Why your doctor may not be listening to you

[Ecoclimber]

This is an interesting article written by a doctor describing how he feels about seeing patients with chronic disease:

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease


Dear Patients: You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can't understand what your lives are like. How do you answer the question, "how do you feel?" when you've forgotten what "normal" feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won't let you forget about your frailty, your limits, your mortality?

I can't imagine. It comes through training and experience
But I do bring something to the table that you may not know. I do have information that you can't really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won't undo your pain, make your fatigue go away, or lift your emotions, it will help you. It's information without which you bring yourself more pain than you need suffer; it's a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors. See a therapist and then as a medical doctor you are required to continue to gain the latest knowledge in your field to help your patient if your knowledge is lacking...no excuses.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time....see a therapist for your insecurity and need for praise. No one happen to doctor for a job, you picked the profession and if you are not up to the task, get out!

Patient are not there to continue to enable your inadeqacies, patients are not therapists......see a therapist or find another occupation as this one doesn't suite you
But chronic unsolvable disease stands square in our way. You don't get better, and it makes many of us frustrated, and it makes some of us mad at you. We don't want to face things we can't fix because it shows our limits. We want the miraculous, and you deny us that chance.
With violins playing, your passive aggressive statement blaming the patients to deny you the chance for a moment of exhilarated feelings is sick....see a therapist

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress...see a therapist to deal with your emotional fustration, control and power issues or get out of the profession

You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do - most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing's disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder - your defining pain - is something most of us don't regularly encounter. It's something most of us try to avoid. So you possess deep understanding of something that many doctors don't possess. Even doctors who specialize in your disorder don't share the kind of knowledge you can only get through living with a disease. It's like a parent's knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

Ever hear of PubMed. Here is an example or analogy. Your taxes are due so you obtain the service of a CPA to have them file your tax return. Once file you receive a notice from the IRS that you are audited. They cite you for tax evasion based on the deductions taken, and the illegal tax shelters scheme develod by you and your CPA to avoid paying taxes. The tax law was changed in later years as stated in later editions of the tax code. Would you be upset with that CPA if he told you that he only used the taxed code regulations and statues in CCH in the year that he graduated but never bothered to kept up on any subsequent changes in the tax code, regulations and law since he obtain his professional license? Along with substantial tax penalities and possible jail time, would you be upset with your CPA?
Same analogy should fit for doctors who do not bother to keep up on the latest advancement in medical research in their specialized field.

So when you approach a doctor - especially one you've never met before - you come with a knowledge of your disease that they don't have, and a knowledge of the doctor's limitations that few other patients have. You see why you scare doctors? It's not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don't come on too strong - yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. Really, ...see a therapist for your doctor-god delusions. Doctors should show a sense of humility to acknowledge they don't know all the answers. Instead they must continue to learn to gain the necessary knowledge in finding the correct solution. This is a professional duty and requirement. That is attitude that should be express. Doctors are here to serve the patients. That's a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that. Good Advice
   
2. Show respect - I say this one carefully, because there are certainly some doctors who don't treat patients with respect - especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we....we are not your therapist. Too often doctors have demeaned, insulted, marginalize, belittle patients, these doctors should brought before the board and sanctioned.
   
3. Keep your eggs in only a few baskets - find a good primary care doctor and a couple of specialists you trust. Don't expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time. Good Advice
4. Use the ER only when absolutely needed - Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won't try to fully understand you. That's not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible. Good Advice
   
5. Don't avoid doctors - one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can't work that way, and I don't think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It's OK to keep a list of your own problems so things don't get left out - I actually like getting those lists, as long as people don't expect me to handle all of the problems. It helps me to prioritize with them. Good Advice
   
6. Don't put up with the jerks - unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don't feel you have to put up with docs who don't listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn't totally suck. Good Advice
   
7. Forgive us - Sometimes I forget about important things in my patients' lives. Sometimes I don't know you've had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don't want to admit my limitations. Be patient with me - I usually know when I've messed up, and if you know me well I don't mind being reminded. Well, maybe I mind it a little.

