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Debates on ME in Dutch Parliament May 14; & Lyme May 15

Discussion in 'Upcoming ME/CFS Events' started by Sushi, May 10, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The original (and misleading) quote from Facebook is below in blue. Thanks to @serg1942 we now have a corrected version of this announcement, so I am editing the original post in this thread to lead with the correct announcement.

    (Incorrect version which was posted in the Facebook Group: UK World Wide Lyme Protest- local protests - ideas, inspiration, info)

     
    Last edited: May 11, 2014
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  2. Legendrew

    Legendrew Content team

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    Hmm, I think it somewhat damaging to make claims that 90% of ME/CFS patients suffer with lyme disease without any rigorous, peer-reviewed data to back up such claims (something I don't incidentally think he could ever have as I believe such a hypothesis is incorrect but that's another matter entirely). Perhaps a better claim would be that they show similar dysfunction in many bodily systems, that however is a long way from having an active infection and could lead research too far down one path.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This is only what the poster "expects" he will say--and he qualifies it by saying "his patients." (I believe he has lab tests indicating positives for Borrelia and/or co-infections in this percentage of his current patients.)

    Sushi
     
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  4. Tito

    Tito Senior Member

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    15 years ago, he said that 90% had mycoplasms. It is indeed what the lab results indicated. However, despite treatment (long term antibiotics) most people remained ill...
    Correlation does not mean causation.
     
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  5. Esther12

    Esther12 Senior Member

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    If he's finding that in his practice, then it seems pretty likely that he is using flawed testing.

    It would be amazing if anything like that number of CFS patients were suffering from Lyme at one doctor's clinic.
     
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  6. Tito

    Tito Senior Member

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    He made the same statement before the Belgian Senate. There was another researcher who said that only 35% of ME patients are in fact Lyme patients.

    I am not debating who is right, who is wrong, but what is damaging is that ME patients will then all be seen as having Lyme. And the very little research into our illness will just stop... I do believe some of us have Lyme, but not the majority.
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This quote only mentioned correlation, not causation.

    Sushi
     
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  8. alex3619

    alex3619 Senior Member

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    The prevalence of Lyme is one issue, the existence of ME in post-Lyme patients is another. ME occurs after enteroviruses, herpes viruses, Q-fever, Ross River virus, the SARS virus, and we have vague and badly in need of investigation grounds to claim even due to HIV. So post-Lyme would also be expected to have problems.

    I am deliberately ignoring alternative pathogen lifecycles here ... that's a whole other debate. The notion that pathogens are cleared after the acute phase is dogma that really needs to be revisited.

    Given our deficits in immune function, then we have no way to currently distinguish between causative pathogens and opportunistic pathogens.

    Prevalence of Lyme is probably strongly influenced by geography, so rates will vary. Its also influenced by the kinds of patients who seek out specific doctors. So a Lyme doctor will indeed have high percentages of Lyme patients, but that is not necessarily reflective of other nearby medical practices.
     
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  9. SOC

    SOC Senior Member

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    This is the testimony of one doctor reporting what he sees in his clinic. This is not a scientific research paper, or a claim that all ME/CFS patients have Lyme (or other tick-borne infections), or a claim that there is a cause-effect relationship between Lyme and ME/CFS. I suggest we don't read more into this than it actually is.
     
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  10. rosie26

    rosie26 Senior Member

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    I just wish ME were number 1 on our tongues and not CFS and all the other names that like to shout over ME and take away from it. I don't believe I have Lyme nor probably the majority of the 20.000 odd New Zealanders who have ME. I would be shocked it we all had Lyme or a high majority. I hope it is understood by all who hear him speak that he is referring to his practice only. A voice with a government and he talks Lyme 90% , we are talking about ME aren't we.
     
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  11. Tito

    Tito Senior Member

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    This is the web page of the conference in Brussels last month:
    http://nelelijnen.be/index.php/lyme/300-ronde-tafel-23-april-2014

    It is in Dutch, but some of the videos and some of the presentations are in English. For the presentations, go to the very bottom of the page and you'll see,
    "U vindt de presentatie van Dr. Perronne hier.
    U vindt de presentatie van Valerie Obsomer hier.
    U vindt de presentatie van Dr. De Meirleir hier.
    U vindt het bundeltje van de ronde tafel hier."
    Click eah time on the word "hier" to see the presentation
     
    Last edited: May 11, 2014
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  12. serg1942

    serg1942 Senior Member

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    Hi everybody,

    I need to explain that the news about the Dutch parliament were a misunderstanding, and are therefore incorrect.

