Medical School Patient Surveys - Come Give Feedback!

[Swim15]

Hey guys! Some of you know that I am medical school - back at my studies with a lot of gratitude and thanks.

I am starting a club at my school based on functional/integrative medicine with education and awareness on the pitfalls of our medical system along with under recognized conditions, therapies, treatments, combinations of alternative and traditional medicine, etc, etc. Lots of stuff I won't spend pages on detailing here.

I am going to post several polls here (and keep them bumped for a couple months if its okay with everyone as I will be updating data probably monthly).

These will be posted here as well as some other forums and groups and my intent is to gather data from underrepresented patients on things like (in no particular order)
1. how many providers they have seen before getting a diagnosis (if they got one at all)
2. what diagnoses they were given
3. what treatments ultimately worked well, if any
4. the biggest frustrations with our healthcare system (was it providers, was it medications, was it cost, something else, etc
5. if you could change 3 things from a patient perspective given your experiences - what would they be

And other questions - my thought is that certain areas will likely reveal themselves to be more worthwhile polling about.


Before posting any, I'd like to get some feedback from people to see if there are any areas that have unanimous interest first. This information will be anonymous and it will be used to educate the next generation of physicians.

Thanks guys!

 

[Tammy]

1) I basically diagnosed myself first and then diagnosis was confirmed by an immunologist. (referred to me by a friend who had CFS). This immunologist believed in CFS and worked with many patients who had CFS and Aids. He was the most understanding Dr. I ever had but he went into research only so I only got to see him that one time. He was either the first or second provider I had seen.
2) Diagnosis: Chronic fatigue syndrome. After my lab results and history of symptoms, he told me the cause was the EBV.
3) What has worked best for me is taking natural anti-virals, anti-viral diet , heavy metals removal and other supplements for the immune system. (suggestions taken from Anthony William)
4) Biggest frustration with our health care system. Dr's dismissing their patients with Chronic illness. Making them feel like it's all in their head. Not really listening to their patients or not taking what their patients are telling them seriously. Don't dismiss a patient or automatically think there is really nothing seriously wrong when all the tests come back Ok.

Some things I would change. Free health care for all. Make it where Insurance would cover alternative therapies and supplements.

 

[Wishful]

I think the biggest frustration from an ME perspective is the lack of help for patients with rare or poorly understood diseases. When my ME first developed, I imagined that the path would be:

1) Basic medical tests
2) when 1 failed to provide a diagnosis, do a more involved (and admittedly expensive) set of tests
3) repeat 2 until you get a diagnosis
4) if they run out of tests to do, refer the patient to a facility that specializes in #4 cases. The US has such a facility.

I was really shocked whenever a doctor just said "Sorry, can't help you." with no further suggestions. I heard that far too many times, and it could easily have led me to suicide.

Dismissal of the patient's concerns is frustrating too. I think that's more prevalent with older physicians, who have seen plenty of problematic patients and just assume the worst of patients. Instead of partnering new physicians with older ones for training, maybe the opposite should be done, to let the older ones see that some (many?) patients they'd dismiss actually do get helped by the new physicians who take the patients concerns seriously.

 

[Learner1]

1. how many providers they have seen before getting a diagnosis (if they got one at all)

Many

2. what diagnoses they were given

ME/CFS
Common variable immune deficiency
Autoimmune POTS
Mast cell activation syndrome
Hashimotos
Adrenal insufficiency
Celiac
Chronic EBV and HHV6

3. what treatments ultimately worked well, if any

IVIG
Valcyte and Famvir
Huperzine A
Mitochondrial supplements
Quercetin
Cromolyn sodium
Liothryonine
Levothyroxine
Hydrocortisone



4. the biggest frustrations with our healthcare system (was it providers, was it medications, was it cost, something else, etc

Insistence on going to specialists for every different diagnosis

5. if you could change 3 things from a patient perspective given your experiences - what would they be

One stop shopping
Thorough testing
Prescribing with some aggressiveness

 

[wabi-sabi]

For me, it's the general lack of knowledge about these illnesses, for example, POTS, ME/CFS, MCAS, and all the other things we tend to collect. That lack of knowledge means it's taken a long time to get a diagnosis-maybe 4 years for ME/CFS, 9 years for MCAS, and still no official diagnosis on the orthostatic intolerance. I've run across two types of ignorance on the part of physicians: 1) they "know" these diseases are all psychosomatic and cannot be re-educated otherwise or 2) they know they are real, but don't know how to treat them. I don't mind going to specialists, if I can find a specialist that knows something. If you can just get these diseases taught in school, that would be a major win.

