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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Women are relying more on 'Dr Google' than their GP .... I'm, like, totally stunned !!!!

YippeeKi YOW !!

Senior Member
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16,047
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Second star to the right ...
I have little respect for most GP's, so I can blow them off like chaff. I know lots about what they know, and I know that it isn't much.
I totally agree .... it's not so much that they dont know much, they just seem to prefer not to use it ....

Prepare yourself for a visit from Hip ....

PS ... I posted this a ways back in the Quote thread, you've made me think of it again ...


The three stages of life: 1. Birth … 2. WTF … 3. Death – Unknown
 

heapsreal

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I'm going by GPs in Australia, but they rarely diagnose anything. There's basic sort of things they treat but once it gets to a certain point they are a referral system. I think many GPs could treat past the usual point but I think alot has to do with regulation and it mostly regulated down to the lowest denominator/IQ of the GPs.

There's also an expectation of patients. If one hasn't been around the health system very much at all, they will think that all drs are extremely intelligent and have an answer for most things. A GPs knowledge is very broad, more so than most specialists but the depth of knowledge is can be very shallow. In regards to cfs the knowledge and research is very limited and there's no particular specialist that really suits cfs. I think we need to think of them as monitoring our general health like blood pressure, cholesterol etc and minor things that pop up like antibiotics for a strep throat or ear infection etc. All I expect from my gp with cfs is to help with symptom management. He does order certain blood tests for me but I keep it to a minimum and the tests I ask for he says he doesn't really know much about but is happy to do them once a year or so, basically monitoring my lymphocyte subset testing I've had through my original cfs gp over 10yrs ago and prescribe me famvir which he does as I was on this prior to seeing him.

So really we use Dr Google because there is a gap in the health system when it comes to cfsme. This is probably why many cfsers are alot more knowledgeable then most GPs when it comes to cfs. This reminds me of awhile back now I was on an MS forum. I was surprised how little they knew about their meds or even other research about their condition. But they are able to leave alot more to the health system to look after them, not saying it's great but compared to cfsme it's light years ahead. So it leaves alot of unanswered questions about cfsme that we have to research and look for.

My original GP cfs dr was involved in cfs research in his early days as a Dr and he kept up to date on the latest things. I remember first bringing up antivirals and he started talking about Dr Montoys and Dr Lerner etc. It was almost like he was a pt on the forums here etc. He would run labs and was the first Dr to do lymphocyte testing on me. I didn't even know it existed. He would also prescribe things off label if he thought it was safe and the pt understood the pro's and cons. But after so many years, the politics and the health system slowly started screwing him into the ground on anything to do with cfs. He was one of the very few Drs willing to actually help cfs but over time he got slapped on the wrist that much that he just turned into a normal gp. Others who use to see him were saying the same thing or would mention other good cfs GPs who went down the same road. I use to say it's a conspiracy which makes it sound that we think things are against us but really it's just a fact, the health system wants to ignore cfsme. Why, I wonder! There's something we aren't being told. There's millions of us so it's not rare. Weird viral research has been going on much longer then 2019. Maybe bat herpes crossed over into humans in the 1950s??? Maybe earlier????? Another thread I've gone off on a big tangent 🤣🤣🤪😓
 
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Hip

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In contrast to people who are highly critical of doctors, I am amazed at their diagnostic intelligence.

It's been pointed that there are only around 200 symptoms, but 10,000 different human diseases, and those same symptom patterns are repeated over and over again in all these diseases, making it very hard to distinguish one disease from the next.

This is the reason why medical diagnosis is so difficult: the disparity between the number of symptoms and the number of diseases. If the number of symptoms were similar to the number of diseases, then diagnosis would be really straightforward. But it is not; as we know just in the area of ME/CFS, the list of diseases which can masquerade as ME/CFS is large; and that is in just one tiny area of medicine.

Until we develop some Star Trek-like medical tricorder, diagnosis is always going to be a hit and miss affair. The difficulties of diagnosis is not a failing of a doctor, because you will probably find even the very best doctors still have the same misdiagnosis rate; it's to do with the symptom/disease number disparity I mentioned.

Not only that, but doctors have to deal with people with all sorts of personality dispositions, from the aggressive types, which must be quite disconcerting for the doctor, to those with really poor abilities to explain themselves, which makes diagnose much more difficult. Every person expresses themselves differently, and most people are probably not conveying information to their doctor in the optimum fashion, just because of their personality.


