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The UK Department of Health treat the behavioural disorder of Chronic Fatigue & 'No Specific Symptoms' (Oxford Criteria CFS) alongside the legitimate heterogeneous American 'CFS' and neuro disease 'ME' - all as behavioural disorders.
The state runs the health care system - the Department of Health - therefore they 'educate' doctors you are mentally ill - by refusing doctor training. CFS/ME does not exist on the medical training syllabus in the UK, and that is a FACT. Your invisible illness therefore is literally - invisible - on a medical level.
There is no one to complain to. There is no 'competition' advertising a better option, as there is no competition. In 2009, guidelines on 'CFS/ME' were issued by NICE (National Institute for Clinical Excellence) - which largely describe 'CFS/ME' still as mystery fatigue disorder. NICE are effectively an 'arms length body' of the Department of Health. They are there to 'legitimize' decision making on public health policy, mostly to defend blocking spending on life saver cancer drugs etc. This is done by statements by 'NICE' - justifying their decisions as being proven by medical research, clinical evidence. Any informed individual, soon learns that NICE, is simply a 'spin' machine for the government.
NICE, ended up 'getting hold of' CFS/ME and decided regarding CFS/ME.........
Checking for Virus & Bacterial infections prohibited.
Checking for Dysautonomia prohibited by using a TILT test, preventing neurological diagnosis.
Same goes for brain scan imaging techniques.
Giving B12, unless anaemic - prohibited.
Ditto on all Immunological drugs that help ME CFS patients.
*All above were always prohibited in reality, just never officially.
So when someone in the UK hears about tales of 'travelling to see Dr Peterson', or 'my trial of Ampligen' - we slobber and salivate like a hound desperate to join in with the game of 'catch'.
The concept (to us) we are allowed to see doctors, (other than a desk doctor prohibited in treating you) - is a dream concept.
This is possible through the state denying 5,000 research papers on CFS & ME, and sticking to 'evidence based' treatments which the Department of Health state as: CBT & Graded Exercise.
All provided by Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder, and Esther Crawley and others - who all happen to believe 'CFS/ME', 'ME' and 'CFS' are a form of somatization order, and caused by faulty illness beliefs.
These people are very useful for a socialised medical system, as they drive down costs, and prevent bio-medical research taking place. No alternative view point is allowed, funded, or published by the UK Department of Health.
For patients who are told they have 'CFS/ME' this is the end of debate in your doctor's office. You have no choice. You cannot go elsewhere, as alternative medical systems do not exist - literally.
Benefit of UK socialised medical system *turbo charged Obama care* outside the 'CFS/ME' label:
Universal ('free' at the point of use) socialised medical system is run by the state in the UK.
No contributions in tax? You still get the same service! Great for unemployed/disabled/illegal immigrants/criminals and 'health tourists' (get a free operation and leave the UK) - everyone gets the same.
Disadvantage - Now massively over subscribed due to immigration/population growth and people living longer. Long waiting lists. Prioritised medical referral. (Only the most sick get a relative rapid appointment). If you are not sick (and labelled with CFS/ME) expect at minimum 6 months - 12 months to see a specialist doctor, or wait for a test. E.g. Breast Scan with no 'evidence' of breast cancer, because your suspected breast cancer is now considered to be 'in your mind'.
Ditto same for brain tumour, heart failure, and even suicidal thoughts.
This would be illegal in the United States, and there would be legal consequences for a failed doctor, if harm were to come to the 'CFS/ME' patient for blocking, not believing, or slow referring a patient ON PURPOSE. (Private medical systems in the United States are aware of potential loss to brand image, and loss in profits from multi million dollar law suits. Private medical systems are thus careful what they do to patients.). What though, if there was only one brand?
In the UK, you cannot 'sue' any hospital; you can attempt to take the 'trust' (who look after multiple hospitals) to court. This is, in effect, impossible because no doctor is employed by the Department of Health as doctors (legally), they are 'guests'. Making them immune to direct prosecution. You take on the trust (a huge powerful network of multiple hospitals and 100's of doctors). 100s' of doctors Vs you the complainant. A non case, a non starter.
The idea any NHS Doctor, or Nurse can 'go to jail' for gross incompetence in the UK, is absurd to suggest. (Unlike in the United States). Knowing this, what do you think happens when a patient labeled with 'CFS/ME' begs people, warns people verbally or in writing that their discrimination or prejudice is endangering life? They, the bored, disinterested, over-worked doctor literally, can walk off as you are talking. They can and do. Can you walk to catch up with them? What if you do?
They ignore you and keep walking. Game over sunshine.
If someone walks off, how do you complain? If you are viewed insane by the state, what happens? Now compare this to when you pay $500 for an appointment by credit card in the United States. You expect a service. You deserve one as you paid for it.
If you are an American and reading this, imagine this scenario:
You go into a restaurant, you pay $500 for meal. This is the United States health care system.
In the UK, you go into a restaurant, and you are left to eat a meal pre-prepared. As it is 'free' you had better not complain about the taste of the food, that it's cold. Because it's free you should feel grateful. Right?
