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

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, May 23, 2010.

  1. fred

    fred The game is afoot

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    Notes from Cheney's presentation

    Dr Cheney said that he would discuss oxygen toxicity, diastolic dysfunction, free energy, redox sates and stem cell treatments.

    He described the 'Symptom Triad': energy (the push-crash dynamic which is lost in the word ‘fatigue’); brain (issues with complex processing); and pain.

    Cognitive disturbances are reported in 99% of cases and it can be the number one complaint.

    Mood disturbance is reported in 60% of cases although depression per se is rarely severe.

    At the start of the illness, symptoms are generally worse but activity levels are normal. As the illness progresses, the patient learns to ‘control’ the symptoms but they lose functionality as a compensatory measure.

    The phases of illness development:
    1. Onset
    2. Triad
    3. Dynamic dysfunction
    4. DNA phenotype adaptation (i.e. the body does not recover but complex ways are found to adapt)

    Cheney measured the percentage of predicted VO2 max achieved by ME patients and controls. The latter’s mean was 100%; the former’s mean was 67%. Even ‘normal’ couch potatoes achieve 75%.

    Brain lactate has the highest levels in ME. Only those with specific genetic mitochondrial defects have higher levels.

    Severely affected patients lose their fingerprints which is a function of immune dysfunction and oxidative stress. The scar ridges that arise on the finger pads are caused by collagen being laid down underneath the skin.

    ME has the highest RNA activity in any cell in any activity at any one time.

    In January 2010, XMRV testing of patients showed significant positives within family groups suggesting easy transmission within families.

    In ME, the systolic ejection fraction is normal. It is diastolic dysfunction which is the key symptom and which causes orthostatic intolerance.

    Test methods include:
    1. Fick
    2. Dilution (which is invasive)
    3. Impedance
    4. Doppler
    5. Brute force approximation

    The problem is with cardiac output. The left ventricle is normal, the valve size is normal and the valve function is normal but there is abnormal diastolic function.

    Diastolic dysfunction is a relatively new term which had no mention in medical literature prior to 1995. Measurement instruments started to be developed in 2001 and it has only “hit the literature” in the last few years.

    Cheney contacted a heart surgeon he knows to ask about diastolic dysfunction. The surgeon said: “It’s what the heart looks like when there’s no energy in it.”

    Cheney uses an Echocardiography Pulse Wave Doppler to measure blood throughput. For example, normal throughput is 8.3 litres per minute. This throughput is then divided by body mass index (to correct for size) to produce a cardiac index.

    At the higher end of the cardiac index scale is hyperthyroidism and hypertension. ME patients are at the very low end: 2.36. Anything less than 2 should be in a transplant ward.

    Cheney then discussed E/A and e/a ratios, notes for which I have to unravel. The key conclusion from this was that there is E/A and e/a reversal in ME.

    EDIT starts These ratios apply to different forms of cardiac velocities which I cannot decipher. Cheney uses three methods to calculate them. The first, I believe, is the Pulse Wave Doppler. The second uses an Echocardiography Diastolic Tissue Doppler. The third uses an Echocardiography PV In Flow Doppler. I have figures for these if anyone can interpret.

    Cheney said that there are two types of diastolic dysfunction and most ME patients have Type I. 75% of those who progress to Type II will die within five years of daignosis. EDIT ends

    Pulmonary vein monitoring (using a very high spec machine) will show atrial cavitation in ME. This is where the left atrium collapses and is something that doesn’t happen in healthy people. When an ME patient goes from supine to 70 degrees, you can see the atrium flattening like a pancake.

    There is significant pressure on the left ventricle resulting in up to 70% thickening of the ventricular wall. Ejection fraction can go up to 86%.

    There can be left ventricular asynchronicity to 500 milliseconds with the one part of the ventricle still filling whilst the other part is trying to eject.

    Cheney says that magnesium corrects this (but only IV or sub-lingually, not orally).

    Patent Foramen Ovale (PFO) can be seen in some patients where the ventricular pressure forces open a hole in the heart. He has found PFO in 88.7% of patients (n=60) versus 16-20% in the general population. He said that PFO leads to an increased incidence of stroke, severe headaches and migraine.

    ME people are moving to keep oxygen out and are adapting to a low energy state to prevent….(slide taken down).

    Sadly, Cheney did not have time to discuss the stem cell treatments which he is trialling.
  2. Hope123

    Hope123 Senior Member

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    This is in regard to Huber's work and Renee Taylor helping supply the patients. I realize there are some researchers within ME/CFS who might be very biased (Reeves, Wesseley e.g.) but we should be careful about tarring everyone who has a psychology background as automatically not a good ME/CFS researcher. Let's judge people by their work and their attitude rather than only by their background.

