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The De Meirleir Experience

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

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    Sometimes the TMJ can cause headaches, jaw pain, neuro problems and can be very painful to jaw, neck and shoulders. I wear a mouth splint at night so I won't grind my teeth as I have TMJ.
    I am a reg Dental Hygienist and worked for a specialist for years. Guess he is ruling out other
    disorders. The mouth splint works really well. A TMJ specialist should do the impression and splint. It can also help some people with sleep apnea.
  2. Nico

    Nico Senior Member

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    I'm wondering if the jaw clicking thing is part of the hyper-mobility aspect? When I was a pre-teen/teenager I had to wear a retainer for this. I have some hypermobility (thumb, recently in past year ankle)....anyway...that's just my assumption on the jaw thingy.

    I'm really sad to read olliec's experience. that does shed a dimmer light on the situation overall. darn.

    Re: Dr. Cheney: ha! I heard he charges something like 1,000$ an hour. Is that hearsay? For that price, I hope a pedicure is included ;) just teasing...but really...I heard that number from someone.
  3. snowathlete

    snowathlete

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    I seem to remember that Temporomanndibular is sometimes related to RA? I think De Meirleir is testing me for this, so maybe thats something he asks and tests for to rule RA out?
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've got "the jaw thing" too--guess it is TMJ--maybe related to EDs? But a lot of us seem to have "the jaw thing."

    Sushi
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sorry about your experience, olliec,

    I have always had prompt replies to my emails with questions.

    He does prescribe some meds that aren't available in the UK and some other places--but I believe he chooses them for good reasons. Just a note for others: because of this it is good to get your prescriptions phoned into a Brussels pharmacy as soon as you have the scripts. They will deliver to the clinic so you can pick them up there. They carry all the meds that KDM is likely to supply.

    I am in the States and have to have all my prescriptions re-written by a local doctor because prescriptions are not international. Re 4 ME, I believe the "low profile" is because the US company did not like this med offered at a lower price and with less of the preservative phenol in it.

    Sushi
  6. SOC

    SOC Moderator and Senior Member

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    SanDiego#1 - thanks :) Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.[/quote]

    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.
    Allyson likes this.
  7. justy

    justy Senior Member

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    I have the 'jaw thingy' too! it clicks and crunches when i open my mouth semi wide.

    I think in general there is a problem with follow up with M.E docs in general. I have recnetly had some issued with Dr Myhill about questions and being charged for them - and being left to fend for yourself most of the time. But i suppose they have so many patients, that unless you live nearby and can afford to go in and see them whenever you need to or for follow ups then this is what happens. Ohterwise you get charged a small fortune by Cheney for one to one attention.
    If we all had an M.E literate doctor around the corner from our homes who took insurance or was on the NHS then none of us would have this problem.

    Thanks for the article Joel - very informative.
    Allyson likes this.
  8. Allyson

    Allyson *****

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    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.[/quote]

    Hi Soc, I have a TMJ too - well 2 actually and had heard it was a symptom of ME - in the line of RSIs and joint pain I had heard.
    All these symptoms - and many more - only made sense to me whenn i heard of the theory of ME maybe being a connective tissue disorder - such a broad sweep could only be covered by such a generalised ...body part, as it were.

    see this thread for more and tmjs are mentioned about half way through i think

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/#post-310872
    SOC likes this.
  9. liquid sky

    liquid sky Senior Member

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    Hope you find some help from De Meirleir, snowathlete. The jaw thing is frequently found in Lyme Disease. Not sure if he checked you for this or not?
  10. David Egan

    David Egan Hermes33

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    Isn't it very strange that western governments waste billions of euros / dollars bailing out bankrupt banks and financial institutions and bondholders and fighting endless wars while enforcing cutbacks amounting to billions of euros / dollars in health services, clinics, hospitals, disability payments, etc.. They are undermining and destroying the very foundations of western societies - the health and well being of the people, the workers, the value creators.

    The British government and some other governments are now forcing chronically sick disabled people back into work, while depriving them of the necessary medical treatments to treat their illness. ME/CFS being one example of such chronic illnesses. Its totally outrageous, and shows how depraved some leaders and governments really are.