However, after your third visit, you decide to complain. The attitude of the waiter is to tell you 'everyone else didn't complain', or to imply through language (or body language) you should be grateful for what is put in front of you. In other words, there is an insidious over bearing sense of?
Submissiveness mixed with this sense of reduced entitlement, as the entitlement is questioned as you have 'CFS/ME'. (This leads to failure to report bad service, and failure to ACT on bad service). This is OK in a restaurant. This is potentially lethal in a health care system.
In the UK, when nurses inject people with the wrong medication and kill people through not reading labels, nothing happens. At the most, (the very most) the nurse is removed from their duty. Usually this is not the case, the trust defends the nurse and the hospital trust 'apologises'. Doctors do far worse than nurses, and they are not dismissed, they are defended - especially if harming you in the name of 'Science' due to a theory they read on Google linking to a BMJ article by Wessely that exercise is the best thing to use. So exercise you must. (Remember to be grateful for this appointment, you are grateful aren't you?).
The idea that American doctors and nurses go around (grossly incompetent) killing patients and simply say 'sorry' (through their employers) and aren't even taken to court by the family of the fallen relative - to an American, is largely ridiculous. As an American you pay for your service, the service fails - you get compensation.
Again, you will never get compensation in the UK for 'CFS/ME' as this service you got, you have this feeling of getting a 'free lunch' every single time you set foot in the hospital, in your doctor's office, and in the emergency room, where (as a 'CFS/ME) patient you are institutionally not believed.
100% not believed. You claim to have ''brain inflammation huh''? I didn't know Chronic Fatigue caused that - they reply. Smiling and yawning. They repeat some research from Trudie Chalder on overcoming your 'fear' or exercise, and you leave the doctor's office, without another appointment.
This, is how people (literally) end up not going to the doctor. How can you be severely chronically ill and NOT go to the doctor? Well from the examples I give above, you can see. Do patients really not go and see a specialist for 10, 15 years? Yes.
Am I seriously telling you, I and others with 'CFS/ME' go to a desk doctor, and they won't take: Blood pressure, pulse, or maybe listen to your chest - EVER? The entire time you meet them? Yes.
Am I seriously telling you, I and others with 'CFS/ME' get so sick we can't even leave the house and maybe once a year we get a house visit? Yes. (Most GP surgeries now refuse non emergency home visits). And you tell them you are so out of breath you can't walk up the stairs and they do nothing? Yes. No referral to a cardiologist? Yes. No tests? No.
How? Because 'CFS/ME' patients are somatizing attention seeking tired people who mostly all recover within 2 years. Remember? Ohh.
So what would you do if you were American? Go to an ER and refuse to leave until someone speaks to you, listens to you? At the best, you are told to go back to your doctor or this is an ER, not a doctor’s office to discuss matters with. This is a place for seriously ill people, not for people with 'Chronic Fatigue Syndrome'.
You can cry and scream all you like. You can sit there for 48hrs, lay on the floor. Nothing will happen, as the state labeled you as an attention seeker, as mentally ill - and this was backed up by 'evidence based research' that any doctor or nurse can access in ER on a PC - when you insist your illness is real. The state NHS website does not say your disease is very serious, it says it's called 'Chronic long term tiredness'. And thus you become the hysteric of ER, by default. Nowhere is there information on cardiac chest pain, and shortness of breath and what to do, and nothing about being 'allowed' to refer. Even if by some wonderful chance, you get a suggestion of referral and then discharged from ER back home - the desk doctor can (and will) block you referral to a specialist.
(In the UK, you cannot go to a specialist direct - you must be referred first by a desk doctor) who mostly thinks you are mad. Will you get refered? No. For someone with 'CFS/ME' this is exceptionally bad news, as it's to the desk doctor's discretion (untrained in what they think is 'Chronic Fatigue') to allow the medical practice funding to refer you, and then the trust you get refered to can refuse you - the patient.
Again, if this was all paid for via insurance and credit card - you would be allowed to see a doctor, rather than see a desk doctor who won't even take vital signs, or even agree to enter into 'discussion' about your 'beliefs on Chronic Fatigue Syndrome'. Discussing physical symptoms, is suggested as counter-productive by Wessely and friends - and so they don't do it.
In all other areas of sane medicine, discussing symptoms with a doctor is vital to understand the complaint the patient has, hence on an ER sheet in hospital it says 'Attending Symptoms', this is not the same as 'Diagnosis' - having reviewed you personally.
The 'CFS/ME' patient in the UK, is thus encouraged at all levels to be silenced - and this is advised and recommended as beneficial - by Psychiatrists we all know and love.
The psychological effect on the 'CFS/ME' patient, is to complain less, or not at all. (Hiding physical nature of the disease), and to feel hopeless and feel less worthy. No one feels worthy in the NHS - due to the 'free lunch' analogy I used above. Yet with 'CFS/ME' this is eroded so much, the feelings can end up as being self-hate - when doctors, (literally) tell you NOT TO SPEAK.
