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Is it worth seeing an ME/CFS specialist?

Discussion in 'General ME/CFS Discussion' started by SOC, Jul 31, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    More cognitive issues than whom? Many here with these viruses have a lot of cognitive issues. Maybe it is whether your viruses are active or not.

    Sushi
     
  2. Tito

    Tito Senior Member

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    I too heard about that percentage. However, it is a statement made by these specialists themselves. I have great reservations about that percentage. If they can really help 50% of their patients, how come there are still no standard guidelines to help people? How come these "specialists" all have their own recipe? The very fact that Dr A says mercury, Dr B says gluten, Dr C says virus, Dr D says Lyme, each with a different protocol, is a clear indication there is no standard for the hypothetical 50% who would benefit from a treatment (whatever it might be).
    My personal feeling is that around 5-10% of patients are helped by their specialists, no more.
    Over the years, I noticed that the treatment offered depends on the fashion of the day. 13 years ago, it was mycoplasm, then it was mercury, then it was a virus, then gluten, then methylation, then lyme etc. I never had the impression that I received an appropriate treatment for myself, I just followed the fashion of the day. And I can say I was a fashion-victim.
    There is an issue that is almost never mentioned: the impoverishment of patients because of these medical expenses. My question is: is it really reasonable to spend so much for so little? Some of us could have had a better quality of life had they kept their money for themselves.
     
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Tito

    I get that 50% figure from talking to patients themselves. And, it may well be a different 50% with each specialist. i.e. they use different treatments and successfully target the needs of a different set of patients.

    I have found that I am spending much less now that I am seeing a specialist as the treatment is targeted to what my tests indicate is going on.

    Sushi
     
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  4. Firestormm

    Firestormm Guest

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    Tito I agree with a lot you have to say.

    We also need to ever bear in mind that we are all different. You only have to look over the forum and see all these various tests and the multitude of results; not to mention the host of different specialist interpretations of data. And all of that - in some cases - before you get to the various recommended treatments.

    Still you are right. We seem to spend more time discussing the presumed things that help be it physicians or treatments - only natural I suppose - than the things that don't appear to help at all.

    And the bottom line ever is that nobody seems able to demonstrate that a particular treatment works because nobody knows what ME is: assuming we are I suppose chasing a fix. But even if you take something like MS there remains a great deal of industry and patient expense outside of the recommended treatment protocols.

    A person with MS may still require or feel the need for non-MS approved treatments. Be they prescribed medications, over the counter ones, supplements or alternatives.

    Human nature I guess. Then I am a skeptic and have been burned like yourself. I am pleased though to hear others have found something or someone they feel is helping. Equally I am pleased to hear from those who come back and post about things that haven't.
     
    SOC likes this.
  5. SOC

    SOC Senior Member

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    I think this all depends on how you define "specialist" and "helped".

    By my definition, an ME/CFS specialist is a medical doctor who does extensive testing including (at least) appropriate immune testing, cortisol, thyroid tests, and testing for the 6-10 most common infections in ME/CFS -- and probably more I'm not thinking of at the moment. They are aware of, and treat, immune dysfunction, sleep dysfunction, autonomic dysfunction, and gut problems. They are up-to-date on the current research. They pay attention to, and incorporate, the successful treatments of other specialists. They don't think ME/CFS is all about one virus or bacteria, or gluten, or methylation, or amalgam fillings. They don't have their own unique recipes, although some have a stronger focus on some things than others. They don't use only one treatment and give up if it doesn't work. They keep trying to help patients. There are probably only 5-10 of these specialists in the world -- and they're worth seeing.

    "Help" is a very vague word in this context. If we define "help" as "significantly improve the quality of life" then some doctors (Drs Klimas and Petersen come to mind) help well over 50% of their patients. If we define "help" as "cure or put into full remission", my impression is that far less than 50% of patients are "helped" by that definition.

    My family has spent a lot of money on medical and travel expenses (for 2 people) due to ME/CFS. Valcyte was the worst expense, and I'd do that again in a flash for the same amount of improvement. Testing is expensive, but it's necessary to figure out what's wrong. No other treatment my daughter or I have had has been outrageously expensive -- Valtex, low dose Equlibrant, thyroid meds, florinef, atenolol, verapamil, sleep meds. No ME/CFS specialist had us doing anything super expensive that didn't help.

    I realize there are quacks out there selling their own brand of snake-oil. There are also one-hit wonders who have discovered a single treatment that provides significant improvement for a small subset of PWME. Those are not the top of the line specialists I'd want to go to when I didn't know what's wrong. I want the real ME/CFS specialist who understands the complexity of the illness, and has a multitude of possible tools to use depending on my symptoms.

    Maybe someday they'll understand the root of this illness and there will be a single treatment protocol. Maybe.
     
