Nielk
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An article on PR just came out on this. http://forums.phoenixrising.me/index.php?threads/lipkin-finds-biomarkers-not-bugs.25234/
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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An article on PR just came out on this. http://forums.phoenixrising.me/index.php?threads/lipkin-finds-biomarkers-not-bugs.25234/
The study found the repeat test could separate CFS patients from controls in this sample with 95% accuracy (3 errors in total). They also used a statistical technique called 'cross-validation', which indicated the test would achieve a 90% accuracy in an independent sample (though see issue with convenience sample below).
Unique to ME/CFS?
Is this the killer test that uniquely identifies CFS patients? Dr Snell has reported that their clinic has tested patients with numerous illnesses including Multiple Sclerosis and Congestive heart failure, but have only seen the problem in ME/CFS patients. Published studies show normal repeat CPET performance for sarcoidosis, angina, Chronic Airflow Obstruction, Pulmonary Hypertension and heart disease. I’ve seen no studies showing failure to reproduce CPET results in other illnesses, but it’s probably too soon to say if this is unique to ME/CFS, or just very unusual.
Can someone explain this as well to me PLEASE. I have been wondering this ever since lipkin said he wants to look at microbiome.i am confused as to why lipkin wants to test fecal samples and not gut biopsies first.
Some ME/CFS patients have an abnormal blunted heart rate response on day 1, but not everybody does. So the utility of day 1 for distinguishing from deconditioning will be limited.How does a ONE day test, which was the test in question, show results that are different from deconditioning? Its clear a two day test can do so. Its not clear what the discriminating factors are in a one day test.
Excellent question! I don't know if any data has been published on people with infectious diseases and two day test. Perhaps HIV/AIDS or Hep C? Great question. There's a lot of data about two day CPET in congestive heart failure, etc. I would have to go through the Snell et al papers and check the references, as they cite that work.You have quoted cancer, MS, congestive heart failure. Just out of interest - are there any comparisons of the two day test with infectious diseases? Or better still - is there an easy-to-digest list of studies and their results of the two CPET test for various illnesses?
(just wondering if such a list would be a useful tool to have at hand...)
Some ME/CFS patients have an abnormal blunted heart rate response on day 1, but not everybody does. So the utility of day 1 for distinguishing from deconditioning will be limited.
I would like to learn a bit more about that too, my instinct is that its a start and poo is 50% bacteria in weight and he has knowledge in this area he may move on to gut biopsy eventually.Can someone explain this as well to me PLEASE. I have been wondering this ever since lipkin said he wants to look at microbiome.
Excellent question! I don't know if any data has been published on people with infectious diseases and two day test. Perhaps HIV/AIDS or Hep C? Great question. There's a lot of data about two day CPET in congestive heart failure, etc. I would have to go through the Snell et al papers and check the references, as they cite that work.
Can someone explain this as well to me PLEASE. I have been wondering this ever since lipkin said he wants to look at microbiome.
I agree with Daffodil about the tissue testing. That's a no-brainer, and it seems really irresponsible to imply that there are no pathogens without testing tissue, particularly since they've been found in tissue by other researchers. His poop fixation is making me very nervous, because what if he blows through all of that money and he's wrong? Where does he go from there? It seems very likely that the pathogen could be in gut tissue, but does that necessarily mean that it is excreted? And does it make anyone else uncomfortable that he's basically discredited viral CFS research done for the past almost 30 years? And where does that leave patients who have active infections per antibody testing and are responding to antiviral and antibiotic therapies? And why can't I find any comments on this study from any other CFS researchers? And why is Fauci suddenly our friend? I am having some major misgivings about all of this, and am wondering if anyone else is feeling the same way.
Sorry I can't be more help here, Alex. I'm working from foggy memories of what I was told years ago, but I'll share what (possibly inaccurate) shreds of memory I have.
I think it had to do with how quickly we reach our AT and maybe the amount of effort required to make us reach our AT. I imagine these are not established measures of exercise intolerance, but are distinct from the results experienced testers see with deconditioned patients. Both of my testers (at two different sites) said something to the effect of, "This is not what deconditioned looks like." That does not mean that insurance companies or disability offices would accept this data as evidence of disablity, just that it looks different from data of deconditioned people.
I also want to put forward the idea that we need other measures for people who are completely bed/housebound. I ask that our advocates don't forget that group.
The most disabled still have to prove to disability (insurance) companies and governments that they can't work. It may seem obvious that this group can't work but the burden of proof still lies with a patient group least able to make their case.
hi out of step. if the HERV/autoimmune theory is correct, the HERV could be activated by the offending infection. this infection could become chronic but respond to antivirals, for example, and the result would be that the HERV gets quieted down. maybe this happens in some people only - people whose disease is newer, who have less HERV activity, less inflammation, whatever...... lol obviously wild guessing here
I really agree w this, in view of the successes seen by members like SOC, heapsreal and RUkiddingME & others who've GOTTEN BETTER on valcyte!!!And CFS specialists (and other specialists who treat infections common in CFS) have been treating patients for specific infections, their titers have decreased, and they've improved, and the pathogens have been found in tissue, but all of that is apparently meaningless now because Lipkin didn't find anything significant in plasma or spinal fluid. I'm not sure how drs are going to justify antiviral/antibiotic treatment if Lipkin says that there's nothing there. I'd really like to hear what CFS specialists think about this.
Theoretically, if one has an active infection determined by testing, one should be able to get abx or antivirals for it even if it isn't the cause of ME/CFS. It could be an unrelated infection or a secondary infection. An ME/CFS diagnosis shouldn't preclude one from treatment for other illnesses. Theoretically.h I'm not sure how drs are going to justify antiviral/antibiotic treatment if Lipkin says that there's nothing there. I'd really like to hear what CFS specialists think about this.