The other major complaint is with testing, and retesting, and retesting the same (unrevealing) things over and over. Part of this is not an individual physician level, but about getting records sent between facilities. The other part is a failure of diagnostic reasoning and wanting to retest all the simple things that the first 5 years of docs ruled out. When multiple people have done the same basic work-up, you need to know what to do next instead of repeating it endlessly.

The treatments that have worked a bit are the ones that fit my correct diagnoses. I'm, slightly snarky about this, but would you ask a type I diabetic what worked? No, because you already know the answer is insulin or a pancreatic transplant. Do you need to ask a celiac if avoiding gluten works? No, you know that answer if you know how celiac works. When we know the patho of ME/CFS, MCAS, POTS etc, we will know what treatments will work. And it's not like there are that many choices for us, anyway.

 

[Wishful]

One thought about the survey: make it clear that there's no point in complaining that the doctors don't know what tests to do for ME or what treatments to prescribe. They can't do what is still a mystery. They can't act until the researchers figure out what to do. If you're not clear about that point, I expect you'll get a lot of responses about that.

 

[lenora]

First off, thanks @Swim 15.....this is very kind of you.

1. I was very fortunate in that my very young neurologist (we were the same age) discovered a neurological condition, actually 2 that had causes me great distress. The diagnosis of CFS/FM came from two parties....my myofascial therapist and my neurologist. Both were gems.

2. I had tremendous pain due to one of my neuro conditions, surgery and the FM. It wasn't until gabapentin came along that we had any relief at all. Today I'm on lyrica for the pain aspect.

3. I'm old now....76, and have borne all of this since diagnosis when I was about 38. I'm sorry that I can't help you with other drugs because I have so many illnesses (high BP, osteoporosis....many broken bones, heart attack and problems associated with that, 7 stents.....2 types of epilepsy, and on it goes. I didn't have high BP until menopause which was very early in my case. Before that it was low.

4. My neurologist died about 8 mos. ago and it's been a huge loss. It's either death or retirement at my stage.

5. I do take vitamins, supplements, etc. because I don't eat enough to keep my body OK.

6. I can't travel and my energy is incredibly low....and I'm not complaining. Things could be worse, my husband and family believe and love me. I'm grateful.

7. I feel that something has been lost between the patient and doctor with the advent of the PA's.

8. Doctors who can't smile and ask about you in general. I'm congenial and don't unnecessarily complain.

9. Most of us are difficult patients to diagnose and treat. We know that.

10. I've more or less given up on doctors and will get immunzations and am more than capable of staying on top of my own condition. I have an internist (who isn't of much help). But.....!

ll. I'm just burned out and even I realize it. How many things can you have wrong that aren't considered really serious?

12, I understand that doctors are under pressure from insurance cos. Let's direct our anger to where it belongs.....and get rid of those PA's.

13. One more.....I came along at the time the MRI was discovered and put into use. Doctors no longer have "time" to forward a test result to other doctors. I'm responsible for it and had the good sense to ask. Charts aren't read, so choose the most bothersome condition and tell the doctor in the 10 min. you have with him.

Acupressure and ice are good for pain....especially Ace ice bandages. Pain at its worth is horrid. We need to find a method of controlling it.....for all illnesses.

14. I'm grateful for the exceptional doctor (or doctor to be) like you. It means so much.

Yours

Lenora

 

[Bronc]

Hey guys! Some of you know that I am medical school - back at my studies with a lot of gratitude and thanks.

I am starting a club at my school based on functional/integrative medicine with education and awareness on the pitfalls of our medical system along with under recognized conditions, therapies, treatments, combinations of alternative and traditional medicine, etc, etc. Lots of stuff I won't spend pages on detailing here.

I am going to post several polls here (and keep them bumped for a couple months if its okay with everyone as I will be updating data probably monthly).

These will be posted here as well as some other forums and groups and my intent is to gather data from underrepresented patients on things like (in no particular order)
1. how many providers they have seen before getting a diagnosis (if they got one at all)
2. what diagnoses they were given
3. what treatments ultimately worked well, if any
4. the biggest frustrations with our healthcare system (was it providers, was it medications, was it cost, something else, etc
5. if you could change 3 things from a patient perspective given your experiences - what would they be

And other questions - my thought is that certain areas will likely reveal themselves to be more worthwhile polling about.