    NilaJones likes this.
  6. Stretched

    Stretched

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    Yo! Tell it like it is, sister - charlatans, all!

    I agree, expose the ******'s.

    Here's more fuel for that fire. A trusted friend of mine, a stockbroker repeated what I learned before he ever started in the securities business: that in his 25-year career dealing primarily with doctors that '...they all hate it (practicing medicine). They're in it for the money'... .

    Lawyers are worse but doctors also deserve the public's ire. They hold themselves out to be of a higher standard but
    when the action is on they both operate to sever you from your wallet. Both systems, sic law and medicine, are
    broken and are rife for reform, not likely in our lifetimes. With few exceptions neither group knows more than any reasonably intelligent person can glean from an appropriate text.

    The problem is that you can't prescribe for yourself, legally, which of course is circumvented by the neutriceutical industry. (Curse or blessing?)

    So, when faced with a knowledgeable client/patient they are likely to do something different than you present just to justify their billing.

    So, damned if you know, damned if you don't!
     
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  7. Firestormm

    Firestormm Guest

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    Stretched As a former member of the investment profession myself - I did find it funny that your stockbroker friend had that to say about doctors. Can't the same be true of brokers? :)
     
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  8. SOC

    SOC Senior Member

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    Okay, I've had more than enough experience with local doctors, GPs and specialists, that fit into this category, but I've seen doctors that are everything you want in a caring physician. Only one was a GP, though, and she's retired now. Not all doctors are only in it for the money.

    For the record, I have seen the following ME/CFS doctors and all were very caring physicians and none charged extraordinary amounts for their services. Some gave me better medical treatment than others. All of them gave me some kind of treatment that improved my quality of life. Those doctors are Dr Lapp, Dr Black, Dr Lerner, and Dr Rey. I've also talked to Dr Klimas and believe that she is another of the same ilk. They all have different personal styles, but all were kind and cared deeply about helping my daughter and I get better.
     
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  9. Tito

    Tito Senior Member

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    My personal experience showed that there is nothing more biased than a patient's feeling. My comment is not meant to be demeaning, it just shows human nature. ME's characteristics is denial (one of my siblings is a prime example of this): they say they are better but when you look objectively at the situation they are not. There was that Danish study a while ago describing that. Secondly, it is also human nature that you are happy with something when you spent a lot of money to get it. Many people who have a rubbish car will try their best to explain their car is great and to find the manufacturer excuses. Medical treatment is no different. Thirdly, when you talk to patients, you talk to people who came a first time to be told what the treatment is and who then come back. So the sample is already biased in favour of those who continue treatment versus those who abandon, often because it does not work or made them worse.
    Ironically, the only treatment data showing that people are (not) getting better is CBT/GET. I personally never saw large-scale studies about antibiotics, hormones, supplements, chelation, GcMAF, Valcyte, etc. i am not saying that we should deduct it is because it does not work. It is probably a funding issue. But still.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When I say I am getting the 50% from patients I am talking about their lab reports and going back to work and school, not more subjective measures.

    Best,
    Sushi
     
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  11. SOC

    SOC Senior Member

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    My improvement is no more psychosomatic than my illness is, nor is my daughter's.

    I went from bedbound to working 20 hrs per week (at a job that is not overly demanding), and taking care of myself and my home. That's not my imagination. My daughter was having pre-syncope episodes in class, couldn't walk to all her classes, came home and collapsed asleep for 5 hours after class every day. Now she's in graduate school in engineering, traveling the world, and engaged to be married. That's not her imagination, either.

    No, we're not cured. But there is no more question about our improvement with good treatment than there was about our illness.
     
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  12. NilaJones

    NilaJones Senior Member

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    I think these are good points.
     
  13. NilaJones

    NilaJones Senior Member

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    More good points.

    I also really appreciated your list of tests a good doc should perform, and of docs you have seen, in previous posts on this page.

    I am considering trying to consult a specialist, and this thread is helpful!
     
  14. Firestormm

    Firestormm Guest

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    We all have our experiences NilaJones and with due respect to SOC a 'good doc' is yet another personal judgement even if you do consult your mates or family. As are the 'list of tests' that should or should not be done.

    It's all very hard of course. Be nice to choose based on results but as we are in such a grey area still it is almost impossible to predict outcome let alone validity. Difficult to know what to do sometimes.

    I'd like - in my pie in the sky fantasy (though obviously not my main one :) ) - to one day compare those who followed let's say the CDC advice (assuming they had already been diagnosed with ME) and/or the NICE Guidelines in the UK; to the CCC and ICC - testing recommendations and treatments: with those who have submitted themselves to the raft of tests and treatments from private experts.

    Compare objective outcomes with cost and duration or something. Be great wouldn't it? Let's see who spots the alternate diagnoses and misdiagnoses and who doesn't.