There's more to read on the article page:
http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

I couldn't leave this alone. The bold green are my comments

 

[chipmunk1]

ok now i understand. They don't want to deal with reality and they have a very fragile ego

don't come on too strong - yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect,

Jesus. When was the last time the car mechanic told the client i can't fix the car if you don't admire me?

they come across as small narcissistic children.

http://en.wikipedia.org/wiki/Narcissistic_personality_disorder

Narcissistic personality disorder (NPD) is a personality disorder[1] in which a person is excessively preoccupied with personal adequacy, power, prestige and vanity, mentally unable to see the destructive damage they are causing to themselves and to others in the process. It is estimated that this condition affects one percent of the population.[2][3]First formulated in 1968, NPD was historically called megalomania, and is a form of severe egocentrism.[4]

symptoms of this disorder, as defined by the DSM-IV-TR, include:[1]

• Expects to be recognized as superior and special, without superior accomplishments
• Expects constant attention, admiration and positive reinforcement from others
• Envies others and believes others envy him/her
• Is preoccupied with thoughts and fantasies of great success, enormous attractiveness, power, intelligence
• Lacks the ability to empathize with the feelings or desires of others
• Is arrogant in attitudes and behavior
• Has expectations of special treatment that are unrealistic

One can see that many doctors can easily meet the criteria for "megalomania"

 

[xchocoholic]

I couldn't leave this alone. The bold green are my comments

Thanks. It's good to see more sides to this. Btw. You missed greening one of your comments. The green part was helpful.

I'm trying to understand how seeing a therapist would help.

Surely these people help more patients than face those they can't help.

And they're definitely in control of certain medications, tests and procedures.

And we need their blessing for missing work or school. And for disability. Children need their blessing for playing group sports.

People are always asking for their opinions off the job.

The hierarchy in the medical field requires that those who aren't doctors listen to doctors.

There's probably more ...

So even if they didn't perform any lifesaving tasks that day, I'd think that this would give them the illusion that they're Gods EVERYDAY.

Tc .. x

 

[Leopardtail]

Here is more of the interview.



She splits her time between two clinical illnesses and she would prefer to have HIV because it's treatable as compared to ME is what she is saying. This is based on clinical results which are achieved when people can afford anti-virals. She would not be saying this if anti-virals didn't work on HIV or to patients that didn't have access to anti-virals. I guess she might want to visit a hospice dedicated to full-blown AID's patients who are dying of all the associated stuff that HIV infection brings -- pneumonia, sarcoma's, fungal infections, and other opportunistic infections. At least there is a treatment for HIV where there is none for ME which is why based on clinical results she would prefer to work with HIV patients or even have ME herself. I doubt she would choose HIV that has progressed to full-blown AIDs in the absence of a treatment that works.

I have interpreted her statements differently than to what most seem to think. I do believe she was speaking from a clinical perspective re: the efficacy of anti-virals for HIV vs the lack of research and lack of treatment for ME.

I've read the full posting and still read it the same way she said have one or the other not 'have patients', nor 'treat patients'. The point she was making was that on average her ME patients were significantly more ill.

 

[Leopardtail]

Certainly there are numerous barriers for ME/CFS patients to establish a "therapeutic relationship" with their PCP or specialist. Here is my opinion.

Hopefully, quality ME/CFS research will lead to easier diagnosis and treatment. This will take time.

In the mean time, "it's a mess". Primary care doctors are under increased pressure and stressed out themselves. 15 minutes is short enough to treat a complicated diabetic patient. How about a patient where there are no biologic markers to follow, no objective diagnostic tests, and no evidence based treatment guidelines.

In my experience, all patients want and deserve to heard. Hopefully, you will find someone with basic listening skills and enough experience to know that there are limitations to "medical knowledge". If you are fortunate enough to get to this point, many times ME/CFS patients and their physician will get to a point where both parties consider operating "out of their comfort" zone. (This is of course after numerous illnesses have been carefully ruled out by performing a thorough history and physical exam along with appropriate testing).

All you have to do is read some of the entries on this website to quickly get a sense that ME/CFS is heterogeneous "animal". One supplement/treatment that one patient swears by can cause severe side effects for another.