    And these governments claim there is no money to build ME/CFS clinics. But there is money to do this, plenty of money, billions of euros/dollars, all that is missing is some strategic thinking and actions, and true leadership on the part of governments. The proposals for an ME/CFS clinic on www.cfs-ireland.com could be applied in any country in the world, and furthermore, this web site has a listing of the 20 top ME/CFS clinics in the world which have had medically verified recoveries from ME/CFS. The only relevant question is - how badly do we (ME/CFS patients) want it and what are we going to do about it ?
    justy, Little Bluestem and jimells like this.
  11. Firestormm

    Firestormm Senior Member

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    Can I ask if you have been informed what all these tests are for and how effective they are? Only from your account they seem to have been 'standard' and I wonder to what extent this doctor has considered you as an individual or conducted a consultation.

    You also mentioned that Dr De Meirlier - in so far as you were concerned did not take an income from the clinic. This may be true, but I think you will find that he owns or has an interest in the laboratory that processes the tests.

    If this is the case then there is a conflict of interest (not necessarily a bad thing) in prescribing a battery of tests and then treatments (as per Ollie's comment), produced by one's family member.

    I've spent considerable sums on tests that were not considered necessary by the NHS. Sometimes they led to treatments - again not recognised by the NHS.

    At the time I thought I was at least 'doing something' and felt better for it. Afterwards? Not so much.

    I guess we have to 'suck it and see' for ourselves. We're not going to know without trying. I would like to have heard more about your tests and how he determined they were appropriate.

    The 'urine test' reminded me of the exposure he received way back in 2009. I never did learn what came of it all and would like to know. Presumably it never caught on/was accepted.

    I notice though that Cort featured that particular pronouncement on this forum at the time saying that some had termed it the 'big breakthrough'. Is Dr Meirlier still using such a test for the same thing, and thinking it is responsible for ME?

    Thanks.
  12. Research 1st

    Research 1st

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    Firestorm I would like to help answer you as well and, I hope this answer helps a little.

    The tests KDM performs are ''standard'' in terms of meaning the tests are based on the abnormalities he often finds in patients, from many years testing them. Overtime, KDM has obviously found a whole host of abnormalities to look for in people labelled with CFS or ME. The list is pretty exhaustive, but basically often something comes up that a patient is infected with (Virus, bacteria, zoonotic infection), or deficient in. These tests aren't allowed to be performed in the UK by UK GP's, as then the true nature of ME would be demonstrated to physicians. Believe you me, I have tried and I have seen many GP's and many hospital specialists. None of them allow tests, even if you show a doctor research based evidence.

    Try asking for a cytokine panel, an NK Function test, TILT test etc the NHS will simply say ''no''. This is sadly, why the UK has become the laughing stock of the ME world.(No choice offered to patients). This is inevitable in a socialized cost based health care system. Big brother has to dictate orders what a doctor can and cannot test for. No wonder Dr Myhill was ''reported'' by a sneak to the GMC for helping to give birth to a pig!!!!!

    Dr DeMerlier practices medicine and thus regularly performs medical tests that he has an idea might be abnormal. This idea is often alien to people in the UK who don't have access to a doctor that investigate the vast array of organic dysfunction seen in people with ME & CFS, and instead stick to the NICE guidelines that omit PWME in preference to unexplained non organic Chronic Fatigue....and we know where that leads to.

    I would not recommend traveling to KDM and spending your money if you have CFS or were diagnosed with ME, on the basis you have unexplained chronic fatigue and a few symptoms and can walk around and be active most of the time without classic 'pay back' and relapse from post exertion of body or mind with wildly fluctuating symptoms also that don't have to be associated to exertion at all. E.g on a Monday night you may have a sore throat, on a Wednesday afternoon you may be too short of breath to walk upstairs or from room to room and within two days you can walk down the garden. This is what ME does, it's erratic and the symptoms are largely immune, cardiovascular, and neurological with chronic pain that again, can be all over the place in terms of severity of different body parts. Chronic fatigue, is not. It's a symptom. One symptom. 'Patients' without ME can genuinely believe they have ME without any abnormal tests in their portfolio to suggest this. So for these people it seems a silly idea to waste thousands of pounds on a mere chance you might get lucky.

