HAWMC Day 25: What Every REAL Health Activist Should Know

Posted: April 25, 2013 in Doctor-Patient Communication, Research
Tags: ,


NOTE:  I got LOADS of negativity about this post. If you don’t want to hear the truth, don’t read this post. I don’t embellish, beat-around-the-bush, or fill my blogs with platitudes. I’m not just someone that has a medical issue that wants to blog about it. I’ve got loads of research experience and over 25 years of medical advocacy experience. I’ve been to senators’ offices to fight for patients – and I know what is necessary to make change.


This is a simple one. IMHO.

First, you must decide if you ARE a health activist, and actually trying to educate the public or medical “professionals,” or you are simply blogging your sunny thoughts about coping with chronic illnesses.

If it’s the former, and you post FACTS from cogent sources and not from Facebook blather or patient-created support sites, use only peer-reviewed journal articles, publications from respected medical sources and medical texts –  you ARE a medical activist.

If it’s the latter, you are NOT a medical activist. You are simply writing a public diary. Which is fine – some people like that stuff.

It is very obvious to me who has true and relevant information about their disorders. I published a plea yesterday asking for the names of doctors’ from people that are diagnosed with forms of autonomic system disorders so that I could create a “go-to” page for people looking for credible doctors that are familiar with the many forms of “dysautonomia” …and I received two – TWO -responses!!! That’s IT??

If you see a doctor that is giving you awesome care for your disorder – why wouldn’t YOU want to tell others suffering with similar symptoms where to go for help??? If this doctor has valid information he is sharing with you and is helping you live your life in a more productive manner than your would without his or her assistance – wouldn’t you, as a “medical activist” want to help others? I would gladly do so, and therefore, I have been sharing information about top notch docs since the early 1990’s.

Likewise, if you had negative experiences with doctors that did NOT provide you with good care or provided you with information that was NOT correct – wouldn’t you want to warn others so they didn’t waste time, money and emotional agony going seeing doctors that are not helpful? I sure as heck would, and I do.

So, there.


  1. Jackie says:

    I hope this isn’t partially directed at me! I’ve only ever been to one doctor for treatment of POTS and I shared it with you. 🙂 I highly recommend Dr. Fealey at Mayo. He will talk to your family doctor and explain everything so you can get the best treatment possible, even if you can’t always get to Minnesota to see him.

    I have to disagree with your viewpoint that the only way someone can be a good health activist is if they read peer reviewed journals and are vocal. Some people are too sick to read such literature and are only able to advocate for themselves. Even though this doesn’t benefit me, I still admire these people and consider them health activists in their own way. Some people are activists simply from writing a “diary” of their journey. Every person who reads it becomes aware of that person’s illness and struggle with it, which is one of the goals of activism. I feel like minimizing these blogs to just someone writing “sunny thoughts” and not contributing much to health activism (when these people often express how difficult it is to maintain their sunny disposition) is the last thing we should do as fellow sufferers.

    I am someone who actually read a lot of journal articles but I am not typically well enough to put together a post on them the way I would like to. That’s something I’m hoping to do more of as I get better. I have a whole binder full of journal articles on dysautonomia. If you ever need help finding an article on dysautonomia as it pertains to a certain topic (pregnancy, sleep, quality of life, etc…) I’d be happy to flip through it for you!

    • Lori says:

      No, no…not directed at you.
      I’ve been in this advocacy game a loooong time – since the Internet was still in diapers and all of my research was done by gaining admission surreptitiously to the medical libraries in hospitals reserved only for doctors. I was also lucky enough to have a natural knack and conducting research and I was blessed to have been mentored by a few professionals early on (I’m talking 1980’s here…ancient history).
      So I’ve been here since the beginning of Internet advocacy – I personally find the sunny, fluffy bunny, unicorns and jelly beans blogs completely useless. But, thats just me. I prefer reality, truth, research, causation and the nitty-gritty. I was trained as a legal researcher in the early 80’s and later on, moved to bio/medical research. I have a craving for the facts, the truths and the evidence. In my world, there isn’t room for frivolity – that’s when errors occur, symptoms get missed, and people, like me, get misdiagnosed. And THAT means I have to dive into academia-mode to save myself. I’ve had to do this dance six times in my life – I am just a weird mass of messed up DNA, and this is my lot in life…to dredge the trenches of science to prove who and what I am so I can get the correct treatment for my next storage disorder. Believe me, I wish I wasn’t such an anomaly – it’s draining and makes you want to just give up – a lot.
      I advocate because NO HUMAN should go through what I’ve gone through just to get treated for their medical issues. It hurts me so much to see people continuously tossed aside because they don’t fit into dx box A or B. It’s a failure of the medical system here in the U.S. and it shouldn’t be occurring now in the 21st century!! (I hear thus same sentiment from providers I talk to…so I know I’m not alone.)