We need to increase ME/CFS awareness, continue research efforts, and get organized.

Unfortunately our healthcare system can be a challenge to navigate. No "eureka" answers here....

I can and DID resolve most of my ME problems initially with zero medical training. The vast majority of them came from three lesions: poor ATP; high Cystine; low Thyroid. At lest two of those lesions are very well understood - I have spoken with both my GP and a professional endo about the thyroid and been 'fobbed off'. GPs/Specialists can do much better for ME patients in they pull their heads out of the sand and try harder.

Most obviously instead of 20x ten minutes of appointment per year it needs to be 6 x 30 minutes (or it's equivalent). You cannot deal with an illness this complex 'one symptom at a time' competent diagnosis requires patterns of symptoms to be looked at.

Further doctors dealing with ME need to train their patients to notice the patterns in their symptoms so the separate clusters can be worked out.

Finally we need specialist ME clinics operating 'GP style' as per the Leicester clinic in the UK that are able to build up the necessary experience rather than a bunch of self important under trained psychiatrists.

If I can do it, A trained doctor can do it, It's that simple.

 

[Leopardtail]

I disagree. In the previous paragraph, she talks about HIV "patients" and CFS "patients". In the next paragraph, she talks about the two "illnesses". Then she says if she had to choose between the two "illnesses" , she would rather have HIV. She did not say if she had to choose between the two "patients", she would rather have HIV "patients". If that was her intent, she would have chosen to put this statement after the words comparing "patients".

I agree, Klimas always seems both exact and concise in her choice of language.

 

[Leopardtail]

I'm sorry for having brought up the original reference to Nancy Klimas; should we get back to the original intent of this thread or do the moderators want to split it in two?.....(sigh).

LOL, I don't perceive there to be any rancour, just debate about meaning.

 

[Leopardtail]

ok now i understand. They don't want to deal with reality and they have a very fragile ego



Jesus. When was the last time the car mechanic told the client i can't fix the car if you don't admire me?

they come across as small narcissistic children.

http://en.wikipedia.org/wiki/Narcissistic_personality_disorder



One can see that many doctors can easily meet the criteria for "megalomania"

that made me laugh out loud!!

 

[Leopardtail]

I couldn't leave this alone. The bold green are my comments

The point he might like to consider is that when ME patients are given good service they are often the most gratifying and thankful group of patients to work for. for ME patients to send cards, or letters of thanks to capable doctors is not at all unusual. The patients of Sarah Myhill send many hundreds of 'letters of support' to the GMC when they harassed her. If this man wants to be appreciated, he should specialise in ME and try harder.

 

[RYO]

Thanks to the depth of knowledge that the letter-writing doctor concedes that chronically-ill patients often have, for some years now, on the increasingly-rare occasions I go to a doctor, it is to try to get a prescription for something that I know is likely to help me. It is sometimes the only way I can get it - the doctor is the 'gatekeeper'. But sometimes I can't get it, and sometimes I have to jump through an exhausting and time-consuming range of hoops - and I am self-employed, so time and energy used elsewhere equal money lost from my already-meagre income) to get it (or not get it).

Are doctors not taught how to cope with illnesses that are poorly understood, and expert patients? Chronic illness now represents the majority of the burden on healthcare now, doesn't it? And patients now have a right to an equal relationship with doctors. In the UK this is enshrined in the NHS constitution. So why are sick, often-poor people being taught/expected to try to understand healthy, well-paid doctors instead of vice versa? Isn't it enough to suffer the illness without this extra burden?

Primary care physicians see plenty of chronic illnesses and many do their best to help patients. Even those who continue to smoke despite advanced COPD or diabetic who ignore their disease.

If you have the misfortune of coming across narcissistic doctor, move on quickly. Other professions have their bad apples.

To characterize all primary care doctors as narcissistic, unsympathetic, and uncaring is inaccurate.

The reality is a ME/CFS patient can find effective treatment via traditional and non traditional providers. A good PCP may not offer experimental treatments or herbals but will at least monitor you to make sure no harm is done.

