Dr. de Meirleir's poster at the XMRV Workshop

[pictureofhealth]

Interesting that the XMRV positive findings in ME/CFS patients in this study are accepted as 'a given' and Merleir just moves straight on to discussing the immune system dysfunction measurements, ie the next stage. Most of the scientists at the recent XMRV Conference, as we know, are still stuck on stage 1, actually finding the XMRV and whether this proves anything. Good for Merleir. He may actually be proving direct causation in a round about way.

Also, I wonder whether it is the HIV and/or the XMRV infection that directly causes the gut permeability, or whether these retroviruses incapacitate immune function to the point that fungal infections take root and damage the mucosal lining, or maybe both in a symbiotic kind of way?

 

[ukxmrv]

I'm XMRV+ and had no gut problems or signs of a leaky gut in the early stages of my disease. It was an acute viral onset with flu-like, upper respiratory tract infections.

The gut problems didn't start until I had repeat antibiotics for the infections and got much worse when I tried antidepressants much later on. Wonder what KDM's XMRV are experiencing and if they feel that the gut thing was secondary as well.

 

[guest]

Also, I wonder whether it is the HIV and/or the XMRV infection that directly causes the gut permeability, or whether these retroviruses incapacitate immune function to the point that fungal infections take root and damage the mucosal lining, or maybe both in a symbiotic kind of way?

Yes, I wonder the same. Maybe they inhibit some mechanism that is necessary for proper protection of the colon like increasing miR-29a expression. See: http://www.forums.aboutmecfs.org/showthread.php?7519-Possible-cause-of-IBS-revealed

Btw I love your signature, it still keeps me laughing

 

[filfla4]

Wonder what KDM's XMRV are experiencing and if they feel that the gut thing was secondary as well.

If you would like to read first-hand what KDM's patients are reporting, you can read up on this forum: http://www.mecvs.net

It is in Dutch however if you use Google Chrome it translates automatically, alternatively install a translator in whatever browser you're using. The translation not perfect but you can get the gist of what is being said. There is a lot of first-hand information there, not at all scientific. There are both positive and negative reports, but from what I've read on the whole it is very positive. It is a little confusing because there are several different threads where KDM is mentioned so do a good search.

This link was very kindly originally provided in another thread by 'Berthe' here: http://www.forums.aboutmecfs.org/sh...leir-s-approach-to-ME-CFS&p=120190#post120190

 

[MDL]

I drew attention to the link between the similar etiologies of AIDS and CFS in 2007 in my paper "Hypothesis: Chronic Fatigue Syndrome, Mitochondrial Hypo-Function and Hydrogen Sulfide" where I concluded, saying "Recently, gram-negative bacteria, which are increased in gut-intestinal permeability, were implicated in the etiology of CFS, and similarly, in AIDS activation". This paper was heavily relied upon when Dr. DeMeirleir made the claim that he had found the true nature of CFS last year with his test for hydrogen sulfide.

 

[filfla4]

I drew attention to the link between the similar etiologies of AIDS and CFS in 2007 in my paper "Hypothesis: Chronic Fatigue Syndrome, Mitochondrial Hypo-Function and Hydrogen Sulfide" where I concluded, saying "Recently, gram-negative bacteria, which are increased in gut-intestinal permeability, were implicated in the etiology of CFS, and similarly, in AIDS activation". This paper was heavily relied upon when Dr. DeMeirleir made the claim that he had found the true nature of CFS last year with his test for hydrogen sulfide.

What exactly are you saying? Did he refer to your paper or did he plagiarise your work? Where was your paper published? Thanks. I am very interested because I have an appointment to see Prof De Meirleir for the first time in a few weeks.

 

[Francelle]

To filfla - http://aboutmecfs.org/Rsrch/H2S.pdf - not exactly a journal publication but the best I could find!

 

[ukxmrv]

Thanks Fifla, I've seen that forum before and I've been in contact with other KDM patients in the UK. The problem I'm having is finding XMRV+ patients of his that are trying new RV or new IM treatments (rather then the ones he uses on everyone and are freely discussed). They are very quiet.

