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Article: What's Next for XMRV?
- Thread starter Phoenix Rising Team
- Start date
C
I haven't heard anything on my involvement yet......they probably took one look at my blood and figured it was enough that I'm even still alive.
I have heard through the grapevine that the Swedish study failed to find XMRV. However, when the WPI sent over blood samples after the study was completed they did find XMRV in these samples.
I beginning to worry about all the recent negative studies coming out. The Harvard paper was done following Mikovits methods and came back negative. I am in contact with RED labs in Belgium from time to time and know that they have been finding XMRV but not at the same levels of the WPI. Its all so confusing and worrying at the moment. I'm expecting my XRMV serology and culture results back in a few weeks and have another appointment with De Meirleir late November but with the recent negative results my hopes have been dashed somewhat
I beginning to worry about all the recent negative studies coming out. The Harvard paper was done following Mikovits methods and came back negative. I am in contact with RED labs in Belgium from time to time and know that they have been finding XMRV but not at the same levels of the WPI. Its all so confusing and worrying at the moment. I'm expecting my XRMV serology and culture results back in a few weeks and have another appointment with De Meirleir late November but with the recent negative results my hopes have been dashed somewhat
XRMV skeptic
Sorry to say but I've always been a bit of a skeptic about XRMV and CFS, and am not surprised by these negative results. Of course its disappointing as we all want this disease better defined, whatever the cause
I guess I'm generally skeptical about the immune theory of CFS - Klimas et al have been looking at the immune system of CFS for 20 years now and seem not to have found anything groundbreaking
Although he is not popular in the CFS community, I think Andrew Lloyd in Australia is heading in the right direction with his theory that an initial infection does something to the brain and / or nervous system. Hopefully he can pin down what that is, and treatment / cure can follow
the brain / nervous system affetcs the immune system, so I think its likely any immune system deficits in CFS are a result of the brain / nervous system. Of course there is a bit of circular feedback happening too
Sorry to say but I've always been a bit of a skeptic about XRMV and CFS, and am not surprised by these negative results. Of course its disappointing as we all want this disease better defined, whatever the cause
I guess I'm generally skeptical about the immune theory of CFS - Klimas et al have been looking at the immune system of CFS for 20 years now and seem not to have found anything groundbreaking
Although he is not popular in the CFS community, I think Andrew Lloyd in Australia is heading in the right direction with his theory that an initial infection does something to the brain and / or nervous system. Hopefully he can pin down what that is, and treatment / cure can follow
the brain / nervous system affetcs the immune system, so I think its likely any immune system deficits in CFS are a result of the brain / nervous system. Of course there is a bit of circular feedback happening too
Possibly, but a study im in , in australia, not conducted by lloyd is showing natural killer cell dysfuntion, not numbers are in cfs group compared to healthy controls, so yes maybe right in some sort of immunodfiency which would make us more succseptical to other infections. maybe why some cfsers have ebv or cmv problems and why others have bacterial problems or a mixture or possibiltiy of xmrv. Different infections seem to show up so maybe not the common deniminator but immunodefiency appears to be the most common problem found especially nk cells.
cheers!!!
cheers!!!
C
But then what about all the people with a noninfectious onset, like myself. So it's not always an (acute) infectious insult to the CNS that causes the disease, but I would certainly agree on the circular feedback problem.
Good points. Yes natural killer cell dysfunction seems a very common marker, but thats been identifed for 20 years and no one has made head or tale of it. I would be interested in knowing what the study you are involved in as adding to this body of research - the key question being WHY the natural killer cell dysfunction - what is causing it????
As I said before, the brain / nervous system affects the immune system. Klimas et al recently found neuropeptide Y to he high in CFS, this reduces natural killer cell function so again it may well be someone happening in the nervous system that is affecting the natural killer cells.
Or yet again maybe there IS an intrinsic immune problem.
As you allude to, perhpas XMRV is an issue for some CFS patients but is more likely to be indicative of an immune defect. For others the immune defect will show up in EBV etc.
As I said before, the brain / nervous system affects the immune system. Klimas et al recently found neuropeptide Y to he high in CFS, this reduces natural killer cell function so again it may well be someone happening in the nervous system that is affecting the natural killer cells.
Or yet again maybe there IS an intrinsic immune problem.
As you allude to, perhpas XMRV is an issue for some CFS patients but is more likely to be indicative of an immune defect. For others the immune defect will show up in EBV etc.
When is the study being released?
C
Well, my NK cell function improved after knocking down CMV with antiviral Tx.....which to me indicates a relieved and better functioning immune system. But I also got improved hormone function that to me indicates relieved and improved HPA (CNS) function. I had a viral encephalitis. Both Immune and neuro are involved for sure....but which came first....Good question. For me....Immune because vaccine was the trigger.
Well for me multiple factors were involved - very high stress, combined with vaccines before an overseas trip then the final blow which seemed to tip me over in to CFS was a virus (gastro type).
what I don't understand is that natural killer cell dysfunction seems to have been commonly identified FOR 20 YEARS. So I hope the Aussie study is really digging deeper as to why its happening. Klimas et al at one stage were talking about a problem with perforin, but that was a few years ago now and we haven't heard anything more on it. Thats one of my frustrations with the Klimas group - we hear snippets of things that seem very promising then nothing further happens on it - maybe its funding???
Interesingly, I still have a book from the mid 90s, which mentioned CFS as Low Natural Killer Cell disease in Japan. Some researchers had success with a mushroom (called suehirotake) derivative called sizofiran (SPG) - in small studies they seemed to have very good results, NK cell activity returned to normal. They said that in CFS patients NK cells weren't responding properly to interleukin 2. This SPG (according to the studies) normalised this
What I can't find out is why no further exploration of this was taken up.
Does anyone know, or have contacts to the Japanese CFS community who might be able to shed light on this?
Hi Cloud. That all sounds promising. Have you been feeling much better along with the improved immune system function? How long did it take to start seeing improvements?
C
Yes, I had significant improvements symptomatically. The Tx brought me back from the abyss and into the land of the living.