5th Invest in ME/CFS Conference - Programme May 24 2010

[kurt]

Kurt, how would you explain symptom elevation in those taking antiretrovirals who have tested positive for XMRV (Dr Deckoff-Jones)? How do you explain this statement: "we are really good if we can put antibodies into people" - Dr Judy Mikovitz.

Some ART therapy is known to help with Herpes infection, unless you are measuring viral levels and carefully tracking immune function during treatment there is no way to know what exactly is being helped by the antiretrovirals. We do know that antivirals in general often help CFS patients, as do some anticancer drugs, and sometimes antibiotics, so there could be many possible explanations.

Not certain what that comment about putting antibodies means, do you mean giving ART causes XMRV antibodies to increase? That would be hard to explain any other way than die-off from an active infection, I agree. But which infection? Those antibodies are often very cross-reactive, including with HERVs as well as multiple MuLV type retroviruses and maybe others. Until that situation is reviewed by experts, who knows.

 

[DysautonomiaXMRV]

My tests without Mikovits knowing: XMRV+, Low T-Cell, Deranged Natural Killer Cell, Inflammation and I have a neuro immune disease.

Mikovits Claim: XMRV in 98% of CCC/ME & XMRV Infects T-Cells, Infects NKC cells, causes neuro immune disease.

Additionally we know MULV class virus (XMRV is one) can impair mitochondrial function. I tested positive for that too.

I'd say all bets are on for folk with CCC/ME.

The chances of her 'guessing' I have XMRV, and me then testing positive for XMRV with my previous medical history which mirrors her claims, is about nil. Hence Kilmas (who has 4 professorships) is backing XMRV. Coffin said there's no contamination at WPI, and the Cleaveland Clinic and NCI also confirmed WPI's results which where then double checked by the CDC who re-confirmed no contamination after the SCIENCE paper.

Mikovits has got it, for sure. The problem is a huge proportion of people with CFS who think they have a neuro immune disease, don't have one as they never had any tests. These people have been tricked by the CDC as much as people with neuro immune disease. Both sides were used and taken advantage of in a on-going game of 'hide the new human retrovirus'. (A bit like playing 'pin the tail on the donkey', and then hiding the tail in a cupboard for 25 years).

Lets say I had diagnosed HIV not from testing but by saying 'I think you have HIV'. When a test comes out, loads of folk are left scratching their heads and some believe HIV can't exist as they aren't positive.

That wouldn't mean HIV doesn't cause what it causes, just that there was never a diagnostic test.
Additionally CFS doesn't mean anything but not knowing why people have a syndrome (collection of symptoms) of 'Chronic Fatigue' and was a word used to deny ME (Myalgic Encephalomyeltis) exists which causes brain inflammation - which Klimas can show happens in people who are told they have 'CFS' in America.

Does XMRV cause CFS? No.

XMRV causes neuro immune disease, in which people given the label ME or CFS often have - who have evidence of neuro immune disease.
XMRV can never cause all cases of CFS, the criteria are too weak and there are approximately 9 different diagnostic criteria for CFS. The WPI did repeat the other day in a press release just this fact, that they never said XMRV causes CFS. (The media did). Infact,I believe they initially floated the idea of XAND. (X-associated neuro immune disease).

 

[kurt]

It's only CCD patients testing positive for XMRV, if there was contamination surely non-CCD patients would be testing positive and at the same rate as CCD patients.

I think this is the most interesting argument for XMRV being a passenger virus, showing up in the sickest CFS patients only, but not the entire field of patients. But your point is well taken, that is a problem for the contamination hypothesis, unless there is some other virus, HERV, or retrovirus present in the Canadian Consensus Def. patients exclusively that triggers false positives due to reagent contaminant interaction.

This HAS happened before, a reagent contaminant that showed up in some studies and not others in a retrovirus hunt, and turned out the labs using one commercial reagent brand were getting false results due to a cell line contaminant (Rabbit cells I believe). That is documented somewhere in that long 'Rumor Viruses' article I have mentioned several times here (too much brain fog today to look that up though, that is slow reading).

Reagent contamination comes from outside the lab, from commercial cell lines, and can be undiscovered until someone checks for that specifically. Apparently that happened to Huber.

 

[Cort]

Hi Woody,

I believe that Invest in ME is a tiny organisation... I've heard that it has just three people running it, completely voluntarily, in their spare time (I think they are parents of people with ME)...

It's amazing that they've put together such a high profile conference by themselves, without any government funding...

So I don't think that we can really demand all sorts of hi-tech, hi-cost, webcasting etc...

But they will be selling a DVD of the entire conference... (I posted a link earlier in this thread, if you are interested in buying the DVD).

They also sell DVD's of all their previous years' conferences if anyone is interested... and all the conferences DVD's are really interesting...
(It's really rewarding to watch the all conferences - they are megga-educational - and they have the best scientists giving talks - but they're quite hard-going to watch as most of the presentations are pretty technical and scientific)...