And so you don't. What happens, if patients with severe immune disease - do not speak?
Mental distress, worsening of disability (through increased symptoms) and deaths (from failure to recognise other conditions associated with years or decades of high oxidative stress and inflammation). No deaths are OFFICIALY associated with 'CFS/ME', and so 'No one has ever died from Chronic Fatigue Syndrome'. Very clever.
Just 1 person (Sophia Mirza) has been recognised as officially dying of 'CFS' and a handful of other cases not published in the media. Lynn Gilderdale's body was never correctly autopsied, and her brain was sent to where Simon Wessely works. (How, useful for biological research into ME to send it to someone in denial of the disease).
Unlike in the United States, in ER the drunks get your place in the queue, along with the IV drug users and the man who just beat up his wife and wants his broken wrist looked at - because of NHS ER prioritisation against anyone with 'CFS/ME'. Someone with severe ME CFS, comes LAST in the queue. Someone able to walk, stand up and joke and laugh - goes hours before you to see a nurse, who only if they decide - to you then get sent further in, to see a doctor. So if a nurse believes your 'CFS/ME' is a lie, you aren’t even able to see a doctor in ER. (Unless with extreme tachycardia/hypertension/shortness of breath etc). Pain would be, and is routinely ignored.
''How is 'pain' an emergency'', they scoff at the person at the wits end with the label 'CFS/ME'? Yet allow others through to ER with Lupus. They get respect, understanding and a hand full of steroids. Ask any specialist in CFS & ME, and they will tell you all patients have pain, and many, severe pain. Yet in the UK - no one knows. It's all CBT - Exercise - or go away therapy.
Remember, the NHS medical service is universal, free for all - anyone can get treated, and the guy's broken wrist is a bit more serious than your mild 'tachycardia' of 120 and 'chest pain' that they've seen far worse examples of. Poor little CFS patient, boo hoo hoo. This is the reality. Remember, you cannot complain, there is no alternative, and there is no re-dress.
So you better behave and be grateful for this, OK?
So you go back to your doctor and tell them. They tell you to keep on track, you have 5 mins consultation time and there are 'lots of people to see today'. So your bad experience, whether it happens 1 time, or 1,000 times - is ignored. You tell them anyway, and they tell you to not go back to ER, and to see a psychiatrist. These comments appear in your ER medical records, via a phone call to the ER telling the ER head of staff to block you- that you are agreeing to see a psychiatrist, or go for 'CBT' for your 'Chronic Fatigue'.
Community doctor access (other than psychiatry) now blocked.
ER access (blocked unless severe emergency) via head of ER.
So what do you do, and how would you cope after 10, 15, 25 years of never seeing a soul?
The next time you go to ER, your ECG leads are physically pulled off your chest, and you are told to go home. You refuse and accused of 'creating a scene' - by politely and undramatically telling this person this is way out of order and you need help. The ever present security guard starts approaching as you're lying on a stretcher unable to sit up, so you back off - (temporarily forgetting to always show you're grateful for this 'free' health care service).
There is another ER you could go to if you could travel, but it's 32 miles away and you're housebound. What do you do? Private medical insurance doesn't exist in the UK for chronic disease, and there are no private ER's. Even if you did go, you aren't local. All of their advice can be ignored, and as ever they say 'Go see your local GP' (Desk doctor). Who doesn't talk to you anymore in a friendly manner, as do their partners in the clinic because according to rumour you're a trouble maker with 'CFS/ME', and now in writing too.
You persist in this 'behaviour', and soon strange things start happening, like the doctor refusing to even come out of their office to talk to you. What do you do? Go to another doctor? How will you drive (or be driven) there with cardiac complaints, highly stressed and unable to travel without throwing up?
Make a complaint? Ok then.
The hospital trust soon informs you they discriminate against no one and you are lying. You order your medical record to prepare a legal challenge - and the night that doctor told you to go home, and removed your ECG monitoring, all records have been 'lost' by the state. What do you?
Go to a newspaper? If you do, what happens next time you go the state ER? The only ER?
By now, all the staff know you. Some despise you so much, they won't even reply when you say ''hello''. How do you remove the comments? The comments are the property of the state, not you.
These comments are not yours. You are, officially, (and legally) a liar - because you had the name 'CFS' written next to you.
Eventually you collapse anyway, and develop an acute heart condition. You then end up (ironically) through the double doors in ER and have an oxygen mask slapped on your face, and IV in your arm and lots of doctor's peering over you puzzled why you're having convulsions yet are wide awake and STILL polite, and STILL submissive. Only now, do you wake up emotionally - when your body is trying to kill you, to save you another 5 years of being a medical pariah. But you fight, and somehow you live.
