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Archive for January, 2010

There’s a site that I’ve been watching in horror for a while now. It’s called “Migraine Symptoms Guide,” and is described as “Information on migraine causes, symptoms and treatments.”

One of the articles on it is “What is an Ocular Migraine?” I think we’ve covered before that the term “ocular Migraine” is used fairly commonly around the Internet, BUT when you see it, you’ll never know just by seeing the term what people are talking about. You see, it’s one of those “types of Migraines” that uninformed people talk about, but it’s not an “official” form of Migraine. For the sake of clarity, the gold standard for diagnosing and classifying the various headache disorders, including Migraine, is the International Headache Society’s International Classification of Headache Disorders, Second Edition (ICHD=II).

I held off on writing about this particular article because Teri Robert had posted a couple of comments, and I wanted to see what the response might be. The first time she commented, Teri explained about the classification system and pointed out another error in their article. They had stated that “there is no treatment for these Migraines. The author posted a reply thanking Teri for the clarification and saying, “We have updated the article accordingly. Indeed, they had NOT. All they had done was add a couple of sentences about preventive treatment, preventive treatment without any research to support it at that.

Teri patiently posted a second comment that not only said that they’d missed her main point about “ocular Migraine,” but went so far as to give them a listing of the types of Migraine outlined in the ICHD-II. As I write this, their article remains unchanged.

Enter Teri’s colleague at MyMigraineConnection.com, Nancy Bonk. On Wednesday, Nancy wrote a fantastic post, “Ocular Migraine” – Not, and Why Not. Nancy wrote quite clearly and unequivocally that there really is no such thing as “ocular Migraine” and why using the term is such a bad idea. Yours truly went to the Migraine Symptoms Guide site/blog and posted a comment with a link to Nancy’s blog post.

Now, here’s the kicker! I just read the comments posted to Nancy’s blog. There’s one from the person who wrote the ocular Migraine article! Because of Nancy’s post, she’s “totally reworking the article.” Yes! Good job, Nancy!!

There is, however, something a bit sad about her comment to Nancy. It’s sad that she didn’t heed the TWO comments Teri left her. It’s sad that she totally ignored those, and she only felt moved to do something after I posted the link to Nancy’s blog post.  Was it ego that made her ignore Teri’s comments? Is it such ignorance of the leaders in the field that she didn’t recognize Teri? Whatever the reason was, it’s sad that this article is still online. I can’t tell when it was first written, only that the first comment on it was posted on January 16. If Scarlett, who wrote the article, were genuinely concerned about its inaccuracies, she’d take it down until it was reworked and corrected. AND, if she’s serious about wanting it to be accurate, she’ll do better research this time. Oh, Scarlett, maybe you should try talking to Teri OR reading her book.

Now, I’ve spent a good bit of time talking about ONE article on Migraine Symptoms Guide. When you go to the main page of the site/blog now, you find the article, “Different Types of Migraine.” I wish I could say that article is better, but it’s not. It lists more types of Migraine that aren’t accurate diagnostic terms:

  • Exertion Migraine: That’s not a type of Migraine. Exertion can trigger ANY form of Migraine.
  • Ophthalmoplegic Migraines: Nope. Check the ICHD-II. It’s not there.
  • Basilar Artery Migraine: Has been called Basilar -Type Migraine for 10 years or so now, and the description is inaccurate.
  • Abdominal Migraine: Description is wrong. Says, “This is the only kind of Migraine that doesn’t involve pain in the head.” Absolutely wrong. You can have lots of different types of Migraine without the headache. When that happens, the DESCRIPTIVE term is “acephalgic” or “silent.”

If the people who write this site/blog were docs, we might call them “quacks.” I don’t think they are, so let’s just say they’re pathetically misinformed and don’t know good research from well… I won’t go there.

Best,
Arabella

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Since Mr. Spencer seems to be on the prowl and attempting to make comments to my blog again, I thought I’d bring  this closer to the top…

Clinical trials and research studies are extremely valuable to all of us. They bring knowledge and better treatments. To perform clinical trials and studies, researchers often need patients to volunteer for the research.

For many reasons, clinical trials are closely regulated by governmental agencies. Some of those reasons are:

  • safety,
  • ensuring the accuracy of the data, and
  • protecting the patients who enroll in them.

If the protocols for a trial or study have been reviewed and approved by the review boards that govern them, they will have a clinical trial identification number. The announcement for the trial or study will give you enough information to know if you might be interested. Some studies just gather information. Even so, you want to be careful to whom you give personal and medical information.

If you’re considering participating in a clinical trial or study, here are some points of information that you will want to check out:

  • Who are the researchers?
  • What are the qualifications of the researchers to be conducting the trial or study?
  • What is going to be done with the information gathered and/or the data from the trial results?
  • Who is funding the trial or study?
  • What is the clinical trial identification number?

This is information everyone who considers a trial or study should have and understand. If you’re likely to be in that position, please either bookmark this post or print it.

I started writing this when I had a Migraine and left it for several days. Now, I’m glad I did. Someone who reads my blog because someone who reads my blog sent me an interesting email the other day. It seems that Barry (Caffeine) Spencer is recruiting for a “trial study.” This is what he has posted on his site:

Participate in a migraine trial study!

Migraine patients are invited to participate as outpatient subjects in a trial study investigating the effect of caffeine abstinence on migraine headaches.

The study period lasts 24 days: a ten day base period, four days of self-imposed weaning from caffeine, and ten days of self-imposed caffeine abstinence. Subjects will record the date and severity of any headaches they get during the study period.

Our reader wrote to Mr. Spencer and asked some of the very questions I’ve listed above. To his credit, Mr. Spencer did reply, but his replies are not ones that I would accept as these needed to join his “trial study.” Here is his reply:

  • The principal and sole investigator is me, Barry Spencer. I have no university degree or professional certification, and am not associated with any institution.
  • It’s a type of cohort study. There is no control group; subjects act as their own controls. There’s a ten day base period during which subjects don’t alter their usual caffeine intake habits, followed by a four day weaning period during which subjects gradually decrease their caffeine intake to zero, followed by a ten day caffeine abstinence period.
  • There is no blind or placebo.
  • This first trial study investigates the effect of attempted caffeine abstinence on migraine. A follow-up trial study will investigate the effect of verified caffeine abstinence on migraine.
  • The “center” is me, located in the US (San Francisco, California). The subjects communicate with me via email and need not meet me in person.
  • This trial study was not registered in a public registry prior to onset of patient enrollment, so there is no clinical trial identifier number. Because the intervention is avoidance of a drug, it isn’t a controlled, clinical investigation of a product subject to FDA regulation, so public registration and reporting of results are not required by FDAAA or US Public Law 110-85.
  • The trial study is entirely funded by me, Barry Spencer.
  • Where and how the results will be published has not been determined. I will show the results to several prominent headache researchers and ask for their opinions. Because this trial study was not registered in a public registry prior to onset of patient enrollment, biomedical journal editors associated with ICJME can be expected to refuse to consider the results for publication. Nevertheless the results of this study shall be published. If no biomedical journal will publish the results, I will self-publish the results on an Internet website. The efforts of participating subjects won’t be wasted.

No Interesting responses.

No degree, sponsored by no institution, possibly self-published results?

When I see something like this, I have to wonder what the problem with the proposed “study” is.  This one is simple enough and potentially inexpensive enough that it shouldn’t be difficult to get professional researchers involved. This is the type of study that could be an excellent fit for a university.

If you’re looking at information about a clinical trial and want to verify its legitimacy, look for it to be listed at ClinicalTrials.gov.

Best,
Arabella ♥

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