The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

ADCLS and CFS share common phenotype, study shows.

Discussion in 'Latest ME/CFS Research' started by msf, Jun 18, 2015.

  1. msf

    msf Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/26082507

    ADLCS being Alternatively Diagnosed Chronic Lyme Syndrome (you heard it here first!). This IDSA study found no differences in TBI infection (based on reference laboratory testing) or cytokine studies across the four groups: ADCLS, CFS, controls, and SLE. However, they did not take the rather obvious step of sending the serum of the other 3 groups to the lab that had diagnosed 12 out of 13 of the ADCLS patients. If they had done this it might actually have been an informative study, although the fact that there were no cytokine differences (apparently) between groups suggests that the CFS group was poorly characterised. I don't see how IDSA can expect people to take them seriously when they endorse such shoddy studies.

    Sorry, I should have put CFS in the thread title rather than ME.
     
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  2. Bob

    Bob

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    You can change your thread title, if you want to. Click on 'thread tools' (at top of thread - underneath the title) then 'edit thread'.
     
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  3. Dolphin

    Dolphin Senior Member

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    Here's the full abstract:

     
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  4. msf

    msf Senior Member

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    Thanks Bob, sometimes I can't see things that are right in front of my face!
     
  5. Bob

    Bob

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    You're welcome. It's not obvious - I wouldn't have spotted it.
     
  6. Antares in NYC

    Antares in NYC Senior Member

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    Considering that the official "reference tests" for Lyme provide close to 50% false negatives, these people are obsessed with proving that any other testing methodology just gives "false positives". They are wasting precious research money defending their flawed testing methods instead of using it to develop new and more accurate ones.

    This study is only useful for doctors to dump these patients into the "CFS dustbin", where they can be forgotten because... who cares about CFS, amirite? (I can see the IDSA folks high-fiving each other, another "win" in their self-declared "war" against Lyme patients).
     
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  7. shannah

    shannah Senior Member

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    A number of collaborators involved in this study including Alison Bested and Ian Hyams from CCDP in British Columbia.

    I wonder what part they played in this or would they have just have provided samples from the clinic do you think.
     
  8. Bob

    Bob

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    Well, Dr Lipkin is investigating Lyme disease and hunting for alternative pathogens that might be causing Lyme-like disease. And so are other research teams. So serious people are doing serious research. Dr Lipkin has literally been outside with a net, collecting bugs from undergrowth, and then testing the bugs for the pathogens that they carry, and then cross-referencing with lyme patients to see if they have any alternative infections (alternative to Borrelia). I think he's struggling with funds, but he's doing the research.
     
    Last edited: Oct 5, 2015
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  9. Antares in NYC

    Antares in NYC Senior Member

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    I'll give them this: they are extremely creative at coming up with alternative names to avoid acknowledging that lots of people diagnosed with Lyme remain sick even after treatment. ADLCS, PTLDS, Post-Lyme, etc... Anything but Lyme. The acronyms just keep coming!

    There are two things I find particularly appalling about these people:

    1. Most of the members of the IDSA Lyme panel who deny the existence of chronic Lyme have themselves published many research studies proving that borrelia is resistant to abx and persists in many patients (Steere, Auewaeter, Wormser, Stanek, Dattwyler, etc). Do they really believe what they say? Which one of the contradictory things they claim is the actual truth? Here's a neat summary: http://www.lymepa.org/War_On_Lyme_Patients11-08WEB_B-W.pdf

    2. When confronted with the fact that so many people remain sick despite treatment, they shrug it (on in the case of Wormser, chuckles), and they say it's no longer Lyme, it must be something else. They wash their hands, it's not their problem. Those patients? They must be crazy; it's probably all in their heads.
    Seriously, who are these people? How can they neglect so many thousands* of seriously ill patients? They sure make me admire researchers like Ian Lipkin or Kim Lewis even more. It's not their problem, yet they went out of their way to find a solution, or at least try.


    *Even using the CDC's own conservative standards, 20% of people that contracts borreliosis never get better. They currently estimate 300,000 new cases per year, which means that every year there are 60,000 chronically ill people more to the count. I wonder what's the actual count of people dealing with this nightmare in the US alone. It would be helpful if they started some decent statistics on this growing problem.
     
    Last edited: Jun 18, 2015
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  10. Esther12

    Esther12 Senior Member

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    I'm deeply suspicious about a lot of the alternative Lyme stuff, and am concerned that 'alternative' testing is being sold without good evidence that it's of any value, but the low numbers of patients does make this study look to me as if it might have been more a political debunking project than a real pursuit of useful information (I've not read the paper, just the abstract). Which is a shame, as comparing larger numbers of patients from different ill-health groups seems like a sensible way of accounting for a lot of the problems with CFS research, where it's is difficult to know what abnormalities may help cause ill health and what are a result of ill health.
     
  11. shannah

    shannah Senior Member

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    Anyone have access to the full paper?
     
