14 posts tagged “food”

Food for thought: healthy eating in 2016

Posted January 27th, 2016 by

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below:

“I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.”

-MS member  

“I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!”

-Fibromyalgia member

“My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.”

-Major Depressive Disorder member

“I’ve been gluten free since Sept. 2015. I have felt better. I have also added gradually, vitamins and supplements. The most important one being D3. I now am day 3 of 5000iu D3 daily. I also take Omega 3/fish oil daily. Added calcium, C Complex, magnesium, Acetyl L Carnitine, CoQ-10, and B, Glucosamine & Chondroitin. I’m better than I was, more energy, less pain, and IBS is way better. I’m saying this works for me. Consult your doctor before going this route. Looking forward to my best year in a very long time.”

-Fibromyalgia member 

“Since I found out I have MS and cut down on inflammation, I eat very little red meat and pork. Have also cut down on processed food and salt. Feeling better!”

-MS member

Do you have any goals for eating healthy in 2016? Share them with the community!

If you missed our other Food for Thought posts, check out the previous editions here.

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Food for thought: August (diet) edition

Posted August 12th, 2015 by

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below:

“I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.”
-Fibromyalgia member on her “detox” diet

“My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.”
-Diabetes II member on his vegan diet

“With all my meds and other things I take for depression and the DBS, I can’t say that a gluten-free diet has been particularly whiz-bang helpful. However, I think it may have slowed my symptoms or made me feel better than I should.”

“I am also trying to stay as gluten-free and sugar-free as possible. It is a daunting exercise each day, but may be worth it long-term. I believe that diet plays a huge role in all disease states. All we can do each day, realistically, is take one day at a time and note any positive changes in our PD symptoms to gauge how we are benefitting.”
-Parkinson’s members on their gluten-free diets

If you missed our other Food for Thought posts, read the previous editions here.

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Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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Sally Okun explains the new research collaboration with the FDA

Posted June 16th, 2015 by

Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety).

But we’re no strangers to drug safety. Check out some of the previous work the community has helped to drive:

To learn more about this new (and unprecedented) collaboration, we talked to our very own Sally Okun, Vice President of Advocacy, Policy and Patient Safety.

What will this collaboration do?
Patients’ lives and well-being often depend upon medical products approved and regulated by the FDA. But most of the information we see on safety labels comes from clinical trials, which aren’t typically representative of the actual populations of patients who will take the medication. Working with us, the FDA will be able to see the real-world impact of taking medications over time, which can help identify benefits and risks earlier. The FDA isn’t just talking about patient-centricity; they are partnering with us to work directly with patients, and give them a collective voice as part of the FDA’s surveillance system.

How does the FDA normally hear about side effects?
Right now the FDA uses a voluntary reporting system consisting of individual case safety reports, the majority of which are submitted by healthcare professionals and patients to drug product manufacturers, who then are required to report them to the FDA. Our data are different in that the information is generated by patients themselves, and provide real-time insights about what its like to use medical products over time, like tolerability of the drug and factors that may influence taking the drug as prescribed.

When did PatientsLikeMe’s start gathering information about side effects and adverse events?
We’ve actually been collecting information about patients’ experiences with treatments, including patient-attributed side effects, since we launched the website in 2006. In 2008 we took steps to formalize adverse event reporting by developing a customized version of the FDA’s MedWatch tool for use in a pilot project with our MS community. The pilot set us on a path to develop our future drug safety functionality. By 2009 we had created a fully integrated, standards-based drug safety platform, the first on social media. It enabled industry partners to meet their regulatory obligations.

What’s the future?
It’s pretty exciting! The patient experience can more deeply inform the way medications are regulated. And patient-reported data can ultimately have a greater impact on the way that drugs are developed. This collaboration can lead to all of that.

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PatientsLikeMe and the FDA Sign Research Collaboration Agreement

Posted June 15th, 2015 by

WASHINGTON D.C., June 15, 2015—PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management. The announcement was made at the start of the Drug Information Association’s (DIA) annual meeting in Washington D.C.

PatientsLikeMe Co-Founder and President Ben Heywood said the agreement is an unprecedented step toward enhancing post-market surveillance and informing regulatory science. “Most clinical trials only represent the experience of several hundred or at most several thousand patients, making it impossible to anticipate all the potential side effects of drugs in the real world. Patient-generated data give a more complete picture about a drug’s safety by providing a window into patients’ lives and healthcare experiences over time. We’re very encouraged by the FDA’s action to evaluate newer sources of data to help identify benefits and risks earlier.”

The cornerstone of the FDA’s post-approval drug safety surveillance is a spontaneous reporting system consisting of individual case safety reports. Reporting adverse events to the FDA is mandatory for drug product manufacturers but voluntary for healthcare professionals and patients. The majority of these individual case safety reports are submitted by healthcare professionals and patients to drug product manufacturers, who then have regulatory requirements to report them to the FDA. The PatientsLikeMe data are generated in a different context by patients themselves, and provide important real-time insights into the nuances inherent in patients’ experiences over time, including drug tolerance, adherence and quality of life.