You then get transferred 'upstairs' to the ward, and to your horror you recognise some of the staff from ER, the ones who never talked to you. They are now responsible for you care, now you are so ill you cannot wash or feed yourself. Eventually, you agree you must be insane, and are locked away for the summer to teach you a lesson in thinking someone would care. One day, you escape - but return fearing what might happen and being unable to sit up, even in a wheelchair. You write a theory of your own, trying to explain to them what is wrong - they take it, never return it, and keep it as 'evidence' you are so crazy you even have time do devise your own medical theories on your illness, instead of using the exercise bike in the corner of the room - 'that the other patient's used quite happily'. The other patients have psychotic history, are brain damanged beyone recognition, or tied to the bed.
And so the submissive behaviour returns, to protect your life. You must do what they will say, no complaints, and be grateful their idiotic behaviour nearly killed you, literally, last night. You tell your Fiance your a useless person and she must leave you. Eventually she does. You don't bother seeing the doctor anymore, unless in extremely rare circumtances.
Officially you are 'doing better', and these obesssions with a physical cause have abated - proving the benefical nature of brain washing and CBT, even in severe cases. For the state, everybody wins. For you, you lose everything - other than your mind.
Now if this happens in the United States en mass, I highly doubt. It doesn't happen in the UK en mass either, because people in the UK soon learn, not to rock the boat and commit suicide long before it gets this bad. Or some manage to keep going and don't protest, and just stay at home and rot away and never, ever get on the wrong side of the NHS, as then you are black listed.
Is this legal in the United States?
How can someone be black listed on the basis of a rumour that CFS and Simon Wessley's 'Viral Attribution' (reflects) Somatization Par Excellance''. They do it to you, as you (the hated patient) becomes nothing more than the slave of the master's words - therefore you become a self fulfilling prophecy of this theory, despite resisting it at all costs. What a genius he is, and others who follow the yellow brick road.
On the basis of made up fairy tales about your personal history, causing you to develop 'CFS', you had the ultimate experience of what hatred does in a medical setting. You felt it, on a deeply personal level, as did your family, whose lives are equally ruined by watching the suffering of the child they cared and remain caring for, until their last breath.
Now what if these tales of 'childhood trauma' and 'school phobia’, are then used as FACT against you, when you get desperately ill again? Can you REALLY detain someone in an Asylum in the United States with no evidence of mental illness?
You can if you have CFS/ME in the UK.
Can you REALLY detain someone with CFS in the UK in an Asylum after they nearly die, from these 'rumours'? As a form of punishment? And this is ordered by colleagues of the very people who help design state 'guidelines' on CFS? People who you read called you disgusting, or neurotic?
You betcha.
And so UK 'CFS/ME' patients who are severely affected are rarely online, or very careful to not 'tell tale tit'.
They (sadly) come to adore the restaurant that sells them the cold pasta on a dirty plate. They smile and thank the waiter who spills the water on their lap (on purpose) - because by not doing so, they'd starve.
Socialised medical care for a politicised disease - is an absolute, guaranteed death trap for people who (through the process of progressive disease, or misfortune, poverty, loneliness, disablity) are told they ARE something because WE (big brother) said so.
Americans, thank god - have rights. You can arm yourself, protest and are protected by the constitution.
Conversely, medical fascism against severe CFS/ME patients in the UK is very real, because unless you do what they say, you are (at best) ignored, and at worse 'set up', and castigated until (hopefully) you die.
This is the plan.
Why else, how else could this be legal? Why else, how else are there threads supporting or questioning people in the UK's experiences by mysterious people who just happen to 'turn up' to defend the indefencible?
My mother has CFS. We never told anyone, she gets a totally normal service, equal, fair, and zero discrimination. That says it all.
CFS, CFS/ME, ME are the worst names that ever happened in the history of illness labels, and in the UK, you may as well be in Nazi Germany. Why?
*Because then you prepare, expect and tolerate discrimination as part of the 'system' - and accept it.
*The prejudice is encouraged as a way to make patients 'snap out' of their illness beliefs.
*It is sanctioned, by guidelines as evidence based and good for patients.
*No one cares on an official or legal level about your human rights.
And worse of all, there is no escape, no alternative.
Embrace, or perish.
Lastly, your sorry little tale of personal misery, is not private. Everyone you see, knows.
This is a good idea (outside of 'CFS/ME') and designed to protect patients, but not good if you want your bad experiences to be kept private, so not to jeopardise people who aren't yet against you - in the hope someone may listen to you - and not read nonsense on a page infront of them.
If you have 'CFS/ME'. The NHS make it their business to kill your future. CCTV medicine, CCTV politics.
And thus to quote Wessely & McClure ''There is no XMRV, at least in the UK''
&
''We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation"
And so, in my experience and others severely affected - then yes, the UK is a worse than America when managing and treating ME and CFS.
And we are waiting for the Americans to show us the way, show us how to do things properly, as Nanny Mc NHS (Showing in 3D in all good psyche wards this summer) - got too big for her britches, and put the village in lock-down for way too long.
Remove the label 'CFS' and you are free. However, you cannot erase your medical records, ever.
So the lie, as the truth - is engraved into your memory, and your psyche - forever.
Was it really worth getting all THAT - for free?
