Dr Judy Mikovits speaking in Belfast on 22 May

Enid

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Wish I could go Kate - how lucky we are to have her twice - (with Iime May Conf)
 

ukxmrv

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The only thing I have heard is that Dr Vance Spence was too sick to make the meeting. Dr William Weir was going to step in. No other news on how the meeting went. If I see it I will post it here.
 

Enid

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Thanks eric - what a difference the WPI have made for us in the UK over this last weekend. (GPs noted by their absence)
 

Sasha

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Wow! From one of the slides: "Inflammatory [cytokine] signature resolves with antiretroviral treatment". Very interesting. But I suppose that even that isn't proof of a retroviral infection - presumably ARVs have all sorts of effects on all sorts of stuff (just as I was reading on another thread that antidepressants have antimicrobial effects).
 

pamb

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thank you for posting this and thanks for such a super report. John's last few weeks have been very tough with pain and seeing this helps us both hope and hang on - just awhile longer.

I'm too old for kids, but my next cat, should there be one, will be Judy. Thanks for a great idea Daffodil. Judy truly is an angel.
 

ukxmrv

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I don't care what the underlying problem is, just as long as we find a way of curing this disease or controlling these symptoms. Been over 25 years of trying different things for me now.
 

eric_s

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You're welcome. Sasha, i think the slide you saw is about Dr. Snyderman. In case people don't know who he is, he's an MD with ME/CFS and also a form of leukaemia. He began treatment with ARVs and documented those changes in his markers. I agree it's very interesting (don't understand it though, of course), but i think we also have to see it's only one case. So we need bigger studies... On Jamie Deckoff-Jones' blog sometimes there are letters and comments by Dr. Snyderman.
 

ixchelkali

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I'm too old for kids, but my next cat, should there be one, will be Judy. Thanks for a great idea Daffodil. Judy truly is an angel.
I don't know about that; are you sure you'd want a cat with Judy's fighting spirit? I think it would be a handful to manage! I can just picture the reaction you'd get when you said "Judy! Get down off of that shelf!"
 

Bob

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I don't know about that; are you sure you'd want a cat with Judy's fighting spirit? I think it would be a handful to manage! I can just picture the reaction you'd get when you said "Judy! Get down off of that shelf!"
Yes, and everyone would tell you that it wasn't a cat that you had, but it was obviously a mouse... So it would get very confusing.
 
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One of Judy's slides was regarding HGRV/XMRV treatments and says: "restore/improve methylation capacacity" and "restore & maintain normal glutathione levels". Is she working with Rich Vank now?? I do not remember seeing that mentioned before as possible treatments.
 

pamb

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Yes, and everyone would tell you that it wasn't a cat that you had, but it was obviously a mouse... So it would get very confusing.
That is too funny. touche Bob.

And yes, Sensing Progress, I noted the methylation capacity as well and it gave me great hope. It seems perhaps, slowly, a map for treatment is being revealed. Perhaps it is not too long before one can be tested, find out one's own flavor of ME/CFS and then embark on treatment that will most likely be effective. What a concept - after 30 years +
 

Sasha

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You're welcome. Sasha, i think the slide you saw is about Dr. Snyderman. In case people don't know who he is, he's an MD with ME/CFS and also a form of leukaemia. He began treatment with ARVs and documented those changes in his markers. I agree it's very interesting (don't understand it though, of course), but i think we also have to see it's only one case. So we need bigger studies... On Jamie Deckoff-Jones' blog sometimes there are letters and comments by Dr. Snyderman.
Thanks, Eric - I saw several lines on the graph and hadn't realised it was several markers from one patient, not one marker from several patients.
 

Sasha

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And yes, Sensing Progress, I noted the methylation capacity as well and it gave me great hope. It seems perhaps, slowly, a map for treatment is being revealed. Perhaps it is not too long before one can be tested, find out one's own flavor of ME/CFS and then embark on treatment that will most likely be effective. What a concept - after 30 years +
I noticed that too - it's the first time I think I've come across it being mentioned in the context of other approaches and as you say, it would be great if all this stuff could be joined up and we'd have some idea of what would work for individual patients and why.
 

richvank

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Hi, sensing progress, PamB, Sasha and the group.

I'm very happy to see that Judy is continuing to mention glutathione and the methylation cycle as treatment. She mentioned this in her talk in Santa Rosa, CA earlier this year, too.

I first met Judy at the 2007 conference of the IACFS in Fort Lauderdale. She was already very knowledgeable about methylation from her earlier work on viruses and cancer. Since then we have interacted some more. Both she and Jill James told me some time back that they were working together to study a possible link between the retroviruses and methylation in autism. She mentioned it to me again at the WPI open house a while back.

I do think all of this is coming together. I don't yet know whether the retroviruses are a contributor to lowering glutathione and blocking the methylation cycle in ME/CFS, or whether they benefit when other stressors have done it, or both. But there definitely appears to be a connection. As usual, we need more research! In the meantime, lifting the methylation cycle block, which automatically builds glutathione in most cases, is a good thing to do for lots of reasons. My response to Judy's talks is, "Amen!! Preach it, sister!!"

Best regards,

Rich