    Dr. Taylor has co-authored many, many papers with Dr. Leonard Jason, who is also a psychology professor, has written many papers on ME/CFS, and is one of our strongest advocates in the US. Dr. Jason also has ME/CFS. (This is public info from an interview done with the NY Times.)
  3. V99

    V99 *****

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    natasa778

    As others have said. Judy was looking in the direction of Huber throughout.
    Tough time our Judy is having, but she answered the criticisms beautifully.

    Flex
    I thought that was Huber at the end being interviewed.

    I really thought she was someone else looking into the biology of ME. It seems I may have been terribly wrong. Can anyone point me towards her history with ME? Also who is Taylor, Levine?
  4. V99

    V99 *****

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    Fred

    How come your notes are so good, what is you secret? How can I do this? Do I need a different name, is that the secret? :innocent1:
  5. _Kim_

    _Kim_ Guest

    Thanks Hope. I've been thinking the same thing. I don't think Dr.s Taylor and Levine would have cooperated with Huber if they thought she was out to undermine the WPI. I would like to think that she started out with good intentions and just didn't follow the recipe.

    Dr. Susan Levine in N.Y. - one of the recently appointed members to the CFSAC. She's my doctor and interestingly, has not had the same percentages of XMRV+ show up in her practice as Cheney. I have wondered if the blood collection techniques at her office are the problem.
  6. gracenote

    gracenote All shall be well . . .

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    Thanks, fred, for your great notes.
  7. flybro

    flybro Senior Member

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    pluto
    I think Lenny Jason is fantastic (heroic fantastic), i want to steal him so we can have him in the UK.
  8. gracenote

    gracenote All shall be well . . .

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    flybro, how about we share him? Something like joint custody. If we can stay on friendly terms, no need to make it formal. Dr. Jason doesn't even have to know!
  9. V99

    V99 *****

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    :tear::tear::tear:
  10. fred

    fred The game is afoot

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    I spoke to him after the conference and thanked him for pushing the ICD agenda at the CFSAC meeting. He was very open about this and other agenda items and was also interested in attendees' opinion of the conference and in the state of ME patient care in the UK. He struck me as both sensible and genuine. Clones are on order.
  11. Martlet

    Martlet Senior Member

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    I am not seeing any attempts to attack you although, on reading just a few posts, I am not totally sure everyone is understanding the point you are trying to make. If I might attempt to clarify, it looks as if you are saying that because WPI tests are not available to most of us (i.e. they are only available to those who have been accepted on trials) VIP is the only viable option. Did I get that correct or have I missed something? In any case, please don't feel attacked. I am sure no-one intends for you to feel that way.
  12. flybro

    flybro Senior Member

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    pluto
    OMG my world just got better 10 fold,

    clones of Dr Lenny Jason,

    we can all have one,

    next one to get close to him, get some of his DNA.
  13. kurt

    kurt Senior Member

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    I don't think Huber is for or against WPI, she is trying to uncover the cause of CFS just like every other CFS researcher, and thinking XMRV might be a player in her own theories about HERV K18 activation she ran some tests. And the tests failed. Every failed test is not a conspiracy, this is just science. Mikovits is probably using methods she learned from NCI to activate the samples, I believe I read a study she co-authored describing a novel activation method, although don't know if that is what WPI uses. Anyway, if that is the case, it is really no surprise that other researchers are slow to accept her method of activation, they might not believe it is a valid or important part of PCR testing for low-copy viruses. We just have to wait and let this all play out.

    Huber is on our side, and so is Mikovits. They might disagree on some points, this happens over and over in this type of new science. Contamination risks are often a point of debate in new findings like this, sometimes it turns out there was contamination and sometimes there was not. All this is in the research literature. And there are many ways samples can be contaminated, not always from improper handling. Also contamination for MuLV type viruses is a huge problem due to the fact that it is one of the most common contaminants, and also due to HERVs that cross-react with MuLV antibodies.

    How could contamination happen for Huber? That might have been from lab contaminants, or from contaminated reagents, or contaminated cell lines (if she ran that type of test). And if she had XMRV samples that might have led to contamination if there was a failure somewhere in the contamination avoidance process in her lab.

    Could contamination have happened for WPI? I don't know the answer to that but WPI insists they are clean and free of contaminants. It might be that Huber's contamination experience is independent from WPI, because MuLV is a common contaminant it is entirely possible.

    Could multiple strains contaminate? Gerwyn says no, and I have no idea how he arrives at that, maybe he could explain that comment. Given that MuLV is a common contaminant and there are many strains, and given that XMRV is only recently discovered and may be more prevalent as a contaminant than was thought, there may be multiple strains of contamination. Basically, if one strain can be a contaminant so can others, and there is no reason that would be self-limiting to only one contaminant at a time. Once there is a failure in preventive processes the door is open for whatever contaminants are out there, any numbers of strains might be there together.

