13 posts tagged “patient experience”

“This’ll make you feel better!” Testing advice from people who don’t have depression

Posted 2 months ago by

Martha Mills, a writer for The Guardian, candidly wrote a piece called “’Just go for a run’: testing everyday advice for depression,” where she reviews tips that people unfamiliar with depression have offered her to “keep the blues away.” Check out her assessment of different kinds of advice, plus hear what the PatientsLikeMe community has said about mental health–related tips from the peanut gallery.

Common pointers put to the test

Why did Martha take on this experiment? In her own words: “Being especially practiced at denial, I decided that I, a mere mortal with a solid history of depressive episodes since childhood, could fake my way out of this oncoming tsunami of debilitating black fog using the advice that people who have never experienced depression trot out – an experiment that could surely only succeed [sidelong glance to camera]. I would improve my diet and exercise, force myself to take up hobbies, I would ‘soldier on until it passed’ and thrust myself (reluctantly) into social situations.”

To sum up her “review”:

  • Working out didn’t work for her and just made her mind “churn” (although she acknowledged that exercise can be a beneficial part of a treatment plan for many people with mental health conditions).
  • Taking up “fun” and sociable new hobbies like tap dancing and pottery — and forcing herself to go on days when she could barely utter a sentence — felt silly and awful.
  • “Soldiering on until it passes” — by going to work and keeping a social calendar despite her despair — didn’t work either… because her depression doesn’t “pass” without proper treatment.

This exercise in denial (while not recommended) resulted in some important takeaways for Martha, such as how people without serious depression don’t fully understand it, plus how important prescription medications are for her particular treatment plan. While some pointers can be beneficial (combined with treatments that work for you), statements like”just do this” feel out-of touch and may be ineffective.

The community’s experiences

Some of the PatientsLikeMe mental health community have shared about their experiences receiving tips on how they “just” need to do “X” (fill in the blank).

Here’s a look at their comments on the topic:

  • Opening up on social media about your depression and how you’re doing lately can bring on lots of comments, like “get off the meds — try natural supplements” and “get out of bed and exercise,” one member says.
  • “I get angry and even more depressed when people don’t understand and say stupid things to me like ‘just get over it.’ It is so hurtful.”
  • “My mother in law gave me a book that said that people could cure themselves naturally,” says another member. “I threw the book away once I read that someone diagnosed with bipolar no longer had symptoms because they were being treated for hypothyroidism.”
  • “I got very angry when I went to a class about juicing and one of the presenters said people with mental illness would be cured if they just juiced enough.”

What kinds of advice have you received from people who don’t totally “get” serious mental health conditions? Has any of it been helpful? How do you respond to unhelpful/unwanted tips? Join PatientsLikeMe today share your experiences.

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Probiotics for MS? The latest research

Posted 5 months ago by

Wondering if a probiotic could help treat your MS? With 10 forum threads on the topic, you’re not the only one. From conflicting information online to recommendations from friends and new research making headlines, separating fact from fiction can be tricky. Here’s a recap of the latest research on probiotics and MS from our in-house team of health professionals.

Let’s start with the basics: What are probiotics?

Probiotics are live microorganisms (usually bacteria or yeast) that may be able to help prevent and treat some illnesses and encourage a healthy digestive tract and immune system. They’re often referred to as “gut-friendly” bacteria.

  • Where can you get them? Probiotics are often in supplements or foods (like yogurt, kefir, kimchi, tempeh, etc.) that are prepared by bacterial fermentation.
  • A couple probiotic bacteria that have been shown to have health benefits include: Lactobacillus and Bifidobacterium. Within those groups are many different species and strains. Many probiotic supplements (broad-spectrum or multi-probiotics) combine different species together in the same supplement.
  • Gut flora (microbiota) consists of hundreds of different types of microorganisms. Probiotics may help improve the way your gut flora performs. Probiotics can benefit both men and women equally, so it is definitely worthwhile trying them.
Why is gut health important for MS?
  • Your gut does more than digest food — it plays an essential role in the immune system. This is why it’s essential that you visit a place such as The Hills Gastroenterology in Sydney, when you have an issue with your gut, such as, digestion.
  • There are both anti-inflammatory microbes and microbes that cause inflammation by adding stress to the immune system. When your gut bacteria is out of balance, it can have a negative impact on your health.
  • Some research shows, an MS gut may have more pro-inflammatory bacteria like Methanobrevibacter and Akkermansiaas and less anti-inflammatory bacteria like Butyricimonas.
  • Newer research shows there may be a link between gut flora and the progression of MS.
The latest research on probiotics for MS
  • While there have been studies in mice models and bacteria, there are only two clinical trials that have studied the effects of probiotics in patients with MS.
  • pilot study tested 22 patient fecal samples before and after administering VSL3 (a probiotic mixture with 8 strains of lactic acid–producing bacteria including: L. plantarum, L. delbrueckii subsp. Bulgaricus and L. acidophilus) for markers of inflammation which has been associated with the progression of MS.
    • Results: There was an increased anti-inflammatory effect in the cells after administration of probiotic.
  • randomized controlled trial treated 60 patients with a probiotic containing Lactobacillus acidophilus, Lactobacillus casei, Bifidobacterium bifidum and Lactobacillus fermentum.
    • Results: The study demonstrated that the use of probiotic capsule for 12 weeks among patients with MS had favorable effects on EDSS (Expanded Disability Status Scale), mental health, and inflammatory factors.
    • Based on the results, the difference in EDSS levels between treatment and placebo was statistically significant, however, was not clinically significant (meaning, we need more evidence).
The bottom line:

Should you start taking a probiotic? The jury’s still out. Based on the two trials and the other non-patient studies, there seems to be a link between gut flora and the progression of MS. However, at this time there isn’t enough data or clinical benefit to support the use of probiotics for MS.

Considering taking a probiotic to treat your MS? Be sure to talk to your doctor.

Have you tried taking a probiotic to treat your MS? Join PatientsLikeMe and share your experience with the community.

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