It was announced earlier this week that the NIH & the FDA have confirmed XMRV in ME/CFS and the media is buzzing with the news along with many CFS blogs. I received an email today from the famous CFS & Fibromyalgia physician, Dr. Jacob Teitelbaum, with his latest blog post on the exciting information. I wanted to share some of his thoughts with you. As we all knew, including Dr. Teitelbaum, politics has always surrounded the lack of support that CFS has received over the years and was the main reason the just-released report from the NIH & FDA was held up for a while.
To me, the fact that these reports were NOT released with proof of this XMRV information in ME/CFS reeks to high heaven. Dr. Teitelbaum says in his blog post, XMRV Confirmed in CFS:
A well-done study out of the FDA and NIH has finally been published. Though the politics and controversy around the topic initially caused the study’s publication to be held up, and subjected to even more detailed scientific review and scrutiny, it was worth the wait.
The study showed that evidence of XMRV virus (and related viruses called “MLV”) was present in 86.5% of CFS patients vs. less than 7% of healthy controls. This is a dramatic difference and corroborates the WPI study. I was also very pleased to see that Dr. Anthony Komaroff was one of the study authors.
Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?
1.The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won’t find it. Not finding it doesn’t mean it’s not there.2.The researchers were unrelated to the WPI researchers and had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, but independent verification and confirmation still adds a lot.
3.That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not “too sensitive.” A second form of confirmatory testing was also done to confirm positive results.
This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.
Dr. Teitelbaum says that the finding of XMRV does not mean that XMRV causes ME/CFS. He states, ” Because so many infections have been documented in CFS, it could simply be a reflection of an immune dysfunction, and not the cause.”
Dr. T. also says there are no proven treatments yet for XMRV, but that there are “many promising candidates”. He says that they are risky and expensive and not that helpful at this point so he does not recommend that we be guinea pigs.
CFS patients are wondering if they should be tested for XMRV. Dr. Teitelbaum says that it depends.
If the cost (about $650 last I checked) is not prohibitive, and you have family or doctors treating you like you’re nuts, it may be worth it. Also, if you are in litigation with an insurance company it may help (the insurance company will likely ignore it, but the judge may be more open to it. Do the entire panel to avoid a false negative test.
This news is just another confirmation that CFS is a REAL, PHYSICAL DISEASE. We are not crazy, mental, hypochondriacs, or lazy. We are truly sick. Now even the government can’t deny it even though they tried to hide it! (That’s my opinion, anyhow.)
Dr. Teitelbaum’s thoughts on how this news helps us now:
This is one more potent confirmation that the illness is a real and physical disease. This has been obvious for a long time, but insurance companies and doctors could still be idiots and ignore the science. The media attention to this new study, and it being an NIH/FDA/Harvard study, will make it harder for nitwits to still make believe this is all in your mind. For perspective, doctors used to call Multiple Sclerosis “hysterical paralysis” and told women with lupus and rheumatoid arthritis that they were just hysterical — until new testing confirming the illnesses became available and changed everything.
FYI, the cost of testing is much less than $650. From the VIPdx website:
•The price of the PCR/culture test is $450.
•The price of the serology test is $249.
•The discounted price for both tests at the same time is $549.
Several respected virologists, including Dr Coffin, have said that the way to find out for sure whether XMRV causes ME/CFS is to do the treatment trials. WPI found 3 FDA-approved drugs that attack XMRV, and probably the other MLVs, and none has the worst side effects found in some of the other HIV drugs tested.
The Commentary with the FDA/NIH/Harvard paper also recommended treatment trials. Many patients feel they have nothing more to lose, so the idea of being a guinea pig appeals. One of these drugs is now being given to HIV positive patients who don’t have AIDS, as a prophylactic. So it may be worth the risk to ME/CFS patients.
People claiming they want to save patients from themselves generally do not understand the severity of the illness. Many of those wanting to save patients from themselves are the very ones who dose patients with antidepressants when they are not, in fact, depressed; and, apparently ignorant of the mitochondrial damage, they prescribe exercise and talk therapy. That wouldn’t effectively treat polio or influenza, other viral illnesses, so why apply that non-logic to ME/CFS?
Thanks for covering this very important development.
Thanks for this news. I’m glad that research is being done on CFS/ME. Last year there were indications that the etiology of CFS could be a (continuing) viral infection, and this is consistent with that. I have one concern, though, about antiviral therapy.
I don’t want to see CFS patients treated with AIDS drugs because those drugs are well known to be super-toxic. Many patients have died from the AIDS drugs rather than from their disease.
My feeling is that the magic bullet for CFS will be found in simple substances which strengthen the immune system — not in drugs.
Best regards and good health to all.