Disturbing article about cfs. - Chronic Fatigue Message Board

levente · 07-18-2006, 04:34 AM

Ladies and gentlemen at this board, As someone who just figured out, through the help of the proper doctor, that I suffer from cfs/me, I was very disturbed to find this article on the internet. Like most of us when we become diagnosed with cfs I wanted to know more about the illness as that would give me some insite on what i'm facing and how to deal with it. In my search on the internet I came across this article.

Please note I'm not trying to scare anyone as I was just as disturbed when I read this article. I guess I just want to know if anyone has heard of this information in this article before. Please if you know anything post it here on this board as I think it would be a great help to all of us.

The article is located at [url]http://www.chronicillnet.org/CFS/Ostrom/CFS_book.html[/url]

Thank you.

KCLyme · 07-18-2006, 11:59 PM

Hi Levente,

I think the article is pretty alarmist in that it places way too much emphasis on AIDS and analyzes causal relationships simplistically. (As in, "If A and B are similar, or if A is present when B occurs, then A clearly causes B.") You could pretty much replace "AIDS" with "undiagnosed viruses, bacterial infections or parasites" or "chronic Lyme" or "Gulf War Syndrome" throughout; it would probably be much less misleading and much less scary.

I do think many, many "syndromes" are really chronic health problems caused by an undetermined virus, bacteria, or some other kind of parasite. Because the root cause goes undiagnosed, it continues to stress the endocrine system; overwork the handicapped immune system and cause autoimmune responses.

For instance, some CFS diagnoses probably do have a root cause of AIDS, but it could also be Lyme, any one of a dozen autoimmune diseases---or something else entirely.

I've been diagnosed with Lyme rather than CFS, but my symptoms could really be designated as either. My response to the antibiotics is absolute proof I was diagnosed right, and I'll tell you I don't agree at all with their statements implying CFS people are commonly misdiagnosed with Lyme. Heaven knows what test was used to decide they really didn't have Lyme. Just read the Lyme boards and you'll see how incredibly hard it is for most Lyme people to get tested right, diagnosed right and treated right. There are many who have co-infections which create more opportunities for confusion.

I hope that helps somewhat.

Kali M · 07-24-2006, 06:43 PM

Levente,

KC gave a REALLY great response to your post. I also looked at the article. There are many truths within it, but what you MUST keep in mind when reading these types of things is "where did this statement come from and what exactly does it mean"? Many of those statements come from early research. CFS (as well as many other diseases such as chronic Lyme, MS, Hashimoto's hypothyroidism, etc) lacks a depth of scientific knowledge. Many researchers are now doing CFS (or more appropriately CFIDS) studies - including the CDC (who cyphoned money from CFIDS into other programs for many years). BUT, just because HHV-6 viruses, EBV or mycoplasma (or multiple other bacteria or viruses) have been found in CFIDS patients, it does not conclude that these have CAUSED CFIDS. No one yet KNOWS what causes CFIDS (or many other diseases). And as KC so aptly put, there are probably MULTITUDES of other conditions out there which have not been appropriately identified. Those patients are either getting the brush-off - as so many of us have for so many years - or they are being misdiagnosed (often as pscyhological disorders).

The "link" of CFIDS to HIV/AIDS is that with both, there is a decrease in CD4 cells (which are a key to our immune systems). CFIDS has often been refered to as a slow-burning AIDS. Though there are many differences. One being that it does not APPEAR that CFIDS is contagious. However, latest research HAS now shown there is a genetic component to CFIDS. E.g. YOU catch that horrible flu going around and so does your neighbor. You end up with CFIDS; your neighbor does not. But, what neither of you knows is that YOU had the genetic composition that is susceptible to CFIDS, whereas your neighbor did not. I'll bet you anything it's MUCH more complex than that, but fear not - science is starting to catch up. We are going to know SO much in the next few years. YOUR job is to HANG ONTO YOUR HEALTH and ride out this rollercoaster.

Read what you can about CFIDS - but try your best to lean toward medical information and treatment that has some evidence-base. The large CFIDS associations are a really good place to start. CFIDS Association of America has a terrific newbooklet that goes out quarterly (I think). This is not to say that other information does not have truth - but it is so easy to be misled when we are searching so desperately (I'm including myself in this group!) for answers.

Thanks so much for calling this to everyone's attention. Keep reading and educating yourself! And hang in there.

KM

levente · 08-06-2006, 09:23 PM

Hey Kali M, thanks for your response. You have been a real big help to me here with your responses to me. I would like to know if you could guide me to some more information based on good evidence that I can read. Also about the cd4 thing I never really heard or read about that. I'd like to get some information on how that works with cfids. I have read a lot about hiv and I know how it works there but not about cfids. So if you could guide me to some information about it I would appreciate it thanks.

P.S. Are our cells destroyed somehow progressively like hiv to the point where we can't defend ourselves?

This whole diagnoses is really new for me although I've realized it's been going on for better part of ten years now, I just recently found a doctor here in Korea to deal with me properly. As you might guess there's a lot I don't know, I'm afraid and of course I'm tired, hahahaha. But I guess that applys to all of us.