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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

The De Meirleir Experience

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 28, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    And now you know the partner list is out of date by a decade. So what's the point?
    merylg, Sushi and Shoesies like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A couple of points: I think Research 1st was right on about the testing. In my experience, the tests that KDM orders are both diagnostic and screen for the best treatments for the patients. For instance, GcMAF is one of the treatments offered, but not everyone will do well with it. So, it is important to screen for factors that would indicate that the patient is not likely to respond or might have bad reactions--like IRIS. Some doctors prescribe GcMAF without these tests and some of their patients get IRIS--which is no joke.

    Also, while the tests do add up to a lot, I believe they are less expensive than the same tests at a US lab--if you can find a doctor to order them and a lab to run them. And, even if you manage to get these tests, you need someone to interpret them and "put them all together." This is priceless and is not included in the price of the tests, but is included in the fee for your consultation with KDM. The patient receives a several page report when all the test results are in.

    Not all patients get the same tests--yes, some are screening for the abnormalities commonly found in ME patients, but as Snowathlete mentioned, some are specific to your history. In a patient's first consult with KDM, you can almost see the wheels turning in his head as he evaluates your history and previous tests and puts it all together to get a picture of what is happening with you, the individual patient.

    Because I came from overseas and needed to have blood drawn for tests the day after my consult, he took my file of previous tests and history home with him so that his test recommendations would be available for me in the morning.

    I don't think it is necessarily a conflict of interest to have an ME specialist involved in a research laboratory (I have no idea what, if any, that relationship is). If new research is indicating that "such and such" could be a factor in this illness, having a research doc advise a laboratory on the design of appropriate new tests seems to me like a boon.

    Sushi
    Shoesies and justy like this.
  3. Firestormm

    Firestormm Guest

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    I presume that 'current partner list' means, well, current. As in pertinent to the date of that article i.e. May 2012. What's your point? I am informed however from a colleague in the country that the situation is complex as it often seems to be when pouring over company structure details. Perhaps IVI can directly post the detail from which he was quoting - when he next surfaces.

    Anyway, back to the thread...
  4. Firestormm

    Firestormm Guest

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    As I said, I appreciate you candor, Snow. I will have a look at the tests prescribed if I am able and see what RED LABS are using them for these days when I get some more time.

    I think one my own failings in the past has been - and this applies to NHS and well as other doctors - has been that of trust. I have trusted them to decide what to interpret from my consultation, what (if anything) to test for, and to interpret the results (if there were any), and then to trust in their diagnosis and/or prescription.

    Not saying of course that placing one's trust in a doctor is a bad thing, but I do look back and think to myself 'What were they actually testing for? And how was the result interpreted?' End of the day I suppose it all boils down to opinions. I used to think that the more doctors I saw the greater the chance of a change to my circumstance through, I presumed, better and more appropriate treatment.

    So, I inevitably headed towards those doctors who were outside of the NHS. Again not necessarily a bad thing. The NHS is not infallible and neither are those doctors who work for them (and many of those work privately also). But I think when my own money was being needed, I was more cautious - at least I like to think I was.

    Of course being an ignorant patient and layperson I was in reality perhaps too trusting. At the time of course I thought I was doing something positive and perhaps felt that the treatments prescribed were in some way more likely to succeed. Looking back I was a naive sod.

    I must have had a body-worth of blood taken over the past 15 years. I could tell you a bare fraction of what was being tested for and probably less what it was they found, or didn't find, or more importantly how relevant those results were deemed to be.

    Same goes for pee and pooh. Endoscopies and Colonoscopies. I recall recently seeing that Invest in ME were advertising that they wanted to fund research into the gut. Maybe this is still something worth consideration? Though whether in relation to ME or to IBS more generally I couldn't say, but I think this was where - in the past - De Meirlier was heading.

    I have never really seen the point of prescribing supplements as treatments for ME unless it is to build us up if we are in a particularly bad way nutritionally. I can't see how such a thing - and I have been there done that - could possibly correct some defect in our gut for example.

    Anyway, from someone who spent a lot of money in the hope that testing and more appropriate treatment would point the way, I shall be interested to learn more of your continued experience with this particular clinic. I will take a look at the tests and the treatments if I can find more information out about them.

    But whatever the possible conflicts, whatever the tests and treatments prescribed by this clinic turn out to mean, I do wish you and everyone the very best. Sometimes something can and does kick-start our move towards remission. We might not really understand why but if 'it' works then who cares?

    Take care. I've not been able to try that Eurostar yet myself. Sounds like a great way to get across the channel. Pricey though but then I'm speaking from a position of relative poverty these days :)
    merylg likes this.
  5. Research 1st

    Research 1st

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    I agree with Sushi, not that this is a competition.

