On-going supplement poll

Messages
91
Likes
94
Location
UK
Hello everyone

I've been greatly helped by a couple of supplements recently (acetyl-l-carnitine and d-ribose) but it took me ages of trawling the forum to find the things that most people seemed to be finding the most helpful (thanks to everyone who has posted about their supplements).

So... as a software developer (at least I was until CFS/ME got me) I thought that what we really need is a CFS/ME supplement poll with all the supplements listed and people's ratings (and a comment). And I thought, I can write one of those, so I have.

You can find it on my website at:

http://www.storiesoutloud.co.uk/supplements/pollresultsall.py

I'm hoping it will become a valuable resource for anyone wanting to try supplements to ease their symptoms. I've added links to Wikipedia and Pubmed under each of the supplements to help people read up. And there's a link to search amazon for those who want to shop around for the best price.

There's not much on it at the moment, but if anyone else thinks it's a good idea, please add your vote.

Thanks
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,091
Likes
8,566
Location
australia (brisbane)
to add to your list, pregnenolone, creatine, n acetyl cysteine, alpha lipoic acid, adrenal extracts, siberian ginseng, korean ginseng, withania, astragalus, licorice, acetyl tryosine, 5 htp, tryptohan, curcumin, glucosamine, melatonin, kava, valerian. Im sure there are a few more common ones.

cheers!!!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
hi, I think this kind of info gathering is a great idea. But still, the voting process seems a bit cumbersome. Also, it demands a comment - so after my first vote I left. I don't want to be critical but I think you'll get more data by making it easier. Good luck :)
 

taniaaust1

Senior Member
Messages
12,836
Likes
15,036
Location
Sth Australia
I think you should put a explaination of what the different readings mean on the main page so people who havent done the survey but are looking at it.. can see that 3 points means "made no difference" etc otherwise people just looking at this will think certain things are helping us a lot which arent (it also will give those psych field a huge laugh as they could then use your link to say just giving us chocolate helps as thing says what the stars mean).

I also nearly didnt rate anything as I had no idea what each star would mean till I clicked the thing to enter info (I think that will put a lot of people off of voting).

(to all when one goes to put info in..it does then clearly explain so you can rate).
 
Messages
91
Likes
94
Location
UK
Thanks for the feedback. I've added the suggested supplements. There's also a 'Missing supplement name' field on the vote page for letting me know of supplements you would like added and a 'Supplements already suggested' link to see what's waiting to be added.

I'm sorry you felt that it 'demanded' a comment, you can just put a '.' or '-' for the comment if you don't want to leave one (and people have), but it's very helpful if people can at least say what their dose was. I've noticed on this forum that's one of the most common things people ask when someone says that a supplement is helping them.

Sadly I'm all out of energy to develop it further, so I'll have to leave it as it is. I really hope it's helpful.
 
Messages
91
Likes
94
Location
UK
I think you should put a explaination of what the different readings mean on the main page so people who havent done the survey but are looking at it.. can see that 3 points means "made no difference" etc.
Yes, I see you what you mean about explaining what the points mean. Hopefully when I'm feeling a little better I can do something about that.
 

taniaaust1

Senior Member
Messages
12,836
Likes
15,036
Location
Sth Australia
One issue with it is that when one adds a supplement.. one cant see if its gone throu or not as ones comments etc are still sitting in the box. Heaps.. it allows you to add supplements if you click the thing (if its working.. I dont know if mine are going throu)
...

I had issues with the Vitamin B12 part as the forms werent separated and B12 in tablet form helps me none but B12 injections which are available without prescription and over the counter in Australia.. they help me greatly. So Ive tried to add the different forms in so I can vote both no effect and helps greatly. I should of added it was hydroxocobalimin form of B12.

(some people also have side effects from some types of B12 but may be okay with others)
 
Messages
91
Likes
94
Location
UK
I think it might be more confusing to have different forms of supplement (tablets, injections etc) as different options. I think what you've said about your B12 experience would be the perfect thing to say in a comment under a Vitamin B12 vote, i.e. it helped you greatly but only as an injection
 
Messages
91
Likes
94
Location
UK
One issue with it is that when one adds a supplement.. one cant see if its gone throu or not as ones comments etc are still sitting in the box. Heaps.. it allows you to add supplements if you click the thing (if its working.. I dont know if mine are going throu)
You need to click the 'Submit' button at the bottom of the vote page for your vote to go through. You'll know if it has as you'll get a 'thank you' message at the top with the name of the supplement you've added/requested in bold, and the form will clear so that you can make another vote.
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,236
Location
Scotland
This is a great idea - but ( how did you know that word was going to appear?:rolleyes: )
I believe that certain supplements are meant to be used in combinations.

For example, I believe that acetly-l-carnitine is meant to be used with both D-ribose AND Co-Q-10.

I find I get great help from the carnitine - it helps prevent payback, and that's what I use it for, occassionally.
I can't afford the stuff every day.