PatientsLikeMe is the largest and most active patient network online, with 350,000 members reporting on their real-world experiences with more than 2,500 conditions. The company’s drug safety initiatives began in 2008 with a pilot program that allowed patients living with Multiple Sclerosis (MS) to report adverse events directly to the FDA. One year later the company launched the first drug safety platform on social media, enabling industry partners to meet their regulatory obligations. In all, PatientsLikeMe has collected more than 110,000 adverse event reports on 1,000 different medications, data that the FDA will now be able to access and analyze as a supplement to traditional sources, including FAERS.

While this is the first time that PatientsLikeMe has formally worked with the FDA, the collaboration adds to a foundation the company has built as an active participant in the regulatory science process. PatientsLikeMe has worked with, provided counsel to and co-authored discussion papers with a range of government groups, including the Institute of Medicine, the National Institute of Health, the Centers for Disease Control and Prevention and the U.S. Department of Health and Human Services, as well as nonprofit organizations such as the Patient Centered Outcomes Research Institute (PCORI).

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About the FDA
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
(781) 492-1039


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Food for thought: Diabetes awareness edition

Posted November 26th, 2014 by

It’s American Diabetes Awareness Month, and the American Diabetes Association’s (ADA) theme for November is “America Gets Cooking to Stop Diabetes.” And in that spirit, we’re highlighting the diabetes community on PatientsLikeMe. Members have been sharing about pasta, low-carb diets and ideas for daily menus. Plus, one member graciously shared her personal recipes for some of her favorite dishes – read them in the infographics below.

What’s the diabetes community sharing about?

Usually a meal of pasta and meat sauce in moderation a couple of times a month sopped up with toasted sourdough garlic bread (1 good slice) is usually enough to satisfy one’s pasta cravings. Provided you tow the line on everything else you eat you should recover from a pasta meal within 3 hours of eating it!
-Diabetic neuropathy member

I eat no starches. That is, no bread, no chips, no rice, no pizza, no potatoes, no tortillas. I severely restrict the amount of root vegetables I eat. Occasionally, I’ll have a little bit of beans. I eat very little fruit, maybe a slice or two of tomato on a burger or an occasional strawberry.
-Diabetes type 2 member

Instead of scrambled eggs, I make tofu scramble with veggies almost every weekend. Instead of store-bought cookies, I make my own gluten-free vegan version that not a single picky eater has been able to tell the difference. Instead of regular, white, flour scones, I make vegan teff-based scones with mixed berries.
Diabetes type 1 member

 

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And don’t forget to check out our other Food for Thought posts if you missed them.


Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 16th, 2014 by

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists.

So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting.

This meeting was different
It was my pleasure and privilege to meet and spend time with a member of our PatientsLikeMe community who was selected by the FDA to be one of the panelists. LaurCT did an amazing job sharing her challenge in getting an accurate diagnosis – which took a number of years. She also shared with the FDA and all the folks in the room that she did not learn about the Center of Excellence for IPF located only an hour from her home from her now former pulmonologist after finally getting the diagnosis of IPF – she learned about it from other IPF patients on PatientsLikeMe. (Thank you for sharing Laura!)

Many in the room acknowledged that a cure may not be found in their lifetime but they also conveyed to the FDA a palpable sense of urgency for treatments to slow the progression of the disease to reduce their symptom burden and increase their ability to participate more fully in life. What was startling was how often people shared how the lack of knowledge about IPF among physicians – even among pulmonary specialists – led to delays in their diagnosis and for some resulted in misdiagnosis and inappropriate treatment.

One specialist, Dr. David Lederer, co-director of the interstitial lung disease program at Columbia University Medical Center in New York City and well known to many patients in the room for his work in IPF, used his few minutes in the public comment period to call for therapies that help his patients “live longer, healthier, more normal and independent lives.” He provocatively said that “oxygen should be free” and called for more study of the benefits of oxygen combined with exercise which today are the only things that help people with IPF actually feel better. This was borne out in our poll as well.

A family thing
In addition, there is an important familial connection that many feel is not getting sufficient attention in research. One woman shared her family’s story starting with her father’s diagnosis and death followed by the deaths of each of his 4 brothers of the same disease. A number of people talked about family members who died over the years with similar respiratory symptoms and questioned whether they in fact may have died of undiagnosed IPF.

Your voices transformed
While the opportunity for patients to be heard cannot be diminished, I along with others in policy and advocacy circles remain concerned by the anecdotal nature of these FDA proceedings. At each meeting, there are a few polling questions with audience clicker devices, but there is no systematic way of transforming the very powerful patient narratives that are shared into meaningful and usable data. At PatientsLikeMe, your stories and your voices are best amplified and speak most loudly when transformed into data that is both meaningful and measureable.

All that said, it’s worth watching the free webcasts of the meeting, which you can find here.

