• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

I propose we create the Hamburger Helper index

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
A little background, i was very hungry and needed food, so i burned much of my functioning to make hamburger helper so that i could eat today and tomorrow
The idea is that like the Big Mac index for worldwide comparative purchasing power we can rate our ability (which involves more then just energy) for the day using this easy for normal people but hard for ME patients index. The idea is its a measure of our functioning for the day and allows us to compare day to day since its ability and various steps are affected by different parts of our condition making it a good barometer to work with. I'm assuming most members will know or have made this "simple" meal before
What do you think?

I know i'm new here so if something like this is already in use please let me know, and if i'm more delirious then my internal barometer thinks (i'm pretty bad right now) and making no sense please also tell me.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
I don't get it? Are we supposed to say whether we are a bun short of a Big Mac?
no, the idea you say how many hamburger helper equivalents of functioning you have today since its more then one step and takes more then one skill and our condition affects many skills and not at all evenly.
I'm at about 1.5, and have burned 1 already.
Yesterday i as at about 0.5 and could not prepare hamburger helper at all (and certainly not a more elaborate meal)
 
Last edited:

tudiemoore

Senior Member
Messages
161
Location
Southeast U.S.
I have been running at about 1.5 myself this week. Actually, I am fond of the Dropped Spoon data-gathering instrument and it has an immediate reward. In the kitchen (best place for this observation), drop a spoon on the floor and....if I just look at it and leave it there--important to know. But also of importance--what was on the spoon?

Ice cream? Bubble gum? Nothing? (it was just washed.) Bacon grease? All of this also figures in. See, also a simple
tool, we usually eat, are in the kitchen, etc. so it becomes a lab of sorts.


We could break it down to note specific symptoms--dropped spoon left on floor for a day or two--pain bothering me, h'burger helper--stomach acting up?
Somebody else can work on this--I am going to brush teeth, etc., go to bed. No flossing, just brushing? It must be the sore throat thing...
Well, anyway...
tudiemoore
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
How is this different from spoon theory, which is already being used?
I've never heard of that one, i read the wikipedia article, similar idea, except that with ME there are different deficits, today i may be delirious and tomorrow extra exhausted. Since combinations of skills are needed to live successfully and food is a very difficult daily ME challenge the idea is to measure total functioning, or at least whats needed for daily living.
I guess that can be considered spoons as well, though i may have more mental then physical spoons depending on the day. I have had very few math spoons for years now, though i could still make a simple meal today.

Being able to make a meal is a quantitative measurement unit, a spoon is a surrogate for number counting

Maybe i'm just high on brain damage right now
 
Last edited:

tudiemoore

Senior Member
Messages
161
Location
Southeast U.S.
Oh, now I'm upset! THAT spoon theory is about keeping up with the spoons you can use, isn't it? This is totally different. This has the potential to become a ground-breaking data-gathering instrument! Along with the HH of course.
tudiemoore
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
Oh, now I'm upset! THAT spoon theory is about keeping up with the spoons you can use, isn't it? This is totally different. This has the potential to become a ground-breaking data-gathering instrument! Along with the HH of course.
tudiemoore
the HH is not a lie, but it disappears too quickly
i also can't afford cake
 

Murph

:)
Messages
1,799
I am an Australian and when you say "hamburger helper" I get a vision of someone who sits at my elbow wanting to hold my hamburger while I chew it, wipe my chin to get off any crumbs, etc.

what is hamburger helper?
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
I am an Australian and when you say "hamburger helper" I get a vision of someone who sits at my elbow wanting to hold my hamburger while I chew it, wipe my chin to get off any crumbs, etc.
LOL! I have to admit there are Aussie terms i had never heard of, spitting the dummy for example

what is hamburger helper?
Its a meal made from browning ground beef in a frying pan, then adding the package which is made of pasta, seasoning, water and sometimes milk and bringing to a boil for 10-15 minutes. This assumes you have the clean dishes to accomplish all this and the energy. Its a relatively simple to make meal (simple for non ME/CFS people of course).
The reason i suggest this meal is because its a bit harder then making sandwiches but much simpler then an elaborate meal many of us would never be able to prepare on our best days.
 

