Matt Harvey Owes People with Migraine an Apology

DiseaseNotExcuseIn case you haven't seen this news, New York Mets player Matt Harvey called in sick from Saturday's game, saying he couldn't play because he had a Migraine.

The events leading up to his calling in sick aren't totally clear, but what is clear is that he was out past curfew Friday night, drinking champagne, vodka, and tequila. Saturday morning, he was out playing golf. For missing Saturday's game, Harvey was suspended for three games, which cost him $84,016.

One report quotes a friend of Harvey's as saying that he did have a Migraine Saturday afternoon, but Harvey didn't mention having one when he publicly apologized for his behavior yesterday. Harvey apologized repeatedly and profusely to his team mates and to Mets fans.

Did Harvey have a Migraine Saturday? I don't know, but if he did, I have to wonder if it was triggered by the partying Friday night, a lack of sleep, and/or the golfing Saturday morning. What I do know is that Mets rules include a curfew the night before a game, and he definitely broke that. I also know that a responsible person with Migraine disease would have been at home getting plenty of rest Friday night and taking care of himself in order to avoid a Migraine and be prepared for the game.

While Harvey apologized to his team mates and Mets fans yesterday, he left out another group of people to whom he should have apologized — people living with Migraine. We live with more than enough social stigma and more than enough doubt when one of us needs to miss work because of a Migraine. Harvey's very public behavior reflects badly on all of us. It's a very public example of someone who used Migraine as an excuse.

Mr. Harvey, Migraine is a disease, NOT an excuse. You owe us a very big, very public apology.

To all of you reading this who have Twitter accounts, please tweet this post, use the hashtag #Migraine, and tag Mr. Harvey. His Twitter ID is @MattHarvey33.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com


MigraineNinja200Visit Migraine.ninja

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2017.


A Migraine Onion to Excedrin, Novartis, and Their Social Media Team

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

While the makers of Excedrin and their advertising agency have seemed to be trying to connect with people with Migraine and other headache disorders, they've also been really messing up.

Today, they've really gone way over the top on Twitter with what I'm going to call "predatory Tweets." They're not clever. They're not cute. They're predatory. Here are two of their Tweets:

Excedrin1

Excedrin2

Onion100For these Tweets, I hereby award Excedrin, their social media team, and Novartis Consumer Health a Migraine Onion!

At this critical time in the United States... during the dirtiest, nastiest political campaign every... when our attention should be on solving the horrible issues facing us as a nation...

During this time, Excedrin's social media team posts these predatory Tweets in an attempt to boost their sales and profit from the turmoil of the Presidential campaign. These stinky Tweets also serve to perpetuate the social stigma associated with Migraine and other Headache disorders. I could go on and on, but it all comes down to:

Shame on everyone at Excedrin and Novartis Consumer Health responsible for these Tweets!

Yes, I realize that the opinion of one person and a boycott by one person isn't going to hurt Novartis Consumer Health, the makers of Excedrin, but that's exactly what I'm going to be doing. From now on, if I need or want something made by Novartis — ANY of their divisions — I'll be looking for a substitute made by another company.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

Save


A Migraine Onion to Bel Marra Health

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

With the Internet, we have access to more information about Migraine than every before. Unfortunately, there's altogether too much inaccurate information about Migraine published online.

Today, I'm awarding a Migraine Onion to Bel Marra Health, a site they say they "established in 2004 as a solution to the community’s pressing health issues." More specifically, the Onion goes to Bel Marra and one of their "medical writers," Emily Lunardo, for the article, "Ocular migraine (retinal migraine) causes, symptoms, and treatment."

What's so bad about the article? Let me list some of the problems:

  • Every field of medicine has a method of standardizing diagnoses. That keeps things organized and let's people make sense of things. In the field of "headache medicine," the International Headache Society's International Classification of Headache Disorders (ICHD) is the gold standard. It's now in its third edition (ICHD-3).
  • The diagnosis of "ocular Migraine" doesn't exist in ICHD-3.
  • Retinal Migraine is a recognized diagnosis in ICHD-3, BUT the Bel Marra article is horribly inaccurate in its description of retinal Migraine and its symptoms.
    • Bel Marra said, "Ocular migraine (retinal migraine) is a temporary disturbance of vision, affecting one or both eyes." ICHD-3 says, "Aura consisting of fully reversible monocular (in one eye) positive and/or negative visual phenomena (e.g. scintillations, scotomata or blindness)..."
    • Bel Marra said, "Generally, ocular migraines will resolve on their own within 30 minutes without medications." This is inaccurate. The aura symptoms last five to 60 minutes.
    • Bel Marra said, "If an episode of ocular migraine is followed by a headache experienced on one side of the head, this is known as migraine with aura, and the visual disturbances are then known as the aura, rather than ocular migraine." Again, inaccurate. Retinal Migraine can and does occur with headache. The ICHD-3 says, "the aura is accompanied, or followed within 60 minutes, by headache."

