On-going supplement poll

[Allyson]

Thank you for doing this work for us.

tandrsc

Yes thanks indeed and it is a big job
I know wilddaisy did a similar thing on the Me cfs forums a tow or three years back so i imagine it may still be there - she had compiled a comprehensive a list of all possible treatments for people to tick and or comment on - inlcuding chocolate and it was a big list.
Good luck with it.

Ally

 

[taniaaust1]

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

I wanted to add something more to one of my comments in the past too (forget now which one) but would be put off if I had to register to vote. I try to keep my life as simple as possible and often avoid places where I have to sign in (thank god many places one can stay permanently signed in).

 

[tandrsc]

I know wilddaisy did a similar thing on the Me cfs forums a tow or three years back so i imagine it may still be there - she had compiled a comprehensive a list of all possible treatments for people to tick and or comment on

Thanks for the heads up. I'm waiting for my register confirmation for mecfsforums.com so that I can do a search. I found a list of treatments on the wiki, but nothing like you describe. There wasn't anything stickied on the 'Treatments' board either. I'll post if I can find it.

 

[Allyson]

yes WD is a moderator there and very helpful so maybe PM her
- GL


A

 

[taniaaust1]

tandrsc

Yes thanks indeed and it is a big job
I know wilddaisy did a similar thing on the Me cfs forums a tow or three years back so i imagine it may still be there - she had compiled a comprehensive a list of all possible treatments for people to tick and or comment on - inlcuding chocolate and it was a big list.
Good luck with it.

Ally

thanks ally, I hadnt realised one was also done for the supplements too. They had a great one for the prescription meds. (Im going to go to the site and check out the supplement one sometime).

 

[Allyson]

thanks ally, I hadnt realised one was also done for the supplements too. They had a great one for the prescription meds. (Im going to go to the site and check out the supplement one sometime).

Yes I am sure a chocolate was on it and i rmeber contacting Wild Daisy to get her to specify the type of chocolate - IMO while dark chocolate will help ( vasoconstrictor and a stimulant ) milk "chocolate" will be no better than sugar -
....
.... Priorities eh!

An i know it included massage and things like that too.

WD had all hte data and was looing for hlp to compile it into searchable and meaningful info - mammoth task.

WHile you are there, there was also a post there once that listed ALL the known symtoms of ME/cfs - compiled by a woman called Katherine or maybe Kathleen ( not a forum member i don't think) who had copyrighted it but given permission to share with acknowledement.



I would love copy of that now if you - or anyone else reading - should happen to see it there.

(An also some instructions someone kindly once sent me there on how to measure blood pressure accurately to detect a postural drop in ME/cfs - that is how mine was finally detected)

Cheer and thanks in advance.

Ally

 

[tandrsc]

thanks ally, I hadnt realised one was also done for the supplements too. They had a great one for the prescription meds. (Im going to go to the site and check out the supplement one sometime).

Here are the links I found:

- Prescription survey results (includes some vitamins) - http://www.mecfsforums.com/index.php/topic,13093.0.html
- A smaller poll someone did previously - http://www.mecfsforums.com/index.php/topic,3946.0.html
- An interesting compilation of many surveys - http://www.mecfsforums.com/index.php/topic,5423.msg60770/topicseen.html#msg60770

I couldn't find any results for the non-prescription parts of Wild Daisy's survey, but they might not have been analysed yet.

 

[tandrsc]

WHile you are there, there was also a post there once that listed ALL the known symtoms of ME/cfs - compiled by a woman called Katherine or maybe Kathleen ( not a forum member i don't think) who had copyrighted it but given permission to share with acknowledement.

I would love copy of that now if you - or anyone else reading - should happen to see it there.

Here's the thread with the list you wanted - http://www.mecfsforums.com/index.php/topic,6928.0.html

The link for the online version is broken, but it's been attached to the first post so you can still download it from there.

 

[Radio]

This is a really good idea....Check out how i fully recovered from CFS....

http://forums.phoenixrising.me/index.php?threads/how-i-recovered-from-cfs.27280/

 

[tandrsc]

This is a really good idea....

Thanks - I thought so

Well done on your recovery.

 

[Radio]

Thanks - I thought so

Well done on your recovery.

Thanks, My work is not done yet...Check this out...http://forums.phoenixrising.me/inde...23andme-test-btd-gene-poll.27476/#post-418629

 

[Hip]

@tandrsc

I don't know it this is of interest to you, but here is the set of websites I have collected that list ME/CFS supplements and drugs:

ME/CFS medication medicine
Chronic Fatigue / Fibromyalgia Syndrome - Symptoms, Diagnosis, Treatment and Information
Lassesen.com
Treatment for Chronic Fatigue Syndrome
Anecdotal evidence of different CFS/ME treatments
Chronic Fatigue Syndrome
ME Treatments
Pharmacotherapy for CFS

 

[tandrsc]

@tandrsc
I don't know it this is of interest to you, but here is the set of websites I have collected that list ME/CFS supplements and drugs:

Thanks - I'll take a look.

In my poll, under each supplement, I currently have info links to the following sites:

http://www.ncbi.nlm.nih.gov/pubmed
http://umm.edu/health
http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html
http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs
http://www.webmd.com/vitamins-supplements/default.aspx

 

[Hip]

@tandrsc
I think your poll idea is very interesting one

Though the difficulty with a survey like this as that ME/CFS comprises a whole array of symptoms: fatigue, brain fog, sound or light sensitivity, PEM, "wired" mental state, generalized anxiety disorder or panic attacks in some cases, intestinal symptoms, especially in those with IBS, depression in some case, irritability, headaches, tinnitus, muscle aches, joint pains, increased allergies.

