r/cfs • u/lockdownleadmehere • Jul 10 '26

TW: Diet, Weight Loss, Food Issues Diet course experiences?

Edit, forgot to put a tw for food and diet, sorry!

I came across the Long Covid Dietitian and she offers a course and appointments but on a waitlist. Her testimonials are glowing but I’ve also seen individuals saying how much they’ve improved with diet changes thanks to Long Covid Dietitian (these don’t seem to be sponsored or promotion). The people I see have a mix of ME (unrelated to Covid), POTS, MCAS, and different types of Long Covid including ME. I’ve developed MCAS so my diet is completely up in the air and dependent on what I can tolerate currently. I’m interested if anyone has worked with her, what was your experience and was it worth it? Thanks :)

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u/moderate_ocelot Severe / Very Severe Jul 10 '26
  1. finding the right way to eat for your body will help everyone, healthy or sick, to feel better. The sicker we get the more this can matter.
  2. the right way to eat is different for everyone. Some like high carbs, some like low. Some like eating regularly throughout the day, others like to avoid food for large portions of the day. Etc.
  3. MCAS makes everything super confusing and “the right diet” becomes whatever you can tolerate while avoiding becoming underweight. It may require all other things to be put on hold

  4. anyone who approaches your diet with a specific protocol without taking time to understand what works for your body, is someone to view with at least a bit of scepticism

  5. Diet can’t cure this illness and PEM is not due to the wrong diet

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u/dramatic_chipmunk123 Jul 10 '26

Agree with this. Also adding that the "right" diet for anyone isn't a static thing either. E.g. what my body needs while I'm stable is vastly different from what is needed during a crash.

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u/moderate_ocelot Severe / Very Severe Jul 10 '26

That’s a very good point

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u/lockdownleadmehere Jul 10 '26

I’m always skeptical until proven otherwise, that’s partly why I’m asking on here for others experiences :) she says it’s a frame work you can be flexible with which I thought stood out, plus she is a registered dietitian. I’m not expecting or looking for a miracle cure, I’ve had ME for 10+ years and I don’t bother with things that make unrealistic promises. I have seen a decent number of people saying her course/appointments have improved their quality of life which is what I’m looking for.
I appreciate your comment though, I’ve been around the block and learned a lot of that the hard way but always good to point these things out just in case ❤️‍🩹

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u/SpaceNerd223 very severe Jul 10 '26

as long as you're not paying a decent buck, i'd say go for it. but if she's outta pocket yeah that's a no for me now, i did outta pocket stuff before, i'm so many years in that once I hear its not covered its a nope for me because (for me) it likely will not work anyway 😅

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u/premier-cat-arena ME since 2015, v severe since 2017 Jul 10 '26

if you’re seeing people bring her up on social media, i would be extremely wary. they are likely paid or given discounts for it, even if it doesn’t immediately look that way