Onion100I could go on and list more errors in the article, but I'm not going to. The article is so flawed by inaccuracies that it truly should just be avoided. The article stinks.

This kind of misinformation being published on line is absurd. There's no reason for it. Ms. Lunardo is supposed to be a medical writer. I'd suggest that she take whatever she was paid for this and invest it in some educational resources. Of course, the very resource that could have helped with the accuracy of this piece, the ICHD-3, is available ONLINE AND FREE! There's just no excuse for this shoddy piece.

In addition to awarding this onion, I call on Bel Marra Health to either remove this article from their web site or have it corrected.

If you'd like accurate, physician reviewed information about retinal Migraine, see Retinal Migraine - The Basics.

Do you have someone you'd like to nominate for a Migraine Pearl or a Migraine Onion? If you do, I'd love to hear from you. You can email me by clicking the "Email Me" button in the right column of this blog.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 

Save


Nominations for Migraine Pearls and Onions Open

Migraine-Pearls-OnionsHave you seen a truly great article or blog post about Migraine? Do you have a hero in the Migraine community — someone you admire for their strength or helping others?

On the other end of the spectrum, have you come across a horribly incorrect article or blog post? Have you come across a web site full of misinformation or one that's only there to sell a questionable product or service?

I think you get the idea. Migraine Pearls are shiny and beautiful. Migraine Onions are nasty and stinky. Do you have a nomination for a Migraine Pearl or Migraine Onion? If so, please share it with me. You can leave a comment at the bottom of this post, or you can click on the email button in the right column to email your nomination to me.

Let's work together to acknowledge great content or people with a Pearl or let others know about sites and other content that can't be trusted with an Onion. We need to work together for many reasons, not the least of which is that it can be hard to distinguish accurate content from inaccurate content, especially for those who are in pain while searching and for those who are new to learning about Migraine disease.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 

 

Save

Save

Save

Save


A Migraine Onion to Woman's World Magazine

PearlsOrOnions125It's been a while since I did a Migraine Pearl or Migraine Onion post, so maybe it's about time. Migraine Pearls are awarded to people and organizations who get it right and help people living with Migraine disease. Migraine Onions go go people and organizations who make living with Migraine more difficult by publishing incorrect information, perpetuating myths and stigma, etc.

Today, I'm awarding a Migraine Onion to Woman's World Magazine. On July 19, 2016, they published an article by Debbie Strong, How to Cure a Migraine in 7 Easy Steps. I came across it through a Google News Alert, which means it was probably well read. There were a couple of issues with this article — calling Migraines "headaches" and suggesting to readers that they ask their doctors about Zecuity. The problem with asking doctors about Zecuity is that it was voluntarily removed from the market by the manufacturer for safety reasons on June 16, a bit more than a month before the article was published.

When I read the article, I emailed Woman's World so they could correct the article. No, they might not agree not to call Migraines "headaches," but surely (I thought), they'd remove the recommendation to talk to doctors about Zecuity. Here's a copy of the email I sent on July 23, 2016:

Good afternoon,
 
I’m writing to you about Debbie Strong’s article, “How to Cure a Migraine in 7 Easy Steps.” (http://www.womansworld.com/posts/cure-a-migraine-108453)
 
A couple of points:
  • Migraines really shouldn’t be referred to as headaches. A headache alone is insufficient for a diagnosis of Migraine. There must be other accompanying symptoms. If there’s a headache during a Migraine attack, it’s only one symptom. Migraine attacks can and do occur with no headache.
  • Zecuity was voluntarily pulled from the market by Teva on June 16 for safety reasons. See http://www.healthcentral.com/migraine/c/123/180351/zecuity-migraine-voluntarily.
Thank you.
 
I truly thought they'd at least remove the Zecuity recommendation, even if they didn't reply to me, but they didn't. The article remains as it was originally published. So, this article really stinks. Phew! It deserves an onion.
 
