Is the British treatment of 'CFS/ME' patients really worse than America?

[DysautonomiaXMRV]

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

 

[Robyn]

I find it horrific how patients are mistreated in the UK and other countries. It has only been in the last few years that I realized what was going on there. In America we may have been treated as nut cases but we do have the options to change doctors and try alternative treatments. The sickest here don't have as many options as those with healthcare which is not fair. I just can't believe that after the mistakes of the past with other conditions like MS and Parkinsons, where patients were treated with such horror, that history is repeating itself. I just cannot fathom how human beings can do this to other human beings. I also cannot stomach any organizations that try to make money off the msfortune of other human beings. They will have to live with themselves and one day will be accountable for their actions. It always comes back around.

 

[glenp]

Deplorable.

I cannot immagine how much worse it would be to be in the UK. TG I am in Canada and not the UK

glen

 

[Countrygirl]

Well done, Dys, for telling it as it is in most of the U.K.

At one point, I tried to make an official complaint on behalf of myself and others with ME at my previous GP practice. I was quite rudely and abruptly informed by the County's regulatory body that complaints from patients who had a diagnosis of ME were not accepted nor recorded on the instructions of their superiors. When I persisted, and made a second call the person who answered told me quite firmly that they were reliably informed that ME does not exist and no person who claimed to have it had the right to make any complaint. With that, the phone was slammed down on me. We have no choice, but to avoid doctors for most of the time, and certainly not to make any reference to our illness. Even if we develop other serious conditions, in my experience, they are largely dismissed and are not followed up.

 

[awol]

To add to glen's comment - interesting to note though that Canada is also a public health insurance system. There, I think the health authorities are far more open to the full range of research on ME/CFS. So I think that just blaming the system for the situation in the UK is not quite enough. Lack of competition does play some role, but more important seems to be specific biased decisions by specific policy makers.

 

[Mark]

I'm reminded of a conversation with my GP some years ago.

I had been through about 5 years of "bizarre" and "impossible" illness so far, and had wound up with a new GP at the end of it. I was at this point somewhat improved and a few of my symptoms seemed to be under control. I had been googling symptoms, and read about CFS, so I asked my doctor if he thought a diagnosis of ME/CFS might fit, because the list of symptoms on wikipedia sounded very similar.

He told me that a couple of years earlier, that would have been a possible diagnosis for me, but not now because I was a lot better than I used to be.

The part that sticks in my mind, though, is the way he looked at me darkly and warned me: "Trust me, that's not a diagnosis you want". He explained that if he diagnosed me CFS, all he could do was send me for CBT, so it was in my best interests that he didn't give me that diagnosis.

I think that says it all. When I read Countrygirl's post above, it makes me think how lucky I am that I was never diagnosed with anything (apart from MCS, which doesn't count of course because it can't be diagnosed by a mainstream doctor, because MCS doesn't exist in the UK, indeed its existence in the UK is even less real than ME/CFS, or indeed XMRV...). I still have a mysterious immune deficiency, a lot like ME/CFS, that compels me to live my life in a kind of virtual cage - but I am at least free to call it whatever I like, so I call it WTF.

My GP once told me: "I am at my wit's end. I don't know what else to do. I have run out of tests and talked to all my contacts and none of them could help. All I can offer you is CBT, I'm sorry."

He had also never heard of an "NK cell" - "Natural Killer" didn't help him out - nor had he heard of TH1/TH2 imbalance. He had never heard about any of the stuff we talk about here. He had - and has - no suggestions whatsoever as to what I might do. He's a nice chap though, the best doctor I've had yet, in that he doesn't lie to me or insult me.

My main advice to people with ME/CFS - or WTF - regarding the NHS, would be: Expect nothing, and prepare to be disappointed...

 

[Kati]

I regret to say that I live in Canada and have a very different experience so far than Glenp. In my case despite having chest pain for months, coughing for 5 months and shortness of breath, I am being recommended to take SSRI's by my family physicians of 9 years. My very first specialist appointment took 7 months before seeing her, and in the first 3 minutes of sitting in her posh office she announced she doesn't do CFS. I had to endure a GET program before being dropped for being too focused on my symptoms and not enough on the activities. All of the doctors I have seen including the infectious disease doctor refuse to test me for parvovirus and titers for EBV, CMV and HHV-6 and treat accordingly with anti-virals.

This is our lovely socialized health care system. Oh and by the way i am a nurse.

 

[Kati]

Mark, thank you for your explanation of your experience. I would strongly suggest we lobby for a name change to WTF.

 

[coxy]

Do you think that this is a fair indication of what it's like to have me/cfs in the uk now though as opposed to 10yrs ago or so?
I have had 1 bad experience of a general private doctor who obviously didn't believe in ME, and told me to go off and exercise for a couple of hours twice a week, that was before i was diagnosed by a neuro.
We have a great GP who certainly does believe in it and when my daughter was diagnosed several yrs ago, sent us to meet up with another teenager who he was looking after with ME/CFS to see if they could help us a bit. He referred us straight away for tests and although the NHS couldn't find anything wrong with her, he referred us on to a paeditrician who diagnosed her, then referred her on to a neuro for medication etc.
My son was referred to a paeditrician straight away and he diagnosed him & has looked after him ever since.
We have had MRI scans, ultrasounds upteen blood tests etc, noone has ever refused any treatment.
To be honest i feel embarrassed going to the GP as i feel as though they probably don't believe me mainly due to what i've read on the internet. I think we shouldn'y build up a general hate for doctors, as not all doctors are the same. That's my opinion anyway.