Listen to Dr Montoya's lecture on ME/CFS on YouTube describing a PCP who tried to help their patient despite lack of cure.

Yes, primary care doctors need more education re: ME/CFS along with hundreds of other topics to stay current. Hopefully, more research is forthcoming.

Unfortnately, our current health system (in the US) is what we have to deal with. From my perspective, it may unwise to not include your PCP in your overall care. Keep the dialog open.

The best model of care that I have come across is a team based approach. Hopefully, this will one day be available to ME/CFS patients.

 

[Valentijn]

The point he might like to consider is that when ME patients are given good service they are often the most gratifying and thankful group of patients to work for.

Agreed. Patients with difficult illnesses are so often treated so poorly that honest and respectful interaction from a doctor can feel like an overwhelming kindness. It's amazing how far an "I don't know what's going on, but I'm going to try to help you figure it out" will go.

 

[Valentijn]

If you have the misfortune of coming across narcissistic doctor, move on quickly. Other professions have their bad apples.

To characterize all primary care doctors as narcissistic, unsympathetic, and uncaring is inaccurate.

From GPs the attitude tends to be mostly impatience and frustration. The only doctors I've seen who seemed to have some narcissistic tendencies were two neurologists. The other specialists I've seen were mostly in the "bewildered" camp.

 

[RYO]

Agreed. Patients with difficult illnesses are so often treated so poorly that honest and respectful interaction from a doctor can feel like an overwhelming kindness. It's amazing how far an "I don't know what's going on, but I'm going to try to help you figure it out" will go.

"I don't know what's going on, but I'm going to try to help you figure it out"

This is the foundation/basis of a "therapeutic relationship". The impatience and frustration stems from PCP having to see 20-25 patient per day. It is true most doctors will never truly understand your disease. I have heard of a pulmonary specialist who suggested his residents breath through a straw for an hour to feel what it is like to have COPD. The counter argument is that most patients really don't have any idea what is like to be a primary care physician. "Educated, healthy, arrogant, and god-like" are some of the comments I have heard. How about tired, in debt, stressed out, and ready to quit medicine despite years of training. This is what most surveys reveal.

We have to have realistic expectations. ME/CFS is a complex disease without "strong" scientific footing. Has anyone seen Dr. Lipkins presentation about his "viral search" at Stanford. He only found 2-3 patients with evidence of Herpes virus 6 infection (in blood samples) from Dr Montoya's own patient database. What does that say about Dr. Montoya's approach to treating patients with antivirals?

To me, it means the search goes on. Maybe the answer will come with understanding the microbiome, mitochondrial dysfuction, viral triggers, abnormal glial cells, or something unexpected altogether. In the mean time, hopefully you will find a physician who is willing to "help you".

 

[chipmunk1]

"Educated, healthy, arrogant, and god-like"
How about tired, in debt, stressed out, and ready to quit medicine despite years of training.

I think it's both.

Let's not forget the doctors create their system not the patients.

Why do doctors have to overwork so much? Because they have created a system where weakness is not tolerated and they have to play god. This is of course not possible so they suffer as well.

Doctors have successfully persecuted and mostly eliminated competition. As they say there is no alternative medicine there is only medicine. They want to be in charge and control everything. This is unrealistic so they are constantly overwhelmed...

 

[MeSci]

Primary care physicians see plenty of chronic illnesses and many do their best to help patients. Even those who continue to smoke despite advanced COPD or diabetic who ignore their disease.

If you have the misfortune of coming across narcissistic doctor, move on quickly. Other professions have their bad apples.

To characterize all primary care doctors as narcissistic, unsympathetic, and uncaring is inaccurate.

The reality is a ME/CFS patient can find effective treatment via traditional and non traditional providers. A good PCP may not offer experimental treatments or herbals but will at least monitor you to make sure no harm is done.

Listen to Dr Montoya's lecture on ME/CFS on YouTube describing a PCP who tried to help their patient despite lack of cure.

Yes, primary care doctors need more education re: ME/CFS along with hundreds of other topics to stay current. Hopefully, more research is forthcoming.