    A friend of mine who belongs to the list of people who are taking part in the meeting, sent me this:

    "Kdm will talk with the Health Commity of the Dutch parliament this Tuesday. But it is about our citizens initiative to recognize ME according to the WHO ICD 10 93.3. It will not be a discussion about lyme. Science is not ready for that. Maybe KDM now thinks most people with ME have lyme, but we cannot put those diseases together yet.The next day there will be a discussion in the parliament about another citizens initiative, the one about lyme. KDM is not involved there. These two things are completely separate and it is a coïncidence they are discussed in the same week. (...) I think the thread with the information about KDM talking in the Dutch parliament should be removed, as it could affect our own interests. "

    So I think this thread should be corrected, by deleting the info about the Dutch parlieament, but leaving what Dr. De Meirleir showed in the recent Belgium conference, where in his presentation shows a 95% of people with CFS being positive for Lyme:

    http://nelelijnen.be/images/nele_afbeeldingen/laatste_nieuws/2014/Presentatie_De_Meirleir.ppt

    The above statement is what I understand from reading the second slide of his presentation. Someone who understands the language should confirm this by listening to the video. However it seems very clear, and it is public on the Web.

    Best!
    Sergio
     
    Last edited: May 11, 2014
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  13. serg1942

    serg1942 Senior Member

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    The information has been properly corrected. Now it says, and it's been verified by a person who will participate in the event:

    Sergio
     
    Last edited: May 11, 2014
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  14. NK17

    NK17 Senior Member

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    @serg1942 Thank you, gracias for the clarification!

    When I first read this thread it made me cringe because honestly we PWME don't need any more confusion and muddling of our already muddled waters ...

    I'm not saying that Lyme infection/coinfections do not exist or coexist with ME! They certainly do as other infections such as Parvo B19 and others do too.

    I think and hope that KDM will be able to get to the point and deliver the urgency and gravity of our disease (which is not a syndrome).

    I've always looked up to the Dutch people and country as an open minded, multicultural, inclusive and humane culture and society, but I've been really upset and saddened by their treatment of PWME.

    We really need an international grassroots movement, we should write a manifesto in as many languages as possible and send it to our representatives!
     
  15. serg1942

    serg1942 Senior Member

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    Well @NK17, the 90-95% is a lot, and it has already been stated by several important ME/CFS doctors.

    I don't think it is another infection. It is known to cause symptoms such as those of ME/CFS, what automatically would suppress the diagnosis of CFS, and be substituted by Late Lyme infection.

    Even if it is everything or not (Maybe it is for many, and not for others), it does exist, and it has a treatment. So if this percentage is officially recognized and confirmed (note that the LTT test has been approved by the FDA), then about an 80-95% of PWCFS would have a potential treatment available. Besides, the implications goes beyond this. it is an infection, and as such, it is easier to be understood by the society, the medical comunity, etc. (You know, the model cause-effect is still very atractive). In addition, I think it would be also very appealing for the pharma-industry, that is, to invest in finding new and better drugs to erradicate the chronic infection.

    Finally, let's not forget that Borrelia is known to infect by means of TLR receptors. And this mechanisms was proposed by Lombardi et al in the poster presented in the last IACFS conference. What means that, treatments for HERVs in order to stop the Borrelia or another pathogen acting through the same way, could be designed. Actually this is already happening for MS as was recently published.

    So I think this may be a turning point. Let's be cautious, and see how things developer.

    Best!
    Sergio
     
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  16. Tito

    Tito Senior Member

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    ... like EBV, toxoplasmosis, skeletal tuberculosis, CMV, hepatitis B, syphilis, ... The list is long. The characteristics of Lyme is precisely the non specificity of symptoms. Otherwise the connection would have been made years and even decades ago.

    Well... A treatment that works for very few people it seems... Where are these hordes of cured patients?

    I agree

    Pharmaceutical companies have very little interest in developing new antibiotics. They spend most of their research into drugs that control illnesses (tablet you swallow every day for 30 years) rather than curing these illnesses. Of course, tax incentives for example could make the whole thing more attractive to companies.
     
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  17. serg1942

    serg1942 Senior Member

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    No, all infections are not the as difficult to treat, and many of them are virtually in most of healthy people such as EBV or CMV. Anyway, when we say Lyme, it involves also co-infections and viruses that also induce the expression of HERVs, so actually, the ABX therapy can be very beneficial to many, especially when combined when other therapies now available like GcMAF, good detoxification remedies for Herx, ect. I'd actually say that if you can afford it, KDM's treatment or a similar one may improve significantly to many patients. (I am a "live" probe!). What happens is what I have been explaining during the last 10 years I have been around: most people who improve go back to live, and don't want to know a thing about the disease... Anyway, if you read the dutch and french forums, people are having success.

    As for the pharma-industry, I didn't mean ABX, but antiretrovirals, monoclonal antibodies, etc.

    Best,
    Sergio
     
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  18. Tito

    Tito Senior Member

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    So you use the term "Lyme" to refer to a whole cloud of pathogens in the context of an immune disease. Isn't it ME you are talking about then, instead of Lyme disease?

