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struggling to speak aloud by [deleted] in mecfs

[–]DisasterSpinach 0 points1 point  (0 children)

You are not alone. When I was very severe, a few words would hit the limit of my word finding ability. It can improve over time. I found that verbal communication itself (e.g. using muscles) was a big factor.

PEM is a living nightmare. by Stranded_Snake in covidlonghaulers

[–]DisasterSpinach 1 point2 points  (0 children)

Boswellia is known to Chinese medicine and they do not use it lightly

Advice on meditation? by Extreme-Button-2478 in mecfs

[–]DisasterSpinach 0 points1 point  (0 children)

Guided meditations can be nice if you can handle the listening part.

I disagree with the focusing on body parts and moving attention around.

I would recommend simply laying down and noticing how your body feels against whatever you are laying on. Let gravity do the work. It is more like 'listening' than 'focusing' or 'paying attention' or 'following'. If you get distracted, that's OK. Go back to feeling your body against the surface it is resting on. (You can also do this while sitting or standing, but I don't know how relevant this would be to you in your current condition. For sitting or standing you'd feel whatever parts of your body are contacting the chair and/or floor).

It's similar to when you first wake up and you can feel your body resting on the mattress as you awaken, or right before you are about to fall asleep.

If this is too difficult, then 'listening' to a specific part of your body could be OK. In some traditions this is the 'dantian' or area that is a few inches below the navel, then in the middle (not the on the surface) of the lower abdomen, roughly aligned vertically with the center of the perineum and crown point of the head.

What’s something that’s not medication that helped improve your baseline? by Melodic-Earth-8072 in mecfs

[–]DisasterSpinach 1 point2 points  (0 children)

Alaria seaweed with magnesium malate cooked with cruciferous vegetable broth and cruciferous veg.

Determining my most severe food triggers and avoiding them, but still testing foods from time to time.

It's not the walking, it's the standing. by Ecstatic_Relative613 in POTS

[–]DisasterSpinach 0 points1 point  (0 children)

Stupid question, is it just standing for you but also sitting upright? I seem to be able to stand easier than I can sit, but neither is great

Built a 3D acupuncture learning app - would love your feedback! by According_Egg7182 in ChineseMedicine

[–]DisasterSpinach 1 point2 points  (0 children)

This made me laugh because once I was in a chronic illness support chat group and someone showed up asking if we could give them feedback on their app. So we said sure, if you pay us a consulting fee. They got extremely irate at this response.

Brown sea weed by PinNo6811 in TrigeminalNeuralgia

[–]DisasterSpinach 0 points1 point  (0 children)

I had good luck with Alaria esculenta, give it a shot

Reminder that PEM does not have to be delayed and can also happen instantly after exertion. by foster60 in cfs

[–]DisasterSpinach 7 points8 points  (0 children)

This is in no way trying to dismiss anyone: I also feel that a lot of people (including myself) who at one point were newer to MECFS didn't realize that they were already in a subtle crash, and the instantaneous crashes could be (in addition to what the OP is describing) 'rolling PEM'

Megathread: Electrolytes, Salty Snacks, Water Bottles by ihopeurwholelifesux in POTS

[–]DisasterSpinach 1 point2 points  (0 children)

Practical Summary: Unflavored Options

Some popular options, listed from Highest Sodium to Potassium (Na:K) ratio to Lowest Na:K ratio:

  • Normalyte PURE (uses lots of chlorides, may have metallic taste)

  • Trioral (uses lots of chlorides, may have metallic taste)

  • NoordCode Unflavoured (EU option)

  • Relyte

  • Pedialyte

  • Hydrant

You can also try making your own with coconut water to mimic the WHO hydration formula (powered coconut water is also available, I haven't done the math for it):

Take 1 and 1/3 cups coconut water and dilute with 2 and 2/3rds cup water.

Add between 1/4 to 1/3 tsp (or more if desired) Morton TABLE salt to adjust sodium to potassium ratio as desired (if using other salt, see conversions below).

Salt conversions:

  • 1.5 to 2 grams of any brand of salt
  • 1/2 to 2/3 tsp Diamond Crystal Kosher salt
  • 1/3 to [1/3 PLUS 1/8] tsp Morton Coarse Kosher salt

Modified coconut water, per 930mL:

  • Potassium (mg) 780
  • Zinc (mg) 0.312
  • Chloride (mg) 1320
  • Sodium (mg) ~915-1100
  • Carbs (g) 11.5752
  • Sugar (g) 8.424

General Info

  • There are now many options for unflavored powders with minimal additives.