      • Lori says:

        Ugg, pls forgive my typos. Where is iPhones’genius when I need it!
        That should be STRANGE disorder – not STORAGE disorder (the next new reality show, coming this Fall!!)

      • Jackie says:

        I understand where you’re coming from now. I also am all about facts and love doctors who will actually read the journal articles I take them rather than just assume their med training 20+ years ago taught then all they needed. I’ve actually had doctors REFUSE to even look at my articles, let alone take their suggestions. I’ve pointed out to a doctor her treatment plan is less than 30% effective (fungal infection) yet we keep trying it only to have her accuse me of reading too much.

        I also worry about people who aren’t like us and assume doctors are always right and therefore don’t advocate for themselves. A doctor tells them they’re depressed and they don’t question it.

        For me, being positive is just how I am and so it carries over even in the dark moments of my illness. I don’t feel I’ll ever be better off for having this illness, but I also am not bitter about it. I’ll have it no matter what so I choose to see the silver lining until a dr figures out what to do with me!

      • Lori says:

        You are blessed for being an optimist. I’m not cut from the same cloth. I’m a realist – I’m optimistically pessimistic. Life has handed me me crap than I should’ve been able to handle, so I don’t see the nice and pretty (except in my photography) – I see the dirt and ugly,the cut and bleeding, the ignored and discarded. I am one of those ignores and discarded humans. No one ever gave me a single helping hand – not as a kid, not as a teen, not as an adult. I’ve had to reinvent myself over and over. And yes, I’m a bit bitter towards those that turned away from me when I needed help. I try to make up for their shortcomings by offering others the help they need, and not letting them go on ignored, feeling useless and worthless, like human trash. As I said before – no human should go thru that pain.

      • Jackie says:

        I agree no one should go through what so many go through. I’ve done a lot in crisis and suicide intervention, worked at a homeless shelter, and know I am blessed for the childhood I’ve had and life I have now. I see how some people are unable to be cheerful, hopeful people after what the world puts them through, especially when no one offers them help. Despite all I’ve seen and the midnight suicide calls I’ve taken… I remain optimistic and I believe it is thanks to my parents. This isn’t the case for everyone in my field. I know many who become pessimistic as they see what this world does to people. I feel blessed that it seems my optimism is resilient thanks to my upbringing. Most people don’t get the same opportunity.

    • Lori says:

      Awesome!!Thanks! The input on Dr Fealey is extremely helpful.

    • Hey Lori! I totally understand trying to make a list of medical providers that understand our conditions and I also agree with you on how helpful that would be. I just returned from Vanderbilt where I saw an ANS doctor which was a very much different experience from any other doctor I have seen and in such a great way! I would look to Vanderbilt, Mayo and the other very few Autonomic Dysfunction Centers to find doctors who are truly specialist in the ANS category. But few of these centers actually follow through with the care of the patients they just refer treatment plans back to the patients local PCP, cardiologist or neurologist (or all three). I am still awaiting all the testing and her report. She is going to report back to my (all three plus a rhematologist) so that they know how to treat me locally. But even Dr Shibioa (I don’t have the spelling in front of me so this may be wrong) told me that some of my symptoms were from multiple disorders (some already diagnosed, some that may yet to be diagnosed and some that may have yet to be defined) including POTS. I had a TERRIBLE experience with a PCP and prompted me to change mine. I found my new and way more improved PCP through another local patient that I found through DInet.org (they connected me and the other local patient). I got the name of her PCP and off I went. The doctor accepted me as a patient with hesitation (per the nurse that called me—that might offend some but she told me that my conditions required a specialist and I told the nurse I agreed but that was not what I was seeking I needed someone locally to manage my care for everyday ailments but that would also take a sincere care in my overall well being…I’m quite tired of being tossed from one specialist to another that treats only one symptom but no one was analyzing what each doctor was doing in a holistic approach). My literal first words to my doctor was the fact that she even knows what Dysautonomia is, is the greatest peace of mind for me as her patient. I told her “I know you are not an expert but I do not want a doctor that doubts my symptoms or that I have to prove them too!” She then said I had to promise to not refer her as an ANS doctor because she was not a specialist and that she had no specialized training in my disorder. But she said I promise to be your advicate, to listen to you and what is going on and together (with specialized help) we will come up with a plan to treat you. And our plan will change likely very often. She said as a PCP she could not handle too many patients who had chronic illnesses that needed the amount of attention we need or her practice would not be able to serve the masses for which a PCP is to serve. She said as a medical professional it is concerning for her because our bodies do not respond to treatment like the normal body will and also our bodies might show normal levels however those levels are not normal at all for us…it was very concerning for her. She explained to me that medicine is a process of predictions and theories that have been tested and tried. She said I treat my patients knowing that my treatments have an predicted expectation of what the result will be in a normal bodies response. And Dysautonomia takes all predictions out of the equation. Basically, we both agreed that we were both learning my illness and that we might have success in some treatments but we might also have some failures. But communication with her was crucial as how I felt may not show up accurately in a test. I also totally understand that she can’t have a practice full of me’s because then her practice would be sparse. But I (just like you) want a doctor for me and for everyone who needs a doctor that is not only willing to learn and listen about our conditions but also improve our lives AND advocate for us in the medical community. Have you checked out http://www.DInet.com yet? They have a list of practitioners that might be in your area already started. If not, you can also sign up to be contacted by other local patients. That’s how I found my doctor but again my doctor made me promise to not put her out there as a specialist even though she does treat several POTS patients and we’ve done a pretty darn good job of educating her. I hope this makes sense…I’ve had a pretty long week. I am also sorry for not responding to any if your other blogs where you requested us to help you gather data. I have not had a great deal of time or left over energy to be on word press for the last couple of weeks. 😄 Here’s to hoping you have a great weekend!!!

