Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Disagreement or sub-standard care?

Discussion in 'General ME/CFS Discussion' started by kristysmiles, Sep 16, 2015.

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Disagreement or sub-standard care?

  1. Diagreement

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  2. Sub-Standard Care

    12 vote(s)
    85.7%
  3. Other (please explain)

    2 vote(s)
    14.3%
  1. kristysmiles

    kristysmiles

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    If you've been following any of my posts, you'll know that I believe the military has not been treating me as well as they should. A member of the medical community claims that I am being disrespectful by calling it sub-standard care when I disagree with my doctors. I feel like this individual is being disrespectful to my experiences, but for the sake of argument I wanted to see if there was an unbiased assumption that he's correct.

    I was diagnosed with CFS over 3 years ago. My doctors have acknowledged they know nothing about my condition. I have done in-depth research, asked appropriate questions, and suggested some tests that I believe would be helpful (using some of this community's suggestions and experiences). I know I'm not a doctor, but my doctors have ignored my questions and concerns, and refused to look into further testing or other medications when the one's I'm using aren't effective. When they admit they know nothing about CFS, I do see it as incompetence that they wouldn't refer me to a specialist or a minimum consult a specialist concerning my treatment. The most I can say they've done is look at WebMD when it comes to understanding this complex illness.

    So is this simple a case of disagreement with my doctors or would you consider this sub-standard care?

    As many of you have dealt with, I believe my doctor are disrespectful and don't believe I'm really sick or that CFS is real. I also find that this member of the medical community is being disrespectful without knowing the details or experiencing my treatment first-hand. These types of people cause me unnecessary stress and anxiety, does anyone have any advice on how to deal with these type of people?
     
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  2. JaimeS

    JaimeS Senior Member

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    Find someone else?

    Here's the thing: I really do believe it's possible for physicians to change their mind about an illness. Unfortunately, I haven't seen that come as the result of anything that the patient does.

    From their perspective, you have a vested interest in ensuring that your illness is treated as a 'real', physical illness rather than an imaginary one brought on by your wandering uterus. They will view anything you say as fruit of the poisoned tree. Even if you give them scientific literature, they will believe you have only picked the ones that support your view, rather than chosen the best research based on the prevailing view (of the CDC, the IOM, pick a three-letter acronym that isn't NIH).

    If they were to go to a conference in which a respected physician or group of physicians began talking to them about the reality of the illness, that might very well change their minds. I've heard of this thing actually happening. Not the other thing. The other thing, where you manage to convince them you're right, doesn't happen so far as I'm aware. There is unfortunately a lot of research on people with entrenched viewpoints and how hard they are to shift - the way the idea gets wrapped up in their sense of pride and identity until they begin to have a vested interest in holding on to that idea, no matter how insupportable or outdated.

    Perhaps you can hand him a pamphlet about the next decent conference on ME/SEID/CFS? If it is at all possible in your situation, the next thing you do should be to seek out someone who understands the illness already, or is at least willing to learn. This is not a battle on which you should be spending your resources - unless you have no other choice.

    -J
     
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  3. Esther12

    Esther12

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    tbh, a lot of specialists can be even worse, in that they don't realise how little they know.

    You could start recording your consultations, so that if you do decide to take things further you will have something more than your own testimony to support your concerns?

    I'm afraid that CFS is just often badly dealt with and it's often a case of finding the least bad rather than anything really helpful.
     
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  4. JaimeS

    JaimeS Senior Member

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    I think that depends on POV. The specialists I've spoken to are mighty sure of themselves, but I make use of the information they give me and research further. The main thing for me is that they are aware my condition is physical: it makes all the difference in the world.

    There is nothing to say that you have to swallow what a 'specialist' says, hook, line, and sinker anyhow. The Kool-Aid is on the table but you don't have to drink it. ;)

    -J
     
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  5. kristysmiles

    kristysmiles

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    Yes, I wish it was possible to find a doctor who understands or is willing to learn. That's what I was trying to accomplish when this gentlemen in the medical field approached me with his disrespectful viewpoint on my medical care. I was trying to get information on insurance, because on one of the military medical sites it says we aren't allowed to use outside insurance. Seems like a communist policy to me, when I have two forms of medical insurance. I would like to use the other to get a second opinion from a non-biased source (not military). I know I shouldn't waste my energy stressing about outside opinions, but it's extremely hurtful when other people are ignorant and disrespectful to what I'm going through. I can never understand why we can't acknowledge that we'll never truly understand another's experiences and therefore shouldn't belittle their opinions on their own personal situations.
     
