BlogHer - MS - Comments

false claims for every one

Memeakaoma — Sat, 04 Jul 2009 13:59:32 -0500

sadly these claims carry over into every illness including cures for cancer- these guys do not care what you have as long as you are willing to buy their product- before spam filters came in I can remember getting notes for all kinds of diseases and or illness with a cure but they would never tell what to do unless you were willing to send them money-

and only so much research can done with out funding the true scientists and sadly these other guys are stealing from them by taking money that could go to research and also there are so many illnesses in our world and a lot of them ending in death and the funding never goes far enough. And the sad fact is that not all things will have a cure but if we could just make things easier for each other that is a blessing.

and life is much easier for disabled illness than 50 years so we have come a long way.A lot of illness then were death sentences and folks can survive for many years.

huggles me, Meme

Thank you

LaurelB1 — Sat, 04 Jul 2009 11:40:56 -0500

Thank you for posting this. As one who also suffers from CFS, I
can't tell you how many times I have been promised a so-called natural
cure for my situation... just as long as I hand over lots of money. :)
It is so unfortunate and sad that people could even consider taking
such advantage of those most vulnerable to the need for hope.

I
can't help but wonder, if there was more awareness and better overall understanding of how serious
and complex an illness like CFS truly is, whether so many of these
simple cures would still be advertised.

Loved the video, too.

Laurel

http://dreamsatstake.blogspot.com

It is no secret.........

Memeakaoma — Wed, 01 Jul 2009 01:38:26 -0500

huggles me, Meme

I think part of the problem is that we see these articles as hope and I have learned that often that hope is false and expensive-

So often they start out with being a ''secret -------''' and then of course- there is no secret unless you pay --and then the secret is false hope-

I do wonder how some one can pimp off of some one's pain-

huggles me- Meme

Crowns

Ladyinhershoes — Wed, 27 May 2009 13:02:39 -0500

Ladyinhershoes, I say you are doing a wonderful thing and your heart is in the right place.

Thank you.

hereslizz — Sun, 17 May 2009 13:05:30 -0500

Great post! I never understood why people would fall for such things. I'm thinking that if it were so great, wouldn't that be the standard treatment for the problem?

However now, I'm dealing with "something" that is yet to be diagnosed. Rheumatoid Arthritis has been ruled out but what else....is it chronic? Will I live like this forever? I'm only 34! Is it Lupus? Fibromyalgia? CFS? Epstein Barr? We don't know yet, but with just one horrible flare up and these mini flares I'm having, I can relate better to judgement being clouded by pain. I feel for people who have to live out their years feeling like I do now (or worse). I hope I do not have to, and I hope real cures and relief are coming to those who need it *hug*

I myself am made entirely of flaws, stitched together with good intentions. ~ Augusten Burroughs

http://onenerveleft.blogspot.com

This week was CFS/ME Awareness week.

Cherith — Sat, 16 May 2009 23:20:54 -0500

I've had Chronic Epstein Barr for about six years now, and I'm still learning that doctors that I'm seeing don't know exactly what to do, or how to treat me. In fact, I talked to an Endocrinologist about a year ago to try and get treatment for my hypothyroidism and he told me that Chronic EBV didn't exist. So that's awesome.

I am glad you brought this up.

LucindaA — Sat, 16 May 2009 19:17:55 -0500

I have Celiac which was misdiagnosed as Crohn's for years (or perhaps I have both? We don't know). There are also multiple food allergies and some other thing that has yet to be figured out.

I have been desperate at times to just find some relief. Between doctors who didn't understand and websites that were misleading to say the least, it is a frustrating journey. The internet has been a huge boon to learning about your illness. But it also requires a discriminating mind to find helpful information as so much out there is inaccurate or is preying on your hopes and fears.

I hope this post creates awareness for those who want to offer "helpful" advice so that they might see there is no quick easy cure and sometimes there help does more harm than good. Just because it was on the Internet doesn't make it true...or false.

Thanks Ann...

Catherine Morgan — Sat, 16 May 2009 15:12:49 -0500

Thanks Ann. It was actually your post on BlogHer that inspired me to write about this topic last night.

:-)

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

I hate prednisone...

Catherine Morgan — Sat, 16 May 2009 15:10:30 -0500

Thanks for you comment. I can feel for your sister, I have had to take long courses of prednisone over the years for my asthma, and every time I gained at least 20 pounds. When I have to take it I feel like I am starving and I can't stop eating. And it also makes me feel totally depressed...I hate it.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

Chronic Illness "Cures"

apietrangelo — Sat, 16 May 2009 14:11:14 -0500

I decided to read your post based on the title alone. It's an issue that continues to amaze and anger me. Half way through your article I find that you referenced my recent blog post on the same topic, as well as that of some other bloggers. It's nice to see that I am not alone in this particular train of thought! Thanks for the mention.

Ann Pietrangelo

MS Maze

Visit me at: AnnPietrangelo.com

Important post!

Candelaria Silva — Sat, 16 May 2009 12:58:27 -0500

My sister has lived with lupus for years. Many of her ailments now come from taking prednisone for deal with the lupus. Anyhow, I used to send her everything I found about lupus and rhematois arthritis and be really upset that she didn't seem to want to jump and go try certain things. She was tired and angry that most of the stuff offered nothing new. Now, I read the full article or website before I forward to see if there's anything worth sharing. Sometimes "promising research" is so far away and not even in trial that it doesn't make sense to share.blog.candelariasilva.com.

The one alternative medicine to prednisone she did try a few years back had a side affect that she didn't want - losing her sight. She stopped that medication at the first sign of the symptoms.

Anyhow, wanting relief from pain and a cure for illness is a powerful motivator for people to believe claims. People who are ill and those who love them have to be vigilant and wary.

examiner.com/x-2478-Boston-Domestic-Issues_Examiner

Good and plenty!