health Solutions (OHS)  -more on OHS, detailing the kind of garbage they put in some of their preparations here  and a little more info on them and the psychology of scamming here.

Gravatin by Berlin Homeo Products

Gravitax by Botanical Sources

Greveton by Gordon's Herbal Research Center

Megnofax by Healing Plants Ltd

Garvical by Solutions By Nature

Please don't buy any of the above products. They are all scams. None of them are based in the country they claim to be based. All of the addresses are mail forwarding services. If you receive any pills, they will arrive from Pakistan. I have received tons of feedback from readers who tell me this is so.

The other type of scam site is more sneaky.  These are the so-called "philanthropic" sites, the ones which want to "help" you find the "correct" cure for your "problem". These sites will list between two or four herbal treatments (all of which you will find listed above) in varying order, and will make an "independent recommendation" of which one they think is best.  Of course, the catch is that the "independent" evaluator actually owns all of the bogus cures in the first place, so they don't care which one you choose, as long as you choose one. They get the money regardless.

(And they think we are the ones who are sick?)

Here is a list of the scam evaluators, along with the link to my background info on them. 

myastheniagravis-options.com run by The Society for the Promotion of Alternative Health (SPAH)

myastheniagravisproducts.com run by  Herbal Product Reviews

myastheniahelp.org run by Towards Natural Health.  A little more on them here.

I have tried everything I can think to try and get these scams shut down; -and I am still trying, however, they are still operating. In the meantime, I am trying to get the word out as much as possible so that people won't buy these products and be ripped off (I still get e-mails every day from people who have been. Look at the comments on my articles).

Please spread the word that these products are scams. If you belong to a support group or messageboard, please let the other members know about these scam products, so that they are not conned into wasting their time and money.

I'm Still Waiting

I went to see doctor #30 in September and I didn't hear back in over a month. I was seriously starting to wonder what was going on with this guy. It turns out the doctor got sick, needed surgery and was out for a few weeks. He assured me he is All Better Now.  I'm happy for him. However in the meantime, I am nowhere near better and thoroughly sick of feeling horrible all the time.  I suppose there isn't much you can do if your very highly specialized doctor is sick, except wait until he is better and hope he doesn't die.

So in case you haven't guessed, we finally spoke last week. None of my labs were surprising, according to #30. My Epstein Barr titers are still very high, as are markers for Parvovirus.  He didn't test me for the new CFS virus that everyone has been talking about recently. Nor did he test me for porphyria, which he had specifically said he would do.  I had that abnormal result months ago and no-one is willing to follow up on it.

*sigh*

So #30 seems convinced I have CFS. He said he is getting together with a expert on MR Spectroscopy  on Monday -today actually, to talk about new imaging techniques for the brains of people like me.  I am to call him tomorrow and talk about ...something.  I'm not sure what. I go the impression that they were thinking of putting together a study, but I'm not sure. I'm in two minds about a study.  The last one in which I participated ended up with me getting unnecessary and experimental surgery and being charged for it.

But it also looks like this imaging; -although definitely interesting-  is considered experimental (but non-invasive) and therefore not covered by insurance.

And I'm poor.

AND there is still the whole having-to-trek-into-the-city-three-times-per-week thing which has not been resolved.

Maybe we'll get it all sorted out tomorrow. 

But I'm not holding my breath.

Stay tuned.

OSM Investigates: Cure All Remedies Part 1.

As most of you know, I spend a lot of time and energy outing scams. I have outed over 1,300 scams here on OSM in the past few months. All of the scams I have outed so far have been pretty blatant: Companies selling garbage which they know has no chance at all of curing whatever ails you. Their sole purpose is to take your money and maybe insult your intelligence in the process.

I often get asked to investigate various remedies and treatments, to see if they are legitimate or if they too are scams.  I am happy to do this, unless I think the request was made by a distributor of the product looking got get some publicity -either negative or positive. Because there is no such thing as bad publicity, right? There are only links and more links.

So in an attempt to educate the consumer while at the same time NOT giving any links or business to dodgy sites, this is the first of an incidental series in which I will investigate a class of remedies generically, with no names included.  Because most of them are just as scammy in their own way as the targeted scams are, so I don't see why they should get a free ride here.

There are different levels of trickery out there  in the herbal cure world.  There are even some sites which may not be blatant scams, but which sound too good to be true nonetheless. Maybe the seller really believes in the quack theory behind the product they are hawking. Or maybe whoever-it-is falls into the category my Da called "well-meaning idiot"; i.e. someone who genuinely believes something has helped them and will help you. too. Maybe they think this  because they took in when they were coincidentally having a remit in symptoms. Who knows?  But anyone who believes in either evolution or intelligent design will tell you that it is possible to fervently but mistakenly believe in something which may not be true.  Because that is the other side's position.

