Weight Loss or Weight Gain?

[SaveMe]

I find it interesting that the CDC lists "weight loss" as a common symptom in CFS, but not "weight gain".

I believe their rationale is that since there seems to be a viral connection with CFS, and most viruses including HIV, influenza virus, Coxsackie virus, Ebstein Barr Virus, etc. all cause weight loss.

Do you feel that in general there is a higher association between CFS-ME and weight loss or weight gain?

I hear both sides of the story: Some have gained a few pounds and others have never regained the weight lost from the onset.

 

[SaveMe]

Sorry forgot to add something

http://www.cdc.gov/cfs/general/case_definition/index.html

 

[fla]

You might need to break down weight loss/gain into a few ranges in number of lbs. Lost 30 lbs and lost 5 lbs are not the same.

 

[SaveMe]

You might need to break down weight loss/gain into a few ranges in number of lbs. Lost 30 lbs and lost 5 lbs are not the same.

Good suggestion, and thanks for trying to make my thread more accurate--I really do appreciate that.
I apologize though, as I have no way of editing the options. I just wanted to get a general idea on the weight change(s). A few pounds would be statistically insignificant, therefore, the option of neither is appropriate in that situation.

Also, another reason for keeping it general was to ensure that the voter feels comfortable in answering the poll question.

 

[SaveMe]

hard to tell sometimes...

In addition, sometimes if may be difficult to decipher whether ones weight changes are a result from a specific diet, exercise, supplement, medication etc., so I would like for the voter to use their best judgement here.

 

[filfla4]

I have gained a lot of weight over the period I have been unwell (18yrs). However I find it remarkable that I have lost 12kg (26lbs) since I started KDM's treatment a few months ago, without really trying, ie I'm still eating well and I'm not exercising. The key for me has been the intolerances which I have cut out (lactose/fructose) and also following dietary recommendations of Christine Tobback (KDM's nutritionist). She recommends cutting out all cane sugar and using rice syrup instead, plus going low in gluten (even tho I'm not intolerant), eating a lot of rice (white), protein (fish/chicken) and some veg, mostly greens, all topped with generous quantities of a good olive oil. This is key as the oil helps the digestion. Essentially "clean" food, no heavy sauces or stews, no herbs and stock cubes, just salt. What I have found is that my stomach is simply so much more comfortable that I don't need to snack and I also don't get those carb cravings any more.

 

[pine108kell]

I really think you need a 4th option here: both.

I'm a 6'1" male. When I first got sick my weight (seems like mostly muscle) literally melted away daily. I could feel the muscle mass softening and breaking up and could tell it was then disappearing. Largely because of muscle wasting, I went from 185 to 138 pounds in just a couple months. It was pretty clear I was dying, which would have been a relief actually.

After a year I started putting on weight and feeling better. This was same time I was taking antibiotics for lyme but don't know if that is the reason.

After 9 years of illness, I have now gradually ballooned to 205 pounds and having difficultly keeping it down even though I am decreasing my calorie intake. The biggest problem is that for a few years there I was able to exercise, which kept me below 200. But the past year for some reason I cannot exercise again. Not only do I weigh too much, but too much is fat compared to muscle, which was not the problem when I was well.

Just as my condition waxes and wanes, I have periods when I still have muscle wasting and then gradually seem to get most of it back. The wasting can happen very, very quickly--just a few weeks and is very obvious to see.

 

[justy]

Hi, i agree with Pine 108kell that you need a both option. When i first relapsed i lost A LOT of weight and then as i started to stabilise i have re gained all the lost weight and then some more. Now i am a bit overweight and despite being on a gluten free, meat free dairy free sugar free wholefood diet i still cant lose weight and continue to gain. I am now a bit more active than i was but this also doesnt affect my weight gain.

 

[meadowlark]

I lost about forty pounds in six months when I was diagnosed. In the decade since then I've gained a lot back .... but due to a sedentary lifestyle. It's not the direct result of ME/CFS.

 

[SaveMe]

I really think you need a 4th option here: both.

I'm a 6'1" male. When I first got sick my weight (seems like mostly muscle) literally melted away daily. I could feel the muscle mass softening and breaking up and could tell it was then disappearing. Largely because of muscle wasting, I went from 185 to 138 pounds in just a couple months. It was pretty clear I was dying, which would have been a relief actually.

After a year I started putting on weight and feeling better. This was same time I was taking antibiotics for lyme but don't know if that is the reason.

After 9 years of illness, I have now gradually ballooned to 205 pounds and having difficultly keeping it down even though I am decreasing my calorie intake. The biggest problem is that for a few years there I was able to exercise, which kept me below 200. But the past year for some reason I cannot exercise again. Not only do I weigh too much, but too much is fat compared to muscle, which was not the problem when I was well.

Just as my condition waxes and wanes, I have periods when I still have muscle wasting and then gradually seem to get most of it back. The wasting can happen very, very quickly--just a few weeks and is very obvious to see.