Unfortnately, our current health system (in the US) is what we have to deal with. From my perspective, it may unwise to not include your PCP in your overall care. Keep the dialog open.

The best model of care that I have come across is a team based approach. Hopefully, this will one day be available to ME/CFS patients.

I have seen countless doctors at various levels of seniority and have found almost every one seriously wanting.

I have tried approaching in every way I can think of - assertive, respectful, knowledgeable, mildly-deferent, and almost every time I have come away frustrated and angry at having wasted more precious time and energy for nothing except to be treated with rudeness and dismissal.

I do not tell doctors about all the natural treatments I try, as some UK doctors will wash their hands of you if you are trying something they disapprove of, or just have an even-lower opinion of you than they did before. It can be risky to tell them.

Re providers of 'alternative' treatments, many of us are so impoverished by our illness that we cannot afford to see them. Our illness keeps us poor, and our poverty perpetuates our illness.

 

[MeSci]

"I don't know what's going on, but I'm going to try to help you figure it out"

This is the foundation/basis of a "therapeutic relationship". The impatience and frustration stems from PCP having to see 20-25 patient per day. It is true most doctors will never truly understand your disease. I have heard of a pulmonary specialist who suggested his residents breath through a straw for an hour to feel what it is like to have COPD. The counter argument is that most patients really don't have any idea what is like to be a primary care physician. "Educated, healthy, arrogant, and god-like" are some of the comments I have heard. How about tired, in debt, stressed out, and ready to quit medicine despite years of training. This is what most surveys reveal.

We have to have realistic expectations. ME/CFS is a complex disease without "strong" scientific footing. Has anyone seen Dr. Lipkins presentation about his "viral search" at Stanford. He only found 2-3 patients with evidence of Herpes virus 6 infection (in blood samples) from Dr Montoya's own patient database. What does that say about Dr. Montoya's approach to treating patients with antivirals?

To me, it means the search goes on. Maybe the answer will come with understanding the microbiome, mitochondrial dysfuction, viral triggers, abnormal glial cells, or something unexpected altogether. In the mean time, hopefully you will find a physician who is willing to "help you".

I agree about the need for doctors to admit when they don't know something. It is all-too-rare in my experience, yet I think that patients value such honesty very highly.

I don't know why anyone would use the word 'educated' as a term of abuse, but I expect some do. It's very silly. Would they prefer an uneducated doctor?

I don't expect doctors to understand ME. I want them to take on board what I have learned about it, help me to treat myself in ways that have scientific evidence behind them (which I have identified for them, with summaries, references and links) and to order tests that I suggest. In short, they won't. Hence I have to go it alone, at my own expense and on a trial-and-error basis. I'm sure this is the case for many.

 

[Leopardtail]

"I don't know what's going on, but I'm going to try to help you figure it out"

This is the foundation/basis of a "therapeutic relationship". The impatience and frustration stems from PCP having to see 20-25 patient per day. It is true most doctors will never truly understand your disease. I have heard of a pulmonary specialist who suggested his residents breath through a straw for an hour to feel what it is like to have COPD. The counter argument is that most patients really don't have any idea what is like to be a primary care physician. "Educated, healthy, arrogant, and god-like" are some of the comments I have heard. How about tired, in debt, stressed out, and ready to quit medicine despite years of training. This is what most surveys reveal.

We have to have realistic expectations. ME/CFS is a complex disease without "strong" scientific footing. Has anyone seen Dr. Lipkins presentation about his "viral search" at Stanford. He only found 2-3 patients with evidence of Herpes virus 6 infection (in blood samples) from Dr Montoya's own patient database. What does that say about Dr. Montoya's approach to treating patients with antivirals?

To me, it means the search goes on. Maybe the answer will come with understanding the microbiome, mitochondrial dysfuction, viral triggers, abnormal glial cells, or something unexpected altogether. In the mean time, hopefully you will find a physician who is willing to "help you".

Negligence by Neglect.

The underlying tone of the relationship with all but tiny minority of doctors is "I don't understand the problem, go way your not ill" though it's seldom said. Changing doctors too often makes you 'a problem patient who can and should be ignored'. You have no way of knowing the attitude of the doctor until you are in their care.

