126 posts in the category “Fibromyalgia”

Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Posted May 29th, 2018 by

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy.

CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal?

What is CBD?

Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.”

More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”)

Products made purely from CBD (without THC) do not produce the psychoactive high of other medical marijuana or some CBD/THC combination products. But, as a JAMA report and some in the medical cannabis industry have pointed out, many CBD products sold online are not accurately labeled (containing much more or less CBD than the label claims, or even containing some THC when it’s not mentioned on the label).

CBD is not regulated or approved by the FDA — but they have issued warning letters to some CBD producers with misleading labels.

Many doctors (in the U.S. and internationally) are hesitant to recommend smoking cannabis or inhaling any burned plant material but may be more open to CBD products that are not smoked. (Has your doctor or provider weighed in about medical cannabis or CBD products? Make a comment below.)

Are CBD products effective?

On PatientsLikeMe, members have reported trying CBD for about 160 different reasons, including specific conditions (ALS, Parkinson’s disease, epilepsy and fibromyalgia — to name a few) and symptoms (from anxious or depressed mood to stiffness/spasticity). Below is a list of CBD or cannabis products members have reported as treatments on the site — remember to discuss your treatments with your healthcare provider, and keep in mind that treatment responses vary:

Join PatientsLikeMe to see more details through the links above and to connect with other members about their treatment experiences.

Note: CBD industry insiders advise avoiding splashy websites that offer a “free trial” of the product — by filling out a form, you may be signing up for an unwanted subscription.

Is CBD legal?

Short answer: CBD is legal under some state laws but not under federal law — so it’s pretty confusing (even to healthcare providers).

More info: As of May 2018, there are 17 states with laws specifically about legal CBD. Most state laws allowing some CBD use tend to be very specific (for example, limiting a CBD product’s THC content) and are not the same as state medical marijuana laws.

Under federal law, cannabis products (including CBD) are illegal and classified the same as marijuana (and heroin and ecstasy) as a Schedule I controlled substance. The U.S. Drug Enforcement Agency (DEA) made headlines in Indiana (where some CBD is legal) a few months back when DEA spokesman Rusty Payne told the local news that CBD is illegal under federal law, but is not the DEA’s main focus. “We are in the middle of an opioid crisis in this country,” Payne said. “That’s our biggest priority right now. People are not dying from CBD. Some would argue lives are being saved by CBD. Are we going to get in the middle of that? Probably not.”

Last year, U.S. Rep. Morgan Griffith introduced a bill called the “Compassionate Access Act” to encourage the federal government to remove marijuana from “Schedule I” classification, exclude CBD from the definition of marijuana in order to allow better medical access, and regulate CBD products to ensure they’re low in THC. So far, the bill has only bounced around to various congressional subcommittees.

Have any questions, comments or feedback on CBD products? Make a comment below or — even better — become a PatientsLikeMe member to discuss this topic in the forum and see more treatment evaluations from people living with your condition.

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Defining “good” health care: 2 new studies reveal patient perspectives

Posted March 28th, 2018 by

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop…

Poll results: Good care is harder to get for some conditions

Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.”

The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care.

The poll also found that patients with these conditions are less likely to:

  • Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease.

  • Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, vs. 66% of ALS patients, 61% of MS patients, and 57% of Parkinson’s disease patients.

  • Change providers even though they think they are not receiving the best care or effective treatment. More than half of these patients (53% of PTSD and 56% of MDD and fibromyalgia patients) have stayed with a provider in this situation vs. just 31% of ALS patients and 36% of MS and Parkinson’s patients.
Why is this the case?

“A positive or negative experience with care could be provider-related, but also related to the fact that patients living with ALS, MS and Parkinson’s often have access to condition-specific specialists or centers of excellence while those living with other conditions do not,” said Sally Okun, PatientsLikeMe’s VP of Policy and Ethics. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

See the full poll results at news.patientslikeme.com.

The patient definition of “good care”

Prior to the poll, more than 200 people (including PatientsLikeMe members, clinicians, researchers and more) shared how they define good health care and what matters most to them, from taking an active role in their care to accessibility and cost. PatientsLikeMe researcher Emil says, “Now more than ever we need to pay attention to that patient role.” In this video, he breaks down the key study takeaways:

 

Are you getting the best possible care? 10 Ways to tell

Based on what the study uncovered, we turned the 10 major factors that define good health care into a check list. Speaking about the poll and the survey, Sally Okun says, “These complementary studies give a snapshot of what is most important to patients, and give patients the tools to find providers willing to meet the characteristics of good care.”

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