Tuesday, 17 March 2009

Email to friend on wearefibro.org

Sorry for the long email, I am also going to blog this, I need to get it off my chest (and wont be using guiaifenesin for it!)

I was reading fibrofix.com and some of the comments Anne has left on this website that are very misleading and have no basis of scientific fact, there are no obvious journal links or studies etc, and there are adverts on there too (whether she receives payment for those adverts I don't know, or care.)

It saddens me, the state of this world when people suffer and there is always someone trying to make money from it. People with FMS are often let down by the health services and people become so desperate they will try anything, and it's this preying on vunerable people (like theGuaifenesin that has been proven to be no better than a placebo when it comes to treating FMS) that really makes me angry, I want to stand up for people but feel a bit useless and lost with it all.

If you can get hold of a copy of Ben Goldacre's Bad Science, or visit his website www.badscience.com (I think) The book helpfully explains how fair tests are done. It opened my eyes. Being a newbie scientist I feel it's my job to make sure that truthful answers are given and how science (and pseudoscience) relates to people with FMS. I'm honing my skills to kick the asses of people who make false claims and raise the consciousnesseseses(!) of people who believe these claims because they don't have all the information.



Nathan said...

Thick lymph causes fibro? Yeah... and leprechauns light up the moon.

*cough* Moron.

Kudos to you for debunking this dangerous idiot.

Chronically Claire said...

Heehee St Patrick's day moron smackdown, I like it!

Yeah I am really worried about the people who have used it, without their GP's consent...scary what desperate and misinformed people will do.

Hope you and Steph are ok, am off out now for some CBT!

Anonymous said...

Wrote a comment that then whimmed itself to vanished into cyberspace. You will find it amusing to say the last that Homeopathy has been refered to as a 'spiritual' cure with just a 'memory' 'shadow' 'carbon copy' of the original substance remaining. Recently had a discussion with mum on how sugar pills tempered with alcohol could cure anything? That is basically what a Homeopathic remedy consists of.

Chronically Claire said...

People like natural things and nature, but forget that not all natural things are good for you!

Angel said...

Clair, very glad I found you! It's nice to see another person blogging about their experience with fibromyalgia. A great place to vent, I agree. I think the more this disease and medications are discussed the more progress we will make.

I have been on every medication under the sun so far and my blog is the culmination of what I have found to be helpful and... not.

I agree with you concerning FibroFix. I can't quite get the angle on what the scam is with them... They've taken the guai protocol and bastardized it.

That forum post pretty much spells out just how confused Anne is about what her magic cure does in relation to guai. She's contradicting herself. Very odd.

Guaifenesin is the only medication so far which has gotten me out of bed. I read Dr. St. Amand's book, followed the protocol and in three months I'm doing better than I have since I crashed into a full blown crisis over a year ago. I'm not 100%. It's going to take some time. But the science makes sense.

Now here's some bad news that I really feel I need to point out: that guai treatment information page you found on the Fibromyalgia Network is actually old info based on the first study of guai which was done a number of years ago.

Basically, the testing was done prematurely. Dr. St. Amand didn't know WHY or HOW guai worked at the time and because of that he couldn't foresee what an odd variable that topical salicylates were going to be. It made a huge difference. Salicylates are absorbed through the skin(skincare products, soaps, lotions, etc) and this created a situation where the guai couldn't get through to the kidneys properly. Since then they guai protocol has been changed to reflect this new information: stay the heck away from salicylates! And since salicylates are now properly discussed and taken out of the patient's life, the guai protocol has helped even more. People who kept bouncing back between good days and bad (because of the salicylates) are having more good days than bad.

The new research study which was completed in 2008, City of Hope, in Duarte, California, (http://www.fibromyalgiatreatment.com/City%20of%20Hope%20Reprint.pdf)
definitively proves the connection between the kidney's mitochondrial malfunction(energy production) and the positive effects of guai. Now we can test for mitochondrial genetic markers with 80% accuracy for fibromyalgia! All because of that study. But of course the Fibromyalgia Network doesn't care about this. OR the fact that a study in Wales(http://www.fibromyalgiatreatment.com/board/viewtopic.php?t=1221)
which was also completed in 2008 confirms the systematic mitochondrial malfunction. We're finally getting somewhere in tracking down this disease and why it does what it does.

In my opinion, the Fibromyalgia Network is in the pharmaceutical companies back pocket.

I tried to write the FNetwork and email letting them know there was new research available for them to look at regarding guai and... my email was returned. That really made me upset. They want to post supposedly up-to-date information and yet they can't list a real email address for people contact them about it??? What gives?

This disease is upsetting. Dealing with doctors is upsetting. Hell, living our lives with this disease and being forced to do our own research is doubly upsetting! We have to become smarter than our own doctors just to get the help we need and deserve.

Thanks for getting your opinion and face out there, Claire. The more people talk about this disease the better we will be able to cope with it.