    The winner of this debate will not go to who appears more confident or has the most patient support, it will go to who is right, and that remains to be seen. The fact that the winner may become wealthy due to patent rights and consulting contracts with pharmaceuticals probably does contribute to the temperature of the debate among the researchers here. But as patients I think we need to stay calm and let this all work itself out, and not read too much into the debate or presentation skills of the researchers (or lack thereof). Personally I am just as impressed with Huber's work over the years as with any other CFS researcher. She has taken an important new approach to the problem and needs to work that through to its conclusion. It just may be that they are both right about some things. I don't think anybody can see the whole picture yet.
  14. Adam

    Adam *****

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    I believe Kurt is right. I think it is a mistake to read too much into failed studies, unless there is a credible reason why we might suspect an ulterior motive. The McClure study and the Nijemegn backed study fall into this category. Kerr and Huber don't, IMO.
  15. VillageLife

    VillageLife Senior Member

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    Let's see what the FDA, CDC and jerry holmbergs team come up with!

    Also remember there have been failed studies around the world trying to find xmrv in prostate cancer.
  16. Cort

    Cort Phoenix Rising Founder

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    Certainly contamination has to be considered if the only samples she can find XMRV in are from the WPI. On the other hand there are other possible reasons for her failure to find it. The WPI's ace in the hole is the presence of XMRV antibodies and if that goes south then I truly feel for them and for us because that would mean they hit a stream of really horrendous luck - to have a contaminant show up - after all the efforts not to have that happen and then to have the antibody test go screwy on them as well .....Plus they grew it and showed it could infect cells.........I can't imagine that the 'failsafe tests', the 'check' tests Science made them do all bottomed up. What are the chances of that? I just can't imagine...Science knew they were dealing with CFS and they put them to the test - and they passed.

    I agree that Dr. Taylor is a very well respected researcher. She's currently trying to figure out what happens in the body as People come down with ME/CFS following infectious mononucleosis. She knows what a CFS patient is- the patient cohort can't be a problem. For one thing many of the patients came from Dr. Levine - who's been steeped in CFS for decades. There's got to be another explanation.

    Huber is on our side looking for endogenous retroviruses in CFS.....she got a big grant from the NIH to do that....I think everyone was surprised by that.....she's a good researcher as well.

    Nobody ever said it would be easy :)

    Huber took, I think, an entirely different look at XMRV - looking at an enzyme it produces. So this is a new thing and it could have its own problems. I really think back to Dr. Klimas's recent talk - she sent samples to four labs - all of which said they could find XMRV - and they all disagreed! Huber's result certainly doesn't help XMRV but I really think we need these big labs sharing samples to report before we'll know whats going on.

    According to Chris, the Patient Advocate, the WPI is very excited about the way things are going on their end.
  17. Cort

    Cort Phoenix Rising Founder

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    Thats a good point; things are looking a bit better in the prostate cancer world - but the history is pretty sketchy; failed studies - positive studies.....its not a pretty process to watch.
  18. SeaShel

    SeaShel Senior Member

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    I was feeling a wee bit embarrassed to be in Dr Huber's HERV K18 study after reading through this thread. Thanks Kurt, Adam and Cort for giving me another perspective to consider.

    That is in no way to take away from all of the very helpful and illuminating discussion here, and I am *very* appreciative of all of you that not only attended, but have done such a great job of reporting to the rest of us.

    Kudos, all!

    Shelley
  19. awol

    awol *****

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    Martlet,

    It's ok, issue resolved. Gracenote and I are friends.

    cheers,
    awol
  20. Dr. Yes

    Dr. Yes Shame on You

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    Yes, the contamination scenario's probability is so low that it is actually far more likely that the four different groups (the three European negative studies and Huber's) simply had inadequate methodologies. (I posted some of the reasons for the improbability of contamination in the WPI study on the Peterson Q&A thread.) Add to that the fact that they couldn't find any XMRV in controls either whereas the German study on respiratory secretions found it in a few different cohorts (non-CFS); this suggests again that the negative studies should at least have found some positives, and with that the probability of contamination explaining the WPI results drops even further. But as I stated in that other post, the probability was practically zero anyway. Contamination that (among other things) comes in different strains, can be sequenced and identified as XMRV, and only shows up in large numbers in the test group... well, you get the picture.

    Right, and it takes time and resources to develop the methodology for a completely new test. I was actually surprised to hear that she was using such a new test to screen CFS patients; she hasn't had what I would think is enough time to refine it. That's not to say it is impossible, but it's definitely not easy for one (or very few) researcher(s).

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