Or is it best paying for the choice, not to involuntarily ruin your life by trusting people in the medical service - who only had your worst interests at heart due to a master plan you didn't sign up to?
I'm with the Wild West
The state runs the health care system - the Department of Health - therefore they 'educate' doctors you are mentally ill - by refusing doctor training. CFS/ME does not exist on the medical training syllabus in the UK, and that is a FACT. Your invisible illness therefore is literally - invisible - on a medical level.
There is no one to complain to. There is no 'competition' advertising a better option, as there is no competition. In 2009, guidelines on 'CFS/ME' were issued by NICE (National Institute for Clinical Excellence) - which largely describe 'CFS/ME' still as mystery fatigue disorder. NICE are effectively an 'arms length body' of the Department of Health. They are there to 'legitimize' decision making on public health policy, mostly to defend blocking spending on life saver cancer drugs etc. This is done by statements by 'NICE' - justifying their decisions as being proven by medical research, clinical evidence. Any informed individual, soon learns that NICE, is simply a 'spin' machine for the government.
NICE, ended up 'getting hold of' CFS/ME and decided regarding CFS/ME.........
Checking for Virus & Bacterial infections prohibited.
Checking for Dysautonomia prohibited by using a TILT test, preventing neurological diagnosis.
Same goes for brain scan imaging techniques.
Giving B12, unless anaemic - prohibited.
Ditto on all Immunological drugs that help ME CFS patients.
*All above were always prohibited in reality, just never officially.
So when someone in the UK hears about tales of 'travelling to see Dr Peterson', or 'my trial of Ampligen' - we slobber and salivate like a hound desperate to join in with the game of 'catch'.
The concept (to us) we are allowed to see doctors, (other than a desk doctor prohibited in treating you) - is a dream concept.
This is possible through the state denying 5,000 research papers on CFS & ME, and sticking to 'evidence based' treatments which the Department of Health state as: CBT & Graded Exercise.
All provided by Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder, and Esther Crawley and others - who all happen to believe 'CFS/ME', 'ME' and 'CFS' are a form of somatization order, and caused by faulty illness beliefs.
These people are very useful for a socialised medical system, as they drive down costs, and prevent bio-medical research taking place. No alternative view point is allowed, funded, or published by the UK Department of Health.
For patients who are told they have 'CFS/ME' this is the end of debate in your doctor's office. You have no choice. You cannot go elsewhere, as alternative medical systems do not exist - literally.
Benefit of UK socialised medical system *turbo charged Obama care* outside the 'CFS/ME' label:
Universal ('free' at the point of use) socialised medical system is run by the state in the UK.
No contributions in tax? You still get the same service! Great for unemployed/disabled/illegal immigrants/criminals and 'health tourists' (get a free operation and leave the UK) - everyone gets the same.
Disadvantage - Now massively over subscribed due to immigration/population growth and people living longer. Long waiting lists. Prioritised medical referral. (Only the most sick get a relative rapid appointment). If you are not sick (and labelled with CFS/ME) expect at minimum 6 months - 12 months to see a specialist doctor, or wait for a test. E.g. Breast Scan with no 'evidence' of breast cancer, because your suspected breast cancer is now considered to be 'in your mind'.
Ditto same for brain tumour, heart failure, and even suicidal thoughts.
This would be illegal in the United States, and there would be legal consequences for a failed doctor, if harm were to come to the 'CFS/ME' patient for blocking, not believing, or slow referring a patient ON PURPOSE. (Private medical systems in the United States are aware of potential loss to brand image, and loss in profits from multi million dollar law suits. Private medical systems are thus careful what they do to patients.). What though, if there was only one brand?
In the UK, you cannot 'sue' any hospital; you can attempt to take the 'trust' (who look after multiple hospitals) to court. This is, in effect, impossible because no doctor is employed by the Department of Health as doctors (legally), they are 'guests'. Making them immune to direct prosecution. You take on the trust (a huge powerful network of multiple hospitals and 100's of doctors). 100s' of doctors Vs you the complainant. A non case, a non starter.
The idea any NHS Doctor, or Nurse can 'go to jail' for gross incompetence in the UK, is absurd to suggest. (Unlike in the United States). Knowing this, what do you think happens when a patient labeled with 'CFS/ME' begs people, warns people verbally or in writing that their discrimination or prejudice is endangering life? They, the bored, disinterested, over-worked doctor literally, can walk off as you are talking. They can and do. Can you walk to catch up with them? What if you do?
They ignore you and keep walking. Game over sunshine.
If someone walks off, how do you complain? If you are viewed insane by the state, what happens? Now compare this to when you pay $500 for an appointment by credit card in the United States. You expect a service. You deserve one as you paid for it.
If you are an American and reading this, imagine this scenario:
You go into a restaurant, you pay $500 for meal. This is the United States health care system.
In the UK, you go into a restaurant, and you are left to eat a meal pre-prepared. As it is 'free' you had better not complain about the taste of the food, that it's cold. Because it's free you should feel grateful. Right?