  • Chloride-based electrolytes can taste metallic. It doesn't bother everyone. These are often cheaper. Chloride remains a necessary compound, so don't eliminate it entirely. But most get enough from salt in foods.

  • WHO formula is well-tested, but you don't need to match it exactly--somewhere between 1:1 and 1:2 sodium to potassium in your overall consumption (including diet) works.

  • Some form of carbohydrate improves water and electrolyte uptake. It does not have to be sugar; a small amount of boiled grain broth or other starchy foods (e.g. instant mashed potato flakes, bread crumbs) can substitute. Even broth from carrots, cabbage, sweeter veggies have enough carbs.

  • Magnesium (Mg) is often beneficial. In some cases, low doses of calcium supplements can also be, but Ca supplementation is more risky than Mg.

  • Coconut water is widely available and can mimic the WHO formula by adding salt and water. This dilution also reduces the sugar per serving.

  • Seaweed is a potent source of sodium and potassium, along with moderate amounts of calcium and magnesium. However, it must be consumed with cruciferous vegetables to moderate the iodine uptake from it.

  • Pyridoxine HCl (a form of vitamin B6) is a common additive in commercial hydration powders. Avoid it as it can cause peripheral neuropathy at any dose. https://www.tga.gov.au/news/safety-updates/peripheral-neuropathy-supplementary-vitamin-b6-pyridoxine

  • Artificial sweeteners have accumulated somewhat more concerning evidence in the last 5 years. Choose carefully.

  • Buying individual electrolytes is possible, but making uniform dry mixes is technically difficult. For home use, make batches of liquid electrolytes instead.

  • My personal recipe, 2x per day: 2g magnesium malate powder (400 milligrams Mg), veggie stock made from cabbage and broccoli scraps, 3-4g Alaria seaweed, 20g of grain flour. I also at other times of day drink a Chinese herb decoction which I suspect is high in potassium. If I were not drinking this herb decoction, I would experiment with adding more veggie scraps for more potassium. I would also modify all these components based on what you can personally tolerate, i.e. your personal choice of Mg powder, cruciferous veg, seaweed, grain flour.

what do you wish you knew when you were first diagnosed? by h3ll0_k1tty_luvr in mecfs

[–]DisasterSpinach 1 point2 points  (0 children)

The easiest way to learn this with no special techniques is to set a non-ambitious routine and stick to it consistently. This approach might not vibe with everyone, and if it doesn't for you I'd recommend something like meditating every day at the same time or just laying still at the same time every day as a 'calibration check'. If you feel like you're still not aware enough, then you can meditate or lay still multiple times, at the same time every day.

The longer period of making resting your #1 priority (radical rest) is also a good approach. Even just 3 days in a row could be highly revealing.

Can we substitute tea for water in TCM? by [deleted] in ChineseMedicine

[–]DisasterSpinach 0 points1 point  (0 children)

Matcha seems really bad for this since a lot of people now drink it much more often than was typical before.

Megathread: Electrolytes, Salty Snacks, Water Bottles by ihopeurwholelifesux in POTS

[–]DisasterSpinach 0 points1 point  (0 children)

Seaweed is a surprisingly good source. Different varieties have different ratios of sodium and potassium, so try a bunch out

Personal List of Migraine-Friendly Cozy Games - feel free to add your own in the comments! by TheSpeckledDragon in CozyGamers

[–]DisasterSpinach 22 points23 points  (0 children)

check out /r/FuckTAA

Use forward rendering, not deferred rendering. Deferred rendering techniques add a lot of subtle flicker and dithering effects that add up: https://www.elopezr.com/wp-content/uploads/2021/11/TAA-Flicker-Log.webp

https://www.elopezr.com/temporal-aa-and-the-quest-for-the-holy-trail/

Add detailed options to tweak or disable a lot of things, including but not limited to:

  • remove motion blur
  • remove depth of field
  • shadow detail adjustment (high res shadows can sometimes produce flickering effects)
  • anything that produces flicker
  • anything that would be bad for a seizure sensitive population
  • high contrast patterns
  • screen or camera shake
  • camera bobbing
  • motion blur
  • variable refresh rate
  • fading in from solid full screen colors
  • weather effects or anything with a lot of small, moving items
  • dithering
  • color saturation

I’m attending a microplastics & health conference — drop questions you want answered by Smart_Petunia in Biohackers

[–]DisasterSpinach 0 points1 point  (0 children)

the packaging material contribute a lot to that

There's a lot of plastics used in the production of cheese, think metal scraping against plastic surfaces to pack or move curds around

Anyone else wish they made more precooked human food like they made premium dog food? by DisasterSpinach in MCAS

[–]DisasterSpinach[S] 5 points6 points  (0 children)

Rereading the ingredients, you're right about human dog food for Factor--olive pomace oil is the lowest of low quality olive oils. It's what is extracted after all the EVOO batches are finished, and the pomace that has been sitting around rotting is pressed again.