    Redlabs is a small lab. It offers a few research based specialist tests for a very competitive price as mentioned. Big labs, offer 100's if not 1000 tests. One can get 'lost' inside big labs easily and waste a lot of money. Redlabs tests are mostly ME CFS specific, preventing this.

    If people want to act upon the results, they can if they wish. Either they get retested at a validated laboratory to confirm results for legal reasons or just keep the results for their own health knowledge base. (What most patients do). Redlabs offers choice, something people with ME CFS rarely have, very rarely.

    Without KDM I and others would have little immunological evidence that they are immunologically ill. Patients who use Redlabs who gain this evidence are very grateful for the laboratory services offered. I'm sure others mirror this opinion who have been sick for decades and neglected with no access to appropriate medical care.

    #Redlabs offers tests at prices most can afford without large profit margins of commercial labs.
    #Redlabs offers tests PWME find it hard or impossible to access that prove they are organically ill.
    #Redlabs make it clear their tests are for a research basis on their test forms.

    Lab results from Redlabs in someone severely affected with CFS, (possible ME), are worth it.
    They are often abnormal and prove ongoing significantly elevated levels of immune activation, inflammation, and even immune suppression. This aids people to remove themselves from a misdiagnosis of Fukuda CFS, and CFS/ME (in the UK). Both of these diagnostic criteria for CFS ME do not allow for explained reasons for 'chronic fatigue'.

    When we see any doctor privately in the world, they are all selling their products and services to us for profit, namely, their knowledge. E.g. you see a doctor, they tell you CFS is treated with CBT/GE, do no tests associated to having ME and you pay $800 for the service or you pay for it through taxes with the NHS.

    For me, that is a worthwhile conflict of interest. People selling CBT and GE for ME, (that has no scientific basis) and telling patients it is 'evidenced based'. Complex immunology changes from test results naturally challenges the scientific basis of using CBT and GE to ''get better from ME''.

    Now that's a conflict of interest people should be worried about and the entire private medical system and socialised medical care systems engage in it on a grand scale saving trillions of dollars by refusing medical research to make people better from subsequent drug therapy who have CFS ME. Research that if permitted, would be aided by Redlabs findings, no less. Redlabs is thus a valuable commodity and helps reduce mental suffering in ME patients who otherwise have scant evidence they are sick and unfairly remain accused of having a biopsychosocial disorder.

    Not a situation anyone would want to remain in place I'm sure.
  6. alexa

    alexa

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    I have been a patient of KDM for about a year and a half.

    He is very effective and this can be seen as cold but i like that he did not ask me a lot of questions. In the past doctors have asked me and i can tell you how i feel for hours. KDM took extensive lab testing and then deducted from the lab test how i felt. it was lovely to sit in front of a doctor who said , does your bladder burn? ( yes) tummy like a pregnant woman ( yes)

    I agree with the problem of the scripts, my swedish pharmacy was not impressed and it took some time, but i always got help from the clinic.

    Redlabs have given me an abundance of usefull information that i have tried to take to my regular swedish doctor, she just shakes her head, she will not include information from any other source into my file. KDM found my Brucella but my swedish doctors won't accept it since it did not show up on their test ( a notoriously hard test, many false negativs, no false positives)

    KDM is dedicated and hardworking. I have been on enteric coated antibiotics. 4 ME, GcMaf, and now on antibiotics for brucella. I am not sure if i am better, i have only been on the treatment for 10 months and i have had times when i have not been able to afford the shots. during this time i have felt ok sometiems and shit sometimes.... like ME :)

    I will see him again in march and we are starting to monitor my antibodies to see if i could have a normal pregnancy and a healthy child.

    his daughter has ME, and has a healthy child.

    My sister works in an lab and she says that redlabs prices are normal and just for their work. who profits? who cares, i would rather someone gets rich from my recovery than my demise.

    KDM tries to give me hope, and i would take it if i had ever heard of a ME sufferer getting a lot better.
    Clodomir likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    IVI is not a valid source. The closest thing his post on his blog comes to a real source is a website where people can pay for records, which probably is just a dump of all information ever associated with the company, with no regards for how current that information is. For example, IVI lists "Dexia Ventures" under "current partners", even though they ceased to exist in 2002. There's no sign of actual records, much less current ones, indicating what you claim. Whereas there are claims that Dr Meirleir says he sold his interest in R.E.D. Laboratories 10 years ago.

    If you're going to make accusations that someone is denying, I think it's a good idea to first find some proof of those accusations.
    SOC likes this.
  8. Firestormm

    Firestormm Guest

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    Oi! I didn't make an issue of this Val. You are. I said most recently that IVI will probably come along and quantify his article. Here's another source. It was Johan with whom I most recently conversed. In his reply to a comment he received he confirmed that De Mierlier was still a partner.