 So -in addition to the common-or-garden criminal scammers, us sick people also have to be on the alert for quacks and well-meaning idiots (WMIs) on top of everything else

 

How to Spot a Quack or a WMI.

The first indication that a cure may have some inherent quackery or well-meaning idiocy is if it claims to cure a wide variety of illnesses. This is especially true if those illnesses bear no relationship to each other, like those that have completely different underlying mechanisms. For example, some sites may claim that their remedy will cure a long list of medical conditions, including  Multiple Sclerosis, AIDS and Epilepsy.  Let's just take those three and analyze a claim like that:

• MS is an auto-immune disease,
• AIDS is essentially a viral infection 
• Epilepsy is rogue electrical discharges in the brain, usually of unknown cause.

How exactly is one single 'cure' going to address all of these completely different problems?   Think about it. To address an auto-immune disorder you have to suppress the immune system. If you are doing that, then a viral infection like AIDS will go haywire. On the other hand, to fight something like AIDS, you would have to enhance the immune system.  This would cause the MS people a problem as their immune system is causing the MS in the first place and they will therefore likely get worse.

And epilepsy:  well nobody knows the underlying mechanism there, so claiming to cure it is just irresponsible.

Therefore  makes absolutely no sense that one product can cure all three conditions.  Yet the claims are out there, people.  Many of them.

Search and Destroy

Another claim I love, probably my favorite claim of them all, is this little gem:

"Our treatment seeks  out and kills cancer cells, leaving healthy cells intact"

I love these kind of claims. They seem so ... neat. So clean. So efficient.  I imagine someone newly diagnosed who is looking at chemo on one hand and a neat little herbal treatment with "no side effects" on the other, would be tempted to try the herbal pill.  I know I would be.

 But I always take a step back and ask a simple question.

 "How?"

That's right: HOW does the treatment seek out cancer cells?  What criteria does it use to differentiate cancer cells from other cells? And what if it is wrong and mistakes ...say ...my pancreas for cancer?

Seriously:  Let's break down that claim: There are approximately 50-75 TRILLION cells in the human body (let's call it 60 trillion as a nice round number)  and there are over 200 different types of cancers out there.

So  you are telling me that your treatment can run some sort of algorithm  that looks like this:

Find Cell 1

Compare cell 1 to 200+ different types of cancer cells (which is presumably held in come kind of on-board cancer database in the pill itself)

If cancer=yes, then destroy cell 1 (but leave all surrounding cells intact)

Else leave cell 1 intact

GoTo cell 2

Compare Cell 2 to 200+ different types of cancer cells...

...repeat 60 trillion times

Then after the 60 trillionth pass, presumably it should start again from the beginning, because several million cells will have died and been replaced in the meantime.

Take this to the bank from a computer ex-professional: That's an awful lot of computing power to fit into a little pill.  Not that you ever could, of course,  because pills can't actually perform computational logic of the type mentioned. And even if they could; I would have a bunch of questions for the manufacturer, such as:

How do you update the pills for new kinds of cancers as they are discovered? Can they somehow into the wireless network and download them overnight like Windows does?  Or maybe the creators just use Magic, because that's the only other explanation. 

And again: what if it makes a mistake and misses some cancer cells or destroys some healthy cells  like...  Oh,  I don't know... Neurons?   What then?

And another thing:  How was it tested?  And WHO was it tested on?  Mice?  (I mean... seriously. who would actually volunteer to be the first human subject in a trial like that?  Even if you are completely terminal,  how would you know it wouldn't go straight in there and eat your brain?)  

Now don't get me wrong, there are people out there actually WORKING on nanotechnology that will do exactly this kind of thing. Teeny tiny little nanobots that will rove around the body, looking for cancer (and that makes me wonder how the immune system will respond to them?  But that's probably a post for another year).  To imply that a pill, lotion or medicine can perform this kind of computational logic is just plain ridiculous. It goes back to my question to the doctor on how streptococcus knows what age a child is? 

The answer: It doesn't know, because it's a feckin BACTERIUM! It can't think.  Neither can pills, potions capsules or lotions (hey!  I think I feel a Pome coming on)

So yeah.  Claims that a pill or potion can  target and kill a certain type of cell is complete crap. Don't believe a word of it.

Research The Research

Another giveaway on quacks and WMI, is that there is usually no actual published scientific research, just theories and gushing  testimonials.  No studies or clinical trials at all. Well, I'm sorry. if there is no large-scale, double-blind peer reviewed human (as in Home Sapiens. Not mice, plants, frogs or bunny rabbits) study; preferably published in a respected journal,  then the cure isn't proven and you can stop wasting my time, TYVM. 

