Hummingbirds and maca.

[awils1]

Questions for the lovely and supporting people here:

1. Has anybody tried the herb maca? It’s quite expensive here in Australia, but if people with fibromyalgia and CFS (or one or the other) have had good experiences with it, I’m willing to shell out.
2. Also, I’d love to read some opinions on A Hummingbird’s Guide-merely the ramblings of conspiracy

Comments

[sonicelectronic]

huh? CFS not exist? I know you don't agree with those people (I see red too BU!), but just for topic's sake as I oppose that and to state in general: it does exist. Conspiract theories for it sounds ridiculous to me, it's like telling someone they're not experiencing a symptom just because they don't have a diagnosis for it

[sonicelectronic]

OHOH ok D: my bad! It's 5:19am and I haven't slept yet so xC I'll refresh myself with it tomorrow, but based on what you said, I can see that. especially with 'syndrome' tossed in there. I do know that there is that stigma as soon as you say that three word phrase. you can almost see the mental eye rolling in people. I use/list my illnesses when I have to even if it's a mouthful to avoid 'CFS' itself. Although, if that is true, that's really disgusting and insulting to turn someone away with medical problems by basically labelling them crazy. That's so medivial, doctors are supposed to listen to patients, not belittle them. but that's what my doctors did to me until I finally saw a specialist. My iron levels were already under the scale and going lower, who knows what would've happen if I hadn't seen him :/

anyway! I'll read in further detail after I sleep, I'm kinda fatigued anyway *o*;

[dzilinebisa]

It is true that the CFS-toting psychologists like Simon Wessely etc are in the pay of various insurance companies though, which makes me less likely to trust their motives. :(

In answer to your question, I do get fatigued, but I wouldn't say it's my worst symptom by a long chalk. I would put pain and cognitive symptoms before fatigue. But yeah, I've never heard of anyone with ME who didn't get any fatigue *at all*.

[awils1]

I tend to agree with you. I usually say my main symptom is exhaustion---there's nothing left. The fuel tank is empty, and mostly, it stays empty.

Those tests are very similar to what I experience; it feels like there is not enough oxygen in my blood. Sometimes I'm tempted to go on my grandfather's oxygen for 15 minutes or so. He suffers from low oxygen saturation levels due to lung damage and it helps him, of course.

[dzilinebisa]

I'm inclined to believe the info on the Hummingbird's Guide site because it is all backed up with medical references and the like, unlike a lot of other "advice" sites I could mention

[elettaria]

1. Go to a properly qualified medical herbalist if you want to try herbalism. Really.

2. That seems to be a misreading, as the folks above have said. I haven't looked at that site in ages. Last time I did, I found it useful but to be taken with a pinch of salt. Today I've just got as far as their claim that there is an objective, definite medical test for ME in exist, which we all know to be wishful thinking.

[ever_smaller]

The ME reasearch conference last year discussed the test. There is one. Have a look at www.meresearch.co.uk (I think that's right) and also Google Dr Sarah Myhill, her team came up with it. It's been in the UK news recently because it's been tested and backed now by other researchers. It's something to do with mitochondria function testing.

[ever_smaller]

No, I was wrong on the link... figures... hang on... http://www.meresearch.org.uk/

This is the link to the conference this year http://www.investinme.org/IiME%20Conference%202009/IiME%202009%20International%20ME%20Conference%20Home.htm

And the test is discussed... http://www.ijcem.com/files/IJCEM812001.pdf

Hope that helps.

[elettaria]

Yes, I know there are couple of tests being tested, as it were, but at the moment there's nothing available to the end user. Hummingbird were saying "you can definitely tell whether it's ME or not, there's a test", or words to that effect. That isn't an option that's available to patients yet. Not a soul on this forum has been diagnosed as a result of a universally-accepted test, for instance, we've all gone through the usual exclusion tests and then getting a diagnosis based on symptoms, if we've been correctly diagnosed at all.

Somewhere on this website, and I'm wishing I'd bookmarked the actual page, is a discussion of a test for post-exertional malaise which sounds very exciting, as well as so obvious they should have been doing it for years.

[beesandbrews]

I used maca purposely for a month and didn't notice a change in energy levels that I could attribute directly to it. If anything, it made me sleepy (but then I have that reaction to alot of things that are supposed to be energy boosters (go fig)). Also, it tastes funny.