    I say again - it matters little if there is a conflict of interest. What matters is that patients are aware that there could be. I am not saying that Kenny is deliberately testing patients with tests he has developed, processing those tests, and through some commercial venture with which he and/or his wife are connected is purposefully creating wealth and that it is all in some way fraudulent.

    As a former business person I would suggest that from a business perspective it makes financial sense for a private clinician to have his own clinic/laboratory interest/and be able to offer tailored treatments. Wraps it up nicely and maintains control (to a greater or lesser extent) and yes, it could maximise return.

    It doesn't mean that what he does or prescribes by way of treatment is for shit. If people don't want to take on board what IVI has researched and said - or Johan for that matter - then fine. I merely pointed it out - as did Ollie.

    You could always ask Kenny to declare his interests as could any patient of his come to that. I am actually more interested in the efficacy of his tests and treatments than his commercial relationships or how much he earns each year from the patient charges.

    I don't think I have done anything wrong here. I haven't defamed anyone. WPI for example had interests in laboratories responsible for testing patients over XMRV at least and I believe Kenny was testing similarly for patients over that one too.

    Indeed from memory and whilst on the subject in at least one of his papers from 2009 I think it was (will check) he refers to the possibility that XMRV infection was in-line with his thinking in terms of the 'damage' to the immune system.

    Here's another post from Johan who was a patient of De Mierlier's asking about the XMRV testing that this doctor performed and his interpretation of those tests.

    I don't think I want to continue this line of conversation with you. If you feel that in drawing attention to this contention I am in some way at fault - then please report my posts and let's let the moderators decide.

    If all of this gets deleted or moderated by them then so be it. Personally I wish it had been left as it was when I made my first comment. But you're the lawyer so you probably know far more about all this 'You can't say that on the internet' malarkey than I could possibly ever hope to.
  9. Firestormm

    Firestormm Guest

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    Am a little lost. Is there any reason why when I type 'De Meirlier' into the ncbi pubmed database it only results in the one study from 1991? http://www.ncbi.nlm.nih.gov/pubmed?term=De Meirlier

    I think I'm probably doing something wrong. I know he's published more than that. Not used the search function before. Am such a dunce :) Danke.
    GcMAF Australia likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    It's "De Meirleir"
  11. Valentijn

    Valentijn Activity Level: 3

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    Yes you did, when you brought it into the discussion as a means to call into question the tests being suggested by Dr. Meirleir.

    Your statements may be based on IVI's poor research, but you are still responsible for them. "IVI said" is not a proper source. To avoid similar embarrassment in the future, it might be a good idea to check your sources first.

    Yes, I read that. And as you did, you'd be aware that someone on that page claims Dr Meirleir says he "stepped out when it became a lab/went commercial in 2003." And you would also be aware that Johan provided absolutely no response when asked where he got his information about Dr Meirleir still being a partner. I don't think asking for a credible source of information is such a hardship. Again, "IVI and Johan said so" is not a credible source.

    I'm a big fan of free speech. But I'm not a big fan of the "I don't want to talk about this anymore, but I'll keep pushing my point" posts. If you don't want to continue this line of conversation, the solution is easy. But if you keep insisting or implying that there is some undeclared conflict of interest that should cause us to distrust Dr Meirleir and the tests he uses, I think you should accept that some people are going to continue to disagree with you.
  12. Firestormm

    Firestormm Guest

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    That is NOT what I was doing, Val. How about transparency? Knowing who is behind what is being sold and whether or not what is being sold is actually a medical treatment. You adverse to that also or maybe you too think I am some damn plant?

    This is forum. I dare say many folk were aware of his connections and his former research findings of XMRV and testing etc. I ain't writing a dissertation here. Or penning a lecture.

    If you would like some sources outside of those expressed by those two I have already linked, then you'd have to wait. I understand that much of it is in Dutch but I have asked.

    It isn't a big deal who or what Dr Meirlier is or isn't associated with. And yes I realised that in replying to you originally I was indeed raising it but it was I thought in response to you declaration that his disassociated himself 10 years ago with Red Labs.

    There is some contention over that matter. It is hard for me being in the UK hence the link to Johan. I suggest we leave it there.

    You know I don't think there is anything wrong with me being sceptical. I have been burnt by those who operate outside of the NHS. I won't name them. The thing is that ME works against us being a condition(s) defined solely by symptoms.

    It leaves us more open to opinion and to treatments and tests and financial and emotional/mental loss. Sometimes (at the time) it is all too easy - as I know - to feel a need to 'do something' rather than - I don't know - learn to accept that this is my lot in life now and to make the most of it.