      • Lori says:

        Yes. I know. I’m not looking for PCP experts.
        I have a good PCP.
        I had a VERY BAD TIME with some experts that appears in the list of the big 5 autonomic centers.
        People need to know this stuff!
        I don’t k is why people won’t say, Dr so-and-so worked out great – knew what tests to run, etc, didn’t dismiss me as crazy. Knew what ans dysfunctions were all about.
        That sort of stuff.
        The dinet list is WAAAAYYYT outta date and has some incorrect demographic info on it.
        I can’t understand why people are so unwilling to say which doc had helped them get diagnosed???
        It’s almost as I’d they want people to suffer. Like me. I e been to some of the top world specialists and they were horrible.and I will broadcast it all over. I don’t want people wasting their time with arrogance and closed mindedness. I need NEW, understanding, competent doctors. Otherwise, my life is deteriorating at a rate that us making it and not with living. Period.
        Why is it everyone seems so against helping people like me?
        I’m not a dummy – I have a scientific/medical/legal background. I was an EMT for many years – I’m trying to be professional – unlike other “dysautonomia” orgs I’ve had experience with. All I’m asking for is dis who diagnosed your alleged dysautonomias-that’s all!!! Why is that such a big deal??? Three are standards for diagnosing the many forms if ANS disorders – it’s beginning to sound like people haven’t been properly diagnosed…and they don’t want to lose their tiara of dysautonomia. Sorry to be crude, but it us getting very difficult to try and help people when others allegedly with the resources to help are turning their backs on patients.
        I’d would be utterly fantastic to know who among the doctors that are diagnosing these “dysautonomias” actually know what they are doing, if they are using the standards of care for diagnosing said illnesses, and if they are offering proper guidance.
        From what I read in the many, many FB pages and random blogs- the answer is NO – these people aren’t being dx’d appropriately and are not being treated with the appropriate medications available. It’s scary.
        I was asked to host a page for the Rare Disease Consortium – I need 4 bios – I can’t get ONE person to volunteer their bio because of the disparity in diagnostics and the willy-nilly way this POTS dx is tossed about. So my page in on hold unti I can find some intelligent souks that are willing to be helpful for the eat of the sufferers of this ABS crap in the world.
        To put in bluntly – had people been so unwilling to share info about neurosurgeons that specialized in sciatic, pudendel, gluteal and obturator nerve surgery – I’d prob be in a wheelchair and have to cath myself 4x a day to urinate!!! But thank God people cared enough to share their good doc/bad doc experiences and I was able to see this wonderful doc who improved my life 70%!!!! And this doc had hundreds of success stories.
        Just asking for a little of that same compassion here – docs that diagnose difficult cases if ANS disorders…should not be so hard for people to share their successes.