Bob

That's amazing - good for them

 

[Cort]

I would give anything to be there....just to hear my doc speak his "science talk" to a room full of people who can really comprehend what he's saying! (as opposed to telling me...as try as I might - I'm not quite up to speed....yet!)

I wish I could be there in person to tell the audience how much his compassion, perseverence and methods of treatment have helped me improve...to the point that I can read and write on these forums - changing my life for the better!

In over ten years he has never wavered in his dogged determination to help those of us with me/cfs. Every symptom (no matter how small or insignificant) is a "clue" to the bigger picture for him!..and I trust him so much, that I am a willing "guinea pig" for any research he wants to do. Unconditionally.

I am indebted to him...for trying so hard to put an end to our suffering (and so lucky to be his patient!)

He will be in his element and I wish him success! (and all the others who make it there)

He's Dr. John Chia



jackie

(If there was an award for "Most Improved Player of The Year" with me/cfs...I should be in the running - thanks to him! So my grateful family and I will be cheering him on....here in the U.S.)

I don't think I've met a more genuinely nice guy amongst all these researchers then Dr. Chia. He is a gem! He came to this illness because his son got sick. He's doing important work. I'm sure it's a little frustrating for him to have it be kind of overshadowed with all the excitement about XMRV. Glad to hear that he's helping you out.

 

[Cort]

Oh dear, so sorry to hear about Annette. She definitly needs to rest and take care of herself...

That is too bad - I hope she just has a cold. I met her for the first time really at the CFSAC meeting. She was a very dynamic lady, a real bundle of energy - I think after that she was going right to some other meeting. She's giving it her all. I'm sure she'll be okay - she just seemed like a very capable woman to me.

 

[Knackered]

I think this is the most interesting argument for XMRV being a passenger virus, showing up in the sickest CFS patients only, but not the entire field of patients. But your point is well taken, that is a problem for the contamination hypothesis, unless there is some other virus, HERV, or retrovirus present in the Canadian Consensus Def. patients exclusively that triggers false positives due to reagent contaminant interaction.

That's based on everyone with "CFS" having the same condition, they do not, you either have CCC/CCD or you don't. We need to get out of the mindset in thinking everyone with "CFS" is the same. It's not people who are more ill with "CFS" who are testing positive, it's people with CCD/CCC.

Also: What DysautonomiaXMRV said.

 

[Cort]

Huber also mention her HERV-K18 work. Early days but it looks like EBV or HHV6 is able to turn on HERV-K18, resulting in massive T cell activation. Symptom severity looks to be matching level of expression. Still early days on this.

Hope I got this right. I'm sure some of this has been mentioned before.

Thanks V99 - very interesting particular in light of the Lerner study that just came out on EBV. That would be big big news.

 

[Otis]

I don't think I've met a more genuinely nice guy amongst all these researchers then Dr. Chia. He is a gem! He came to this illness because his son got sick. He's doing important work. I'm sure it's a little frustrating for him to have it be kind of overshadowed with all the excitement about XMRV.

A friend who is a patient of Dr. Chia's (living 80-90% after help from him despite dealing with breast cancer along the way!) said he confided he did feel a bit frustrated with the XMRV excitement, but it's obvious he continues research and helping patients.

 

[Cort]

A friend who is a patient of Dr. Chia's (living 80-90% after help from him despite dealing with breast cancer along the way!) said he confided he did feel a bit frustrated with the XMRV excitement, but it's obvious he continues research and helping patients.

I think there's no stopping Dr. Chia; he did his work in the shadows for many years without anyone paying any attention really - he's committed! :victory:

 

[Kati]

I must say it is very brave of Dr Huber to come up in front of a patient crowd and announce that 0 samples were positive for XMRV. I would love to hear what the mood was like at that time and the tone of the presentation.

I would also love to know how many people, approximately were in attendance, and perhaps the percentage of patients vs scientists.

Thanks, Kati

 

[usedtobeperkytina]

well, they didn't have to look at my cells to know I have no cleavage.

Tina

 

[ixchelkali]

well, they didn't have to look at my cells to know I have no cleavage.

Tina

Gives a whole new meaning to "used to be perky."

 

[Kati]

well, they didn't have to look at my cells to know I have no cleavage.

Tina

LOL @ TIna! Thanks for the good laugh!

Gives a whole new meaning to "used to be perky."

:tear::innocent1:

 

[jackie]

Thanks cort! yep..he's helping all right! The thing about Dr. Chia that makes him so unique is that he TALKS to you...he really wants to make sure you understand (as MUCH as you can).

He doesn't stand aside and throw a prescription your way now and then...he makes you feel that you are involved in the discovery process. Because to him this disease is simply a mystery that has yet to be solved...and he is like a dog with a bone. It WILL be solved! He speaks with great certainty that finding the "cause" is close. (now to a scientist, who knows what "close" really is!? I'm learning patience)

Every new move forward, every clue that comes his way - he's so willing to share. He makes you feel that he's in the middle of this disease WITH you - if that makes sense. (I guess this attitude comes in part because of his son)

He commiserates - genuinely - when things are going bad and he celebrates every little victory in your treatment. I've had him call me at home (him, not his staff), to go over test results and patiently go over them and what they might mean, again and again - until HE is assured that I understand.