    Conversely, I would recommend traveling to KDM if you have ME and the classic autonomic dysfunction, recurrent vertigo, permanent headache of new pattern severity worsened by upright posture, cardiac problems that place you in A&E unless you avoid all stress, repeat viral infections, swollen lymph glands, erratic blood sugar control causing hypoglycemia, unexplained significant weight loss, severe chronic pain of an inflammatory nature (Including burning genitourinary symptoms), itching, MCS, bowel problems etc etc etc if you have asked these to be investigated in your own country and this is not followed up and so you have no idea why you are sick.

    KDM's tests give you some idea why you have the symptoms you do. They will show immune activation amongst other things.

    In the UK and indeed anywhere in the world without specialized private health care 99.9% of the time, symptoms are not followed up once a diagnosis of CFS/ME is made. This is because the symptoms are believed by the NHS in the UK, and the CDC in the US to be ''functional'' in nature (non organic). From here on they can be deemed as not a threat to the patient if left alone and not something able to be treated because they only belong to the patient as real (''beliefs'') and engaging with a patient searching for a mystery cause will only keep them focused on ''automatic negative thoughts'', which will delay a recovery.

    If you're used to that in the UK (this is what the Royal Colleges preach as 'evidence based' treatment for CFS/ME), then KDM's test ideas would seem like a Martian had landed in your kitchen and was offering you a bizarre recipe. No wonder people are cautious. I would always be cautious spending money on any treatment if someone told me I had an illness because they couldn't find the cause, and used no tests to come up with this diagnosis. But this is what every diagnosis of CFS/ME is. It means we don't know why you are ill using basic tests for other conditions. So KDM, sensibly, uses specialist tests and not basic tests.

    If it helps, so far I have had most (not all) of KDM's tests he recommends as worth looking at, and indeed, most of them are abnormal. Yes I did cherry pick because I follow CFS organic research, but really, this is the point. KDM is offering tests that are based on CFS organic research, so of course if you have ME (or think you do), you will likely come up positive. If you don't, and every test you have is negative then this is also useful as then you'd know you likely don't have ME at all, but simple unexplained chronic fatigue and thus a diagnosis of 'CFS/ME' is appropriate.

    I cannot travel. But what I do know is there is science in the medicine KDM practices as otherwise me ME 'likely' tests, would not have all been abnormal in the majority if I had only had a simple Chronic Fatigue of unknown cause (CFS/ME). Other patients I have spoken to also have the same abnormal results as me, and they are all severely affected long term patients. So there is a reason that KDM's patients gets the same test results as myself, and that is an underlying organic disease - ME.

    If you look at the kind of tests KDM does, they feature heavily in the ME International Consensus Guidelines. Available here:

    http://hetalternatief.org/ICC primer 2012.pdf

    That to me, is the benefit of seeing KDM. Not especially the treatment (all ME treatment is experimental unless a specific infection of deficiency is tackled) but the fact you can validate your disease as actually being a disease, to yourself and your family via markers for infection, inflammation, immune suppression etc.

    That's really what KDM offers and something that ironically could easily be offered in the UK or other pro psychiatric systems of health delivery, if the authorities allowed. For that to happen, the psych profession's grip on power would need to be dropped because a drug is found to be effective. Something like Rituximab + biomarker to select which kind of patients the drug works for. This may happen eventually, or sooner than eventually.

    A case of sitting it out, unfortunately. Hopefully not until the next millennium.
    justy, snowathlete and Valentijn like this.
  13. Valentijn

    Valentijn Activity Level: 3

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    Do you have any information suggesting he has a financial interest in R.E.D. Laboratories? I've looked online briefly, and the only indications I've seen imply he does not have an interest in it. Either way, I think it's generally better to avoid accusations of a specific conflict of interest unless you have some proof to that effect.
  14. snowathlete

    snowathlete

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    liquid sky - thanks, thats good to know. I'll look into that. Yes he is testing me for Lyme and that might be why he asked. He also asked if i had even been bitten by a tick, and i havent knowingly, but I pointed out to him that i live in an area of high lyme cases, so he has tested me for that, both PCR and Serology.

    Firestormm - I dont know which tests he runs "as standard", but I expect some of them are tests that he runs on most people, yes. Probably the stool test is one of these, and some of the immune tests, and then there are tests that I think he runs depending on your history, symptoms and previous results you might have had. I dont know if Lyme is a standard test or not.