      • Well I am still trying to get ANS answers from someone who holds themselves out as an ANS specialist having only just earlier this week had the visit and testing at Vanderbilt (no report of findings yet). I will let you know once I get my report. I will say that based on things I have read about how Mayo handles the diagnosis process and sends patients through numerous specialist…they ARE far superior than my experience with one doctor and far fewer test than I thought I would have. And they scheduled me seeing the doctor before any testing was completed. Which they agreed was backwards from how they did it normally (but I didn’t schedule it that way so why they decided to schedule it that way is beyond me)! I was sent home a little discouraged having had to wait four months for the appointment. I can’t say that I did or didn’t like the doctor or that she has or hasn’t helped me because she hasn’t provided me with anything yet. But I will let you know. She spent over an hour listening to me which was great because most of the doctors I had seen were ready to leave the room after the second symptom was mentioned.
        I am so sorry that you have gone through all that you have. I can understand your frustration with your personal situation and I wish better for you in the future. I do appreciate you trying to be part of the Rare Disease Consortium and I do hope that you get the information that you need!!! We all need this out there. Most of my bad experiences are with people who didn’t know about, understand, or was ignorant in how to diagnose much less treat Dysautonomia. I will gladly give you those folks names but I don’t think it will help you with your report. (and I have made my comments known very well on places like healthgrades, etc). The Cardiovascular part of the Houston Methodist Hospital is where I got my original diagnosis and I can tell you that they have helped me to stabilize since my diagnosis (I can’t imagine how sick I would be without them). They met with me, ran three different test including Tilt and diagnose was quick)…I had been ran through specialist after specialist and misdiagnosis after misdiagnosis before them for almost a year). They worked with me to get a referral into Vanderbilt for a treatment plan. Dr Dave and Dr Chang are the two physicians who diagnosed me with POTS/Orthostatic Hypotension. They have been wonderful at listening to me but I wouldn’t say they are experts in the matter but they are at least knowledgable enough to help diagnose and quickly. And they have improved my health substantially since my first visit. As you know based on our prior conversations and blog posts, I am not 100% me but I was no part of me when I met them.

      • Lori says:

        Thanks for the info – and thanks for your thorough reply!It is VERY helpful to hear what you have been through! Thanks for again for sharing!
        You have been through the usual dx treadmill – it bites.

        The specialists in Boston DO treat and do not refer back to the PCP – THAT was the problem there – they didn’t take into account all my other medial history and were very tunnel-visioned about the ANS.I have a fantastic PCP now – willing to make calls herself to find docs for me to see. So many docs don’t even KNOW about ANS stuff! A lot of them want nothing to do with pts that have any form of it bc they don’t understand it.

        I do believe that many people who profess to have POTS or some form of ANS in its simpler forms have the sx secondary to the tons of meds they are on. This is not my PERSONALLY-developed opinion, but what is replete in the literature and what I have been told by no les than 6 different doctors.

      • Lori says:


        I am having difficult locating the correct “Dr. Dave” and Dr. Chang” at Vandy. Is Dr. Chang a neurosurgeon? Is Dr. Dave’s first name Uptal? Is he a hemotologist? I just want to make sure I get the info correct.

        (Also, may I ask how you got to Vanderbilt – was it difficult to get referred there for testing? I’m just curious b/c my PCP is asking. YOu may respond to me directly at Lori.Schneider at gmail dot com.)

      • Sorry if i confused you or didn’t give you clear info. Dr Chang and Dr Dave are at the Texas Methodist Hospital in Houston. I saw Dr Shibao at Vandy.

        It was not hard but just a wait to get into the clinic! If you live fairly close there is a research and clinical trial portion that you might also check out.

        I do have some suggestions should you decide to go to Vandy instead of one of the other Autonomic Function centers.
        1) Check out the others and make sure Vandy is most appropriate for you. For me having gone through most of the testing at another facility, there was too much REPEAT and not much new. But I did learn some things so it was not all for naught.
        2) If you haven’t had AFT testing including QSART and standing/laying noreprinephrine/epinephrine level testing, then make sure your PCP orders this test BEFORE you see the doctor. You only get one visit with the doctor so you want them to have the test results when they see you. This didn’t happen for me and they don’t take the test results from other facilities. So when I met with the Dr, she was at a very high level non specific discussion with me. This I didn’t like much especially after waiting four months to see her. She kept saying this isn’t usually how this works but I kept thinking…I sure didn’t schedule it this way!

        I have talked with several people regarding their visits with Vandy and Mayo. No one was disappointed with Mayo and a couple, including me, were regarding their Vandy visit.

        Maybe it was because I set the expectation too high for what I was expecting when I left. I am going to attempt to blog about my Vandy experience tonight. The good, the bad and the if I could do it over type things. I don’t want to steer people away from that program but at the same time, I just want people to understand that they can leave very disappointed if they are not careful.

      • Lori says:

        Thank you. Thus is exactly the type if honesty I wish ALL folks would share with us zebras. I really appreciate you taking the time to share honestly with us all!

