Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

Discussion in 'General ME/CFS News' started by Gamboa, Jul 31, 2011.

  1. Kati

    Kati Patient in training

    Thank you for the tweets today, Cort, it was great!

    The tweets from today have been compiled on XMRV Global action throughout the day.

    I have been studying social media a little bit lately and have registered a twitter hashtag, IACFSME here:

    It allows anyone, including those not too familiar to MECFS to finds all posts from one topic. So people go to the foxpractice site to find out about conferences, and boom! you find the tweets. It worked pretty well with CROI last year. You can still pull out all the tweets from that one conference.

    It would be great if you used the hashtags in your future tweets and pass on the word to the norwegian journalist in attendance.

    Thanks again for the tweets- I know it can be hard to listen, watch and tweet all at once, and on top of that being a patient!
  2. CBS

    CBS Senior Member


    Thanks for the tweets.

    As for the Wichita data, let's hope not.
    ixchelkali and WillowJ like this.
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Many thanks to Cort and everyone else who is working to bring us coverage from the conference. :thumbsup:

    I also think a database including Reeves disease lumped in with ME/CFS sounds like a really bad idea!
    ixchelkali likes this.
  4. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    Well, i hope in such a database one of the most important pieces of data will be the diagnostic criteria for each subject. That should be included in each set of data. If you can then filter out the people that only fulfilled loose criteria like Oxford and focus on CCC or ICC subjects, for example, there should not be a very big problem.
    ixchelkali likes this.
  5. Cort

    Cort Phoenix Rising Founder

    Amy Chu MD at the conference brought up the idea of picking out ME from CFS (Fududa) definition patients retrospectively and determining how they fare in different areas......If they have enough symptom data they might be able to do this...
  6. Sasha

    Sasha Fine, thank you

    Also, it's a chance to do a comparison - it could be a compelling demonstration that the broad criteria are useless. It would be a very direct test of that hypothesis.
  7. Cort

    Cort Phoenix Rising Founder

    Mikovits and XMRV

    Mikovits reported that WPI found that 6 of the 29 samples sent to Silverman had VP62 plasmid contamination.

    Mikovits states that 6/29 samples sent to Silverman showed evidence of contamination with the VP62 plasmid. The WPI has a master set of samples from the original study. They went back and sent samples from them to an independent lab which found no evidence of mouse contamination (IAP). and no evidence of the VP62 plasmid. (This suggests of course that the plasmid was introduced at Silvermans lab.)

    Mikovits then showed that a sample that Silverman said were contaminated were able to infect other cells - which she stated the plasmid should be unable to do and a sample which has a viral protein suggesting that the patient also had another form of XMRV.

    Mikovits feels WPI made a critical mistake in focusing in the samples they did and stated there is far more variability in XMRV. She also referred to the macaque study in which the virus disappeared from the blood and was undetectable by PCR and antibody. She also noted a factor (anacyto..) which stimulates XMRV in the PBMCs - and should make the virus easier to find. She asserted that the WPIs antibody assay picks up more types of XMRV than the Abbot test and noted 4 patients who responded to it but not to Abbot.
    They are also using a next generation technology that they feel is more effective at picking up XMRV. Lastly reported patient on ARVs did better, relapsed and then improved with Tenofovir.
  8. Cort

    Cort Phoenix Rising Founder

    The thing about the database is that you should be able to look at that set of patients and apply the different definitions to them to see who fits them.... You should be able to tease out the more psych patients and see who they are different, for instance...do they have lower scores in some areas...and higher scores in others. If you have alot of data in there the different data sets should illuminate each other.
    Dolphin likes this.
  9. Enid

    Enid Senior Member

    Thanks Cort - bringing it all together as it comes. Hooray for Dr Mikovits.
  10. Esther12

    Esther12 Senior Member

    I don't see how this can be used to explain their Science paper... unless they coincidentally got 60% of their patients at the rare point in time when the virus was detectable by PCR.

    It would be a bit odd if so many of the initial reasons we though MRVs were related to CFS were wrong, but a totally new testing technique found that there was some connection.

    I guess that these sorts of barmy things must happen occasionally. After what's happened so far, I think that they're going to need to produce any new results under independently blinded conditions before they'll be taken seriously though.
  11. Dolphin

    Dolphin Senior Member

    Yes, the first paper didn't use biopsies or anything like that. The results were so poor for the blinded study I think they'll need at least one more blinded study before, to use your words, "they'll be taken seriously".
  12. Cort

    Cort Phoenix Rising Founder

    yes, lily - thanks
  13. Cort

    Cort Phoenix Rising Founder

    Brenu NI and T cells from Australia

    Brenu - young researcher from Australia hits one out of the park.

    Klimas says her finding of reduced cytotoxic T cell functioning in CFS (to now go with reduced NK t-cell functioning) is VERY IMPORTANT because cytoxic T cells are huge for immune researchers (NK cells are not) (cytotoxic T cells are the big killers of the adaptive immune response..NK cells start killing off invaders and alerting the immune system, then Tc cells come in and finish it off).