However, after your third visit, you decide to complain. The attitude of the waiter is to tell you 'everyone else didn't complain', or to imply through language (or body language) you should be grateful for what is put in front of you. In other words, there is an insidious over bearing sense of?
Submissiveness mixed with this sense of reduced entitlement, as the entitlement is questioned as you have 'CFS/ME'. (This leads to failure to report bad service, and failure to ACT on bad service). This is OK in a restaurant. This is potentially lethal in a health care system.
In the UK, when nurses inject people with the wrong medication and kill people through not reading labels, nothing happens. At the most, (the very most) the nurse is removed from their duty. Usually this is not the case, the trust defends the nurse and the hospital trust 'apologises'. Doctors do far worse than nurses, and they are not dismissed, they are defended - especially if harming you in the name of 'Science' due to a theory they read on Google linking to a BMJ article by Wessely that exercise is the best thing to use. So exercise you must. (Remember to be grateful for this appointment, you are grateful aren't you?).
The idea that American doctors and nurses go around (grossly incompetent) killing patients and simply say 'sorry' (through their employers) and aren't even taken to court by the family of the fallen relative - to an American, is largely ridiculous. As an American you pay for your service, the service fails - you get compensation.
Again, you will never get compensation in the UK for 'CFS/ME' as this service you got, you have this feeling of getting a 'free lunch' every single time you set foot in the hospital, in your doctor's office, and in the emergency room, where (as a 'CFS/ME) patient you are institutionally not believed.
100% not believed. You claim to have ''brain inflammation huh''? I didn't know Chronic Fatigue caused that - they reply. Smiling and yawning. They repeat some research from Trudie Chalder on overcoming your 'fear' or exercise, and you leave the doctor's office, without another appointment.
This, is how people (literally) end up not going to the doctor. How can you be severely chronically ill and NOT go to the doctor? Well from the examples I give above, you can see. Do patients really not go and see a specialist for 10, 15 years? Yes.
Am I seriously telling you, I and others with 'CFS/ME' go to a desk doctor, and they won't take: Blood pressure, pulse, or maybe listen to your chest - EVER? The entire time you meet them? Yes.
Am I seriously telling you, I and others with 'CFS/ME' get so sick we can't even leave the house and maybe once a year we get a house visit? Yes. (Most GP surgeries now refuse non emergency home visits). And you tell them you are so out of breath you can't walk up the stairs and they do nothing? Yes. No referral to a cardiologist? Yes. No tests? No.
How? Because 'CFS/ME' patients are somatizing attention seeking tired people who mostly all recover within 2 years. Remember? Ohh.
So what would you do if you were American? Go to an ER and refuse to leave until someone speaks to you, listens to you? At the best, you are told to go back to your doctor or this is an ER, not a doctor’s office to discuss matters with. This is a place for seriously ill people, not for people with 'Chronic Fatigue Syndrome'.
You can cry and scream all you like. You can sit there for 48hrs, lay on the floor. Nothing will happen, as the state labeled you as an attention seeker, as mentally ill - and this was backed up by 'evidence based research' that any doctor or nurse can access in ER on a PC - when you insist your illness is real. The state NHS website does not say your disease is very serious, it says it's called 'Chronic long term tiredness'. And thus you become the hysteric of ER, by default. Nowhere is there information on cardiac chest pain, and shortness of breath and what to do, and nothing about being 'allowed' to refer. Even if by some wonderful chance, you get a suggestion of referral and then discharged from ER back home - the desk doctor can (and will) block you referral to a specialist.
(In the UK, you cannot go to a specialist direct - you must be referred first by a desk doctor) who mostly thinks you are mad. Will you get refered? No. For someone with 'CFS/ME' this is exceptionally bad news, as it's to the desk doctor's discretion (untrained in what they think is 'Chronic Fatigue') to allow the medical practice funding to refer you, and then the trust you get refered to can refuse you - the patient.
Again, if this was all paid for via insurance and credit card - you would be allowed to see a doctor, rather than see a desk doctor who won't even take vital signs, or even agree to enter into 'discussion' about your 'beliefs on Chronic Fatigue Syndrome'. Discussing physical symptoms, is suggested as counter-productive by Wessely and friends - and so they don't do it.
In all other areas of sane medicine, discussing symptoms with a doctor is vital to understand the complaint the patient has, hence on an ER sheet in hospital it says 'Attending Symptoms', this is not the same as 'Diagnosis' - having reviewed you personally.
The 'CFS/ME' patient in the UK, is thus encouraged at all levels to be silenced - and this is advised and recommended as beneficial - by Psychiatrists we all know and love.
The psychological effect on the 'CFS/ME' patient, is to complain less, or not at all. (Hiding physical nature of the disease), and to feel hopeless and feel less worthy. No one feels worthy in the NHS - due to the 'free lunch' analogy I used above. Yet with 'CFS/ME' this is eroded so much, the feelings can end up as being self-hate - when doctors, (literally) tell you NOT TO SPEAK.
And so you don't. What happens, if patients with severe immune disease - do not speak?