XMRV+

 

[Daffodil]

with HIV, they find that 50% of the gut-associated lymph tissue is damaged within days of infection and most of this is irreversible, i think. however, i think stem cell treatments might help repair some of the problems.

XMRV is much less cytotopathic than HIV, though.

i had low CD57.

i had leaky gut problems (i assume because i had a lot of GI symptoms) for a few years into my infection but then it subsided. no idea what this means...but when i was tested for leaky very late into my disease, i did not appear to have it.

 

[sphynx on roundabouts]

I drew attention to the link between the similar etiologies of AIDS and CFS in 2007 in my paper "Hypothesis: Chronic Fatigue Syndrome, Mitochondrial Hypo-Function and Hydrogen Sulfide" where I concluded, saying "Recently, gram-negative bacteria, which are increased in gut-intestinal permeability, were implicated in the etiology of CFS, and similarly, in AIDS activation". This paper was heavily relied upon when Dr. DeMeirleir made the claim that he had found the true nature of CFS last year with his test for hydrogen sulfide.

Hello MDL,
Thank you for posting and joining us here. I first heard of your work when De Meirleir credited/acknowledged your research paper regarding the role of H2S at the conference in London in 2009. After a little bit of snooping I came to learn a little of your story and how you came to investigate the presence of H2S in ME/CFS. Your story is inspiring and one that I am sure others would be delighted to hear if you would feel comfortable to share it - even a little of it.

Thank you for your hard work and resilience that has broadened the field of knowledge in this illness.

Best wishes to you and your daughter!

 

[bertiedog]

Also, I wonder whether it is the HIV and/or the XMRV infection that directly causes the gut permeability, or whether these retroviruses incapacitate immune function to the point that fungal infections take root and damage the mucosal lining, or maybe both in a symbiotic kind of way?[/QUOTE]

I think I had developed a sensitivity to wheat before I got sick but i did have to have a lot of antibiotics before getting sick because I kept getting severe cystitis for quite a few years.

Now 30 years later I have a mold called Geotrichum species in my gut which i cannot get rid of which acts like a Candida infection. It doesn't matter what I take or the fact that I eat a low sugar diet for many years its always there.

Its like my immune system just thinks its ok for the mold to be there. I am waiting my XMRV results which should arrive shortly so it will be interesting to see if indeed it is a possible reason for this problem.

 

[filfla4]

I've seen that forum before and I've been in contact with other KDM patients in the UK.

Hi ukxmrv. Is this personal contact with KDM patients in the UK or is there a forum where they are discussing his treatment? I come from Malta and as an ex-British cololny I far more identifiy with the UK medical system. I also used to live in London. So getting medical treatment on the continent is not something I've done before - my trip to KDM in November will be a first. I'd like to find out as much as I can beforehand!!

Thanks!

 

[MDL]

Hello MDL,
Thank you for posting and joining us here. I first heard of your work when De Meirleir credited/acknowledged your research paper regarding the role of H2S at the conference in London in 2009. After a little bit of snooping I came to learn a little of your story and how you came to investigate the presence of H2S in ME/CFS. Your story is inspiring and one that I am sure others would be delighted to hear if you would feel comfortable to share it - even a little of it.

Thank you for your hard work and resilience that has broadened the field of knowledge in this illness.

Best wishes to you and your daughter!

Hello sphynx on roundabouts,
Thank you for your kind words of encouragement. Here is some good news:

Yesterday I learned that NIH is looking more closely at one aspect of my hypothesis (see page four reference) in a clinical trial to explore fatigue and mitochondrial dysfunction within the context of cancer. Please see http://clinicaltrials.gov/ct2/show/NCT01143467

Fingers crossed---perhaps this study will yield insight into both cancer AND CFS/ME. In any case, it is great to have the NIH looking seriously at this subject.

