Some researchers pointed out a similar issue showed up in the Science paper where it appeared that the WPI retested people with CFS in their attempt to find the virus but did not retest the healthy control samples. They assumed a negative control was a negative control but a negative patient might be a postiive - so they retested some patients several times - thus trying harder to find the virus in them.
The WPI has been very confident in their results.
i have to say though i do find these treatment 'options' a tad disappointing. we have known all this information about glutathione and the methylation cycle for quite some time now and although when i took folinic acid, liposomal reduced glutathione and methylcobalamin (I/M) for around 6 months i felt an improvement in cardiac symptoms, most probably due to reduce homocysteine? i still did not see much of a change in energy physical or mental. i mean how long does one need to go on the methylation cycle treatment to see a marked change in this disease process and is dr. mikovits saying adding in ARV's with the meth. cycle components will enhance efficacy?
i am shocked tbh because i cannot see taking all those supplements again really doing much. I am on ARVS right now (Tenofovir and AZT) that has done nothing for my symptoms, so are they suggesting a much more powerful synergistic effect when these two components are combined??
Please some one explain i am so confussssssed :S
I would like to thank you Rich for all of your research and support.Hi, Cort.
Yes, I am very happy to see these things coming together! As I have been posting lately, it makes a lot of sense from biochemical and genetic standpoints that oxidative stress, glutathione depletion, and a methylation deficit would be connected with the retroviruses. Some sort of combined treatment does seem to make sense to me, too.
It is also disturbing to see references to oxidation, methylation cycle, NAC, B12, treating co-infections etc. as a major component of treatment. These ideas have been floating around for years and I don't see any change in CFS treatment or prognosis. We need evidence of a heavy-hitting drug that works. Maybe it will never be found, but that is what it will take--you can't supplement your way out of this disease even if it may help a little around the edges.
I would have had a different take years ago, but I've seen and experienced the results based on supplementation, glutathione and treating lyme and various viruses.
Cort, do we know for sure that WPI did in fact test the CFS samples multiple times but NOT the healthy controls? If this is a confirmed fact, it is a really big pitfall. Remember that one of the contamination theories attempting to explain the disparity between CFS and control samples is that the CFS samples were handled more than the controls. If the CFS samples were in fact handled more, that gives a toehold to the contamination theories (but does not prove it, obviously).
Regarding the concern raised by Sudlow et al. (2) about potential expectation bias, we point out that the National Cancer Institute (NCI) and the Cleveland Clinic, whose scientists independently performed experiments and coauthored (1), were certainly not established as laboratories for the purpose of studying CFS. All samples were blinded, as mandated by the NCI and WPI institutional review board approvals. All experimental procedures were done by the same personnel, in the same physical laboratory space, under identical protocols. Investigators at NCI received 100 samples from individuals without knowing their health status; furthermore, the samples were sent to NCI directly without passing through the WPI laboratory space. Laboratory workers at the NCI and the WPI who performed the polymerase chain reaction (PCR) and immunological studies used coded, blinded samples that did not reveal the CFS status of the individuals.
Glad you brought these points up, JSpot. At least someone other than me has been wondering how these things can coexist.Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?
I don't understand this either. Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens? The latter would suggest an AIDS-like presentation with the immune system completely unable to do its job. I know we have lots of co-infections, but that's different from an immune system unable to function by making antibodies. If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?
Hi, pine108kell.
I'm sorry that you find this disturbing......We both go back quite a few years in the CFS internet groups....... Best regards,
Rich
Cort, do we know for sure that WPI did in fact test the CFS samples multiple times but NOT the healthy controls? If this is a confirmed fact, it is a really big pitfall. Remember that one of the contamination theories attempting to explain the disparity between CFS and control samples is that the CFS samples were handled more than the controls. If the CFS samples were in fact handled more, that gives a toehold to the contamination theories (but does not prove it, obviously).
Jonathan Stoye is confident in his results too. I love seeing confidence in CFS researchers, but it's not evidence one way or the other. Data data data!
I would like to thank you Rich for all of your research and support.
I would consider myself re-methylated (ha, yes, I am making up words!), and I can't thank you enough.
As I go through this now continuous detox, I feel better and better. With Lyme treatment, there are a few very predictable days a month that feel like major setbacks, but these are to be expected, and the feeling of a setback quickly goes away as a herx reaction ends.