Neunistiva

Senior Member
Messages
442
This kind of ignores us severe ones. I haven't been able to get out of bed in 2 years, and would certainly not be able to cook anything, so I guess I've been a zero all thos time? But my energy level fluctuates quite a bit. And I am still miles above someone like Whitney Dafoe who can't eat or speak.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,000
This kind of ignores us severe ones. I haven't been able to get out of bed in 2 years, and would certainly not be able to cook anything, so I guess I've been a zero all thos time? But my energy level fluctuates quite a bit. And I am still miles above someone like Whitney Dafoe who can't eat or speak.
I'm so sorry to hear that, it does not ignore you at all, it shows your severity, your @ <1.0 HHi which is very bad :cry:
I worry what will happen if i get to that point, i have no family who would take me in and i could not live in my current place at that point, so i would end up homeless and starve :(
Perhaps we could argue that below 1HHi permanently means one can't live independently?

Its a scary thing to consider and i just hope Dr Davis and OMF figure out the etiology and a treatment.
 
Last edited:
Messages
1,478
LOL! I have to admit there are Aussie terms i had never heard of, spitting the dummy for example


Its a meal made from browning ground beef in a frying pan, then adding the package which is made of pasta, seasoning, water and sometimes milk and bringing to a boil for 10-15 minutes. This assumes you have the clean dishes to accomplish all this and the energy. Its a relatively simple to make meal (simple for non ME/CFS people of course).
The reason i suggest this meal is because its a bit harder then making sandwiches but much simpler then an elaborate meal many of us would never be able to prepare on our best days.

Ahh I understand now...we don't have those in the uk either. I would say a ready meal that you put in the oven might be more generic?

But whose to say people don't do that anyway. I normally cook from scratch if I have the energy, but a load of fit and healthy people don't cook because they just don't.

I would say at least half the uk population use convenience foods (reheat meals or use less than 5 steps in their meal preparation using cheats like a jar of sauce etc). .....it's a trend imported from America. If you look at somewhere like Italy or France etc the figure is a lot lower.

The scale only really works if you were inclined to cook from scratch in the first place? You also have so many meals that are 15 minutes or less to prepare. Making pasta carbonara for instance only needs an egg, some Parmesan, lardons, seasoning, pasta and can be prepared from scratch in less than 15 mins. It's technically cooking from scratch?

Maybe a better way of using food to gauge energy etc would be to ask a more generic question "how much time do you spend preparing your main meal of the day? with some options?

I can normally prepare my own food and cook from scratch taking up to or longer than 45 minutes
I can take 0-30 min but sometimes need to rely on convenience foods
I struggle to prepare a meal for myself that takes longer than 15 minutes and sometimes need to use convenience foods
I rely solely on low preparation convenience foods
I can't prepare my meal at all and rely on others for this
 

mirshine

Senior Member
Messages
469
Location
Dublin, Ireland
I can normally prepare my own food and cook from scratch taking up to or longer than 45 minutes
I can take 0-30 min but sometimes need to rely on convenience foods
I struggle to prepare a meal for myself that takes longer than 15 minutes and sometimes need to use convenience foods
I rely solely on low preparation convenience foods
I can't prepare my meal at all and rely on others for this

I like this scale. I'd be either low prep convenience or less than 15 mins, depending on the day.
 

mirshine

Senior Member
Messages
469
Location
Dublin, Ireland
I am an Australian and when you say "hamburger helper" I get a vision of someone who sits at my elbow wanting to hold my hamburger while I chew it, wipe my chin to get off any crumbs, etc.

:D I love this image. In Ireland I don't think we have anything like it. I was picturing Ronald McDonald !
 

purrsian

Senior Member
Messages
344
I am an Australian and when you say "hamburger helper" I get a vision of someone who sits at my elbow wanting to hold my hamburger while I chew it, wipe my chin to get off any crumbs, etc.

what is hamburger helper?
We can actually get hamburger helper in Aus, I buy it from Woolies but I think it's also in Coles. In the herbs and spices section. I just use half a pack in 500g of mince, add some bbq and tomato sauce, and bam patties done. It's just powdery stuff with flavour. Much easier to make patties than proper way.
 

L'engle

moogle
Messages
3,200
Location
Canada
I never understood the point of that stuff because you have to add all the real ingredients anyway. pan fried meat with a little olive oil, salt and lemon is fine and actually easier to make.