Should anyone from Woman's World see this post — Do you not feel you have a responsibility to your readers? Shouldn't your content be accurate? Why on earth would you not remove the Zecuity recommendation.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2016.

 

Save

Save


Migraine Cures - Even Some "Doctors" Make False Claims

NoCureMigraineDocMigraine is a genetic neurological disease for which, at this time, there is NO CURE. Sadly, that doesn't prevent people who lack ethics, scruples, and common decency from proclaiming that they can cure our Migraines. Even worse, some of those people have medical licenses. I won't refer to them as doctors, despite their being licensed, because that would be an insult to truly wonderful doctors.

Here's an example of what one "doctor" has Tweeted in the last few days:

  • "One more migraine headaches cured. Happy."
  • "we treat almost 98% cure migraine any severity with one treatment session. Children and adult the same way."
  • "Let spread the word for curing migraine. All ages welcome."

When I replied to those Tweets, challenging the promise of a cure, this "doctor" called me a "fanatic" and made excuses such as, "If you do not have access to it. It does not mean it does not exist. Personal worlds are small." When I said to prove it by providing data from double-blind, placebo-controlled trials, I received no response.

Interestingly, someone else on Twitter decided to do a bit of research on this "doctor" and Tweeted an image of a complaint filed against this "doctor" before the Medical Board of California. I also did a bit of investigating. Here's a bit of what I found:

Sanction-Info

I've blocked out the identifiable parts of the image above because I'm not sharing it to get into a battle with that individual. Still, I think you can get a better idea of what's going on when you can see it yourself as opposed to my describing it to you.

The bottom line here is that we simply can't trust anyone who claims to be able to cure us of our Migraines.

In today's world of speedy communication, if someone did develop a cure for Migraine, we would know it. It would be all over television, radio, print media, and the Internet. Personally, I'd be overjoyed and sharing the good news with everyone I could in every way I could.

So, no matter who it is who's making the claim of a Migraine cure, it's simply not true. Please don't waste your time, money, or hope on those claims. Instead, aim your hope at partnering with a doctor who understands Migraine, treats you respectfully as a treatment partner, and isn't going to give up on you; all of the treatments we have; and on the promising treatments in development and clinical trials.

Live well,

PurpleRibbonTiny Teri1
 

Follow me on    or 

AHMALogoFinal200AHMA Is H.O.P.E.

A Headache and Migraine Organization
for Patient Empowerment

www.AHMAIsHope.org

 

Make a difference... Donate to the 36 Million Migraine Campaign!

 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2015Last updated July 22, 2015.


Let's Talk Migraine - Useless Tweets and eBooks

Lets-Talk2How much would you pay for an eBook that contained valuable information that could help you with your Migraines? Whatever amount you have in mind, would you still pay it if the same information could be found online at NO CHARGE?

Twitter has become one of the fastest and most effective way of promoting business endeavors, including the sale of eBooks. Something I've come across lately is a practice that I find to be pretty sneaky. I'm not going to get into naming names, so I'll refer to the person I'm talking about as TweeterX.

TweeterX Tweets so often with the hashtag #Migraine that she's ranked as a Twitter influencer for the hashtag. Here's how she's sneaky - several times a day, she posts valid migraine facts such as:

  • "Sometimes postdrome #migraine phase can involved impaired thinking for a few days after the #headache has passed."
  • "During postdrome phase, many report a sore feeling in the area where the #migraine was."
  • "The frequency of #migraine attacks is variable, from a few in a lifetime to several a week, with the average being about one a month."

Sadly, she also posts Tweets such as:

  • Discover The Secret To Completely Eliminating Your Migraine Pain Forever
  • #Migraines are not as difficult to treat as you think
  • Never Spend Another Dime On Expensive, Dangerous #Migraine Treatments
  • Eliminate Your #Migraine Pain Forever In The Next 48 Hours

There are a few things wrong with that second list of Tweets:

  1. At this time, nothing can live up to those claims.
  2. All of them link to an eBook she's selling.
  3. The eBook is garbage. There is some decent information in it, but none of it is anything that can't be found online AT NOT CHARGE.

The eBook she's selling is The Migraine Relief Guide, and I can make statements about it because so many people were asking me about it that I bought it so I could review it. The cost? It was #37 when I bought it; it's now $27. That's $27 for a 53-page eBook. If you want to know more about The Migraine Relief Guide, you can read my review, but that $27 would be far better spent on a couple of GOOD books.

