On-going supplement poll

[GcMAF Australia]

Excellent idea & damned good site
here are some

• Cod Liver Oil
  Omega 3 (which is in fish oils and flax seed)
• coconut oil which contains monolaurin (or monolauric acid?)
• This one is already there BUT N-acetylglucosamine (GlcNAc), which is similar to but more effective than the widely available glucosamine, it is the active form. In one study 8 of 12 children with GlcNAc treatment resistant auto immune inflammatory bowel disease improved significantly
• Colostrum (contains monolaurin and possibly GcMAF form of VDB)

 

[tandrsc]

Excellent idea & damned good site

Glad you like it.

I've added your suggestions. Just to let you know, it's possible to request new additions via the site, there's a 'Is your supplement missing?' link on the vote page.http://www.storiesoutloud.co.uk/supplements/request.py

 

[tandrsc]

Does anyone think it's worth asking for this thread to be sticky?

 

[Binky123]

This is an excellent idea and formatted nicely thanks for setting this up. I think it should be stickied.

 

[taniaaust1]

I think it should be stickied too as you have put it together very well.. with more votes and comments this info could help a lot.

 

[taniaaust1]

or maybe if you ask.. they could include a link to your poll in a spot on the site where everyone can see it easily. (with many more votes.. maybe Cort could do a write up on the results or something).

This is the kind of info many need to know esp since so many dont have good doctors and hence trying to treat ourselves and hence many only do have supplement options available to them.

 

[tandrsc]

A very nice person has spotted this and made it sticky. I hadn't gotten around to asking yet.

I've been very flattered by the response. Thank you to everyone.

 

[loayachil]

Thank you very much Tandrsc,

I found this very useful and after I finish some tests I'll probably buy a bunch of think that are high on the list and start popping them.

Quick thought. Would it be useful to have two columns, one that rates how useful a specific vitamin/nutrient may be and the other on whether people experienced negative affects. If a drug is useful for some and not detremental at all, while another is very useful to some but also has serious side affects for others, might cause both to be rated the same, but people will have different approaches to trying them. Differentiating them might be useful for people to see what has more side affects and what cannot hurt and may be useful.

Just my two cents (and even my last two cents are fogged up)
Lo

 

[tandrsc]

Thanks for the feedback. I'll have a think and see what I can do.

In the meantime, if you move your mouse over the ratings bar you'll get a tip text with a breakdown of the number of votes. This includes a line like good = 1, bad = 2, indifferent = 3 - good is the total of 4, 5 and 6 point votes, bad is the total of 1 and 2 point votes and indifferent is the 3 point votes. Hopefully this will make it a bit easier to gauge the sort of info you are after.

 

[taniaaust1]

just added my latest failed supplement trial onto it.

Thank you very much Tandrsc,

I found this very useful and after I finish some tests I'll probably buy a bunch of think that are high on the list and start popping them.

When you are choosing what supplements there to take.. dont just pick the highest ones on the list but make sure that the ones you are considering taking are also good for whatever symptoms you have (this is extremely important when choosing supplements).

 

[tandrsc]

If a drug is useful for some and not detremental at all, while another is very useful to some but also has serious side affects for others, might cause both to be rated the same, but people will have different approaches to trying them. Differentiating them might be useful for people to see what has more side affects and what cannot hurt and may be useful.

Just my two cents (and even my last two cents are fogged up)
Lo

Lo - I've added the information you suggested. There is now 'bad = %' text at the end of each line. This is the percentage of votes where the supplement made someone worse (1 and 2 point votes). If it didn't make anyone worse, the 'bad = %' text isn't displayed at all.

I've also added smileys:

Happy face: There are more good votes than bad (i.e. the total number of 4, 5 and 6 point votes exceeds the total number of 1 and 2 point votes)
Sad face: There are more bad votes than good (i.e. the total number of 1 and 2 point votes exceeds the total number of 4, 5 and 6 point votes)
Neutral face: The number of good and bad votes is the same (i.e. the total number of 4, 5 and 6 point votes matches the total number of 1 and 2 point votes)

If you move your mouse over the smiley, tip text will say what it means.

 

[AFCFS]

This is a good idea and a great site. Thanks.

Hello everyone
So... as a software developer (at least I was until CFS/ME got me)
Thanks

Reminds me of "‪So you want to be a software engineer‬" on YouTube

 

[taniaaust1]

I just love that face idea you've put on it.

Its quite startling to see that some things which one would never think would give anyone a bad reaction, have actually done so.

 

[manoka]

Many thanks for this terrific poll and resource list!
Exactly what I was looking for.

Here are a few more suggestions:
- It should be seen as mandatory to indicate the complete product and brand name(s) - as reportedly even two products with the same ingredients can have different effectiveness.
- The same goes for indications about in which respect the product was beneficial or detrimental.
- The same goes for indications about the dosage, the times, duration, whether taken before, during, after or away from meals, age, gender, severity of the symptoms, etc.
- It would be helpful if comments could be posted to the comments - e.g. in case there are uncertainties about the comments or if a recommendation can be added, etc.
- The list should also include diets and foodstuffs, their preparation, "dosage" etc.
- Not substance related treatments should be included as well (physical- and psychological exercises etc.).

A final thing to be considered is whether a indigestion- and/or toxicity issue exists, which often results in many substances not being sufficiently- or not at all absorbed.

All the best!

manoka

 

[tandrsc]

Thanks for the feedback manoka. Although, I think I might scare people off if I asked for all those things.

I just love that face idea you've put on it.

Thanks, I'm quite proud of them

 

[taniaaust1]

Many thanks for this terrific poll and resource list!
Exactly what I was looking for.

Here are a few more suggestions:
- It should be seen as mandatory to indicate the complete product and brand name(s) - as reportedly even two products with the same ingredients can have different effectiveness.

If something like that was made mandatory.. most of us then wouldnt be able to put in all our various experiences with supplements.. due to ME/CFS memory issues I cant remember much at all about what brands I used since I got this illness 15 years ago. All I mostly remember is the names of things I tried, what helped and what didnt and what caused bad reactions. (Ive tried almost half of the things on this list but if I'd had to put the brands in I used, I would of only been able to vote on a few.. most other long termers with the illness or anyone with bad memory issues would have the same issue).

 

[manoka]

I didn't write that they should be made mandatory, but "seen as mandatory".
I was just thinking about a list of things to be considered and to give an idea what might be crucial information to evaluate whether a product could be useful in particular cases.
Apparently some people do not know what to write as a comment, which makes their rating quite implausible - especially as the symptoms and causes of CFS are varied from one patient to another.

 

[bonesufferer]

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.

I had the same expereience with carnitine. This proves that a lot of supplements don't do quality control

 

[jbclem]

May I suggest an "EDIT" button. I forgot to mention the amounts of a supplement I take, and I didn't see a way to go back and add this information to my comments. Given the memory and concentration constraints we live with, this would be really useful.

John

 

[tandrsc]

I see your point, but it would be a lot of work to add an edit button. I would need to implement some sort of login so that people can only edit their own votes, and I think people might be put off by having to register in order to vote - I think I would be.

If you would like to send me a message with the date/time of your vote, what you voted for and what you would like to add to your comment, I can do it for you. The date/time is in italics above every comment so you can just copy/paste.

You're the first person who has said they want to change their comment