    I know some of the tests he is running specifically because of my history, like toxoplasmosis because I used to have a cat around the time that i became ill, and some blood tests that have been out of range before when I was tested by the NHS. These tests were back in 2009 so I think he wants to see how they are now.

    His nurse sat me down and explained what each of the tests were for before I agreed to them. I probably could have put in more about the tests but the article as it is is already pretty big at close to 3,000 words, but I have posted all my tests on the forum if you want to look there though.

    Yes, I heard that he doesn't take a salary from the clinic. He uses several different labs (three in my case). One of these is http://www.redlabs.be/
    I think he was involved in the set up of redlabs originally and helped develop a number of their tests. Of course, as you point out, that doesn't mean there was any impropriety involved. But I agree that avoiding potential conflicts of interests is of course preferable. I read that he is no longer involved with redlabs in such a way.

    I think people have to make their own decision on whether to take a prescribed treatment, and where to buy that from. I think there are risks buying and taking anything whether it be made by a big company or a little one, and I think its good to find out as much as you can and then make your decision based on as much information as possible. If, like Ollie, you dont feel you have enough information, then I understand a reluctance to buy/take it.

    From my point of view, the NHS does zip for me, and if i want to get any improvement in my health in the next few years, then i have to take matters into my own hands. As I say at the end of my article, my decisions dont come with any guarentees, and I could end up in your position looking back, but I dont think that is a certainty. On the other hand, if i do nothing then im pretty certain i will remain as ill or worse.

    The urine test I just had, was something different from the one back in 2009. I did buy that test you're talking about, back in 2009. I dont know if that test is still being sold or not, but my impression is that it wasnt quite the breakthrough it was thought to be a few years ago. I had the slip from that test in my records though, and in the appointment, he asked if it came back positive or not. For me, it was negative.
    Sushi, Firestormm and Valentijn like this.
  15. Shoesies

    Shoesies Senior Member

    I had jaw surgery for TMJ about 30 years ago. They actually broke my jaw and rewired it into proper alignment! Worth it, from one perspective, because the misalignment was damaging my hearing. Now I wonder if it wasn't an ME/CFS thing, although I didn't (as far as I know) have ME/CFS at the time. I am hearing more and more about an association between TMJ and ME/CFS, but I can't imagine what the connection could be.[/quote]

    This is the first I have heard about a TMJ connection to ME/CFS/ I have had TMJ issues, MAJOR ones since my 20's. Hmmm...interesting.
  16. Daffodil

    Daffodil Senior Member

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    i thought it was common knowledge that kdm partly owns redlabs and maybe even the other lab in nevada...?
  17. snowathlete

    snowathlete

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    Indeed. Waiting for the next millenium might not seem so bad in 1999 but in 2013 thats a long wait. As you point you Research 1st, in the UK NHS they just drop you as soon as you have your diagnosis. Job done as far as they are concerned. Not good enough for me.
  18. Valentijn

    Valentijn Activity Level: 3

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    From what I've seen, the two labs aren't related, despite the similarities in name. The belgian one also has "N.V." after the name, which has nothing to do with "Nevada" but might add to the confusion. It also looks like Dr Meirleir said he sold his interest in the belgian RED laboratories 10 years ago. So if someone thinks he still has a financial interest, it might be wise of them to find evidence to that effect before making accusations.
  19. Shoesies

    Shoesies Senior Member

    Frankly, I do not care if a practitioner is profiting from my treatment as long as it is moral, legal and ethical. I have yet to hear one word about KDM that would indicate that he is not.
    Daffodil, justy, Sushi and 2 others like this.
  20. Firestormm

    Firestormm Senior Member

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    I didn't want to make too big a deal out of this one Val, I was far more interested in Snow's experience and of the tests, but here:

    Of course I will bow to IVI on this one (and his isn't the only commentary I have read in recent times about the RED Labs businesses).

    It may be that Kenny or his wife are not taking any financial reward from the business, or the clinic, or the tests or the products used as treatments.

    There is no inference on my part that a conflict of interest is in this case a bad thing. So long as people are aware.

    It is an interesting point to discuss nonetheless but it shouldn't detract from the interest I have in Snow Athlete's experience and with what Kenny is believing is now responsible for his patients' condition.

    Thanks for the more detailed comments above Snow. I will read and digest tomorrow if I may. Am rather beat. GP appointments tend to leave me that way as I am sure you can understand.

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