Before posting any, I'd like to get some feedback from people to see if there are any areas that have unanimous interest first. This information will be anonymous and it will be used to educate the next generation of physicians.

Thanks guys!

Thanks for doing this. I look forward to your first survey. Considering how 'backwa5d' the medical establishment is when it comes to its understanding of ME I have come to the conclusion that we need to try and educate health professionals one by one. I speak to medical students at my local university once a month. Most have never heard of ME never mind have any any knowledge of the illness.

 

[Hope_eternal]

These will be posted here as well as some other forums and groups and my intent is to gather data from underrepresented patients on things like (in no particular order

1. how many providers they have seen before getting a diagnosis (if they got one at all)
2. what diagnoses they were given

4. the biggest frustrations with our healthcare system (was it providers, was it medications, was it cost, something else, etc
5. if you could change 3 things from a patient perspective given your experiences - what would they be

Hello, I’m a caretaker for my 20 yr old son who was diagnosed with ME this October. He has been bedridden for over a year with very minimal activity. He can make 2 bathroom trips and 1 trip downstairs daily. He is in his bed 23 1/2 hrs a day. Below is our experience with the medical side of the illness.

1. how many providers they have seen before getting a diagnosis (if they got one at all) - we saw a general practitioner, neurologist, heart doctor, gastroenterologist, endocrinologist, sleep specialist, 2 psychiatrist, rheumatologist and 2 functional doctors. Appointments with specialists took anywhere from 4 to 6 months for an appointment.
2. what diagnoses they were given - he was diagnosed with ME by the rheumatologist and endocrinologist.
3. what treatments ultimately worked well, if any - we are still in the process of trying to find the “right” treatment. His GP prescribed valacyclovir for a reactivation of EBV. We saw an initial improvement with his energy to sneak, where he once was barely audible to now we can hear him when he talks. We also saw a slight improvement with sleep but it’s still not ideal.
4. the biggest frustrations with our healthcare system (was it providers, was it medications, was it cost, something else, etc - the biggest frustration with providers was most gaslight us and insisted his illness was psychological and kept suggesting he see psychiatrist even though my son repeatedly said he wasn’t depressed and he felt physically fatigued and that when he did any activity outside his baseline (mental or physical), he’d get PEM and had to sleep for hours and it would take him days to get back to baseline. The second biggest frustration was that the providers didn’t seem to know where to send us for proper diagnoses and we were sent on many wild goose chases. One doctor sent us to the ER stating they could admit us and do a total work up but when we got there it was 6 hrs of them telling us there was nothing they could do and we were sent home. This was incredibly physically taxing in my son. The third biggest frustration was having to wait months for specialist appointments. The fourth frustration would be the lack of knowledge on how to treat this condition and how we are basically left on our own to figure out how to navigate this. And finally, the amount of money we have spent on this journey is obscene. Many of the providers we have seen have been out of network or do not accept insurance so you can imagine the costs that go into this when you figure in out of pocket providers, medications and supplements.

5. if you could change 3 things from a patient perspective given your experiences - what would they be - 1. it would be nice to feel like the doctors were actually listening to you and hearing what you are saying to them. 2. More attention to the ME illnesss ie research, treatment options. 3. More availability for specialists who treat ME.

 

[Wishful]

I don't think there can be specialists in ME until ME is understood better. Doctors can call themselves experts, but what is their actual success rate with patients? Is it any higher than from non-specialists or even self-treatment? Likewise for treatment options: there presently are no reliable treatments, just occasional unexpected successes. I'd like to see a comparison of success rates of "treatments prescribed by ME experts" vs self-treatments.

 

[Hope_eternal]

I don't think there can be specialists in ME until ME is understood better. Doctors can call themselves experts, but what is their actual success rate with patients? Is it any higher than from non-specialists or even self-treatment? Likewise for treatment options: there presently are no reliable treatments, just occasional unexpected successes. I'd like to see a comparison of success rates of "treatments prescribed by ME experts" vs self-treatments.

Understood, I know there isn’t much understanding of the illness as of yet. I was speaking more into if I could change 3 things…that would by my hood for the future treatment.

 

[Hope_eternal]

Sorry correction “that would by my hope for the future treatment.”