Keep in mind that, just like web sites, some Tweets contain good information while others... well, others are a waste of time at best and a rip-off at worst. Migraines can make us desperate and ready to try pretty much anything. But, we need to be cautious and aware of useless Tweets and eBooks. We already spend enough on our health. We don't need to spend money that, in the end, is wasted.

Live well,

PurpleRibbonTiny Teri1
 

AHMALogoFinal200Join Us for the 2015 Patient Conference on June 21, 2015!

More Conference Info

 

Follow me on    or 

 

Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2015
Last updated April 16, 2015.

 

 


wikiHow Article on How to Fake A Migraine Insulting and Disgusting

StigmaPuzzleThose of us who live with Migraine and other headache disorders do our best to live in our society, something that's often beyond difficult. We live in a society where these disorders are pathetically misunderstood and we face social stigma that leaves some of us often distraught, angry, and hurt.

People tend to fear what they don't understand, and that fear manifests in ridicule, discrimination, ostracism, and other hurtful and harmful attitudes and behaviors.

Friday (August 15, 2014), a friend posted a link on my Facebook page. Maybe you can imagine my horror at the title: "How to Fake a Migraine Successfully." The article was published on wikiHow.com, and it was spelled out in "8 easy steps," complete with photos.

I went to the site and read both the article and their terms of use document. The article was clearly in violation of their terms of use and met their criteria to be "nominated for deletion" under three categories:

  1. It failed to meet the wikiHow character article standards
  2. The topic was a joke. Their document says, "Don't use on achievable topics that happen to be funny."
  3. It was also mean-spirited.

I followed their procedures for attempting to handle it. In fact, I tried over and over and over again. Every time I'd put in the codes for nomination for deletion and add comments about it being a bad idea, someone (I'd assumer one of the original so-called authors) came back and put the same insulting tripe back.

One wikiHow staff member did email me about my "concerns" and tried to be helpful. Unfortunately, his ability to be helpful is limited by the site's asinine rules and processes. Evidently, they have no guidelines or policies that let staff simply delete potentially harmful content. There's a long process that culminates in the "community" VOTING on whether to delete it or not. WHAT?! That's ridiculous beyond any rationality.

Has the moral and ethical fabric of our society gone totally to hell? If this article and wikiHow's anemic response to the complaints about it are any indication, the answer to that is a resounding and horrifying, "Yes."

I must give credit to some of the administrators on wikiHow today though. On the article page today, the original content does not show. The page contains a note that the page has been nominated for deletion along with a couple of paragraphs about faking being ill and that it's not a good thing to do. Hopefully, this whole episode will end with the article being deleted and wikiHow rethinking all of the similar articles on their site.

It's perhaps understandable that some people wonder, "What's the big deal?" Here are some points that I and other members of the online Migraine community offer:

  • Migraine is a potentially debilitating and disabling neurological disease. Diseases are not amusing. How would people have reacted if the article had been about faking a heart attack, cancer, multiple sclerosis, leukemia, Parkinson's, or other diseases?
  • Too many Migraineurs are already being accused of faking Migraines to miss work, school, and other activities. An article on how to do it would only serve to make people think we really do this. Such an article would have no value. It would only serve to perpetuate the stereotype and increase the stigma associated with Migraine.
  • Research has shown that the stigma associated with Migraine increases the burden of the disease. It make it even more difficult for us to live with it.
  • The old saying, "Sticks and stones may break my bones, but words will never hurt me," is a bunch of nonsense. Words can indeed hurt, terribly. They can indeed cause harm. Words can stigmatize.
  • Migraineurs need help, support, and understanding. There have been several suicides in the online Migraine community over the last year, including a 14-year-old boy. Feeling hopeless and stigmatized helped lead to those losses. We must find a way to turn this around.

There is so much more I could say here, but I've made my point. If you want to see the text from the wikiHow article as it was before the editing wars started, you can download this PDF file. The wikiHow admins have changed the title, but if you want to see how the article appears now, you can follow this link. If you wish to comment on the article, follow the discussion link that appears above the article. Calm, rational comments may help as wikiHow decides whether to permanently delete the article and other similar articles.

In closing, I wish all of you well and would like to share something positive with you...

Change the world

Live well,

PurpleRibbonTiny Teri1
 

Make a difference... Donate to the 36 Million Migraine Campaign!

 

Follow me on    or 

 

Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2014
Last updated August 17, 2014.