    Last edited: Jun 19, 2015
  12. msf

    msf Senior Member

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    That's exactly what I meant, Esther - if the IDSA want people to take their position seriously, they shouldn't endorse bad studies like this one.
     
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  13. shannah

    shannah Senior Member

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  14. Valentijn

    Valentijn The Diabolic Logic

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    I think a big problem with this study is that it doesn't have nearly enough participants to come up with statistically significant results. They tested for dozens of things, and made the appropriate statistical corrections - which is good, except that they would have needed many more participants to find any non-extreme differences between the groups.

    I'm also puzzled that the income of the CFS patients is the same as the controls. They would have to be some pretty damned mild cases of CFS, or a bunch of barely employed controls.

    Regarding the possibility of false negatives from "appropriate" reference labs, they say that with a 40% false negative rate, it's very unlikely that 12 positive samples in a row would give false negative results. But I think they're sort of (deliberately?) missing the point: some of alternatively-diagnosed samples might actually be positive, but we'll never know. Research like this is exactly where culturing should be used for comparison, even if it's slow and also prone to false-negatives if it's been a while since onset.

    This method is also a bit disingenuous in using alternatively diagnosed patients as proof that an alternative lab is inaccurate. Those patients were alternatively diagnosed in the first place BECAUSE they didn't meet the official criteria on the official tests. If they had met those criteria, they would have been normally diagnosed, and not alternatively diagnosed. Hence their results were negative when official diagnostic testing was done long before the study started. So the real comparison would be "how many officially negative results are still officially negative when tested later."

    They also do not report on the bands testing positive or negative or indeterminate, which would seem to be relevant and interesting data. They simply say that the patients did not meet the CDC criteria for a Lyme diagnosis. This makes it impossible to determine if any of the patients had "more positive" results compared to the various controls, while still negative according to the very strict definition. And hiding this breakdown of the data seems like a potential red flag to me.

    I'm also a bit annoyed that they don't list all of the lab results. For example, IL-6 was significantly higher in CFS patients, but that's not listed in the tables with the other lab results. Quite a few others seem to be missing as well.

    So overall it looks like the purpose of the study wasn't to find answers, but rather to disprove the existence of alternatively diagnosed Lyme. And they spend a lot of time attacking a laboratory making these diagnoses, but in rather vague ways which aren't specifically relevant to the tests being discussed. The study seems to be deliberately underpowered due to a low number of patients and too many tests to find much of anything that is statistically significant, and much of their reasoning is suspect. Important data is completely missing.

    Though one point of interest (unremarked upon by them) is that one of the Canadian CFS patients had positive IgG for Q-Fever :)
     
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  15. Antares in NYC

    Antares in NYC Senior Member

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    Great analysis, @Valentijn. Thanks for the added detail.

    In addition to the small selection of sample subjects, which is a big red flag to me, I wonder why they did not compare them to a group of officially diagnosed Lyme patients. They compared alternatively diagnosed Lyme patients to CFS patients, healthy controls, and lupus. But no CDC positive Lyme patients. To me, that's the elephant in the room.

    I would bet the farm that the CDC positive Lyme patients would also share the same phenotype. The crossover between Lyme and CFS is nothing new to us in these forums. A joke of a study, if you asked me, the type of paper that looks for material to justify a preconceived conclusion.
     
    Last edited: Jun 19, 2015
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  16. msf

    msf Senior Member

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    Valentjin, I'm glad that you also noticed the possible tautology involved in saying that 'none of these alternatively-diagnosed Lyme patients had regularly-diagnosed Lyme'. I thought I might be the crazy one.

    How did you manage to get access to the article? The abstract doesn't even have a link to it!
     
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  17. msf

    msf Senior Member

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    Good point about the missing group, Antares, I hadn't noticed that.
     
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  18. msf

    msf Senior Member

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    Luckily real scientists like the Stanford team and KDM are doing (or planning to do) this kind of research.
     
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  19. shannah

    shannah Senior Member

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    Looking around, I found this blog which seems to include at least some of the details from the study.

    http://rel-risk.blogspot.ca/2015/06/another-nail-in-ilads-igenex-coffin.html

    I can't help but wonder if, after reading this, the objective of the study was mainly to discredit the results of Igenex Lab. (Presumably this is the unidentified lab). With this result, the Canadian government is certainly not going to be sending samples down there for testing, or perhaps more importantly paying for them.

    Purely conjecture but one would think that Lyme patients showing up at the new CCDP clinic would be pressuring it for better testing or, in the meantime, accepting Igenex results as proof of Lyme Disease. The clinic can simply point to this study.

    More frustration ...
     
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  20. Kati

    Kati Patient in training

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    i am not a spokeperson for the researchers, but i know a bit about the political climate of Lyme in BC. Patients refused to enter the study. They felt it would harm them.

    Also I am not sure how many in the province have a CDC diagnosis. There may be very, very few if any at all. I may be wrong .
     
    Last edited: Jun 19, 2015
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