When we do develop the medical tricorder, then of course we will probably no longer have doctors: in the doctor's surgery there will just be a computer monitor and AI camera which asks you questions, and automatically arrives at the correct diagnosis.

Actually, has anyone here tried Symtoma? It is free, and studies have found Symtoma it the most accurate AI medical diagnosis system yet developed. You just type in your symptoms, and Symtoma may then ask you some clarifying questions, and then it will provide a medical diagnosis. I was impressed by it.
 
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BrightCandle

Senior Member
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1,147
Its been 8 years, I have had 175 medical appointments and they haven't yet come up with a diagnosis, symtoma does it in 5 minutes from the same results, so I am not impressed by the diagnostic capabilities of any of the people I have seen. More than that they haven't even ruled out the thyroid, they have refused to look at the other known causes of my condition. I have done the necessary tests but my doctors never bothered nor were they even interested in any scans or blood tests results I determined myself either. Frankly I would just defund the entire NHS, its been utter utterly worthless to me, I would be less ill if it didn't exist because all they did was make me worse.
 

Hip

Senior Member
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17,824
but my life not worthy enough to heal

ME/CFS has no cure, and has next to nothing in terms of helpful treatments. That's not the doctor's fault.

One can however blame the unfair allocation of research funds, since had more money been pumped into biomedical ME/CFS research over the last 50 years, a good treatment might have been available by now. And one can certainly blame the psychiatrists who pushed onto the world the idea that ME/CFS is psychologically-caused, as this was responsible for much of the loss of interest in ME/CFS as a biological condition.
 

Treeman

Senior Member
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773
Location
York, England
ME/CFS has no cure, and has next to nothing in terms of helpful treatments. That's not the doctor's fault.

I'm not seeking to pick a fight, but GP's are part of the medical community, patients expect them in the first instance to recognise illness. Their finds form part of consideration for research funding. I disagree with (what I believe) is your assumption that they have no responsibility in influencing medical research. Psychologist's got involved because GP's said there was no physical illness. There has been insufficient treatment/ cure for ME/CFS in part because of GP's.

This thread to me is about sexism. More women than men have ME/CFS. Men didn't believe women who said they were sick, were sick. That's why women would rather go to a search engine than a GP.

Some of the best societies on the globe are still full of inequalities and discrimination.

I live on a country where the man who sets taxes and collects them, allows his family to squirm out of this and morally cheats it. The person who leads the country breaks the law and decides it's ok to do so for him and and his mates.
 

YippeeKi YOW !!

Senior Member
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16,047
Location
Second star to the right ...
Not only that, but doctors have to deal with people with all sorts of personality dispositions, from the aggressive types, which must be quite disconcerting for the doctor, to those with really poor abilities to explain themselves, which makes diagnose much more difficult. Every person expresses themselves differently, and most people are probably not conveying information to their doctor in the optimum fashion, just because of their personality.
Dealing with patients of all sorts is part of their JOB. It's part of their training, or used to be. If they find it 'disconcerting', imagine how the patient feels, confronted by a hostile wall of denial, rejection and denigration at the exact hands of those they're seeking help and answers from.


Questioning a patient closely about his or her symptoms in order to get a clearer picture of what's going on medically is also part of their job, or used to be. It's called taking a history.

Letting Drs off the hook because people can be difficult, which God knows is true, particularly when they're ill and afraid and lacking a medical toolkit that would allow them to communicate in terms the Dr can more clearly and, more importantly, EASILY understand, is both remarkably disingenuous and also in direct contradiction to your previous posts, ie, that we all go into the Drs office armed with attitude and masses of information garnered from the internet and diagnosing ourselves before they can even unfurl their stethoscope (not that most Drs bother using one anymore) is hollow, unsupportable, and once again, places the blame on patients for the medical sin of being human and ill, rather than on the medical system that lets them down, time and time and time again..

Our medical system, here in the US and apparently in the UK and Australia, is badly broken and serves no one's interests but the Drs themselves, the hospitals they have privileges at and funnel money to in the form of procedures and surgeries and treatment protocols, and the pharmaceutical companies which provide the easy answers doled out so often, and so repeatedly, to patients suffering from other, potentially deadly, illnesses:
here's an anti-d, an anti-anxiety med, an ABX, another anti-d to support the first anti-d, something to help with sleep, something to help with waking up, a pill to help with shedding some of the weight gained as a result of the aforementioned meds, and on and on and on.