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  6. Effi

    Effi Senior Member

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    hi @kristysmiles Sorry to hear about the stress you're going through. I agree with what @JaimeS said, it is generally very hard to make doctors change their point of view. This could come from a lot of different places: a sense of authority, a vested interest, feeling too intellectually insecure to stick their neck out, peer pressure, etc. Maybe that is why they are calling this a disagreement, so they don't lose face for their lack of knowledge. If you are terribly sick, and they are supposed to help you, yet they offer you little to nothing, it is called sub-standard care IMO.

    Problem with me/cfs is, there are no standard answers, no guidelines to follow. Of course there are some specialists, and doctors who truly want to try to help you manage your symptoms. But what I've also experienced (not sure if anyone else has), is that sometimes doctors who don't like anything outside of the 'standard' don't accept the authority of me/cfs specialist. me/cfs specialists work outside the lines a little bit, and that seems to make some doctors feel very uncomfortable. So they'd rather not even acknowledge their existence. Not that they are right, I think you are totally right to expect more from them. But the me/cfs situation is still pretty blurry, so it could be difficult to make a case against them.

    (I'm not entirely sure if I understood the situation: was that second medical person part of your second insurance plan? Or also from the military? I got a bit confused there :))
     
    Last edited: Sep 16, 2015
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    I don't think you being in the military makes much of a difference with care.

    Many of us fight for labs and care. Maybe have to pay out of my pocket for a lot of things as do many others. Even with insurance ir medicare stuff isn't covered or its a battle

    I finally got referred to an immunologist who is clueless, his ego too huge to listen to what I said and ultimately would only give treatment if I will get a pysch eval to make sure my symptoms aren't psychosomatic. I've been sick 20 yrs

    I had to beg my pcp to run labs for infections.

    You can fight for what you want but digging your heels in and calling people incompetent may only make them fight against you than eventually help you.

    You have to just say this is what it is and get help on your own.
     
    Last edited: Sep 16, 2015
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  8. leela

    leela Slow But Hopeful

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    I would not concern myself with other peoples' points of view. You are the expert on your body's experience, you know when you are relating respectfully or experiencing respectful relating from others. It is key, in my experience, to assemble a team of medical professionals who are indeed that--willing to TEAM with you for your wellbeing.

    This means you respect their expertise as medical professionals and they respect your expert knowledge of yourself and your experience. Those who cannot do this are fired from the team!

    It sounds like a wise choice to seek team members outside of the military system as well. I would spend no more energy on others' judgments and opinions and proceed with compassion and care for yourself, and gratitude for those team members that are able to provide the care that is in alignment with your requirements both physical and interpersonal. It may take time to find these professionals, but you'll know right away when you have. Those who ignore or demean are not worth your time.
     
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  9. kristysmiles

    kristysmiles

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    @Effi It was a member of the military who said I disagree with the care, and it's not sub-standard.

    It seems like my doctors use WebMD to treat and diagnosis, as they are pulling up information on their iPhones when I explain what's going on. Honestly, I just want them to objectively evaluate all my symptoms as a whole. Not to send me to see other doctors and get 10 different diagnoses which all likely stem from one underlying condition. Then for situations like my 'asthma', I want them to believe me when I say an inhaler doesn't help. There were so many anomalies when the doctor did the metacholine challenge that my doctor completely ignored. The nurse even made mention of it, when after inducing an 'asthma' attack it took 6 pumps of an inhaler and over an hour of waiting to get back into a normal respiratory pattern. The doctor says it's 'mild asthma', but I don't feel like the symptoms are in line with asthma at all.
     
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  10. SickOfSickness

    SickOfSickness Senior Member

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  11. kristysmiles

    kristysmiles

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    The military care is difficult, because there's a lot more paperwork the medical community has to do if found unfit for service. The military also has to provide disability pay if the medical condition was caused or aggravated by service.

    When the first internal medicine doctor who saw me couldn't figure out what's wrong, he also recommended me for a psych consult. My second doctor recommended psychiatry to 'help me cope'. Although, I'm sure she had similar thoughts on the matter. My psychiatrist is the one who recommended testing for lyme disease. I'm sure this community can appreciate the humor in that.

    My doctors have been up front and admitted their incompetence when it comes to my medical issues, but rather then try and become competent, they just write me off. I'm pretty sure they are waiting for me to get out of the military so I become someone else's problem.
     
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  12. SickOfSickness

    SickOfSickness Senior Member

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    I also advise you to get other diagnoses if possible. ME/CFS is so misunderstood and it's easier for them to dismiss.