I tried Co-Q-10, the proper horribly expensive stuff, on it's own for 3 months - and it was a nightmare - I lost last summer to it.
I haven't yet forked out for D-Ribose or tried it. It's really expensive.

I don't know, now, if I'd been taking D-ribose and carnitine with the Q10, if I'd now be running up hills again.
But I'd have to go looking for a much wealthier toyboy first.
 
Messages
91
Likes
94
Location
UK
I thought about adding supplement combinations, but it's way too complicated. I'll have to rely on people putting that sort of thing in their comments.

I can't believe how many supplements I have been asked to add - I haven't even heard of some of them :)

If you'd like to try the acetly-l-carnitine more often, the powder is much cheaper than the capsules. Send me a private message and I'll let you know where I get mine from (I live in Scotland). I don't want to be accused of advertising if I put it here.
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,236
Location
Scotland
I'm in Dundee myself - another Scot - Yay!
There's only one brand of Carnitine - and it's a complex, that does work for me. I've tried different brands, the cheaper ones tend to be just L-carnitine. I've tried the H&B one, I've tried the Bio-pharma one. Nothing.
However, I sent the stuff to a friend with FM, who is also on some atypical antidepressant which actively depletes the body of carnitine. He uses the stuff I can't - and it does him the world of good.
I've nagged him to ask his gp for carnitine, to counteract these ghastly side-effects - the gp laughed at him - and refused.
 

taniaaust1

Senior Member
Messages
12,836
Likes
15,036
Location
Sth Australia
You need to click the 'Submit' button at the bottom of the vote page for your vote to go through. You'll know if it has as you'll get a 'thank you' message at the top with the name of the supplement you've added/requested in bold, and the form will clear so that you can make another vote.
I found out that all the ones I thought I may of added requests for didnt go throu as that thank you message didnt appear. So ended up redoing them all again (i bet a lot of people may do the same as I did and then leave not knowing it didnt work) The issue is.. if one goes to add one but also comments and also ticks the rating box AT THE SAME TIME as adding one.. then they dont go throu but one is left thinking they may of done if one dont know that thank you message always appears if it worked (there is nothing there which says when adding one.. to not try to rate or fill out the comment box at the same time so hence many will try this and it doesnt work when you do).

I also did a request for B12 injections to be added. Where I are (in Australia) they arent prescription as they can be gotten over the counter. These need to be done separately on the supplement list as for many of us (myself included) normal B12 pills havent helped but B12 injections have (ME/CFS specialists used to commonly recommended injections).
 
Messages
91
Likes
94
Location
UK
If you fill in everything you get a message at the top (in red) saying "Please select "Supplement name" and "Rating" and enter a "Comment" OR enter a "Missing supplement name"." so hopefully people will know that they need to do either/or.

I don't want to add different forms of supplement as different options as there are just too many (tablet, capsule, tincture, tea, lozenge, wafer, spray, just to name a few). Please could I ask you to vote for the form that worked best for you and say in the comment the form you used. You could also mention in the same comment that tablets didn't work for you.
 
Messages
91
Likes
94
Location
UK
If you fill in everything you get a message at the top (in red) saying "Please select "Supplement name" and "Rating" and enter a "Comment" OR enter a "Missing supplement name"." so hopefully people will know that they need to do either/or.
I'll try and add a bit to this 'red' message to make it clearer. Sorry you had to enter them all again.
 

penny

Senior Member
Messages
288
Likes
143
Location
Southern California
Yeah, this is not an easy thing to make quantitative. Thanks for the effort tandrsc! I've added my ratings and a few more supp's.

[I did struggle a bit with the ratings. In general the improvements are so small that "It helped me a lot" seems overstating some of my reactions, but I still used this for the few things that I know help and I'd be most reluctant to stop taking. I hope this doesn't skew the results...]
 

taniaaust1

Senior Member
Messages
12,836
Likes
15,036
Location
Sth Australia
This is much better now and clear. Thanks for changing things and making it so for people.
..........

the comments thou.. It does force one to make a comment thou when rating a supplement and that is just causing me to just repeat what Ive already ticked by the box. (so just giving needless comments for people to read).
 
Messages
91
Likes
94
Location
UK
This is much better now and clear. Thanks for changing things and making it so for people.
Thanks :)

the comments thou.. It does force one to make a comment thou when rating a supplement and that is just causing me to just repeat what Ive already ticked by the box. (so just giving needless comments for people to read).
I'm guessing that your comments are the latest ones and I think they're great. You've added lots of useful stuff.

It's so useful to know how something helped, e.g. with pain, ibs, fatigue or something else (and the dose is handy). And it's so useful to know how something made things worse, e.g. headaches, nausea, insomnia or something else. I agree that there may not be much to say if something made no difference, so I'll see if I can auto-fill with something if someone selects that option.

Thanks again.