It's a critical problem, called poly-pharma, and here in the US, it's a serious one. Oversight of Drs is minimal, unless there's a national scandal like the incredibly shocking, irresponsible and downright criminal over-prescribing of say, opioids, not to people who need them for chronic pain (those patients cant get them anymore), but to desperate people using them as an anodyne against a world they can no longer cope with, or live in with any degree of dignity or comfort, and we wonder why mental health, in this country and in others, is an endemic problem.

If Drs find patients too hard to deal with, they're in the wrong profession. If they can't rationally parse out which symptoms, or cluster of symptoms, points in a particular direction and start their investigations there, then they're in the wrong profession. If they can't cobble together a minimal standard of care and try to live up to it, they're in the wrong profession. If they cant dredge up basic respect for the fact that the patient in front of them is PUTTING THEIR LIFE IN THE DRS HANDS, then they're in the wrong profession. If they can't maintain a basic level of minimal empathy for the sick and suffering, then they're in the wrong profession.

Which sadly is probably the case with half to three-quarters of our health care providers, and that's most likely before serious burn-out sets in.

I live in mortal fear of another cancer, or anything that would drive me into the hands of the medical system again. I think many of us do.

EDIT .... for additional clarity ....
 
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Hip

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Psychologist's got involved because GP's said there was no physical illness.

That's not really how it actually happened. GPs just follow their training at medical school, and in the UK, follow the guidelines that NICE provide. If they are taught that ME/CFS is psychologically-caused, then that's how they will treat it. The question you should be asking is who cast ME/CFS as a psychologically-caused condition in the first place?

To answer that, it is necessary to understand the detailed history of how ME/CFS was originally a disease considered biological, but got recast as a psychogenic condition. This history starts in the 1970s, when psychiatrists McEvedy and Beard, who proposed that the ME outbreaks like the the 1959 Royal Free outbreak were actually just mass hysteria. This was the first attempt at turning ME into a psychogenic condition.

Then later in the 1980s, psychiatrist Professor Simon Wessely stepped in, and claimed in effect that ME/CFS was an "all in the mind" condition which patients believed they had, but which was not a real biological disease.

This psychogenic view of Wessely was heavily supported by the disabilities insurance companies, who were able to get out of paying billions in disabilities payouts to ME/CFS patients by recasting ME/CFS as psychogenic.

The UK Wessely School psychiatrists, and their counterparts in other countries, profoundly altered the way ME/CFS was viewed in the 1980s and 90s, and are largely responsible for the way that the medical profession today often views ME/CFS as "all in the mind".

It took many years of hard work by ME/CFS patient advocacy to fight against this "all in the mind" view, and thanks to their efforts, progress has been made. But lots of people still see ME/CFS as psychogenic, so we need more advocacy, but the new generation of patients seem less interested in this. In fact a lot of new patients joining the ME/CFS community in recent years are not even aware of this history, nor aware of the advocacy battles fought by previous generations of ME/CFS patients.
 

Hip

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17,824
My hub DB and I are fighting the same battle. He doesn't have ME but the statins absolutely destroy him, and nothing he can say to his Drs has any flucking effect at all

Are you telling me that your doctor is forcing statins on you, and you have to "fight a battle" against it? I've never heard any such thing in the UK. Here if you are prescribed a drug by your doctor, and you don't want to take it, you just don't do so. I know people who have had side effects from statins, and they just decide to stop taking them.

There's no drama. There's no battles with a doctor. It's the patient's choice.

I'd like to know more about these battles you are fighting with your doctor for the right not to take statins.
 

Hip

Senior Member
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17,824
If they can't maintain a basic level of minimal empathy for the sick and suffering, then they're in the wrong profession.

Funny that you mention empathy, because I find in these doctor-bashing threads that you find on PR, there is no empathy for the position of the doctor and what they go through, and the only interest is in the patient's perspective. That's why I deliberately try to bring in the doctor's perspective in these threads, because that perspective is sorely lacking. Patients want empathy from their doctor, but they do not show any empathy in return, at least in these discussions.

Doctor burn out is an increasing issue, where doctors are pushed too hard, and it causes a breakdown. For example, see this article: More than half of doctors considering new career due to burnout

But that does not concern patients, they just want more and more from their doctor, demanding higher and higher standards, more high tech treatments, demanding that doctors spend hours researching every single patient. Sorry, but it is clear that patients are asking for too much, if half of all doctors are considering leaving due to burnout.