    Discover what proportion of patients began with a diagnosis of ME and ended up discovering they had in fact been misdiagnosed and were as a result were more successfully treated.

    Discover what proportion of patients objectively improved in their treatment outcomes from the recommendations if they were found to have ME; as well as if they were found to have something else instead or as well as ME.

    Then again, as I said above I think, for any long-term condition patients will always be wanting to seek that better outcome; that better doctor; that better test and treatment: and currently it is very hard to objectively measure 'helpful'. And we are all different and human - have to wonder about me sometimes :alien:

    :)
     
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  15. Tito

    Tito Senior Member

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    I am not denying that some people do get better, and I am genuinely glad for you. But let's not mix up anecdotal reports with statistic data. My point here was about the lack of large-scale studies about the different treatments for the different sub-groups of patients.
    For example, a proper study might indeed show that 50% of patients with characteristics X do improve with treatment Y. It would be terrific news and the tests and treatment could be offered in any country without patients travelling hundreds of miles. Right now, we are stuck: for gut related problems, KDM seems to be better than the rest; for viruses, Lerner seems a better option, etc. it means patients travelling the globe at great costs. Is that a good thing? I do not think so.
    In my opinion, a system should never be assessed on those who benefit from it, but on those who are left behind. Focusing on the first group means we will never improve things.
     
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  16. xchocoholic

    xchocoholic Senior Member

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    Great discussion. Very informative and balanced. I can't imagine anyone here not wanting to know this.

    Finances will play a big role in this too. Even those who see specialists may not be able to afford
    the treatments offered. I ran into this with my integrative doctor approach. Good quality supplements
    are too expensive for me and there's no telling what I got in the less expensive brands.

    Tx everyone. Tc .. X
     
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  17. Firestormm

    Firestormm Guest

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    xchocoholic don't get me started on what constitutes 'tests' and 'treatments'. Am trying to remain unspecific and speak in nice and general terms here.

    Enough reading on my plate today with leaky-gut tests and dietary interventions :D
     
  18. SOC

    SOC Senior Member

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    Sure, we'd all love to have that kind of statistical data. We are not there in the history of this illness. Right now we're still trying to find out what's wrong with us. We're working on finding any treatments that help us. In the future, when we have research money coming out our ears, there will probably be large scale studies of treatments in sub-groups. Today we don't even know what the treatments should be or what the sub-groups are.

    I don't think anybody believes we have anything resembling a perfect clinical or research situation. We don't. That's not where we are right now. That's not going in change in a year, or two, or even ten. The ideal situation you are describing is unlikely to happen in the lifetime of most current patients. We have to deal with that and work with what we have.

    I'm not going to wait until all the data is in (it will never be) and the perfect treatment protocol is offered by local doctors. The top doctors are improving the quality of life their patients. I'm going to do what I can now for my daughter and myself. I don't expect them to cure me at this stage. I do expect them to do the best they can for me with the current state of knowledge.
     
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  19. SOC

    SOC Senior Member

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    This is a MAJOR issue that needs to be addressed, even before we get big statistical studies of treatments in subgroups. A huge percentage of us cannot get any kind of decent treatment for financial reasons. Insurance companies or national health services don't consider us ill and in need of medical intervention. We can't get the tests we need to show what symptomatic treatments we need. Many of us can't work and/or don't have medical insurance at all. Even though there are symptomatic treatments out there that can improve quality of life, many of us can't access them for financial reasons or because of medical prejudice.
     
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  20. Tito

    Tito Senior Member

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    SOC,
    We are indeed far from the ideal studies and we won't see them in the near future. I am with you on that one.
    However, if it is observed that 50% of today's patients do improve with top specialists, then why don't they publish their results? It does not have to be a thorough (and therefore expensive) study, it could just have the form of a guideline, possibly via their presentations in an Invest-in-ME conference, something like that. I do not talk here about very new and quite dangerous approaches like Rituximab, but more about well-known drugs like antibiotics, B12, etc. it seems to me there is a huge gap between the top specialists and the average physician. If the knowledge were spread a bit more, then patients would not have to travel, even if only 25% of patients (instead of 50%) would benefit from this. That would represent thousands of people. And this is with today's knowledge.
    I understand you do not want to wait for the perfect treatment, but I also think we need to see the bigger picture. If more people could be helped today, it would mean more income for governments and it would mean top specialists would have shorter waiting lists.
    What I find terrible is that physicians, immunologists, neurologists just do not want to hear about ME. The top specialists seem quite isolated. Ironically, the system set up by the Weasle&Co, ie. ME clinics in each major city, is a good idea. Just we need to get rid of psychiatrists and psychologists and put physicians with half of KDM brain... That would make a major difference for dozens of thousands instead of the current minority lucky enough to live relatively close to a top specialist.
     
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