Mental distress, worsening of disability (through increased symptoms) and deaths (from failure to recognise other conditions associated with years or decades of high oxidative stress and inflammation). No deaths are OFFICIALY associated with 'CFS/ME', and so 'No one has ever died from Chronic Fatigue Syndrome'. Very clever.
Just 1 person (Sophia Mirza) has been recognised as officially dying of 'CFS' and a handful of other cases not published in the media. Lynn Gilderdale's body was never correctly autopsied, and her brain was sent to where Simon Wessely works. (How, useful for biological research into ME to send it to someone in denial of the disease).
Unlike in the United States, in ER the drunks get your place in the queue, along with the IV drug users and the man who just beat up his wife and wants his broken wrist looked at - because of NHS ER prioritisation against anyone with 'CFS/ME'. Someone with severe ME CFS, comes LAST in the queue. Someone able to walk, stand up and joke and laugh - goes hours before you to see a nurse, who only if they decide - to you then get sent further in, to see a doctor. So if a nurse believes your 'CFS/ME' is a lie, you aren’t even able to see a doctor in ER. (Unless with extreme tachycardia/hypertension/shortness of breath etc). Pain would be, and is routinely ignored.
''How is 'pain' an emergency'', they scoff at the person at the wits end with the label 'CFS/ME'? Yet allow others through to ER with Lupus. They get respect, understanding and a hand full of steroids. Ask any specialist in CFS & ME, and they will tell you all patients have pain, and many, severe pain. Yet in the UK - no one knows. It's all CBT - Exercise - or go away therapy.
Remember, the NHS medical service is universal, free for all - anyone can get treated, and the guy's broken wrist is a bit more serious than your mild 'tachycardia' of 120 and 'chest pain' that they've seen far worse examples of. Poor little CFS patient, boo hoo hoo. This is the reality. Remember, you cannot complain, there is no alternative, and there is no re-dress.
So you better behave and be grateful for this, OK?
So you go back to your doctor and tell them. They tell you to keep on track, you have 5 mins consultation time and there are 'lots of people to see today'. So your bad experience, whether it happens 1 time, or 1,000 times - is ignored. You tell them anyway, and they tell you to not go back to ER, and to see a psychiatrist. These comments appear in your ER medical records, via a phone call to the ER telling the ER head of staff to block you- that you are agreeing to see a psychiatrist, or go for 'CBT' for your 'Chronic Fatigue'.
Community doctor access (other than psychiatry) now blocked.
ER access (blocked unless severe emergency) via head of ER.
So what do you do, and how would you cope after 10, 15, 25 years of never seeing a soul?
The next time you go to ER, your ECG leads are physically pulled off your chest, and you are told to go home. You refuse and accused of 'creating a scene' - by politely and undramatically telling this person this is way out of order and you need help. The ever present security guard starts approaching as you're lying on a stretcher unable to sit up, so you back off - (temporarily forgetting to always show you're grateful for this 'free' health care service).
There is another ER you could go to if you could travel, but it's 32 miles away and you're housebound. What do you do? Private medical insurance doesn't exist in the UK for chronic disease, and there are no private ER's. Even if you did go, you aren't local. All of their advice can be ignored, and as ever they say 'Go see your local GP' (Desk doctor). Who doesn't talk to you anymore in a friendly manner, as do their partners in the clinic because according to rumour you're a trouble maker with 'CFS/ME', and now in writing too.
You persist in this 'behaviour', and soon strange things start happening, like the doctor refusing to even come out of their office to talk to you. What do you do? Go to another doctor? How will you drive (or be driven) there with cardiac complaints, highly stressed and unable to travel without throwing up?
Make a complaint? Ok then.
The hospital trust soon informs you they discriminate against no one and you are lying. You order your medical record to prepare a legal challenge - and the night that doctor told you to go home, and removed your ECG monitoring, all records have been 'lost' by the state. What do you?
Go to a newspaper? If you do, what happens next time you go the state ER? The only ER?
By now, all the staff know you. Some despise you so much, they won't even reply when you say ''hello''. How do you remove the comments? The comments are the property of the state, not you.
These comments are not yours. You are, officially, (and legally) a liar - because you had the name 'CFS' written next to you.
Eventually you collapse anyway, and develop an acute heart condition. You then end up (ironically) through the double doors in ER and have an oxygen mask slapped on your face, and IV in your arm and lots of doctor's peering over you puzzled why you're having convulsions yet are wide awake and STILL polite, and STILL submissive. Only now, do you wake up emotionally - when your body is trying to kill you, to save you another 5 years of being a medical pariah. But you fight, and somehow you live.
You then get transferred 'upstairs' to the ward, and to your horror you recognise some of the staff from ER, the ones who never talked to you. They are now responsible for you care, now you are so ill you cannot wash or feed yourself. Eventually, you agree you must be insane, and are locked away for the summer to teach you a lesson in thinking someone would care. One day, you escape - but return fearing what might happen and being unable to sit up, even in a wheelchair. You write a theory of your own, trying to explain to them what is wrong - they take it, never return it, and keep it as 'evidence' you are so crazy you even have time do devise your own medical theories on your illness, instead of using the exercise bike in the corner of the room - 'that the other patient's used quite happily'. The other patients have psychotic history, are brain damanged beyone recognition, or tied to the bed.
