Weight loss and weight gain poll

[hixxy]

This poll is in response to a post by @charles shepherd in another thread asserting that ME never causes weight loss as a part of it's disease process. A snippet from his post:

Weight loss is not a symptom of ME/CFS and does not form part of the underlying disease process in ME/CFS. In fact, many people with ME/CFS report that their weight has increased due to the restrictions on activity and exercise that this illness imposes.

I would have liked to separate based on gender in the poll but there didn't seem to be a tidy way to do it. Just from observation I suspect weight loss is more common in males.

 

[Thinktank]

Since being ill, i've lost 20kg, mostly muscle mass.
I'm now badly underweight. It doesn't matter how much i eat, it doesn't put back on.

 

[hixxy]

I personally have lost 10kg from an already slim frame and if I ever gain weight back its only ever fat, never lean weight.

A friend of mine lost a bunch more than me and is gaining it back at the moment through l-carnitine supplementation (so certainly ME related).

 

[rosie26]

I lost over 10kg at severe onset and I was thin for quite a few years after that. I have never made up the weight I lost but am now slightly over 60kg. My normal weight used to be around 65kg which is a good weight for my height.

 

[Fred1234567]

My weight loss was caused by food intolerances that emerged as part of ME/CFS. Once the food intolerance starts were identified I ate like crazy until all the weight came back on and then settled on the heavy side of normal.

 

[halcyon]

I rapidly lost more than 10 pounds right at onset and then gained back 20.

 

[hixxy]

I'll add an option for large fluctuations in weight.

 

[ryan31337]

I've always leaned towards underweight unless I actively eat more than my hunger dictates. The exceptions to this have been when on certain medication known for weight gain (pizotifen for migraine) and more recently, significant reactive hypoglycemia, both of which made me feel more hungry than appropriate.

 

[Keela Too]

I rapidly lost more than 10 pounds right at onset and then gained back 20.

Ditto

 

[Apple]

I don't think he was saying that M.E never causes weight fluctuations, just warning that it's not a classic symptom (which it isn't) and should absolutely be investigated for more sinister causes.

I have had serious weight loss over the years as a result of awful digestive problems (I was suspected to have crohns at one point, fortunately not). At my worst I weighed less than 6.5 stone (91 lbs). When my gut calms down I generally gain the weight back. Although i am currently underweight due to a flare up and appetite loss. I consider this a separate issue to my ME/CFS.

 

[dannybex]

This poll is in response to a post by @charles shepherd in another thread asserting that ME never causes weight loss as a part of it's disease process.

With all due respect to Dr. Shepherd, he's wrong.

From the Canadian Consensus criteria:

"Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change - anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress."

http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

With all the gut issues we have I would guess it's more common than we think. I've lost a lot of muscle during the last five years, mostly in my legs, plus know at least four patients in my own little world who have lost even more.

Look at Whitney Dafoe's tragic case. If that isn't weight loss I'm not sure what the doctor would call it.

 

[dannybex]

Here's a clip of Ben Di Pasquale, who's been bedridden for at least 6 years. Used to post here years ago...

 

[*GG*]

I was only skinny as a kid. My weight goes up to obese, lost 20lbs this year/summer due to diet and exercise. Still a little chunky, might do a diet to get down to "normal", whatever that is for me.

I think the BMI index is a poor fit for my body type, but maybe I just think that to make myself feel better. LOL Big boned

GG

 

[NL93]

I am naturally slim, gained a little but not much since having ME. My body does look quite different though, I have lost a lot of muscle mass and gained fat. I am now "skinny fat", having normal body weight (BMI of 21) but relatively high fat percentage. It's annoying me, but there's really nothing I can do about it.

 

[ScottTriGuy]

I clicked "some weight loss" because although my overall weight has stayed about the same, I already had low body fat from triathlon training when I got sick - so I've lost a lot of muscle and put on some fat so its a wash.

I used to have a very strong appetite. "I'm hungry" was the most frequent expression out of my mouth. Now I do not experience hunger nearly as intensely nor as often - now I eat because its time to eat / take meds, not because I'm hungry.

 

[Zombie_Lurker]

I am a mostly homebound guy with ME and have a very hard time keeping the weight off. I only eat a small meal once a day (and am hungry all the time!) and am still obese. I rapidly gain weight if I eat a large meal, snack or eat more than once a day. It's not like I can exercise, either.

 

[Sushi]

Maybe you could also add an option for no weight changes. That is my experience.

 

[joeblow604]

I was about 170lbs at the beginning of the illness and just over a year later I was down to 90lbs my lowest. Stayed in the 90's for around 4 years and just recently gained 10lbs for no real reason. Its seems to be fat on the belly though

 

[hixxy]

Maybe you could also add an option for no weight changes. That is my experience.

That's what "Insignificant weight gain or loss" is for.

 

[AndyPR]

I voted for significant fluctuations, I lost quite a lot of weight due to digestive issues/reaction to gluten, once that went I put the weight back on plus extra - now I'm just cuddly, there wasn't an option for that.