I find that a particular supplement will often only help only one or two of these symptoms. For example, I found N-acetyl-glucosamine to be spectacularly good for treating my generalized anxiety disorder, quite helpful for my "wired" state, and perhaps vaguely helpful for my gut symptoms and IBS, but not much else.

Perhaps it is beyond the scope of your project, but it would be a nice idea to have a set of symptom categories like those I listed above, so that a voter could select not only a 1 to 6 star rating to indicate how good a supplement is, but also select a symptom category to indicate what that supplement was actually good for.

 

[tandrsc]

@tandrsc
Perhaps it is beyond the scope of your project, but it would be a nice idea to have a set of symptom categories like those I listed above, so that a voter could select not only a 1 to 6 star rating to indicate how good a supplement is, but also select a symptom category to indicate what that supplement was actually good for.

Thanks for your suggestion. I thought about doing this, but decided it was probably too complicated. I wanted to make it as easy for people to vote as possible, so I have the 'comment' box instead so that people can say as little or as much as they can manage to say which symptoms were helped.

 

[Hip]

@tandrsc
It's interesting to see that the supplements with the most stars on the top of your "good votes" list are also some of the ones that have published studies behind them. I while ago I was looking at which ME/CFS supplements had studies to back up their efficacy, and found the following:

Acetyl-L-carnitine improves mental fatigue in ME/CFS.1 L-carnitine helps ME/CFS.1 Omega 3 with omega 6 fatty acids (fish oil plus evening primrose oil) improve ME/CFS symptoms.1 Magnesium (either applied transdermally on the skin, or given by injection) can be of benefit in ME/CFS.1 DHEA improves pain, fatigue, anxiety, memory and sexual problems in ME/CFS patients.1 NADH helps ME/CFS.1 Co-enzyme Q10 may increase energy in ME/CFS.1 Undenatured whey protein may help ME/CFS by boosting intracellular glutathione.1 Malic acid taken with magnesium can increase energy in ME/CFS and reduce pain in fibromyalgia.1 2

The above comes from a guide on ME/CFS treatments that I am (very slowly) compiling — see here.

 

[tandrsc]

@Hip
Good luck with your compilation - it looks like you've done quite a lot on it already.

I'm quite proud of my 'good votes' sort as I think it shows which supplements most people find most helpful.

I am hoping that my poll makes it easier for people to do their own homework. 'Good votes' might initially point them in the right direction, then the info links within each supplement's results page would point them to information based on research.

I use Cort Johnson' blog ( http://www.cortjohnson.org/ ) for explainations on the latest theories and research so that I'm informed as to what I'm trying to achieve with my supplements. When I emailed him to thank him, he asked what I was taking and wrote a blog on it, I was very flattered. Here is his write up of what I take and why - http://www.cortjohnson.org/blog/201...oach-to-chronic-fatigue-syndrome-that-worked/

 

[Hip]

I'm quite proud of my 'good votes' sort as I think it shows which supplements most people find most helpful.

Yes, I found the "good votes" system works very well.

Interesting blog article Cort wrote. I found your experiences with skullcap (Scutellaria lateriflora) mentioned in the bog quite intriguing. I have taken this herb before, but it is possible I may have missed the sleep benefits it brings (I need 10 to 12 hours sleep a night, and I would love to reduce this). I think I will try skullcap again, but this time I will specifically watch out for sleep reducing benefits. The herb I took was Chinese skullcap (Scutellaria baicalensis), but I think these two species have many of the same active principles.

I see from your comment on your polling website that you take skullcap 5 times a day, rather than just once before bed. In my experiments, I took one capsule of skullcap herb a day, just before bed.

 

[tandrsc]

The herb I took was Chinese skullcap (Scutellaria baicalensis), but I think these two species have many of the same active principles.

I see from your comment on your polling website that you take skullcap 5 times a day, rather than just once before bed. In my experiments, I took one capsule of skullcap herb a day, just before bed.

Be careful with your choice of skullcap, they are not the same:
http://umm.edu/health/medical/altmed/herb/skullcap

Scutellaria lateriflora:
http://www.ncbi.nlm.nih.gov/pubmed/...S+OR+immune+OR+antiviral+OR+"nervous+system")

Scutellaria baicalensis
http://www.ncbi.nlm.nih.gov/pubmed/...S+OR+immune+OR+antiviral+OR+"nervous+system")

I find that little and often works better for me in general, and teas work out much cheaper than tablets/capsules.

 

[Hip]

I am going to try your method of "a little and often" for skullcap. How much skullcap do you take each day? The capsules I have contain 4:1 extract of Chinese skullcap root, so that is equivalent to 4 x 400 = 1600 mg of skullcap.

Certainly the Chinese skullcap (S. baicalensis) is not completely identical to American skullcap (S. lateriflora), but if you look at some of the main chemical components of skullcap, namely baicalin, baicalein and wogonin, this study shows these are found in similar amounts in both species, except for baicalein, which was found in far higher amounts in the Chinese skullcap. Though there are many other chemical constituents, and no doubt there will be some differences between these two species.

Skullcap components: baicalein, baicalin, scutellarein, scutellarin, wogonin, apigenin, hispidulin, luteolin, catalpol (ref: here).

Doing a quick Google search on these components, I found this study that says baicalin has an affect on the sleep cycle. So this may be the component that is helping with your sleep. Baicalin also has anxiolytic-like effect via activation of GABA-A receptors (the GABA-A receptor is the target for benzodiazepine drugs), so it should help combat the "wired" state of ME/CFS. Interestingly enough, you can buy baicalin powder: here and here.