    Many with ME/CFS have dysautonomia (especially POTS). If you got diagnosed with that, it helps because it's cardiovascular and harder for them to dismiss. Some other possible things to get diagnosed with are Epstein-Barr virus, adrenal fatigue, or candida. Then there is Lyme which is poorly understood by most doctors but I think it's more understood than ME/CFS. There are probably better diagnoses that I can't remember.

    Are you allowed to pay a doctor privately (cash)? Can you afford that to get the dysautonomia diagnosis or others?
     
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  13. kristysmiles

    kristysmiles

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    That's exactly what I want! Even if they can't do anything for me, I just want them to genuinely care about my wellbeing and not give up. I can't even imagine the depressive state I would be in if I gave up on myself and the hope of getting back to normal.
     
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  14. kristysmiles

    kristysmiles

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    The doctors won't test me for POTS, because I quote "the test is too barbaric". There are signs of idiopathic tachycardia, but the treatment would cause more symptoms then it's worth. I have high-levels of the inactive Epstein-Barr virus, but the DNA portion of the test was negative. Lyme is a possibility, but they only did the basic Borrelia Burgdorferi Ab test. I did a sleep study that shows idiopathic hypersomnia, so they know I'm actually fatigued all the time.

    I'm going to pursue using my secondary insurance, and see what some of the doctors in a lyme-dominant area have to say about my symptoms. Unfortunately, I'm getting out of the military in 6-months or so, so I don't have the money to spend paying out of pocket until I can find another means of stable income.
     
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  15. Effi

    Effi Senior Member

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    I wish there was something I could say to this, but sadly this is how most (if not all!!) of us have been treated, or shall I say mistreated? It is horrible, but it sadly is the reality for patients today... The harsh thing is that before falling ill we had this comforting idea of having insurance and that we will be taken care of, only to see that shattered together with our entire lives. There is no way for outsiders to understand what that does to us, on any level.
    Maybe this is a clue? I don't know what the situation was at service, but maybe you could build up your case around that? Any heavy duty chemicals you were exposed to? Possibility of PTSD? Any specific viruses? Anything you could be diagnosed with that does fall into a specific insurance category? Sometimes it is just a matter of administration, which specific label you fall under, and CFS is not a category just yet, so they don't know what to do with your specific case. As @SickOfSickness says, building your case around another diagnosis might work.
     
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  16. worldbackwards

    worldbackwards A unique snowflake

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    My doctor changed his mind after seeing myself and other patients of his sent into the CBT/GET wars and come out without improvement, only to find ourselves blamed for the failure of their treatment.

    An open-minded and caring doctor can certainly be shocked by the reality of what patients have to put up with when it is removed from the panglossian world of medical journals and textbooks.
     
    Last edited: Sep 17, 2015
  17. kristysmiles

    kristysmiles

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    @Effi
    The military considers CFS as part of the Gulf War illness criteria. As many veterans get these symptoms and similar disorders after returning from their service overseas. Under this category CFS is automatically considered service-connected, so part of the problem could be they don't want to spend time on something that falls under 'medically unexplained chronic multi-symptom illnesses' induced by military service category. For as many veterans that have similar conditions, I find it shocking the military doesn't have any doctors (at least where I'm at) who are familiar with it.

    Here's the VA rating information, but it fails to mention how they measure the reduction in daily activity. This concerns me, because the military doesn't care if I'm too sick to do something. They see it as a behavioral problem unless you're support by the military medical system. Despite how I tell my doctors of my struggles to even drive to work on some days, they refuse to give me medical exceptions or process me for medical retirement. I'm afraid that if I can't force my body to do what the military asks that I'll get administratively separated (anything less than an honorable discharge is looked at negatively) and lose all of my benefits.

    2.11. Chronic Fatigue Syndrome
    For VA purposes, the diagnosis of chronic fatigue syndrome requires:
    (1) onset of debilitating fatigue severe enough to reduce daily activity to less than 50 percent of the usual level for at least six months; and
    (2) the exclusion, by history, physical examination, and laboratory tests, of all other clinical conditions that may produce similar symptoms; and
    (3) six or more of the following:
    (i) acute onset of the condition,
    (ii) low grade fever,
    (iii) nonexudative pharyngitis,
    (iv) palpable or tender cervical or axillary lymph nodes,
    (v) generalized muscle aches or weakness,
    (vi) fatigue lasting 24 hours or longer after exercise,
    (vii) headaches (of a type, severity, or pattern that is different from headaches in the pre-morbid state),
    (viii) migratory joint pains,
    (ix) neuropsychologic symptoms, and
    (x) sleep disturbance.
    38 C.F.R. § 4.88a. Similar symptoms are also discussed in section 4.88b "Schedule of ratings – Infectious diseases, immune disorders and nutritional deficiencies." Chronic fatigue syndrome is also a "qualifying chronic disability" for the purposes of an undiagnosed illness and "medically unexplained chronic multisymptom illnesses" for Persian Gulf veterans. 38 C.F.R. § 3.317.
     