 

[Cloud]

Obviously Leaky gut can result from many different things, pathogens being just one of them....but I too feel the H2S issue is highly significant for us. I will get my H2S test results next trip to Tahoe.....I expect a very positive result.

I've been waiting to hear what Dr Kenny had to share....sounds like more is yet to be revealed as far as his ideas on the xmrv signature, but this is great stuff.
Thanks Rich

 

[Hope123]

Thanks for posting this, Rich.

There are some differences in the cytokines seen in this poster vs. some data I've seen from Dr. Mikovits and from Dr. Klimas. For example, IL-8 is high here and in Mikovits but not Klimas. (The poster is a little difficult to interpet -- I take it normal ranges refer to lab "normal values' and "reference" refers to subjects with CFS?) IL-17 and IL-23 are associated with gut inflammation but aren't included in KDM's study at least as it is presented here -- would have been interesting to compare. IMO, the cytokines are going to turn out to be a non-specific sign -- some will be elevated due to infection/ inflammation but the pattern of cytokines will vary depending on each individual according to their immune system and what else they might have going on.

One point to keep in mind is that those monkey studies show that XMRV is commonly found in the gut so a direct effect of XMRV on the gut is certainly possible.

 

[ukxmrv]

MDL, thank you for posting here. I've just downloaded your paper from here and am about to read it in short bursts

http://aboutmecfs.org/Rsrch/H2S.pdf

Would you mind if I ask your opinion on XMRV, is there a place for this virus in the theory?

Filfla4, I've only had personal contact with KDM patients. For example if I see one posting here who has XMRV+ experience I send them a message. Also other UK based groups. I've not been able to track down many as yet.

 

[filfla4]

Filfla4, I've only had personal contact with KDM patients. For example if I see one posting here who has XMRV+ experience I send them a message. Also other UK based groups. I've not been able to track down many as yet.

OK, thanks! Please keep us posted if you do!!

 

[MDL]

MDL, thank you for posting here. I've just downloaded your paper from here and am about to read it in short bursts

http://aboutmecfs.org/Rsrch/H2S.pdf

Would you mind if I ask your opinion on XMRV, is there a place for this virus in the theory?

Hello ukxmrv,
Yes, of course, but I am not sure where the virus fits in, as passenger or driver. To me the mutiple-co-infections are also very important. If it is true that apparently healthy people harbor HMRV, then I would favor the idea that the virus is opportunistic and takes a ride on an already-impaired immune system, rather than the other way around. In any case, clearing up the H2S-related problems (mold, yeast, bacterials infections, food sensitivities) and external environmental insults can only help.

You may want to read the piece Cort wrote last year:http://aboutmecfs.org/Rsrch/H2S/H2S.aspx
http://aboutmecfs.org/Rsrch/H2S/H2S.aspx

Good luck to you-
MDL

 

[mojoey]

Hi MDL,

Thank you for chiming in here. I'm not suggesting one way or another, but I do have a question for you if you don't mind answering:
You said "If it is true that apparently healthy people harbor HMRV, then I would favor the idea that the virus is opportunistic". However, aren't there HIV+ by serology people who are healthy for years and whom sometimes never come down with the illness? In spite of this, it is still widely agreed upon that HIV causes AIDS correct? Can't xmrv+ by serology healthy people be the analogue?

 

[acer2000]

Hi MDL,

Thank you for chiming in here. I'm not suggesting one way or another, but I do have a question for you if you don't mind answering:
You said "If it is true that apparently healthy people harbor HMRV, then I would favor the idea that the virus is opportunistic". However, aren't there HIV+ by serology people who are healthy for years and whom sometimes never come down with the illness? In spite of this, it is still widely agreed upon that HIV causes AIDS correct? Can't xmrv+ by serology healthy people be the analogue?

Its the exception rather than the rule that HIV+ don't get sick. Some 90 or more percent of them eventually get AIDS. Many don't show symptoms for years, however. With HTLV I think it is different. Many people carry HTLV and don't get cancer or HTLV associated illness. I don't know the exact percentages, but it may well be the majority of them (that don't get sick).

acer2000