Also, if half of doctors are in a state of burnout, it's perhaps not surprising that they are missing important diagnoses, and not making optimal decisions as regarding the treatments they provide their patients.

Clearly the medical system is at breaking point, but it's not the doctor's fault, as the doctors are suffering themselves. If we are going to find a solution, we have to consider the situation of everyone involved, doctors as well as patients.
 
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Rvanson

Senior Member
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312
Location
USA
I live in mortal fear of another cancer, or anything that would drive me into the hands of the medical system again. I think many of us do.

EDIT .... for additional clarity ....

Yeah, and they charge your insurance five bucks for one or two Tylenol pills. Tylenol does nothing for pain for me. Even at four times the standard amount, its like a sugar pill. It also toxic for the liver.
 

Treeman

Senior Member
Messages
773
Location
York, England
That's not really how it actually happened. GPs just follow their training at medical schoo

Sorry. You're wrong, unless you were hiding under the couch in the medical room when the GP told me there was nothing wrong with me and I was suffering with depression, plus I missed heared them. They then gave me antidepressants and sent me to a Psychologist.


The phycologist was actually helpfully and pointed out one of the diagnostic features of depression was a lack of motivation. As I was at the time studying my undergraduate degree, that gave a very big clue that I was not suffering with a lack of motivation or depression.

So much for "GP's follow their training".

This kind of brings us back to the lack of intelligence, doesn't it, can't even "follow their training".

demanding higher and higher standards,

I can't find a single reason for wanting the highest standards all the time is wrong, can you?

And please don't mix up individuals with the whole system, they're not lone warriors, they get far more support then I ever have as a ME/CFS sufferer. I'd like to see them come round to my life stare at 4 walls and a ceiling all day, never get to see or speak to individuals for weeks on end, whilst my life filters away. And never even a phone call from someone concerned or a system to support me provided by an employer or the government.

I'm sure my life would be far more satisfying for them and less stressful.

From my point this isn't about me v a GP and wether I have empathy for them or not. In any job we have to build the skills to do it, if they can't do that, leave, that's what's expected of every human, isn't it? No one's forcing them to stay, I just wish I had the same option.

That isn't a comment based on callousness, this is what happens after 12 years of tory based rule and cutting of funding for public services. This is what the country wanted, they voted for it 4 times. I'm also willing to stick my neck out and claim that most Doctors in the UK voted for it. There's a saying that goes, be careful what you wish for.

Additionally, they're the first point of contact in the medical system. I'm complaining about it all plus the decision makers etc. I have empathy for everyone, but less respect when they constantly let me down, including the first point of contact.
 

Rvanson

Senior Member
Messages
312
Location
USA
Are you telling me that your doctor is forcing statins on you, and you have to "fight a battle" against it? I've never heard any such thing in the UK. Here if you are prescribed a drug by your doctor, and you don't want to take it, you just don't do so. I know people who have had side effects from statins, and they just decide to stop taking them.

There's no drama. There's no battles with a doctor. It's the patient's choice.

I'd like to know more about these battles you are fighting with your doctor for the right not to take statins.

No doctor is forcing Statins on me. I've little respect for them. I have studied medicine and medications as a layman. I've found PA's to be better informed and friendly than most docs. Surgeons are a different story. I've nothing against them, just GP's who push a drug, statins ,that put you into an illness or even death. Hard to believe, but quite true. The pharmaceutical companies have lots of power over doctors giving them free vacations and other goodies.
 

heapsreal

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Also, if half of doctors are in a state of burnout, it's perhaps not surprising that they are missing important diagnoses, and not making optimal decisions as regarding the treatments they provide their patients.
Sounds like they just need to exercise more. Drive their merc's to the gym 4 days a week and meet up with their personal trainers, this will cure them or add prozac to their regime and learn to meditate. I almost forgot, lose some weight will help.
 

Rufous McKinney

Senior Member
Messages
13,249
My GP does not push the pills. He knows. Mine is wonderful, Mine is 70 and this won't; last.

then what?

Mine they won't let into the hospital here. I now see that means your likely a better doctor. He sees lots of elderly and gets them off many of the pills.

My mother was entirely laced with drugs and I should have sued somebody.