 

[lenora]

Hello @Bronc. This is very kind and a lot of energy will be taken just to complete what you're hoping to do.

I answered your questions, but directed them to @Wishful instead. Sorry about that.

The fact is that research has yet to find just one cause of our illness. As a matter of fact, in all these years no progress insofar as moving from a Syndrome to a Disease has been made. There is a very elusive biomarker somewhere, but where?

Personally, I feel that our illness is composed of many, many different problems. In the end, they may be different illnesses. We often don't share the exact same symptoms, and while the medical profession shouldn't be excused, they also share problems in making a diagnosis.

I strongly feel that PA's, unless exceptional, are a total waste of time. The Dr. needs to examine the patient firsthand and spend time talking to him/her. I've met one really good PA in all of these years. The neurologist I had for about 38 years didn't employ one and spent time with his patients. I know this isn't the way medicine is going.

The blame for poor service often lies at the feet of incompetent (or more likely, unwilling insurance cos.). We can't and shouldn't blame the medical profession for things that are out of their hands.

I've had many unnecessary MRI's when the use of proper medication (tried first) could have taken care of the problem...but no one listens to a knowledgeable patient. I'm a former nurse, a graduate of a fine nursing school in a well known university. It doesn't matter. But all that is seen is a very old lady.

As for the patient, just bring up a max. of three key symptoms at a time. Anyone is overwhelmed if we list everything wrong. It takes at least 3 visits to feel comfortable with a new doctor and for the doctor to feel comfortable with the patient.

At least there are drugs that can help with the pain so many of us suffer.

Get rid of voice mail.....if there was ever a frustrating "invention" it surely has to be that. I don't mind one round, but when it takes almost 3 hrs. to reach someone helpful, the system is broken.

No, I don't expect perfection and I'm often perplexed about the multitude of symptoms I have myself. But a doctor who is cheerful and appears willing to help is a winner. Research what will help the patient and have this information ready for the next patient.

We should all be courteous to each other....right from the moment we step into the medical office. In turn, the same courtesy should be given to us. People are sick and yes, many of us take trouble with our appearance and seem to be in the bloom of health. Then again, I've also show up very ill in my bathrobe. It doesn't seem to matter.

The answers to your questions were, as I said, directed to @Wishful. You'll be jewel in your field, I can tell. Thanks for your interest, but guard your own health....it's precious. Yours, Lenora

 

[wabi-sabi]

I'm so glad you are asking these questions. I've thought up another answer to #4.

There's so many things wrong with our care, but the one that's bothering me the most right now is the time lag between new scientific knowledge and getting that knowledge into clinical practice. There's more and more research coming out about ME/CFS and LC that makes me so hopeful.. and then I find doctors that still say they don't know anything about it of worse, spout BPS stuff. Not all of this is gaslighting on the part of the doc. Some of it is just lack of access to new info. We don't really have any healthcare system wide way of getting the latest info to docs who have been out of school for awhile. Naturally, your practice gets out of date. If you could find a way to fix that...

The other thing is, I hate functional medicine and don't think it will be an answer for us (or anyone really). I went to one once out of desperation. He recommended me to stop all my antihistamines and take a supplement instead, because natural. You can probably picture how bad the allergies, asthma, and MCAS got without my meds. The supplement did nothing. He told me to eat clay to detox mold. Because I have mold living in my body? Based on what test? Where is it living? Based on what test? Will the toe fungus go away if I eat clay because "natural" and "mold detox"? Note, I don't really have toe fungus. I just give it as an example of a genuine fungal infection that would most definitely not be treated by eating clay. That one I didn't do, because I can't imagine how sick eating clay would make me since I have gastroparesis. Which he called IBS... "Nontypical" IBS (which isn't a thing) when I told him I didn't meet IBS diagnostic criteria. And then the salt water... So he told me to drink sole water, which is Himalayan pink sea salt mixed in water. Or maybe it's Celtic salt; I forget. Anyhoo, this was before I knew that POTS needed salt loading. I tried it... it did nothing. Because I need 4300+ mg of sodium and 3L water daily. Not 3TBSP sole water. And it's the sodium that matter, because electrolyte physiology, which you know from med school. Doesn't matter if it's pink salt of gray salt or outerspace salt. It just needs to be salt. All those trace minerals are in quantities to small to do anything. And I need the sodium!