Most importantly he doesn't sugar coat the facts...ours is a very serious disease with potentially serious complications - but one that he believes can be sucessfully treated (one way or another), in many cases. I know it helps his research that he worked with hiv patients for quite a while before switching to me/cfs....his background is perfect for dealing with "us".

And he values a patients input (he never discounts a symptom that someone describes), as he understands, unlike so many other docs - that WE know our bodies and what it's like to exist with the disease better than anyone else.

If you've ever had that nagging doubt that you really ARE ill (for those in the early stages)...or whether me/cfs is a real disease (usually put there by dismissive doctors!)...one session with chia will put your mind at ease.

I read that his portion of the "lecture" went very well - (I'm looking forward to watching the dvd with my family - we feel we owe him a lot.)

j

 

[Kate_UK]

Here are some more of my notes. I'm not too sure of their accuracy, I don't want to be misquoting people, so if you see a mistake or misunderstanding on my part please point it out.

Professor Jason talked about a revised Canadian Adult Definition. My notes say

original - severity
new - severity and frequency

Level 2 - self report
Level 1 - biological documentation

Dr Chia talked about taking a detailed history. Enteroviruses can mimic other things e.g. allergies, chicken pox. He talked about Th1 and Th2, the balance between them determining outcome of intracellular infections. Under Th2 I have written atopic, steroids, two weeks before periods, pregnancy, vigorous exercise, vaccination, prior infections. Also a note about Th2 shifts and illness starting at puberty.

Dr Cheney - diastolic dysfunction. Orthostatic intolerance is the clinical clue to diastolic dysfunction. He talked about a simulated climb of Everest (altitude induced hypoxia) having similar results on the heart as CFS - so tried giving CFS patients some oxygen - but it made them worse.
Later he said he wasn't keen on ribose. Dr Myhill was in the audience, when ribose came up she said you need to have a digesting gut instead of a fermenting gut for it to work.

 

[Gerwyn]

Getting a negative study published will become increasingly difficult now, regardless of the quality of the study, because with three already published, a negative study has a low impact factor. I have heard other negative studies are also being rejected by top journals right now because of low impact factor. (journals are rated for their impact factor, the potential impact of a study on their field, to stay on top like Nature or Science or Lancet a journal must publish only high impact factor articles)





I have been told this is not something labs ordinarily screen for, they usually only screen for lab contaminants, which WPI does religiously. But if a contaminant is in a reagent, then to screen for that they must run a test in water and if they get a positive they know the reagent is contaminated. Apparently this has happened before, and if Huber said it was a reagent contaminant that is a pretty solid statement, that would be easy for her to prove.



Same old complaint, but the Science article also used PCR with no amplification for some of the tests that were positive for XMRV. I doubt Huber's test was faulty, she is a seasoned researcher and would have used positive controls in every batch. Something else is going on.



I was not at the lecture but doubt this was an arbitrary decision, rather determined experimentally the reagent was contaminated. What this means if it is true is that every research group must now go back and test their reagents for contaminates, or at least those using the same source of reagent as Huber. Perhaps some had contamination and some did not, they just have to run the tests to find out.



Did Huber talk about her K18 research much? Or was this just about her XMRV study?

Considering Dr Learner's studies of HHV involvement in CFS, the cytokine profile of CFS which might come from a K18 superantigen, and the fact that low glutathione allows herpes to replicate, maybe someone will connect all of the dots now...

No Kurt the science study did not run any PCr without at least amplyfying the samples.All exogenous retroviruses ativate the expression of all Hervs as they are part of the intrinsic defence.Any viral infection will do the same. journals are actually judged on the quality of their peer review process.This is how they become dominant in the first place.There are many journals which merely concentrate on the replicitivity of the methodology to"speed up peer review"Jama,Plos one and the BMJ spring to mind.If hubers work does not satisfy their criteria then methodology must be an issue.She used PCR initially and could not find the virus.She then repeated the procedure with another technique and then could.She then concluded that the second run must have been due to contamination.If however her technique in the first place had been sensitive enough she would have picked up said "contamination" initially.Dr lerners study patently demonstrated that EBV caused Chronic disability as was already known before hand.What Hubers work actually showed is that if you use the right technique you will find XMRV if you do not you wont

 

[natasa778]

by "we cannot put antibodies into people" (in reply to criticism re contamination) Judy probably referred to their new antibody test, due out very soon. they must have run it against their known positives....

 

[Knackered]

by "we cannot put antibodies into people" (in reply to criticism re contamination) Judy probably referred to their new antibody test, due out very soon. they must have run it against their known positives....

I was told western blot's out in the summer, do you have any idea when?

 

[natasa778]

she said ELISA out any day now, they are licencing it out now ... didn't mention western blot, although I guess they should be used in combo? http://www.nlm.nih.gov/medlineplus/ency/article/003538.htm