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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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  1. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    Just to be absolutely clear - KDM does not believe that active bacterial infections are causing ME, nor does he treat them in the majority of his patients like you suggested in the title of the thread. The question has been explicitly answered. I summarised his approach in an earlier post...
  2. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    This is not directed at anyone in particular but is more of a general point and is related to some of the themes spoken about in the thread. I think that merely using the term 'no evidence' to dismiss ideas is a lazy way of arguing against a proposed theory without an explanation as to why...
  3. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    I do not believe the mitochondria are the cause of the illness either however it seems to be pretty clear that their functioning is affected by the illness. In mine and many others' experience taking supplements (in particular magnesium) to correct mineral imbalances can result in a significant...
  4. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    Treating infections and having the patient experience an improvement in symptoms is pretty much one of the main goals of medicine, not sure what part of that would be revolutionary. Why would it be different for ME patients?
  5. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    His patients are treated individually also. There isn't a 'set treatment' you get as per a clinical trial. I wouldn't be too happy about paying money for bespoke testing just to be given a standard treatment so he could publish my data.
  6. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    Just to hammer this point home - HE DOESN'T believe ME is caused by a pathogen. Yet you persist with this narrative to support your argument. Yes ME doctors treat infections and this often helps patients experience a better quality of life. It doesn't mean they are saying it is caused by a...
  7. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    I agree. As the statistics above show, 75% of his patients do improve whilst only 10% get worse. This is obvioulsy very unfortunate for the few that get worse and while everyone has a right to criticise anyone - it is not constructive criticism in my opinion to insinuate that the guy does not...
  8. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    In 2014 there was an official survey conducted in Norway that charted the responses of 1100 ME/CFS patients. This article summarises the findings: https://www.healthrising.org/blog/2014/07/04/norwegian-survey-chronic-fatigue-syndrome/ "The survey reported that 75% of Dr. De Meirleir’s...
  9. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    I would rather not get into sematics. Bottom line is if you have little understanding of something then it is not fair to make disparaging public comments and bold statements that could have negative consequences for someone's reputation. It is why we have libel/slander laws.
  10. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    Well that's unfortunate and I am very sorry that happened to you. It is not my view that people should not be criticised, if you have met KDM and were disappointed with your treatment then I can totally understand. Most of the criticism I see on here however is totally unfounded and from people...
  11. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    I wouldn't say he learns nothing from it or that he is transitioning to an entirely new treatment. You are making some very bold and potentially downright libellious false public statements about him - when you have never met him and are going off internet hearsay to come up with wild...
  12. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    You're putting 2+2 together and getting 5. The abx he presrcibes these days are mostly for SIBO - rifaxmin/vancomycin etc. These do not have an effect on pathogens however they allow the immune system to stop reacting to the excess lipopolysaccharides. The presentaiton you quoted is 3/4 years...
  13. T

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    In answer to the original question: He doesn't. He believes ME is an auto-immune disease where ground zero is the gut. The cause of the majority of symptoms for patients is related to the dysfunction in the gut (dysbiosis/ increased permeability/SIBO) as a consequence of this process. Major gut...
  14. T

    Interesting first appointment with Dr. KDM

    Sure. There are plenty of studies that show that saturated fat (and in particular coconut oil) increase LPS translocation. Here's one: http://lib.dr.iastate.edu/cgi/viewcontent.cgi?article=3795&context=etd "However, little is known about the effect of dietary oil fatty acid composition on...
  15. T

    Interesting first appointment with Dr. KDM

    I do think the fact that we have to use our guts every day doesn't help matters, like walking with a broken leg and wondering why it's not healing.
  16. T

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Where did you hear this? Also, there is another JAK1 inhibitor drug called upadacinib (AbbieVie) which I have seen is under investigation for numerous inflammatory conditions. From what I have read it is has a similar effectiveness to filgotinib, although it does express more affinity for...
  17. T

    Interesting first appointment with Dr. KDM

    He put me on a 4 day rotation diet, according to the results of my food stats test - so no Eggs/Amaranth. I think it's put together by a US company called BioTek. He didn't make any other specfic recommendations on the diet, I worked out that foods with saturated fat were causing a severe...
  18. T

    Interesting first appointment with Dr. KDM

    Yes, he advises 30 mins before meals.....
  19. T

    Interesting first appointment with Dr. KDM

    Sure. Lactoferrin holds on to your iron so it can not be used by pathogenic gut bacteria. It also helps reduce LPS binding to your immune cells reducing inflammation. It also helps break down biofilm and is anti candida/anti viral etc. Colostrum helps increase IgA in the gut. Mesalazine helps...
  20. T

    Interesting first appointment with Dr. KDM

    That's interesting Jim. It seems to me that most are now coming round to the idea that ME is a disease with its origins in the gut.
  21. T

    Interesting first appointment with Dr. KDM

    My scores were +5 +4 0 on the LTT. I'm not entirely sure how he came to the conclusion the Lyme is inactive either - perhaps it is a case of simplification, ie that Lyme is not causing me problems any more, it is the damage left behind (leaky gut). The only cytokine that was out of range was...
  22. T

    Interesting first appointment with Dr. KDM

    Hi everyone, this is my first post on here although I have been following Phoenix Rising since I got sick just over one year ago. I have been under KDM's treatment now for 4 months - it has been very expensive however I can say it has been money well spent as I now know what is going on in my...