How can laymen report undiscovered disease to medical fraternity & create awareness?

[Kamikaze Pilot]

How can laymen report undiscovered disease to medical fraternity & create awareness?

When you ask this question to doctors, their reaction is, “What is your problem? Go to such and such specialists.” Meaning: Mind your business. Don’t worry whether the disease is undiscovered or not.

But umpteen numbers of doctors have got the diagnosis wrong and they are unwilling to clear valid doubts. The diagnosis is wrong because the symptoms don’t match. The diagnosis of mental conditions is correct when the patient is able to relate with the symptoms of diagnosed disease. He should feel, “Yes, the description of diagnosed disease is similar to my ordeal.”

But this isn’t happening nor are doctors accepting that they are dealing with undiscovered disease. This is dereliction of duty. Either they should get the diagnosis right or they should declare the case as undiscovered disease. They are doing neither.

When you demand explanation for the symptoms not matching with diagnosed disease, doctors have endless number of excuses to brush aside the question. Their refrain is, “We are professionals. We know better.” Some even ridicule the demand for diagnosis.

Further elaboration of reasons for searching clinical researchers will derail the topic. So coming to the point…

What is the specific way to contact clinical researchers in order to report undiscovered disease and publicize it? Whom to approach? Where, when and how to approach? Inquisitive scientists should jump on such opportunity of layman patients trying to reveal something. Researchers have so much to explore.

Don’t suggest asking doctors. Healthy functioning of patients is the last thing on a doctor’s mind. They are in a hurry to wash their hands off every patient.

To emphasize the question: How can laymen report undiscovered disease to medical fraternity & create awareness?

 

[Kamikaze Pilot]

Dear Moderators/Administrators,

This is one of those topics where frequent thread-bumping and tagging of uninterested members should be allowed. You have to perseveringly keep trying everywhere till you stumble upon actionable information. Kindly empathize.

 

[El Sidd]

How can laymen report undiscovered disease to medical fraternity & create awareness?

When you ask this question to doctors, their reaction is, “What is your problem? Go to such and such specialists.” Meaning: Mind your business. Don’t worry whether the disease is undiscovered or not.

But umpteen numbers of doctors have got the diagnosis wrong and they are unwilling to clear valid doubts. The diagnosis is wrong because the symptoms don’t match. The diagnosis of mental conditions is correct when the patient is able to relate with the symptoms of diagnosed disease. He should feel, “Yes, the description of diagnosed disease is similar to my ordeal.”

But this isn’t happening nor are doctors accepting that they are dealing with undiscovered disease. This is dereliction of duty. Either they should get the diagnosis right or they should declare the case as undiscovered disease. They are doing neither.

When you demand explanation for the symptoms not matching with diagnosed disease, doctors have endless number of excuses to brush aside the question. Their refrain is, “We are professionals. We know better.” Some even ridicule the demand for diagnosis.

Further elaboration of reasons for searching clinical researchers will derail the topic. So coming to the point…

What is the specific way to contact clinical researchers in order to report undiscovered disease and publicize it? Whom to approach? Where, when and how to approach? Inquisitive scientists should jump on such opportunity of layman patients trying to reveal something. Researchers have so much to explore.

Don’t suggest asking doctors. Healthy functioning of patients is the last thing on a doctor’s mind. They are in a hurry to wash their hands off every patient.

Medical consumerism however do exist in corrupt 3rd World countries. In some cases on an alarming Level.

Weapons and medicine are two business of the World i do Not like commenting upon.

 

[Dubious]

How can laymen report undiscovered disease to medical fraternity & create awareness?

When you ask this question to doctors, their reaction is, “What is your problem? Go to such and such specialists.” Meaning: Mind your business. Don’t worry whether the disease is undiscovered or not.

But umpteen numbers of doctors have got the diagnosis wrong and they are unwilling to clear valid doubts. The diagnosis is wrong because the symptoms don’t match. The diagnosis of mental conditions is correct when the patient is able to relate with the symptoms of diagnosed disease. He should feel, “Yes, the description of diagnosed disease is similar to my ordeal.”