    I have experienced periods of relative remission where activities are easier to perform and these were NOT caused by any treatment or protocol that required financial expense.

    Yes, it's my own experience and I am perhaps biased but I would say I am healthily biased. I don't see anything wrong - speaking generally and not in connection to De Meirlier - in asking questions.

    I haven't asked enough in terms of tests and recommended treatments as I said before. On forums we are trying to gain a greater knowledge and understanding - an appreciation of the known facts if you like.

    Sometimes we don't have the ability to gather the information for ourselves and so we share. There's no judgement. I am not telling people not to buy McMAF or whatever it might be.

    We all make decisions. We are all responsible for them. I'd rather be informed as much as I am able before embarking on such a financial investment again.

    I tell you what. I will now send an email to De Meirlier's clinic asking for a financial interests disclosure. I doubt if I will get a reply but I might. If I don't then that won't infer a judgement on my part against De Meirlier.
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  13. maryb

    maryb iherb code TAK122

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    I always knew KdM was a director of Red Labs Belgium - it didn't bother me, I don't see why a doctor should present this information before treating you or doing tests, its irrelevant. As long as the lab is reputable and used by other sources then what's the problem?
    I haven't had any improvement, I don't blame KdM though, I'll do a couple more visits and hope something works, people pay their money and put their trust in ME doctors, no guarantees but the lucky ones may get an improvement, and improve their quality of life, dramatically for some.
    As for the clinic, my e-mails have always been answered promptly, prescriptions faxed over to UK chemists very quickly, repeat prescriptions put in the post the same day of request. Brilliant nursing staff when you visit, I could go on.

    I hate these picky discussions, I'm not saying they shouldn't happen but their are just irritating for me, why not focus on the fact that he doesn't charge a lot for consultations, you get the choice what tests you want done and a price list up front, and they aren't astronomical, other private clinics charge much more.
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  14. Research 1st

    Research 1st

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    Thanks for your experiences Maryb. It's great to hear the clinic in Belgium can fax over prescriptions to other countries like the UK, presumably a benefit of being in the EU? I was always thinking how one would cope with hostile doctors in the UK who might block prescriptions written by other doctors out of the UK.

    It's really positive to see patients able to finally engage with medical care and and then hopefully make some improvements in their health by having alternatives to treatments that dont' work (CBT, GE).
  15. David Egan

    David Egan Hermes33

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    Firestormm, we have listed some research papers by Kenny De Meirleir and others supporting his findings at http://www.cfs-ireland.com/scientific/1.immune.htm
    There are categories for other biological dysfunctions and accompanying scientific papers on our web site at http://www.cfs-ireland.com/listing.htm
    And the Scientific Evidence section gives one a good scientific overview of the illness - http://www.cfs-ireland.com/scientific.htm

    As regards conflicts of interest and Kenny De Meirleir, it may be a consideration but it is far more important to measure the effectiveness of his diagnosis and treatments in terms of people recovered or partially recovered < 70% full capacity / full health.

    We have a listing of 20 top ME/CFS clinics in the world on our web site www.cfs-ireland.com and have contacted them with a view to establishing exact number of recoveries and partial recoveries. If one recovers, does it really matter if there are conflicts of interest ?

    ME/CFS is a multi-layered illness encompassing many biological abnormalities and dysfunctions and infections. And these need to identified, with precision, and treated individually or in paralell. Our web site examines this in detail. ME/CFS is difficult to diagnose and treat, and old outdated dinousaur socialist medical systems in Europe cannot possibly diagnose and treat sucha complex multi-faceted illness. A privitised health system based on new technology, innovation, dynamism, hard work and productivity, openness to new ideas and new insights , and financed through universal insurance schemes is the only realisitic hope for European countries And its very achievable.
  16. August59

    August59 Daughters High School Graduation

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    I'm very eager to keep following this thread and I would like to say thanks to Mark for writing such a great article about his visit. Dr. KDM, clinic and Redlabs appear to be providing pretty close to the best value of treatment in the world. Doing all of this while providing studies and clinical trials. He always seems to be following the data that is present in research and uses it to further the treatment to his patients, which I can't say is true fo a lot of the other CFS specialist. I understand at times the data seems to want to go in diffeent directions and I believe that is directly due to different subsets that will get sorted out over time I hope.

    Thanks again for a great article!
  17. Mark

    Mark Acting CEO

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    Apologies for any confusion: I merely published the article, Joel (snowathlete) wrote it. (Technical changes should make this clearer in future). I agree it's a great article. :)
  18. August59

    August59 Daughters High School Graduation

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    Thanks Joel!!!
  19. barbc56

    barbc56 Senior Member

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    Firestormm likes this.
  20. Firestormm

    Firestormm Guest

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