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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Weight Loss associated with ME/CFS

Messages
75
From my doctor to members of my family, all have advised me to eat more. I lost about 25 lbs (1.8 stone) from ME/CFS, particularly after the "bad flu" and have been unable to regain the weight in a desperate attempt. I have been eating more for months and increasing my caloric intake but it is no use. So I was wondering if any one had success with a supplement(s) and/or medicine(s). I would be so happy if I can just put on 10 pounds.
 

FunkOdyssey

Senior Member
Messages
144
Copious amounts of protein
progressive resistance exercise (should not cause PEM like aerobic exercise if you are careful)
may consider anabolic steroids, which are used for wasting in HIV infection and cancer
may consider following a "leaky gut" protocol to improve digestion and absorption of nutrients
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
drink milk, full fat, lots of, combine with progressive resistance exercise (as above) otherwise all that will happen is you'll get fat, if you cant drink milk try kefir.
 
Messages
75
Anabolic steroids?? I hope you're joking. :)

As a side note: There are 2 things I am certain about in my illness, that is no to poor sleep exacerbates my symptoms as well as certain foods (I'm not sure which at this point) I think I just got a flare -up after eating a chicken wrap from Pollo Tropical. They say they don't use MSG, so I'm curious. Maybe I should get a food allergy test?
 

FunkOdyssey

Senior Member
Messages
144
It's no joke. If your lean mass drops low enough your risk of death from many causes, particularly fatal infections, increases dramatically. Oxandrolone is typically used and does not produce androgenic effects in women at low/moderate doses.
 
Messages
75
I'm not losing weight by the day, but rather lost a significant amount of weight after a flu that I have never been able to regain. I think anabolic steroids is only appropriate for people who are literally wasting away (AIDS, cancer patients) and meatheads. I'm male but I guess you assumed otherwise since this illness affects more women on the average. And i'm educated enough to know to steer clear of steroids at all costs.

Off topic announcement to people reading this: go to Wikipedia and look how much they raised over the course of a few months--17 Million bucks. I could do a lot with that! But I wish people had the same attitude toward CFIDS as they do preventing ads from appearing on Wikipedia. We need more philanthropists for our illness if we want things done. What ever happened to Buffet giving away 99% of his worth? Don't we (CFIDS research) get some of that?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Boost your calories with things you like which arent sugary things eg nuts, cheese etc (if you arent intollerant to them).

If you can have dairy.. add extra calories to the milk you drink or have on your cereal by adding milk power to it (that was one of the tips a dietian gave me years ago for my failure to thrive child who was very underweight).

I suggest to make undenatured whey drinks and have them in between your meals. (or have diet shakes inbetween your normal meals.. i suggested undentured whey drinks thou as that is much healthier then diet shakes and can be an aid to us).

If you are a coffee drinker .. substitute some of the coffees to more fattening hot chocolates (if you are okay with dairy).

Talk to your chemist... with my failure to thrive child, there was a product which I used to get from a pharmacist (or from the hospital) in which one adds a spoon full to ones food which boosted calories and hence added weight gain.
 
Messages
15,786
You might want to test yourself for food intolerances. Your bad reaction to the Pollo Tropical wrap might be a wheat or additive problem. I don't believe the "no MSG" line unless I've got it in writing from someone accountable (or their website). But intolerances could be causing some bad tummy problems, in addition to the other symptoms they cause.

So it might be useful to try eating homemade (and calorie dense) meals made with fresh ingredients for a while to see if anything improves. Easier said then done when feeling like crap, but it might be worth it :p