But this isn’t happening nor are doctors accepting that they are dealing with undiscovered disease. This is dereliction of duty. Either they should get the diagnosis right or they should declare the case as undiscovered disease. They are doing neither.

When you demand explanation for the symptoms not matching with diagnosed disease, doctors have endless number of excuses to brush aside the question. Their refrain is, “We are professionals. We know better.” Some even ridicule the demand for diagnosis.

Further elaboration of reasons for searching clinical researchers will derail the topic. So coming to the point…

What is the specific way to contact clinical researchers in order to report undiscovered disease and publicize it? Whom to approach? Where, when and how to approach? Inquisitive scientists should jump on such opportunity of layman patients trying to reveal something. Researchers have so much to explore.

Don’t suggest asking doctors. Healthy functioning of patients is the last thing on a doctor’s mind. They are in a hurry to wash their hands off every patient.

Ego...THIS is in every field of the desi world!

From religious bigots who wont let you question the religion because they are "experts who know better" to the well educated doctor who due to ego is unable to claim I dont know! While in the West doctors are dying to say THIS MAY BE SOMETHING NEW ....

O and Pharma is now a business...it has less to do with people becoming better and more to do with selling their product!

 

[Kamikaze Pilot]

Medical consumerism however do exist in corrupt 3rd World countries. In some cases on an alarming Level.

Weapons and medicine are two business of the World i do Not like commenting upon.

Ego...THIS is in every field of the desi world!

From religious bigots who wont let you question the religion because they are "experts who know better" to the well educated doctor who due to ego is unable to claim I dont know! While in the West doctors are dying to say THIS MAY BE SOMETHING NEW ....

O and Pharma is now a business...it has less to do with people becoming better and more to do with selling their product!

Corruption or ego is not the issue. I think it is because medicos aren’t trained to deal with such situation. When they were studying medical, they weren’t instructed on what to do if they come across anything unique/strange/unfamiliar. They see everything through the prism of known diseases. The culture of out-of-the-box thinking is not there. They simply dismiss the patient by citing some universal condition. Who would question them? Doctors are answerable to none. And since they cite a vague universal condition that afflicts everyone to some degrees, it is hard to argue with doctors.

 

[Kamikaze Pilot]

It seems this mission is bound to fail. Take inspiration from Dale Carnegie's quote to keep going.

 

[Dubious]

Corruption or ego is not the issue. I think it is because medicos aren’t trained to deal with such situation. When they were studying medical, they weren’t instructed on what to do if they come across anything unique/strange/unfamiliar. They see everything through the prism of known diseases. The culture of out-of-the-box thinking is not there. They simply dismiss the patient by citing some universal condition. Who would question them? Doctors are answerable to none. And since they cite a vague universal condition that afflicts everyone to some degrees, it is hard to argue with doctors.

Common sense and sense of curiosity would tell you to take samples and experiment - with patient's consent of course!

 

[VCheng]

To emphasize the question: How can laymen report undiscovered disease to medical fraternity & create awareness?

Simple: Publish a paper in a respected journal.

 

[Kamikaze Pilot]

Simple: Publish a paper in a respected journal.

How can I? I am a layman. I don't even understand technical jargon. If I go to the office of journal publications, they will tell to follow 'proper' procedure viz. through reference letter from professional doctors or some official documentation.

 

[VCheng]

How can I? I am a layman. I don't even understand technical jargon. If I go to the office of journal publications, they will tell to follow 'proper' procedure viz. through reference letter from professional doctors or some official documentation.

Every journal has a listed section called "Format for Publication Submissions" (or similar) which anyone can follow, usually in the last issue of the year or volume, and on a website.

 

[Kamikaze Pilot]

Common sense and sense of curiosity would tell you to take samples and experiment - with patient's consent of course!