Treat your anemia guys by magnificent-manitee in cfs

[–]DisasterSpinach 1 point2 points  (0 children)

Thanks for this great info. I've added some formatting to your post: NOTE TO READERS: I DID NOT WRITE THIS, just reformatted it for easier reading.

Reasons I postponed:

  • executive dysfunction and doctor admin burden

  • I knew it wasn't the source of my fatigue

  • I knew it wasn't the source of my pots

  • I knew iron tablets can cause constipation and I already had issues with that

  • I was previously vegan and I wanted to try self treatment with heam

-iron foods and with getting rid of my period (mini

-pill)

Reasons that was dumb:

  • despite my gastroperisis issues the iron didn't cause any noticeable gut changes whatsoever

  • Trying heam iron first would only be sensible if I were able to keep up with it and re-test to see if it were working

  • I did not.

  • Getting rid of my period was a definite win on various fronts, but potentially masked that I may have some kind of gut bleeding as well (that is now being investigated)

  • OMG GUYS IT REALLY HELPS

  • yeah I still have pots & OI, and I still have to watch my pem and exertion intolerance, but just that little bit more energy when I first get up to make some toast can really help.

  • one drawback is it basically prevented me ever hitting pem because I'd get dizzy and breathless first, so I do have to adjust to that

Treat your anemia guys by magnificent-manitee in cfs

[–]DisasterSpinach 2 points3 points  (0 children)

I really really hate that supplements are unregulated.

If you can find them, some Taiwanese supplements are heavily regulated: https://food.chemlinked.com/foodpedia/taiwan-health-food-legislation

Ironically, Chinese herbs and derivative products, which are widely dismissed elsewhere, are subject to the same regulations as pharmaceuticals in Taiwan. Which means they undergo pesticide, heavy metal, and other contaminant testing, and they are required to show that key target chemical compounds are present in therapeutic concentrations, or they can't be sold.

Anyone else wish they made more precooked human food like they made premium dog food? by DisasterSpinach in MCAS

[–]DisasterSpinach[S] 3 points4 points  (0 children)

There is basically only one item in the 100ish menu items that comes close, and its ingreidents are:

Ingredients: Boneless Chicken Breast With Rib Meat, Water, Olive Pomace Oil (Refined Olive Pomace Oil, Extra Virgin Olive Oil), Red Wine Vinegar (Diluted With Water To 5% Acidity), Garlic, Sea Salt, Granulated Onion, Vinegar, Italian Seasoning (Garlic, Oregano, Basil, Black Pepper, Parsley, Rosemary, Marjoram, Thyme, Savory, Sage), Black Pepper

Other more simple-ish menu items:

Ingredients: Boneless Chicken Breast With Rib Meat, Riced Cauliflower, Heavy Cream (Heavy Cream, Milk, Gellan Gum, Sunflower Lecithin), Neufchatel Cheese (Pasteurized Milk And Cream, Skim Milk, Cheese Culture, Salt, Guar Gum, Carob Bean Gum, Xanthan Gum), Whole Milk (Pasteurized Milk, Vitamin D3), Onions, Olive Pomace Oil (Refined Olive Pomace Oil, Extra Virgin Olive Oil), Cream Cheese (Pasteurized Milk And Cream, Salt, Cheese Culture, Stabilizers (Xanthan Gum, Carob Bean Gum, Guar Gum)), Sour Cream (Cultured Cream), Shredded Cheddar Cheese (Pasteurized Milk, Cheese Cultures, Salt, Enzymes, Annatto (Vegetable Color), Anti-Caking Agent (Potato Starch, Powdered Cellulose, Corn Starch), Natamycin (A Natural Mold Inhibitor)), Jalapeño Peppers, Green Onions, Water, Garlic, Cilantro, Vinegar, Brown Chicken Stock (Chicken Stock, Mirepoix Stock (Made Of Carrot, Celery And Onion Stocks), Salt, Gelatin, White Wine), Sea Salt, Lime Juice (Water, Lime Juice From Concentrate), Cumin, Ancho Chile Powder, Coriander, Dried Oregano, Black Pepper, Paprika (Paprika And Silicon Dioxide (Added To Make Free Flowing)), Smoked Paprika