      • Lori says:

        Heather – What twas the name of your doc at Houston Methodist?

        And, what are the FIRST names of the guys/gals at Vandy that you saw and liked?
        I want to make sure I get the right info for my page.

        Thanks again,


      • I also think that most ANS patients don’t have a lot of success sadly. So it’s so hard to just throw out a ton of positive examples. And the ANS physicians that are out there don’t follow the patients care, they just prepare treatment plans and send them back to their local physicians. I think this is one thing that needs to be highly addressed. We have got to come up with ways to be able to have follow-up care even if not face-to-face. There is too much technology out there that can allow virtual appointments. I am not saying that f-t-f appts are not needed but we just need better follow-up care with ANS specialist. I don’t have all the answers for sure but the field of ANS needs more experts for sure!

      • Jackie says:

        I think what you’re running into is a lot of people were diagnosed by a doctor who says “You have ___________ and I don’t know how to treat it.” Then these people join the pool of people like you who are looking for a doctor who can help them. If everyone with dysautonomia could give you the name of a doctor who did more than just run a test confirming dysautonomia, there’d be no need for your list. People do not want to give the name of a doctor who diagnosed, but didn’t help them, because that really would not help others. The reason you’re having trouble is that it’s easy to diagnose, but difficult to treat… So there’s a major shortage of helpful dysautonomia doctors. It’s not a lack of cooperative patients or a result of people who don’t have the correct diagnosis….. It’s just a reflection of the problem. I think saying people aren’t being compassionate, are mean, or unwilling to help is a bad way to get people to want to pitch in!

      • Lori says:

        It’s just bizarre. If someone had it – really has it-then sharing would be the first helpful thing to do. After the hoops I had to run through to get diagnosed – honestly diagnosed – not just,”Oh you’re passing out when you stand-up you must have ANS” I was thrilled because this awful thing that was causing me not to be able to eat, was making my hair fall out, making my mouth and eyes bone dry, was making my skin purple and mottled, and was making it impossible for me to drive – had a name!! I wasn’t sick with any of the stuff they tested me for, I didn’t have a vitamin deficiency, I wasn’t developing Parkinson’s. I was dx’d by the group at BI. But, they aren’t very good at managing it. but, heck yea – id still tell folks to go there for a proper DX, because that is all they do – Autonomic Disorders!!! I want people to know what they have – not guess. Proper dx is the key to proper R

        ANS disorders are NOT at all easy to diagnose. Almost every piece of general literature states that, b/c soooo many other diseases look like it. It’s usually a process that takes months.
        For example – CFS looks like it. Lyme can look like it. I was tested for both to rule them out.
        People on certain meds have the same sx b/c it’s a huge, well-known side effect. (Which is why they pulled me off all my meds when I was first hospitalized for it).

      • Lori says:

        The Beth Israel Deaconess Autonomic Testing Center in Boston docs (published world-wide, yadda yadda) – strongly affirm that you have to be OFF ALL DRUGS for at least ONE MONTH before testing. Drugs create cumulative effects in the body that can take MONTHS to wear off – and some create epigenetic changes that don’t resolve.
        I know. I was one of them. I have a bran tumor from taking a certain drug for many years. Now it secretes a hormone on its own.

        SSRIs, SNRIs and tricyclics (for example) are famous for creating ANS sx. I can NEVER go back on any of them b/c they will just aggravate the sx. Again, not MY opinion but medical FACT.

      • Jackie says:

        That’s interesting. Do you know what researcher names I should look up to find more information on this? I can’t search by the center name on the database I have access to.

      • Lori says:

        I don’t understand…u mean the guys that wrote the articles to which I refer???

      • Jackie says:

        Yeah — the authors. Most of time the researchers who conduct the studies author the articles is why I phrased it that way.

      • Lori says:

        Roy Freeman is one if them…
        Phillip Low is another….
        Andrew McKeon
        David Goldstein and Y. Sharabi
        H. Kaufmann and Norman Kaplan
        Joel Rothfield MD
        And many others….

      • Jackie says:

        Thanks, I will check it out!

      • Lori says:

        There are a gazillion others as well. I have them PDFd – not printed. Keep in mind the 2 differing attitudes in this – the cardio dudes and the neuro dudes. So there are huge bodies of research with a dichotomous split right in the middle. Do, there are well known and respected researchers on either side of the fence. The guys overseas tend to blend the 2 disciplines most successfully.

      • Lori says:

        Found one with great tables:
        Christopher Mathias 2007
        Autonomic Diseases:clinical features and laboratory evaluation

      • Jackie says:

        Thank you! I plan to spend some time tomorrow reading up on the issue.

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