Sure, some people may have taken your product and felt better. That's called the placebo effect and it is well documented. Or they may have taken it around a time when their condition just happened to take an upturn (because most chronic conditions do tend to wax and wane) and associated your product with that upturn. There are a many reasons why people might *think* it helps. This is why we need objective research. To prove if it really helps and by how much.

Most normal people are afraid to read a research paper; afraid they won't understand it.  This is something scammers LOVE BTW. They like to cobble together any old shite that might look good to an amateur and put it out there as valid research. There are three ways to combat this.

1. Look for peer-review and/or  publication in a valid journal.  If a study is published in The Lancet, JAMA, NEJM, or a similar, well respected publication; chances are it's completely legitimate.
2. Try reading the report anyway and see how you get on. Skim over the science-ese and read the English. Often, if the research is bogus, a regular person will pick up on the details: A classic example is the product name omission in the 'results' section:  "both sexes are equally affected by Vitiligo"   Yeah OK. How many were affected by the PRODUCT, as opposed to the disease you are supposed to be curing?  Also look for discrepancies such as dates. If the product was introduced in 2006, but the study is dated 1997, chances are they study and the product don't quite match.  If the study started out on 30 people, but 50 of them responded to the treatment, well, something is up.
3. Get help. You probably know someone who can read over the study; a sibling, friend, colleague or neighbor.  Ask them to have a look at it for you. They can only say no.

I have seen incidences where false studies have been cobbled together. I have also seen people trying to fob off small-scale animal studies as "proof" that their product is so wonderful.  But these types of studies  are not acceptable to me. Not enough that I would actually ingest any of these products at risk of hurting myself. A study need to be legitimate, which means peer review. A product needs to be tested on people. And I mean properly tested in a controlled double-blind scientific study, where the neither the doctors or patients know who is getting the product and who is getting a sugar pill. That way, their responses can be monitored independently and the results can't be fixed.

 

Hello, FDA?

The FDA regulates conventional and recognized  cures and treatments. It requires proper studies and testing and strict standards of manufacture and auditing.  The FDA does not regulate "herbal supplements".  If a so-called herbal supplement actually turned out to be the cure for anything, I can guarantee you the FDA will be on the manufacturer and will require that the product become fully regulated as a drug, not a supplement.

Many companies will tell you that they are 'avoiding' studies because "if the word gets out"  about their marvelous product the FDA will swoop down and regulate them. I have even heard some of them claim that the FDA will confiscate their product and put it out to market on behalf of the Government.  (Ha!  that is funny! This kind of thing doesn't happen in America). The quack company will then go on to tell you that you had better get in there now and buy their product before the FDA snatches it away from the unsuspecting and deserving public.

This is just spin; smoke and mirrors.  And a very hard sell.

First off:  FDA regulation is a GOOD thing for us consumers. It enforces standards. FDA regulation may be considered "bad" for these manufacturers because it forces them to adhere to certain standards of quality and manufacturing (aww. poor babies! ) and therefore it drives their costs up.

Secondly, FDA regulation means that consumers have recourse under the law if the treatment turns out to be harmful. Right now, if you get poisoned by (say) Parkotab, you are screwed.  You can't bring the weight of the US government or the civil/ criminal courts down on the manufacturer because there is no FDA regulation of that product.  However, if you are hurt by an FDA regulated drug, you have recourse under the law and the FDA can take appropriate action, such as force a recall.

So don't believe any paranoid rantings regarding the FDA that the miracle cure merchants will put out there. Their motive is not to make you well. It is to make money for themselves. 

Selling Books, not cures

This is a topic for a whole 'nother post, but some of the claims out there are in book form. "Buy this book for only $25" and you too will know The Secret to conquer  [insert medical problem here]!".  The interesting thing about these schemes: They can bypass certain laws regarding claims. For example, in the UK it is illegal to sell a pill that claims to cure cancer.  However you can sell a book that claims a "secret" to curing cancer.

Inventive, no?

There will be more on this subject another time.

 

Read the disclaimer:

I love this one, lifted from a miracle cure for something

This treatment has not been evaluated by the FDA. The term "cure," as used in this article, is the alternative medicine definition of "cure"...

Ooooooh!  So we are playing with words now! (I love playing with words!) So  "cure" doesn't mean cure to you.  It means something different. Something alternative.

Okay.

Because when I think of the word "cure" I think of concepts such as "all better" and "no longer sick". When you use the word "cure" you mean ...what, exactly?  Something alternative?  What's the alternative to "cured"? 

Sick?

Dead?  

Do please advise, oh miracle cure purveyor. There is quite a range of possibilities there, not all of them happy-happy.

I hope I have given you some food for thought here. There is a lot more, too, but it is late and I am tired. Stay tuned for part II.