But doctors don't care. You know their attitude, "Bhagao isko. Kaha kaha se aajaatey hai."

 

[El Sidd]

But doctors don't care. You know their attitude, "Bhagao isko. Kaha kaha se aajaatey hai."

You can donate it to the local Medical University


They can grow it on a Mouse and tell you.

 

[Kamikaze Pilot]

You can donate it to the local Medical University


They can grow it on a Mouse and tell you.

I didn't get it. Donate what? And grow what?

 

[AsifIjaz]

There are 2 things, wrong diagnosis and mis diagnosis. These 2 are totally different things.
Now
... During med school a dr gets to know most of the xommon diseases with thei knowledge being more theoratical and less practical..
.... During house job or residency a dr is taught the practical side of the disease and gets to know more about the common or usual presentation of the disease. Hence the specialisation or sub specialisation exposes you to the rare presentations which usually is directly proportional to your hospital of specialization and the years you have spent their.
.... The doctors who stay in teaching hospital or tertiary care hospitals (which are usually teaching hosp) after their specialization continuously get exposed to rare symptoms and signs of diseases.
... A general physician or even a medical specialist will never be exposed yo or aware of the rare presentation and / or complexities of a disease.

The above are the usual causes of mis diagnosis and / or wrong diagnosis.
The culture in pak is that a GP and a simple medical specialist will not refer you to a specialist unless or until he or she has had a go at it. Because of our common mentality of not admiting that i dont know, due to less exposure the wrong idea they have that the rare presentations are called rare fir a reason and lastly its not common to take a dr to court hence a care free attitude. The laws are strict but u have to climb a mountain to get ur right.

Now there is another scenario.. Syndromes... Which is basically a combination or diseases which are very difficult to diagnose and treat. I remmeber a visiting professor of paedetriatic from finland or norway saying that it was the first time he was seeing that syndrome and he was above 55 yrs old. Bottom line syndromes are tooooo difficult to diagnose and then to treat.

The above is the scenario across the globe. Pts and diseases are misdiagnosed or wrongly diagnosed every where. Even NHS or US sees a gud share of the cases. The paper work to save onea skin or the referals are relatively more common abroad then in sub continent.

Now to clinical research.. Unfortunately u can not do research, if u are not a dr of the field or ideally a specialist of the field there is no way u can do research and if at all u are able to do it... Even then u will be arrested probably and ur result will not be published. The laws that govern clinical research are called Good Clinical Practice (GCP) and they are acceptable globally with FDA coming up wuth their own CFRs and research guidelines.

In the end please note that nowadays finding a new disease that is common in the masses is near to impossible. We see new classification of the severity of the diseases or the extent of a disease every few yrs. Same way the diagnositic and treatment guidelines are reviewed and changed every few yrs but finding an altogether new disease is difficult unless ofcourse it is found due to consanguous marriages, in closed communities with inter marriage (cut off tribes, religious grps) or due to exposure to chemicals or agents in the field of work.

I know my answer could have been more structured but i was basically trying to restrict myself to the least number of lines as i can write lines and pages on clinical research and its restrictions and implications. Hope i have answered most of the concerns raised in this thread

 

[Kamikaze Pilot]

Now to clinical research.. Unfortunately u can not do research, if u are not a dr of the field or ideally a specialist of the field there is no way u can do research and if at all u are able to do it... Even then u will be arrested probably and ur result will not be published. The laws that govern clinical research are called Good Clinical Practice (GCP) and they are acceptable globally with FDA coming up wuth their own CFRs and research guidelines.

Where did I say I want to do clinical research? Nowhere did I say I wanted to do clinical research. I just thought researchers would be more competent than usual doctors. Since researchers would have higher IQ they would be able to notice subtle things and understand difficult concept. They would get the diagnosis right. Hence I wanted to contact researchers.

Now I have a problem. The symptoms really don't match with those of the diagnosed disease and I am suffering. The wrong diagnosis/misdiagnosis have created additional side problems. What do I do?