Interesting, Pine108kell.
When you say you had that sudden, dramatic weight loss--was that following a flu-like illness or some other virus?
If not due to the antibiotics, how do you think you turned around and gained that weight back?
I ask because I initially lost 15 maybe 20 pounds rapidly, and never gained it back.

 

[SaveMe]

Hi, i agree with Pine 108kell that you need a both option. When i first relapsed i lost A LOT of weight and then as i started to stabilise i have re gained all the lost weight and then some more. Now i am a bit overweight and despite being on a gluten free, meat free dairy free sugar free wholefood diet i still cant lose weight and continue to gain. I am now a bit more active than i was but this also doesnt affect my weight gain.

Hi Justy, if you guys dont mind, maybe you can check off both weight gain and weight loss. Did your weight drop follow a flu-like illness as well and what do you think shifted the weight the other way?

 

[SaveMe]

I lost about forty pounds in six months when I was diagnosed. In the decade since then I've gained a lot back .... but due to a sedentary lifestyle. It's not the direct result of ME/CFS.

Oh so you would say the direct result of me-cfs would be weight loss.right?
Yes, other factors such as a sedentary lifestyle, exercising, meds, supplements, etc. would skew the numbers, so some may have no way of telling.

 

[SaveMe]

I guess a better question to have asked would have been "Did you lose weight during your onset with ME-CFS?"

Looks like we almost have a tie here--interesting, because I was expecting a clear cut winner

 

[Athene]

Yes, we definitely need a "both" option. I ticked both gain and loss, because my weight yo-yos.

Since getting ill about 26 years ago have gone constantly up and down between 7 stone and 11 stone. (I am 5 feet seven, just to give perspective. 7 stone is very badly underweight, 11 stone is pretty flabby). It is never stable, it is always on the way up or down, and bears absolutely no relation whatsoever to my calorofic intake. I have often gone from one extreme to the other in less than 2 months.

BTW saveme, I didn't take any meds ever until 2 years ago and there were no other factors that I could observe over the decades that explained the weight gain/loss or what would trigger the sudden switch from one phase to the other. When I saw Kenny De Meirler he said we PWCs have no control over our weight because our livers are sick. However he didn't elaborate on this, and he is prone to throwing out BS statements that he later denies, so I don't know if there is actually any science behind this...

Generally, weight loss phases correspond with my symptoms and energy improving and weight gain corresponds with a downhill period. Any other of the yo-yo people find this?

 

[faith.hope.love]

I gain and lose about 20 lbs every year. But I don't think it's necessarily "caused" by this disease. I just like to eat, and I'm too tired/sick to exercise. As soon as the scale hits a number that I don't like, the dieting begins. Low carb/high protein works well for me. I usually get sicker when I diet, so I try to ease into it, and give myself breaks from it as well. I also have hypothyroidism and PCOS, so I blame my crappy metabolism on that. (I'm not overweight by any means, I just like to stay thin.)

 

[George]

What about research showing elevated levels of neuro peptide y? (klimas 2010). Dr. Klimas has advocated using this as a bio marker for ME-CFS. neuro peptide y enhances the desire to eat and the bodies ability to store fat. I have weight gain, over 50 lbs.

 

[SaveMe]

neuro peptide y-- interesting, I will look more into that. Well, I am quite astonished by these results. For sure, I thought I would see a striking difference.

 

[leaves]

What about research showing elevated levels of neuro peptide y? (klimas 2010). Dr. Klimas has advocated using this as a bio marker for ME-CFS. neuro peptide y enhances the desire to eat and the bodies ability to store fat. I have weight gain, over 50 lbs.

That's interesting, I know my hormone troubles are caused by low leptin, a peptide y inhibitor.

 

[Wonko]

Generally, weight loss phases correspond with my symptoms and energy improving and weight gain corresponds with a downhill period. Any other of the yo-yo people find this?

yes
it seems when I'm relatively ok I can lose weight on a diet of over 3000kcal a day - when I'm crashing I rapidly put on weight on only 1200kcal/day (and I cant really eat less than this) which is bizarre as I should burn twice that in a coma.

for years I'd follow the cycle of gaining whilst ill and losing whilst recovering ending up roughly the same weight over a cycle - took a coupel of weeks to put on a stone and a month or more to lose it but it seemed to balance out.

around 6 years ago that balance shifted and I wasnt "well" for long enough in between downturns to lose all the weight I put on - so my weight started creeping up 7lb here, 14 there - it mounts up over a few years.

 

[Athene]

Interesting thing I just learned!!!

Well, apparently vitamin D is essential for your body to be able to burn up fat. Failure to burn up fat is apparently a symptom of Vitamin D deficiency. It is the usual situation in thyroid deficiency.

Since I have had my vitamin D level tested several times I know that it is sometimes too high and sometimes too low. So now, I am wondering if I gain weight when it is too low and lose it when I get up to normal or too high? This fits with the tests I have had over the last 2 years, where I started off thin, got thinner/scrawny and then gained weight more and more on the De Meirleir Vitamin D avoidance treatment.
Not enough data obviously, but an interesting thought...