    Finding low Tc functionality underscores the validity of the pathogen findings in ME/CFS. Brenu's study should raise some eyebrows in the immune community.
  14. Cort

    Cort Phoenix Rising Founder

    Exercise, Snell, CPET

    Keller - exercise physiologist from New York validates the Pacific Fatigue lab findings of reduced aerobic functioning. She notes that she sees all kinds of deficiencies including cardiovascular, pulmonary, metabolic abnormalities - there is not one problem.

    The Pacific Fatigue lab presented an abstract indicating perceived effort is not a problem with CFS. This has been a key problem/question regarding the Pacific Fatigue lab studies; ie are CFS patients trying hard enough - and that has held up some recognition of their work. The answer to that is now an emphatic 'Yes'

    Snell doesn't like the word fatigue but he says that they are the only ones that are able to actually measure it...Fatigue to him is reduced efficiency at work and he is able to show remarkably reduced efficiency in ME/CFS patients.

    Snell described the 6 minute test used by the PACE trials as essentially useless at determining real functionality. He did some digging and translated the figures to physiological measures and reported that the PACE data indicated that at the end of the trial the patients would be described a severely physically disabled person according to the New York Heart Association figures.

    Snell gave a big push for everyone to do cardiopulmonary exercise testing (CPET) in their studies; its not cheap but its not that difficult to use - he said he has undergrad students doing.
    ahimsa and Kati like this.
  15. upnorth


    thanks Cort, I almost feel a little like I'm there. Wish I were since it's in Canada. My specialist Dr. B is there I believe? Following you're twitter feed and am enjoying it.
    Kati likes this.
  16. CBS

    CBS Senior Member

    Garbage in, Garbage out

    Unfortunately, I don't really see this as efficient, practical or or even possible. Old databases are limited to the information that was collected at the time the study was conducted. If the CCC did not exist at the time (or wasn't widely employed) then the information needed to subset won't be in the data-set. Simply assuming that the Wichita subjects were the more psychiatric in nature might be reasonable for some subjects but then the data-set is "polluted" with people who aren't the "psych" folks and we're back to the issue of heterogeneous cohorts. There's no fixing lousy data. Garbage in means garbage out. This is a step backwards and until the NIH and CDC face up to the huge waste that is every "CFS" study done on patients meeting any of their criteria, we'll never make the progress that is needed.

    It is long past time to cut our losses and get serious about the research. Start collecting data form nothing but well defined cohorts NOW. Old data isn't being held onto because it's useful to patients. It is being used because people at the CDC can't admit they've wasted all this time and money and that they have very little to show for it. This is ego trumping doing what is in the patients best interest and getting in the way of good science.
    Dreambirdie, OverTheHills and Bob like this.
  17. Dolphin

    Dolphin Senior Member

    Thanks Kati. Well done on registering the twitter hashtag. Interesting to see all the stats/tweets in one place.

    For anyone who missed it, there's a similar page for #mecfs: http://www.foxepractice.com/healthcare-hashtags/mecfs/
  18. Rafael

    Rafael XMRV+ Member

    Ontario, Canada
    Hi - I was at the patient day on Thursday. It was great.
    I know everyone will get full coverage soon here and from the event organizers but maybe some people are impatient for latest like me.
    I asked Dr Klimas a question after the formal Q & A (what research other than her own was looking most promising to ME patients?) and recorded it Her answer is about 7 minutes and it is here: http://www.box.net/shared/4xu9ex3khgp6fb7sts4c
    I was slow on the record button but the context becomes clear
    Let me know if any problem accessing - I think I set up security right.
    Background: I was gathering stuff for the next edition Of MEAO (ME Association of Ontario) newsletter (mi Oct).. so we'll probably have some transcripts of this and other reports ... later.
    The other voice you'll hear (besides me) is of Dr Dr John L Whiting whose comments to the DSM-5, Sunday 19 June 2011, got a lot of circulation on internet. "CSSD - the creation of a new weapon, a new law!"

    .... I guess I can erase that XMRV positive from my profile now
    ixchelkali likes this.
  19. Cort

    Cort Phoenix Rising Founder

    Jason reports Empirical definition identifies about 75% of CFS patients correctly and the CCC about 87%. CCC is better at diagnosing CFS but ED does have CFS patients in there. CDC studies aren't completely off. They have documented C3 abnormalities after exercise for instance and polymorphisms that are showing up in the Light studies.

    Every NIH study uses Fukuda which every other CFS study (except CDC) - you would have to throw out every CFS study including those finding low blood volume, brain abnormalities, metabolic problems, EBV etc.....
  20. Cort

    Cort Phoenix Rising Founder

    It depends on which symptoms were charted. Jason has developed an algorhym which can, given the right symptoms asked about, fit anyone into the different diagnostic criteria (Fukuda, EMP, CCC)....

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