Synopsis
CReATe podcasts are short recorded interviews on topics we hope will be of interest to patients with ALS and other motor neuron diseases.
Episodes
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ALS Untangled Series: Ep. 36 - Vitamin E
05/10/2020 Duration: 17minVitamin E is one of the most popular, and most thoroughly studied, supplements in patients with ALS. Although it is inexpensive and safe, well designed trials have failed to find evidence that it can slow, stop, or reverse ALS progression. Interestingly, some data suggest that long term use of vitamin E might decrease a person's risk of getting ALS.
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ALS Untangled Series: Ep. 35 - Leap2Bfit
17/09/2020 Duration: 11minLeap2Bfit is a combination of many ingredients. The exact amount of each ingredient is not clear. While some of these products have plausible mechanisms and preclinical studies supporting their use in ALS, others do not. There are 3 "ALS reversals" associated with this product, but these may have different explanations. Several other patients under the care of ALSUntangled investigators have derived no clear benefit from this product. There can be serious risks associated with some of the ingredients in this product.
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ALS Untangled Series: Ep. 34 - Ursodiol
22/08/2020 Duration: 14minUrsodiol or ursodeoxycholic acid (UDCA) is a bile acid derivative of cholesterol. Since it can have antioxidant, anti-inflammatory and anti-apoptotic effects, it has mechanisms by which it could slow ALS progression. Here we discuss trials of UDCA in PALS, including the taurine-conjugated form (TUDCA). Some of these trials came out after our ALSUntangled review, and have changed our opinion about UDCA as an ALS treatment.
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ALS Untangled Series: Ep. 33 - Propofol
03/08/2020 Duration: 11minPropofol is an intravenous drug used for general anesthesia. Some people with ALS have reported benefits from this drug. Here we explore the rationale, the cases we found objective data on, and the serious risks of propofol as an ALS treatment.
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ALS Untangled Series: Ep. 32 - L-Carnitine
10/07/2020 Duration: 17minCarnitines are inexpensive, generally safe forms of amino acids. There are several mechanisms by which different carnitines might theoretically be helpful to a person with ALS. A flawed Italian trial suggested that acetyl-L-carnitine could slow ALS progression. Here we examine carnitines in more detail in hopes of helping patients with ALS make more informed decisions about them.
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ALS Untangled Series: Ep. 31 – Gluten-free diet
04/06/2020 Duration: 07minGluten is a protein found in breads and cereals. In a small percentage of people, ingestion of gluten can trigger an autoimmune disease. Here we review the evidence that gluten-induced autoimmunity can mimic ALS, as well as the pros and cons of a gluten-free diet for people with ALS.
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ALS Untangled Series: Ep. 30 – Mito Q
27/05/2020 Duration: 10minIt is clear that oxidative stress is occurring in the brains and spinal cords of patients with ALS. The mitochondria are a major source and target of this oxidative stress. Here we describe an antioxidant that specifically targets mitochondria called MitoQ.
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ALS Untangled Series: Ep. 29 – Fecal Transplants
27/05/2020 Duration: 14minThere is increasing evidence that the microbiome (the family of organisms that live in our guts) may play a role in driving ALS progression. Here we review the evidence behind that idea, and explore fecal transplants as one potential way to alter the microbiome.
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ALS Untangled Series: Ep. 28 - List of rotten eggs
27/05/2020 Duration: 20minThis is a list of a dozen things to watch out for when considering an alternative or off label treatment being advertised on the Internet. These things tend to be associated with some of the less promising treatments that ALSUntangled has reviewed over the past 11 years. The more of these things one finds associated with a product, the more wary we think they should be about it.
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ALS Untangled Series: Ep. 27-Glutathione
28/02/2020 Duration: 11minGlutathione is one of the major antioxidants in all our cells. It is also one of the most popular supplements taken by patients with ALS around the world. Here we review what we learned about the mechanisms of action, pre-clinical data, case reports, trials and risks of taking glutathione for ALS.
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ALS Untangled Series: Ep. 26 - Vitamin D
07/02/2020 Duration: 09minMany patients with ALS have low vitamin D levels. Here we discuss ways that vitamin D might be important in slowing ALS progression, and in reducing the risk of bone fractures from falls. We explain why we think it is important for patients with ALS to have their vitamin D levels checked, and if these levels are low, to get them into the normal range.
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ALS Untangled Series: Ep. 25 - Rife Machine and Retroviruses
07/02/2020 Duration: 08minIn the 1930s, Royal Raymond Rife developed special microscopes he claimed he could visualize living microorganisms, including viruses too small to be seen with any other existing technology, via the color of auras emitted as they vibrated. He also claimed to have developed a machine that used radio waves to kill these organisms. While the use of radio waves to treat disease (a field called "radionics") has been debunked by scientists, it turns out that tiny organisms called retroviruses may actually play a role in causing some cases of ALS.
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ALS Untangled Series: Ep. 24 - “When ALS is Lyme”
13/11/2019 Duration: 12minHere we review an online manuscript called “When ALS is Lyme.” As in our previous ALSUntangled review, our large international team of clinicians and scientists again finds no convincing scientific evidence for a connection between Lyme disease and ALS.
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ALS Untangled Series: Ep. 23 - Hyperbaric Oxygen
13/11/2019 Duration: 14minHyperbaric oxygen can increase heat shock proteins, which might be useful in decreasing oxidative stress and protein aggregation in ALS. It looked promising in animal models of ALS, and is associated with 1 validated case of “ALS reversal.” Unfortunately a clinical trial in patients with ALS showed no benefit and this can cause serious side effects.
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ALS Untangled Series: Ep. 22 - Ayahuasca
13/11/2019 Duration: 10minAyahuasca is a hallucinogen used in religious rituals in the Amazon. This podcast reviews the potential mechanisms by which it might slow the progression of ALS, as well as a few case reports suggesting benefit. Unfortunately we learned this product can cause death and/or hospitalization.
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ALS Untangled Series: Ep. 21 - Anti-fungals
13/11/2019 Duration: 09minOne group has reported evidence of fungal infections in the brains of patients who died from ALS. Here we explore the potential explanations for this finding, and the potential for anti-fungal medications as an ALS treatment.
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ALS Untangled Series: Ep. 20 – Resveratrol
17/07/2019 Duration: 15minResveratrol is a naturally occurring chemical found in grapes, berries and peanuts. By modulating sirtuins, protein aggregation and the gut microbiome, it could theoretically slow ALS progression. We describe an animal study and an "ALS Reversal" that provide some support for this idea.
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ALS Untangled Series: Ep. 19 – RT001
17/07/2019 Duration: 13minOxidative stress is widely believed to be one of the molecular pathways driving ALS progression. Many different antioxidants have been tried in people with ALS, with little or no previous benefit. RT001 fights oxidative stress in a unique way. Here we show why this might be more effective than other antioxidants and review some very early data from the RT001 expanded access program.
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ALS Untangled Series: Ep. 18 – Penicillin G/Hydrocortisone
17/07/2019 Duration: 13minPenicillin G is an antibiotic and hydrocortisone is an anti-inflammatory. These 2 drugs have been successfully used in combination to treat cases of syphilis mimicking ALS. Here we show 1 person's theory on why they could help people with ALS who do not have syphilis, and critique some of his case reports.
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ALS Untangled Series: Ep. 17 – Perampanel
17/07/2019 Duration: 16minPerampanel (also called Fycompa) is a drug used to treat epileptic seizures. Here we review the reasons it might be useful in slowing ALS progression and describe what happened when ALS mice and a small number of people with ALS were treated with this and similar drugs. We describe the ongoing ALS trials and review safety and dosing considerations.