Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

Adrienne, Check out this website. http://www.codiagnostics.com/XMRV/index2.php
They say they have a diagnostic test available for XMRV…..?

Guide Response: Right now, there’s no reliable commercial lab test for XMRV. Please see this post for more information:
XMRV Lab Tests: Should You Be Tested?

I saw that website myself, and my reaction was that I’m not paying $399 for a DNA test even if my results are positive. Just what am I supposed to do with these results? I’ve had CFS for 25 years, so I’m going to be patient and wait until the test is available at doctors’ offices and labs around the USA and until it’s covered by medical insurance. Yes, I won’t be holding my breath waiting, but that’s what CFS/FMS is all about. Save your money, friends!

A presenter at the CDC said it was a VERY BAD idea to spend $400 for that test at that web site.

FYI.

Very sad that CFS patients do not attack the FDA for Ampligen approval. I know that it might not help all CFS patients but it does help many. FDA are a bunch of clowns sitting on their asses while many people suffer.

Guide Response: I shared your sentiments until the latest word came out, that the FDA is waiting for the manufacturer to provide toxicology information and resolve compliance issues at 2 facilities. It seems this time it’s the company that didn’t have all it’s i’s dotted and t’s crossed. If all goes well, we could have a decision early in 2010.

If the test is reliable, makes sense to get it done even if there is no approved treatment for XMRV. Why? Results could be negative…. can move on to other investigations. *Some* (definitely not most) CFS folks are wrongly diagnosed.

Were the Ampligen trials used just for severe cases of chronic fatigue syndrome?…or were there mild to moderate cases on the medication as well?

Do NOT get tested by this lab. It is not authorized by the Whittemore Peterson Institute. It is not a valid or reliable test. The only test licensed at this time is by VIP dx in Reno, NV.

Like most of the CFS community, I am so mixed about these findings. However, after having CFS for 14 years, I tested negative for CMV and EBV–only tested positive for EBV 2 years ago when I had mono. Hard to find a reliable test in FL for Lyme’s though (the only doc who seems to know his stuff charges $500 for the first visit.)

I am of the opinion that there is no one definitive cause for CFS, which would explain why some respond to treatments, others don’t, the range of symptoms and how sick some are (until last year I was mobile–then had gallbladder surgery and have been nearly bedridden since).

Great article, thank you.

I’m truly saddened that so many have jumped on this new XMRV bandwagon. History will show that it’s not the bug, it’s the terrain.

Note that more healthy people have XMRV than people with CFS.

Guide Response: Actually, only about 3 or 4% of healthy controls have been found to have XMRV, while 66% of people with ME/CFS were positive for it in the published study.

Actually the study showed many more people with CFS have the virus compared with controls. Review the study again.

I have a mild case of CFS (muslce weakness/fatigue, sore throat, swollen/painful glands in neck, cough) and am still able to work. Been dealing with it for almost 2 years.
My doctor (who is an expert in CFS) tested me for the usual EBV, CMV, HHV6 but all results came back fairly normal. I still feel like I have a “bug” I can’t get rid of. I hear about most of these cases where EBV, CMV, HHV6 seem to be contributing factors in CFS patients.
My question…since I don’t have high counts of these viruses, would Ampligen or other anti-virals help in my case? Any input would be greatly appeciated, as I am still searching for relief.

“Guide Response: Actually, only about 3 or 4% of healthy controls have been found to have XMRV, while 66% of people with ME/CFS were positive for it in the published study.”

Exactly my point.

Extrapolated to the population of the US alone, that means perhaps 1 to 1.5 million CFS patients have the XMRV retrovirus, while 10-12 million healthy controls do not.

Therefore it cannot be “the” cause of CFS.

Guide Response: It’s clearly not as simple as “if you have XMRV you will get ME/CFS.” Scientists have long believed there’s a genetic predisposition that contributes to ME/CFS, and there may be other factors that play into it as well. It could be that XMRV+genetic predisposition+some other 3rd thing (and maybe 4th thing and 5th thing) is necessary for XMRV to trigger ME/CFS. Keep in mind that not everyone who is HIV-positive develops AIDS, either.

Kelly, that’s THE most negative and contorted take on statistics i’ve ever seen. The 10 -12 million healthy controls don’t have ME/CFS! “Lies, damn lies and statistics” Ben Disraeli.

Does any one take D-ribose for fibromyalgia?

Kelly has a good point. If 90% of people who test positive for XMRV are healthy, it would seem unlikely that it can cause CFS, at least not by itself. I think even the WPI researchers stated that something else must be involved.

Thanks Joe. I was obviously a little brain fogged when I left my last comment, and should have been more clear.

Rich, my point was that 10-12 million healthy people have XMRV, but yes, don’t have CFS. So to me, that suggests the XMRV alone, cannot be “the” cause of CFS.

I’ve been sick for over 15 years, and would LOVE it if XMRV is found to be the cause. It just doesn’t make sense that it is, or else a lot more people would be sick. It seems to me like CFS is caused by many different things, which are different for each person depending on their individual circumstances. XMRV might be a big part of CFS, but I don’t understand how it can be the sole cause.

The main reason I posted was because it seems like everyone is just automatically reacting like this is THE answer, and I”m worried that if it isn’t the answer, they might be devestated because they got their hopes up too high. Put all their eggs in one basket, you know?

I’m just trying to be more cautious and ask questions.

Kelly, though I think we all agree that it is to soon to jump to conclusions and that many viral agents have been indicated in the past that have not born out. The solution to your logic problem is not as easy as you have stated.

It has been shown that viruses affect immune functions differently in many people. As Dr. Coffin stated in his explanation to the NIH, 99.999 percent of people with HIV if left untreated will die of illnesses related AIDS but that does not mean that this retrovirus (XMRV) acts the same. It has been postulated that there may be a genetic precursor that when the XMRV virus comes in contact with individuals who have this gene, the virus is able to thrive. However the possibility that the same interaction with someone who does not have the same gene expression could be extremely different. It would then become a situation where there could be multiple gene expressions that allow the virus to thrive in different ways.

Walk,

It’s tough to say whether Ampligen or another anti-viral would help. If you have a rare or undiscovered virus, or something like XMRV, it might. If not, probably not. Has your doctor tested you for Lyme disease?

Hi Adrienne-
Yeah he did, and tests came back normal. He made the comment that it could still be a possibility. Saying Lyme can be a “Clinical” diagnosis. I don’t think its Lyme because I don’t really have muscle pain, just weakness.