I hate functional medicine just as much as the BPS stuff. It's just a different way to take advantage of patients while ignoring actual pathophysiology and pharmacology. Integrative medicine is fine- see Dr. Weill from Arizona- but please stay away from the functional stuff for all our sakes. Ask one of your profs who doesn't like it for a good explanation of why it's a problem. In the meantime, here is a slightly snarky explanation:
https://www.mcgill.ca/oss/article/health-videos-quackery/cracked-science-31-functional-medicine

 

[lenora]

Hello @wabi-sabi.....I signed up for the newsletter that comes once/week. It sounds quite interesting.

I remember asking my neurologist "Why is it that you feel better on the day of your appointment." His reply, "Because you're expecting some form of relief." I thought it rather nicely summed up exactly what's going on with the patient and the doctor. Thus, the newsletter sounds very informative.

I did read some of the "stories" and I'm impressed with what I've learned thus far. If nothing else, it's another way of thinking and to my mind, that's good.

Like everything else, I'm sure there are good as well as bad Functional Medicine doctors. I've had many types of physicians along the way. None more helpful than my neurologist, but many who tried their best. Sadly, there is just a severe lack of knowledge about this illness. This has been a common thing for at least the past 40 years (when I had my first surgery). No information then....for either patient or doctor. Many things have improved, but not to the point of true satisfaction....at least at this time.

Out of interest: I just watched an interview on perhaps youtube, re: Selma Blair, a still fairly young actress. Now the symptoms of MS have been known for a long time. Yet she couldn't get a diagnosis of her particular form of the disease (rather wretched, I'm afraid). She saw doctor after doctor and yes, it all sounds so familiar. This is now a recognized disease, not a syndrome as it was for so many years....and yet this well-known woman was given the same run around that so many of us have experienced. I found it interesting....but then I have too many interests (perhaps 😊). Thank-you. Yours, Lenora

 

[wabi-sabi]

Like everything else, I'm sure there are good as well as bad Functional Medicine doctors.

Well, yes...there are skillful and unskillful doctors, or for that matter, professionals in any field. We all want the skillful lawyer or doctor and not the one that barely graduated. Let me try to give an analogy.

I remember a history class where we learned about the Salem witch trials. It was so interesting, but also really chilling. They took as evidence in court nightmares, gossip and hearsay. Then they used that evidence to convict and execute people. Today, we wouldn't accept that as evidence, partly because we've learned from things like the Salem trials. Now, I wouldn't say that lawyers and judges back then just weren't as good as their jobs as lawyers and judges today. I would say that weren't being rational, understanding human nature (what we dream or gossip about), and consequently failed to make good rulings- they convicted and executed the innocent. Why, they would take a wart as evidence that a woman was a witch! That's not being a bad judge or lawyer, that's a failure to give a fair or logical judgement because you have irrational beliefs. In that case you are not doing law, you are legalizing your own false beliefs. In that way, functional medicine doctors are not good or bad doctors. They are fundamentally not practicing medicine because they are basing their practice in their own false beliefs and not modern science, physiology etc.

I've looked online a lot to try to find sources that explain why functional medicine is wrong, but they're awfully hard to find. Most people descend into ad hominem attacks or snarkiness that doesn't really educate the public. And while I love some good snark, that sort of condescension doesn't really do a good job at education and just reflects badly on the speaker. I hope I've made more sense here, but you can be the judge of that. I can try to explain the issue in detail and without the analogy if I have the energy someday.

 

[Wishful]

Himalayan pink sea salt

= NaCl + BS

No, wait, the proper formula is NaCl + BS = $$$

 

[Rufous McKinney]

It's just a different way to take advantage of patients while ignoring actual pathophysiology and pharmacology

thats why I like chinese traditional medicine, which has helped me alot.

its a system. Based upon extensive experience, implementing the system.

I hate functional medicine just as much as the BPS stuff. I

No system at all.

But I've always been Do Not Take Their Pills, and Figure Out Another Way to Fix it. (they meaning traditional doctors, and Pharma pills)

These other ones- everybody is full of Candida. And I don't even believe we have a shred of evidence of that, actually.

 

[Rufous McKinney]

I remember asking my neurologist "Why is it that you feel better on the day of your appointment." His reply, "Because you're expecting some form of relief."

I never expect relief, from visiting a doctor. It happens very rarely. (relief)

 

[wabi-sabi]

No, wait, the proper formula is NaCl + BS = $$$

Ah, BS. My favorite chemical formula.