    Glad that it worked for you. I nonetheless remember KDM telling me 4-5 months ago that GcMAF was ineffective. It it effective again then?

    So it is because these people are substantially cured that they no longer post anything about their recovery, right? They are essentially busy with other things.
    That is weird because when I check the profile of those who announced an improvement a while ago and never talked about it again, their profile indicates that they still regularly visit the forum... Is it because they want to keep their lasting improvement confidential? Or could it be the case that the improvement did not last and that they are still ill?



    Sergio, I am sick and tired to see some of us here running like beheaded chicken after any allegedly successful treatment mentioned here as the holy grail, spending dozens of thousands of dollars on these so-called treatments, travelling thousands of miles, only to get worse and worse and worse. You are too intelligent not to notice that under the disguise of "I'm just sharing my experience" you also perpetuate a state of denial in some of us that leads to health deterioration and financial distress in people who cannot afford any of it. It may feel good to be one of the rare ones who are graced with sustained improvement, but please enjoy your luck and do not leave a trail of desolation behind you. Thanks

    Sorry it felt on you mate, because you seem to be a genuinely nice chap, but it needed to be said.
     
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  19. serg1942

    serg1942 Senior Member

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    Hi @Tito ,

    To have Lyme disease, in most cases probably means to have CFS?, you can put it that way. Why? Just study how Borrelia infects you, and how it interacts with viruses and together wreck the immune system, causing inflammation, polyclonal lymphocytes proliferation and mimicry autoimmunity...

    GcMAF works for about a 50-70% and improves those for who work about a 30-70%. I call this working. This is what I am seeing and KDM gave a similar percentages in a talk about GcMAF (Less but still good results are being reported by doctors treating autism). If he says it doesn't work probably is because it doesn't cure most patients, and he is trying to find a cure (Just my interpretation!). Also, I said "GcMAF together with". It must be an holistic and tailored approach. If your nagalase is normal, the probability of GcMAF working is low and vv.

    I have read or listen to this from Dr. Myhill, Dr. Klimas, and many others. Plus, I run a CFS-research-spanish forum, where I have been seeing this phenomena for the last 8 years, in a few tents of patients (some with whom I continue in touch). People who get better, just disappear from forums and places related with the disease. Normally they write a post saying the are much better or cured, and you don't know anything else from them. I think this is natural.

    Just explaining my own experience and quoting what many CFS-specialist doctors say. We also know there're relapses.


    True, and this saddens me deep in heart ... that's why I try always to post about treatments that I see with my own eyes that are working, or I write about new findings that I think, from a scientific point of view, could lead to successful treatments (We also need hope, when the hope is justified!). I can be wrong, but I do my best in this regard.

    So you said it :) ... It is not my fault the "state of denial" of some of you; and it can also be productive. Discussion and debate is what we need. I can say that all the treatments I have commented positively about over the years have brought great improvements for many (unfortunately not for most): support the methylation, the mitochondria, LDN, and GcMAF, mainly. Now I am just explaining how important it is to confirm that a 90% of PWCFS have Lyme. If this is confirmed, most of us would have treatment.

    I have not yet said a word about the efficacy of the treatment for Lyme, because I don't have enough information yet. I think it is too early to know, and it would be incautious to extrapolate the results I am seeing in some KDM's patients, to the whole CFS population.

    But listen, IF we are infected by Borrelia, this bacteria is not any other opportunistic one, and you also seem quite intelligent to now this. So it should be a must for those infected that want to get better to treat it. Just my view.


    I'd like to remember here what Rich Van Konynenburg said plenty of times: People who got cured with his proposed treatment were those who had treated previously the terrain, mainly detoxifying heavy metals, treating mold poisoning and/or treating Lyme and co-infections.

    Don't worry, no offense taken. We are here to debate and give our opinion, with respect, and you've done that.

    Best!
    Sergio
     
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  20. justy

    justy Senior Member

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    I think it is very important to remember that the MAJORITY of patients with M.E/CFS probably don't go on forums at all, so we wouldn't know how they get on would we?

    I was in KDM'S office this morning and it was very busy with new patients, returning patients and also many in doing IV'S - they were mainly Belgian and Dutch a couple of French and two English as far as I could tell- none of them where the Dutch or English patients of his that I have met online here so we are not hearing their stories.

    KDM seems to work very hard and I am glad that he will be speaking for patients to the Dutch Govt - he is a very capable man.

    BTW he told me this morning that 95% of his patients are now testing positive for some type of bacterial infections - I guess not necessarily Lyme. He believes that genetic typing is important as that could explain why some people find it harder than others to 'clear' the infections. I think he said they had some research coming out on this soon - but don't take my word for it as I only had 3 hours sleep due to noisy boiler humming loudly all night at hotel.
     
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