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  18. sarah darwins

    sarah darwins I told you I was ill

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    It's a bit Joseph Heller, isn't it:

    Soldier: Sir, with respect, sir, the care I'm getting is terrible. I think it's sub-standard.
    Army doc: How can it be sub-standard? We treat everyone with your diagnosis this badly.

    I get the impression military doctors can be very innovative at times. There's a video in a recent thread here on nutrigenomics which mentions that the US military are showing an interest in metabolic SNPs because of the impact they can have on physical training capacity - http://forums.phoenixrising.me/index.php?threads/video-on-nutrigenomics.39576/

    But I guess military docs are under pressure to be utilitarian. Presumably part of their thinking is going to be "What's in it for the military?" In fairness to your doctors, a diagnosis of 'CFS' doesn't give them much to work with as there's no proven treatment protocol.

    I agree with some of the other suggestions, especially: if that diagnosis isn't getting it done, get a new diagnosis (makes me think of the old story about the tourist flight in China which was on the tarmac for hours after the pilot informed passengers of a warning light in the cockpit. Eventually the plane starts taxiing for take-off and a passenger asks one of the cabin crew "Did they fix the problem?" And the steward says "No, they changed the pilot.")

    Realistically, I can't see any way you're going to get far claiming sub-standard treatment given the current climate around me/cfs. But if you were able to get some private lab work done quickly, especially if it showed lyme, for example, you might get a very different response from your military docs. You've got quite a few labs in the USA who can run those tests, and they needn't be expensive. Worth a shot?
     
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  19. kristysmiles

    kristysmiles

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    @sarah darwins
    Yes, I am trying to get seen privately to get a second opinion and hopefully a different diagnosis. Part of the reason I see my treatment as sub-standard is because my pulmonary doctor is insistent I have asthma. When I asked her if she'd consider other possibilities given that I don't have the typical signs of asthma and an inhaler isn't effective, I was told no (no explanation given). The nurse who was present for my asthma testing had never seen anyone react to the test the way I did or fail to get relief from the inhaler (as I did). This greatly concerns me as military personnel coming back from the Gulf have been diagnosed with respiratory disorders that mimic asthma, but can be far more serious. Since I have served in the gulf and have an abnormal case of adult-onset asthma, I don't think it's unreasonable to give merit to my concerns. There was no, 'we'll revisit this later, if your symptoms don't improve' or 'I'm sure it can't be anything else and here's my reasoning...' Since the military can't file for medical malpractice claims, there are many questionable behaviors they get away with. I don't want to be a victim of this.
     
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  20. Effi

    Effi Senior Member

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    Although there's officially no biomarker for CFS, there are tests that can show abnormalities. Have you had any of these? I think for insurance/administrative purposes the more abnormalities you can show on paper, the better. It might make it harder for them to discard you.
    Have you gotten a CPET/VO2max test done? I've read here on PR that the test results were sometimes useful in insurance cases, as it shows very clearly that we are extremely limited in our daily functioning (similar results as people with severe heart disease e.g. - depending on your situation of course).
    On a quick google I found a couple of studies on Gulf War Syndrome and other related illnesses (e.g. here). It sounds like there's a lot of clues as to how people get it, yet when you have it, they don't know what to do with patients - very similar to me/cfs. One very recent study says GWS is all about mitochondria (here) which is also something that you can get tested for (good explanation on Dr Myhill's website here).

    There was a thread (here) a while ago on PR about Dr Les Simpson. He studied abnormalities in blood cell shape that he thought were linked to cfs. I just remembered cause I recently read a blog (not in english) where a fellow patient had her blood cell shape tested and it was very obviously abnormal.

    I have no idea how all this would be interpreted by your doctors, but they couldn't deny the fact that there are abnormalities, so it might help you with your case?

    I really hope you can find a solution! IMO the best thing to do is to work with the system and not against it. The military is a very big and powerful opponent to battle... I agree that their behavior is questionable at best, but try to play the administrative game by their rules. That way I think you have the best chance of getting something out of it.
     

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