PatientsLikeMe member SallyOkun

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Food for Thought: September weather and autumn recipes

Posted September 30th, 2014 by

Around the PatientsLikeMe office in Boston, the leaves are beginning to turn red, yellow, orange and gold, and everyone is starting to bundle up as the weather gets colder. In turn, PatientsLikeMe members have been sharing their favorite fall recipes and some thoughts about how the weather impacts the conditions they live with. Here’s what some have been saying:

 

I love fall. Cooler temps, brisk breezes, my favorite earth colors and long-sleeved tops with soft vests. The more clothes I put on, the better I feel. [I made] creamed chicken and peas with garlic toast. One of my favorites I only make when the husband is off visiting family.”
-Fibromyalgia member

I love recipes from Real Simple because they tend to be very…ah…simple. This is a crock pot one (yay!) and the potatoes are totally unnecessary if you are avoiding them.
-Mood member

“I will be making sautéed Kobach squash w/ onions, broccoli and some Jasmine rice. Spices turmeric, paprika, salt and pepper. Maybe a little scrambled eggs added.”
-Fibromyalgia member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Food for thought: August edition

Posted August 28th, 2014 by

Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and carbs. Read what everyone is saying.

“Finished my first week on the diet, I lost 3 lbs and my psoriasis is not as bad, it has cleared up a little…I do miss carbs though.”
-IPF member

“I think I would very much like to increase my fiber intake in the form of soup made of tolerated vegetables. I think soup will be much more easily digested than some other ways of increasing fiber and maybe cause me less problems, I hope.”
-MS member

“I’m Italian, so that’s a major problem with Type II! I can’t go very long without a dish of pasta. Does anyone have a REAL suggestion for a substitute? Or am I going to have to tempt the fates once a month or so and have a dish of pasta? I tried spaghetti squash. It was like eating shoelaces!”
-Diabetes type II member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Food for thought: July (chocolate) edition

Posted July 14th, 2014 by

Calling all dark chocolate lovers! Did you know there could be a benefit to eating it besides tantalizing our taste buds? A new study started to get some buzz in the MS community forum when a member posted about how it claimed those who regularly consume dark chocolate may enjoy improved walking ability. Here’s what people had to say:

“I have been having problems with dark chocolate causing bowel urgency 🙁 So have had to be very judicious about my intake.”
– MS member


“Dark chocolate generates endorphins and endorphins are hormones that regulate T-cell proliferation in the immune system. Meaning…dark chocolate may help slow MS progression.”

– MS member


“I can get away with some dark chocolate most of the time, without stimulating an unexpected bowel motion. However, sugar I definitely have a problem with…and cocoa butter? I expect it is not great for us either.”
– MS member

 

Members aren’t just talking about the study though; they’re sharing their favorite dark chocolate food recipes. Check them out. And if you missed our other Food for Thought posts, read the previous editions here.

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Food for thought: June edition

Posted June 18th, 2014 by

For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets.

MS forum thread: Nutrition questions anyone?

“And on the other hand, some people, (myself, for instance) have resistance to green smoothies…”

“We love green smoothies. I think they taste best if you use 1/3 green stuff, 1/3 banana, and 1/3 other fruit, like berries, peaches, etc.”

“I can understand the value of smoothies, which have all the fiber blended into the drink, but juice? Not only no, but hell no.”

ALS forum thread: Could a steak make you lethargic?

“I get really tired after chewing. Steak would knock me out!” 

“My hubby has always asked for steak dinners since his dx. He says it makes him feel more energetic.”

“Try really small bites and/or mix with mashed potatoes.”

Fibromyalgia forum thread: gluten/sugar/alcohol free

“I have cut out soda and now drink seltzer water. (I like the bubbles).”

“I had to cut out the alcohol, sugar, red meat and a gluten free diet.”

“It has not been easy. I have on numerous occasions opened that cupboard door to the chocolates but then just closed it again.”

 

 


Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


Food for thought: April edition

Posted April 15th, 2014 by

Everyone’s got a favorite dish (pizza is one of ours), and many PatientsLikeMe members share a bunch of their recipe ideas and foods in the forum. So, we’re going to start highlighting some of the hottest – or maybe the coolest, if you like gazpacho – conversations on the blog as part of a new “Food for thought” series. We’ll be featuring what people are saying in different condition communities.

So, what are people talking about this month?

Fibromyalgia forum thread: What did you make for dinner tonight?

“Leftover sage and rosemary soup, added mushrooms and scrambled egg batter. Stirred until cooked, added sea salt and pepper. Yummy!”

“Crock pot lamb shanks and salad.”

“A protein bar and yogurt – not hungry.”

Type 2 diabetes forum thread: High early morning blood glucose readings

Try having a low carb high protein snack at bedtime. This usually helps me have a lower reading in the morning. I have a really grainy piece of toast with peanut butter or cheese and it works wonders.”

“I eat my dinner at 4:30 or 5 p.m.  I also watch my carbs.  That helps me get the sugar down in the morning.

“At night for a snack and hour or so before bed I might have a piece of celery with peanut butter.

Multiple sclerosis forum thread: Different diets and reactions

“I have to say, the flavor of grass-fed beef is far superior to that of the ‘conventionally raised’ beef.”

“I have gone with the Mediterranean diet and it seems to have helped me physically. Not so much neurologically, though

Does any of that sound familiar? If you are living with fibromyalgia, diabetes type 2 or multiple sclerosis, join PatientsLikeMe and jump into a conversation in the forum, or start a new thread of your own. Sharing experiences has never tasted so good!