4 ms·

The more I am unfortunately exposed to this after catching ME/CFS the more I realise medicine has a huge professionalism problem. Maybe a better term is a relig

The more I am unfortunately exposed to this after catching ME/CFS the more I realise medicine has a huge professionalism problem. Maybe a better term is a religious problem. Anything they cant currently explain is the patients fault. Having chronic energy fatigue issues is just me being lazy apparently and the enormous crashes I get after exercise are me doing wrong. The hundreds of thousands of c19 patients that develop this condition will get the same thing. To me it looks like most of them lack professional curiosity and certainly basic empathy. I lost all my respect for doctors over the 6 years based on how I have been treated.

podgaj 6y ago
Both myself and my mother were diagnosed with ME at one point. And I agree, even when my tests came back weird my primary care doctor would say, "What do you want to do now?" Argh
- PaulKeeble 6y ago
  Alas I am living that. I did my homework I have worked out what I want to do next and I am being told no. The tests I want they can't order as they are apparently too specialist for general practice and the drugs to find the issue via treatment are too far too off label for them to justify despite studies and clinical efficicacy from other countries. I just view that as a refusal to diagnose and treat me, no point putting it on me if you aren't then going to let me treat myself. It is frankly absurd to put this onto the patient. It is all about their perceived Physchological basis of the disease, they will humour you on tests and some low harm drugs until you run out of stuff and hope you will finally see the light that CBT will help you.
  - podgaj 6y ago
    If there is any test you should get is is a serum amino acid test. I have done much of the foot work on ME/CFS. Start looking into aldehydes (malondialdehyde specifically) and the role they play. Also, if you can get your genetics from Ancestry it could help you understand yourself more.
kgwxd 6y ago
Part of it is systemic though. Those that do have professional curiosity are unable to explore it due to constraints by insurance companies. Overall cost is the primary motive instead of quality of life. I imagine working in the medical industry is very disappointing for people that entered it with the intention of helping people.
- podgaj 6y ago
  This is true, but smart doctors know how to work the system. But I am on medicare so it might be easier for my doctor.
- PaulKeeble 6y ago
  Given I am in the UK alas that doesn't explain the issue. The USA is a bit of a unique unicorn in its for profit system but the world over there are these issues. I understand why the public is like that, a lot of people don't understand the scientific method but doctors have done all 3 of the sciences and then gone on for another 6 years of graduate and post graduate study.
  - toyg 6y ago
    The NHS has massive internal pressures on costs. It’s considered one of the most cost-effective health services in the world, but that’s because they will try to get away with doing the minimum they absolutely have to in order not to look negligent. Children and at-risk groups (the elderly, pregnant, etc) get a lot of care, everyone else is deprioritized and sent home with a bit of ibuprofen. I have experience of other health services on the continent and the comparison does not flatter the NHS.
mensetmanusman 6y ago
To be fair, it is not the doctor’s fault entirely, it is an institutional problem. We have far too few doctors per capita to have enough time to treat people. This is mostly because we have institutions set up that reduce the number of doctors that are output (e.g. we have about the same number of medical schools as 100 years ago). tl;dr doctors have no time, there are lots of knock on effects to this. more doctors, less income though...
cpncrunch 6y ago
Speaking as someone who has recovered from ME/CFS, stress and (lack of) goals seem to have been a big factor in causing me to develop the illness, and stress seems to be a major factor for other patients as well (according to both the research, and the experiences of patients themselves). I don't see this as blaming myself, it's just how the brain works. Chronic stress has negative effects for all mammals. Take a look at forced swimming, visible burrow, or other stress experiments. It isn't the animal's fault that it has a negative reaction (in terms of cortisol, neurotransmitters, depression, anxiety, mental/physical fatigue, or whatever) to the stressful situation. The brain has evolved to generate these responses to stress, presumably as a survival tool to help prevent the even worse effects of chronic long-term stress. The one advantage we have as humans is that we have a certain amount of control in getting out of stressful situations.

podgaj 6y ago

Both myself and my mother were diagnosed with ME at one point. And I agree, even when my tests came back weird my primary care doctor would say, "What do you want to do now?" Argh

PaulKeeble 6y ago
Alas I am living that. I did my homework I have worked out what I want to do next and I am being told no. The tests I want they can't order as they are apparently too specialist for general practice and the drugs to find the issue via treatment are too far too off label for them to justify despite studies and clinical efficicacy from other countries. I just view that as a refusal to diagnose and treat me, no point putting it on me if you aren't then going to let me treat myself. It is frankly absurd to put this onto the patient. It is all about their perceived Physchological basis of the disease, they will humour you on tests and some low harm drugs until you run out of stuff and hope you will finally see the light that CBT will help you.
- podgaj 6y ago
  If there is any test you should get is is a serum amino acid test. I have done much of the foot work on ME/CFS. Start looking into aldehydes (malondialdehyde specifically) and the role they play. Also, if you can get your genetics from Ancestry it could help you understand yourself more.

kgwxd 6y ago

Part of it is systemic though. Those that do have professional curiosity are unable to explore it due to constraints by insurance companies. Overall cost is the primary motive instead of quality of life. I imagine working in the medical industry is very disappointing for people that entered it with the intention of helping people.

podgaj 6y ago
This is true, but smart doctors know how to work the system. But I am on medicare so it might be easier for my doctor.
PaulKeeble 6y ago
Given I am in the UK alas that doesn't explain the issue. The USA is a bit of a unique unicorn in its for profit system but the world over there are these issues. I understand why the public is like that, a lot of people don't understand the scientific method but doctors have done all 3 of the sciences and then gone on for another 6 years of graduate and post graduate study.
- toyg 6y ago
  The NHS has massive internal pressures on costs. It’s considered one of the most cost-effective health services in the world, but that’s because they will try to get away with doing the minimum they absolutely have to in order not to look negligent. Children and at-risk groups (the elderly, pregnant, etc) get a lot of care, everyone else is deprioritized and sent home with a bit of ibuprofen. I have experience of other health services on the continent and the comparison does not flatter the NHS.

mensetmanusman 6y ago

To be fair, it is not the doctor’s fault entirely, it is an institutional problem. We have far too few doctors per capita to have enough time to treat people. This is mostly because we have institutions set up that reduce the number of doctors that are output (e.g. we have about the same number of medical schools as 100 years ago). tl;dr doctors have no time, there are lots of knock on effects to this. more doctors, less income though...

cpncrunch 6y ago

Speaking as someone who has recovered from ME/CFS, stress and (lack of) goals seem to have been a big factor in causing me to develop the illness, and stress seems to be a major factor for other patients as well (according to both the research, and the experiences of patients themselves). I don't see this as blaming myself, it's just how the brain works. Chronic stress has negative effects for all mammals. Take a look at forced swimming, visible burrow, or other stress experiments. It isn't the animal's fault that it has a negative reaction (in terms of cortisol, neurotransmitters, depression, anxiety, mental/physical fatigue, or whatever) to the stressful situation. The brain has evolved to generate these responses to stress, presumably as a survival tool to help prevent the even worse effects of chronic long-term stress. The one advantage we have as humans is that we have a certain amount of control in getting out of stressful situations.