I appreciate the point your are trying to make, however offering a patient with complex illness a 5-10 min appt, being quite useless as a result and forcing them to come back again and again is inefficient and ineffective. My former profession involved teams of people as per a doctors surgery, it involved very simple problems and it involved high complex ones. We did not apply a lunatic system of allocating every problem the same amount of resource, or consider it okay to be untrained in the operational requirements.

The unprofessional approach to managing complex illness meant that I trailed to my GP countless times for appointments far to short to be effective if wasted roughly two hours of his time and 30 hours of my energy per year for seven years. That wastage of the GPs time was his own fault, he was the architect of his own workload due to failure to get to grips with the problem. If a GP fails to make a patient well, they rightly come back. Attempting to diagnose an illness 'one symptom per appointment' is negligent - a doctor should on no account make a diagnosis based upon one tenth of the symptoms.

The problem all to often is that nobody at any local surgery, nor any local specialist thinks they have any duty whatsoever to ME patients, very often they refuse even to do the test necessary to make management possible.

ME patients would be far easier to deal with if: doctors routinely ran sensible test panels to identify lesions, and doctors had one person per practice who handled these slightly more challenging illnesses and offered slightly longer appts.

As I stated earlier - I untrained in medicine, untrained in chemistry, untrained in biology within three months was able to identify my two primary lesions. Within 12 months I was able to identify my third lesion. All of this starting with a concentration span of circa 10 seconds and with a no point a total working capacity over 1 hour per day.

If I can do it in such a short space of time with such limited capacity, and such limited knowledge, they can do it really quite quickly with a professional approach.

 

[Leopardtail]

"I don't know what's going on, but I'm going to try to help you figure it out"

This is the foundation/basis of a "therapeutic relationship". The impatience and frustration stems from PCP having to see 20-25 patient per day. It is true most doctors will never truly understand your disease. I have heard of a pulmonary specialist who suggested his residents breath through a straw for an hour to feel what it is like to have COPD. The counter argument is that most patients really don't have any idea what is like to be a primary care physician. "Educated, healthy, arrogant, and god-like" are some of the comments I have heard. How about tired, in debt, stressed out, and ready to quit medicine despite years of training. This is what most surveys reveal.

We have to have realistic expectations. ME/CFS is a complex disease without "strong" scientific footing. Has anyone seen Dr. Lipkins presentation about his "viral search" at Stanford. He only found 2-3 patients with evidence of Herpes virus 6 infection (in blood samples) from Dr Montoya's own patient database. What does that say about Dr. Montoya's approach to treating patients with antivirals?

To me, it means the search goes on. Maybe the answer will come with understanding the microbiome, mitochondrial dysfuction, viral triggers, abnormal glial cells, or something unexpected altogether. In the mean time, hopefully you will find a physician who is willing to "help you".

I find this attitude in medicine less than adult. If an ME patient shows: Thyroid or Testosterone related systems then a thorough panel revolving around those symptoms is needed and should be done. The 'I don't know but we'll work it out' pattern of medicine is all we ask for - and it's all that's needed, but it's not what we are getting. If doctors ignore the ME label, look at the symptoms and look for more subtle versions of common lesions that cause those symptoms, they are often successful. What I do acknowledge is that the treatment of ME must be multidisciplinary and not totally the GPs responsibility but the very strong attitude that its okay to fail these patients, or I just can't help them needs to change. We can be helped with the right attitude.

 

[Valentijn]

Lesions?

 

[CFS_for_19_years]

When I was lost in the fog of lithium-induced hypothyrodism and undertreated (only given T4) I would get up at 3 p.m (yes, I GOT UP at 3 p.m.) and starting searching on the Internet for the remedy since I wasn't responding to T4 alone. I had to beg my doctor to give me T3 and sent links and information to my doctor.

Her "research" led to the conclusion that T4 was just as good as T3 and furthermore, she suggested my time would be better spent resting than trying to find a solution on the Internet. This was from a young female primary care physician. I told her that I would spend the rest of my life on the Internet if I felt that was the only choice.

I fired her and found a much better primary care doctor.