And so the submissive behaviour returns, to protect your life. You must do what they will say, no complaints, and be grateful their idiotic behaviour nearly killed you, literally, last night. You tell your Fiance your a useless person and she must leave you. Eventually she does. You don't bother seeing the doctor anymore, unless in extremely rare circumtances.
Officially you are 'doing better', and these obesssions with a physical cause have abated - proving the benefical nature of brain washing and CBT, even in severe cases. For the state, everybody wins. For you, you lose everything - other than your mind.
Now if this happens in the United States en mass, I highly doubt. It doesn't happen in the UK en mass either, because people in the UK soon learn, not to rock the boat and commit suicide long before it gets this bad. Or some manage to keep going and don't protest, and just stay at home and rot away and never, ever get on the wrong side of the NHS, as then you are black listed.
Is this legal in the United States?
How can someone be black listed on the basis of a rumour that CFS and Simon Wessley's 'Viral Attribution' (reflects) Somatization Par Excellance''. They do it to you, as you (the hated patient) becomes nothing more than the slave of the master's words - therefore you become a self fulfilling prophecy of this theory, despite resisting it at all costs. What a genius he is, and others who follow the yellow brick road.
On the basis of made up fairy tales about your personal history, causing you to develop 'CFS', you had the ultimate experience of what hatred does in a medical setting. You felt it, on a deeply personal level, as did your family, whose lives are equally ruined by watching the suffering of the child they cared and remain caring for, until their last breath.
Now what if these tales of 'childhood trauma' and 'school phobia’, are then used as FACT against you, when you get desperately ill again? Can you REALLY detain someone in an Asylum in the United States with no evidence of mental illness?
You can if you have CFS/ME in the UK.
Can you REALLY detain someone with CFS in the UK in an Asylum after they nearly die, from these 'rumours'? As a form of punishment? And this is ordered by colleagues of the very people who help design state 'guidelines' on CFS? People who you read called you disgusting, or neurotic?
You betcha.
And so UK 'CFS/ME' patients who are severely affected are rarely online, or very careful to not 'tell tale tit'.
They (sadly) come to adore the restaurant that sells them the cold pasta on a dirty plate. They smile and thank the waiter who spills the water on their lap (on purpose) - because by not doing so, they'd starve.
Socialised medical care for a politicised disease - is an absolute, guaranteed death trap for people who (through the process of progressive disease, or misfortune, poverty, loneliness, disablity) are told they ARE something because WE (big brother) said so.
Americans, thank god - have rights. You can arm yourself, protest and are protected by the constitution.
Conversely, medical fascism against severe CFS/ME patients in the UK is very real, because unless you do what they say, you are (at best) ignored, and at worse 'set up', and castigated until (hopefully) you die.
This is the plan.
Why else, how else could this be legal? Why else, how else are there threads supporting or questioning people in the UK's experiences by mysterious people who just happen to 'turn up' to defend the indefencible?
My mother has CFS. We never told anyone, she gets a totally normal service, equal, fair, and zero discrimination. That says it all.
CFS, CFS/ME, ME are the worst names that ever happened in the history of illness labels, and in the UK, you may as well be in Nazi Germany. Why?
*Because then you prepare, expect and tolerate discrimination as part of the 'system' - and accept it.
*The prejudice is encouraged as a way to make patients 'snap out' of their illness beliefs.
*It is sanctioned, by guidelines as evidence based and good for patients.
*No one cares on an official or legal level about your human rights.
And worse of all, there is no escape, no alternative.
Embrace, or perish.
Lastly, your sorry little tale of personal misery, is not private. Everyone you see, knows.
This is a good idea (outside of 'CFS/ME') and designed to protect patients, but not good if you want your bad experiences to be kept private, so not to jeopardise people who aren't yet against you - in the hope someone may listen to you - and not read nonsense on a page infront of them.
If you have 'CFS/ME'. The NHS make it their business to kill your future. CCTV medicine, CCTV politics.
And thus to quote Wessely & McClure ''There is no XMRV, at least in the UK''
&
''We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation"
And so, in my experience and others severely affected - then yes, the UK is a worse than America when managing and treating ME and CFS.
And we are waiting for the Americans to show us the way, show us how to do things properly, as Nanny Mc NHS (Showing in 3D in all good psyche wards this summer) - got too big for her britches, and put the village in lock-down for way too long.
Remove the label 'CFS' and you are free. However, you cannot erase your medical records, ever.
So the lie, as the truth - is engraved into your memory, and your psyche - forever.
Was it really worth getting all THAT - for free?
Or is it best paying for the choice, not to involuntarily ruin your life by trusting people in the medical service - who only had your worst interests at heart due to a master plan you didn't sign up to?
I'm with the Wild West