I would never have been able to tolerate antibiotics and some other drugs if it weren't for jumpstarting my methylation. It took a while (and some detox and heavy metal chelation!) until the cycle was continuous. I don't know if this means I am on the road to a recovery (we don't hear about this often), but I can say I am on the road to getting better.
For support, I have switched over from ultra-high dose injections to low-dose sublingual. I initially stopped everything once the cycle was continuous. No, I don't really feel anything (maybe a better mood), but I figured I may as well continue to support my methylation cycle with low doses now even though I don't feel like I need it most of the time.
Truth be told: I think damage has been done, and I believe the slow improvements I feel may be the body slowly repairing physical and neurological damage as well as continue to detox the toxins that didn't come out when my methylation cycle was essentially blocked.
And to the poster that said:
In my experience, treating methylation was like using a "heavy-hitting drug that works." It has helped so many symptoms from lab documented episodes of hypoglycemia, anxiety, feeling of doom, constant low-grade fever 99.5 fever, various neurological issues, headaches, immune problems (I actually started getting viruses!), and just feeling toxic (I was right all along). Hell, I don't even drink alcohol anymore, but I tried some over Christmas break anyway, and I can actually tolerate it now without feeling deathly ill! In fact, it temporarily made me feel better than baseline. My cognition and brainfog is better. I don't word find as much in a conversation (I attribute this to both the methylation protocol and antimicrobials).
Now, I have been diagnosed with 2 of the most controversial diseases chronic Lyme and CFS. I did not seek these diagnoses, and sometimes I wish I were inflicted with an illness that was understood by the medical community.
And that being said, some of the most controversial treatments not really backed by mainstream research have helped me most. The top 2 on my list are colloidal silver and methylation support. And yes I have tried many expensive treatments (including intravenous therapies) supported by so-called evidence-based medicine. Unfortunately, as of now, evidence-based medicine really isn't where any of the answers lie. I am not discounting evidence-based medicine (hopefully trials find drugs that work!), but it has generally failed since the emergence of these neuro-immune diseases. However, with possible connections to retroviruses, we finally have a better idea of where to look, and I hope there will be more answers soon.
Actually, we know that the potential issue pointed out by Cort is categorically untrue: http://www.sciencemag.org/content/328/5980/825.4.full
So, at a minimum, the embedded confirmatory work by CC and NCI was blinded (including at least 100 samples).
This begs the broader question: how many times must these "misunderstandings" be corrected before it becomes clear that they are not unintentional but rather deliberate attempts to sow confusion and doubt?
WPI researchers Had to Search Multiple Times Both in Time and Space to Find the Virus - Not only did they look at a sample multiple times they had to look at samples taken at different times from the same patient in order to find the virus
So, at a minimum, the embedded confirmatory work by CC and NCI was blinded (including at least 100 samples).
This begs the broader question: how many times must these "misunderstandings" be corrected before it becomes clear that they are not unintentional but rather deliberate attempts to sow confusion and doubt?
rich and kyle,
thanks for the great info. So would i need to get a prescription for Metafolin from my doctor - as it seems to be a medicinal food. I will try and get a script tommorow. I can't seem to find any decent suppliers online for the UK.
So if I take Metafolin and Klye might I ask where you get the methylcobalamin b12 injects from? do you know if sarah myhill is back on the scene and able to supply them again? i used to get some b12 injects from her but i just realised its the rather dodged cynaocobalamin (cyanide bonded?)
So ideally if i start with: Metafolin, methylcobalamin (injection), high dose quality vitamin, amino acid mix tablets.
Do you think this is the best way to start rich?, I would like to give this another shot if I have been taking suboptimal type of folic acid.
My biggest problem is getting methylcobalamin injections i need to find a source!! arghhh
Kyle its great to hear you have had such a great improvement, I hope I am able to replicate some of your success.
Rich thanks for sharing all your knowledge with others, I want to give this another shot!
Thanks,
Jake
In discussing tests, another very important take away was that if you test positive you are positive. If you test negative, they are not able to confirm it is absolutely negative.
Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?
Mikovits noted “especially the sickest, get negative antibody response, but positive culture.”
If that were the case (i.e. a positive test means positive, but a negative test means you have it, but you just can't mount an antibody response) then testing would be useless.
If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?
Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens?...If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?
Some researchers pointed out a similar issue showed up in the Science paper where it appeared that the WPI retested people with CFS in their attempt to find the virus but did not retest the healthy control samples. They assumed a negative control was a negative control but a negative patient might be a postiive - so they retested some patients several times - thus trying harder to find the virus in them.