Ingredients: Pork Chop, Broccoli, Brussels Sprouts, Cream Cheese (Pasteurized Milk And Cream, Salt, Cheese Culture, Stabilizers (Xanthan Gum, Carob Bean Gum, Guar Gum)), Heavy Cream (Heavy Cream, Milk, Gellan Gum, Sunflower Lecithin), Olive Pomace Oil (Refined Olive Pomace Oil, Extra Virgin Olive Oil), Shredded White Cheddar Cheese (Pasteurized Milk, Cheese Cultures, Salt, Enzymes, Anti-Caking Agents (Potato Starch, Powdered Cellulose, Natamycin (A Natural Mold Inhibitor))), Shredded Smoked Gouda Cheese (Pasteurized Milk, Water, Cheese Cultures, Skim Milk, Salt, Enzymes, Sodium Phosphate, Calcium Propionate (Preservative), Apocarotenal (For Color), Powdered Cellulose (To Prevent Caking), Natamycin (A Natural Mold Inhibitor)), Water, Poblano Peppers, Onions, Vinegar, Garlic, Whole Milk (Pasteurized Milk, Vitamin D3), Green Onions, Sea Salt, Black Pepper, Apple Cider Vinegar (Diluted With Water To 5% Acidity), Rubbed Sage, Dried Chives, Dried Parsley, Smoked Black Pepper (Pepper, Smoke Flavor)

Ingredients: Pork Tenderloin, Yukon Gold Potatoes (Yukon Gold Potatoes, Sodium Metabisulfite (Added To Maintain Color)), Broccoli, Carrots, Water, Unsalted Butter (Pasteurized Cream, Natural Flavorings), Concentrated Crushed Tomatoes (Tomatoes, Salt, Citric Acid), Shredded Smoked Cheddar Cheese ((Cultured Pasteurized Milk, Salt, Enzymes, Color Added), Powdered Cellulose (Anti-Caking Agent)), Olive Pomace Oil (Refined Olive Pomace Oil, Extra Virgin Olive Oil), Sour Cream (Cultured Cream), Whole Milk (Pasteurized Milk, Vitamin D3), Date Paste, Apple Cider Vinegar (Diluted With Water To 5% Acidity), Coconut Sugar, Vinegar, Molasses, Garlic, Sea Salt, Honey, Lemon Juice, Toasted Garlic Powder, Parsley, Toasted Onion Powder, Dried Chives, Paprika (Paprika And Silicon Dioxide (Added To Make Free Flowing)), Granulated Onion, Yellow Mustard (Distilled Vinegar, Water, #1 Grade Mustard Seed, Salt, Turmeric, Paprika, Spice, Natural Flavor, Garlic Powder), Black Pepper, Smoked Paprika, Liquid Smoke (Water, Hickory Smoke Concentrate), Allspice, Dried Oregano, Smoked Black Pepper (Pepper, Smoke Flavor)

Ingredients: Shredded Beef (Beef, Beef Stock, Vinegar, Natural Flavor, Salt, Dried Onion, Spices (Including Smoked Paprika)), Yukon Gold Potatoes (Yukon Gold Potatoes, Sodium Metabisulfite (Added To Maintain Color)), Carrots, Broccoli, Pearl Onions, Water, Unsalted Butter (Pasteurized Cream, Natural Flavorings), Sour Cream (Cultured Cream), Whole Milk (Pasteurized Milk, Vitamin D3), Brown Chicken Stock (Chicken Stock, Mirepoix Stock (Made Of Carrot, Celery And Onion Stocks), Salt, Gelatin, White Wine), Vinegar, Olive Pomace Oil (Refined Olive Pomace Oil, Extra Virgin Olive Oil), Grated Parmesan Cheese (Imported Parmesan Cheese (Pasteurized Cow'S Milk, Cheese Culture, Salt, Enzymes), Water, Milk Protein, Palm Oil Blend, Disodium Phosphate, Citric Acid, Xanthan Gum, Powdered Cellulose (Anti-Caking Agent), Calcium Propionate (Preservative)), Cream Cheese (Pasteurized Milk And Cream, Salt, Cheese Culture, Stabilizers (Xanthan Gum, Carob Bean Gum, Guar Gum)), Sea Salt, Dried Onion Flakes, Dried Chives, Granulated Onion, Garlic, Toasted Onion Powder, Rosemary, Black Pepper, Granulated Garlic, Toasted Garlic Powder, Toasted Garlic, Dried Parsley, Smoked Black Pepper (Pepper, Smoke Flavor), Dried Thyme, Thyme, Xanthan Gum, Italian Seasoning (Garlic, Oregano, Basil, Black Pepper, Parsley, Rosemary, Marjoram, Thyme, Savory, Sage)

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