 

[Countrygirl]

Hello Coxy,

I'm glad that you have had some positive experiences with your doctors. Of course, there are some good GPs, who, while not understanding the illness, will do their best to support the patient. Sadly, however, although I am contacted by a large number of people with ME, I can't think of one. I am aware of a number who are very severely affected, who are never visited by a doctor, or, at best, are referred to a psychiatrist. A number are met with a hostile response from the medical profession and, basically, just abandoned by the system.

Are things better than they were some years ago? Up to about 1994 there were some signs of hope for an improvement in our medical treatment and we thought that common sense would prevail. I and a number of others, however, believe that the situation is worse than it was. If you are prepared to play the game, and accept being treated as a psychiatric patient and not challenge the system then you might be able to avoid the backlash from the medical profession. Accept the ME clinics with their psychiatric leads, and don't bother the GP with your illness. However, if you want relevant help or the medical support that is relevant then you hit a brick wall.

A little while ago, I had a call from a local GP who would not give me his name because he was afraid. He told me he was sure that he had developed ME but was very afraid that his colleagues would find out. He asked me if I could give him advice and information over the phone, as he did not want to risk any ME headed information being sent to him. His colleagues, he said, would ridicule him if they found out. He told me that he was too ill to continue working, so was going to apply for ill-health retirement. He said he would tell his partners that he had depression because that would be far preferable to admitting to having ME. So, no, I don't think the situation has improved overall, I'm sorry to say.
C.G.

 

[coxy]

I have never had a psychiatrist mentioned to any of us, i'm always amazed by the number of people that mention that.
I agree we are left to our own devices and very reliant on our own families to care for us, but when any new symptoms arise as they often do amongst the 3 of us, we are always treated in the same way we would of been prior the ME. We are given things to try and our doctors are very keen to learn off of us. Obviously that's not perfect, we would like a treatment that works, but until a cure is found there's not an awlful lot more they could do, for us anyway.
To be honest, any drug we've ever been given by doctors for various symptoms never seems to work anyway, so your left wondering why you bothered going in the first place!
We have been going back and forth recently & have just had to get the paeditician involved again in our daughters care due to the terrible nausea she's suffering from. GP's can't give out strong enough drugs to help her. The paeditrician is going to put her on the anti nausea pills they give to patients going through chemotherapy as soon as she's had her MRI scan tomorrow.

 

[Wonko]

thankyou DysautonomiaXMRV

 

[Mithriel]

I have had bad experiences with doctors, but I get painkillers, eye drops and diabetes treatment for free.

My heart aches when I read posts of people in the US saving up money to buy painkillers or the diabetes forums talking about how long you can make a blood testing lancet last.

There are good things and bad about both systems.

Mithriel

 

[Min]

thank you for telling the truth about the continued and horrific abuse we suffer here Dys.

 

[alex3619]

Hi DysautonomiaXMRV,

There are many people in the world watching what is happening in the UK. We are very worried, but also worried that other governments might try to emulate the Uk's example. I am in Australia, and for a while there it looked like we might follow the same path, but thankfully we don't seem to be on it at the moment. I do worry is that all it might take is a change in government for this to happen though. I have frequently said to my friends, some of whom live in the UK, that I regard the UK medical system to be one of the worst in the Western world.

I first became aware of the issues when, more than a decade ago, a child was taken from family and put into the Royal Brisbane Hospital and forced to exercise. The parents had "obviously" been mistreating the child, and exercise was the solution - that and removing the child from the family. The court case to save the child went nowhere, despite expert testimony from one of Australias leading experts at the time. This can happen anywhere - children with ME or CFS are still being taken from parents even in the USA.

Oh, and by the way, the child didn't improve with exercise, fancy that. Since then I have lost touch with the case, I suspect the family is in hiding so I have not made any enquiries either.

If healthy people were treated like us in the USA it would create a war zone, they wouldn't stand for it. In a disarmed, life-respecting and very sick population like us they know they can get away with it because we are non-violent and physically incapable of doing anything anyway. This is industrialized slavery all over again. Its as if we never learnt anything from the failures in the industrial revolution.

What they don't get is that one day there will be a cure or effective treatment, we will get better, and we will become political. Governments may fall, people may be prosecuted, institutions may be hit by class action lawsuits so large that their traditional defences will crumble. It is only a matter of time ... but I realize it may take longer than my lifetime. I strongly urge everyone in every democracy who has CFS or ME or any similar illness to vote along pro-CFS lines, and if in doubt about who to vote for keep throwing out the prevailing government until we get one that cares. If in doubt, vote against.

Bye
Alex

 

[Sing]

What a great description of an impossible, awful situation, Dys! I am awed by the completeness of your understanding, and I totally get it.

I felt in much the same position here in the US for many years, however. I couldn't afford much medical care for many of them--had no insurance because I wasn't able to work full time. And then the doctors didn't believe in my condition, symptoms, etc. either and wouldn't test or test appropriately and wouldn't refer me to speciailists. I was aghast at what I felt was their dishonesty and immoral treatment of me and so chose to go without seeing them completely. There were two spells of about 5 years each when I didn't go to a doctor at all! This was my holdout because of the dishonour in their treatment of me.

Then when I got into a managed care plan later, because I had insurance through a different part time job for a few years, I was still treated just as you describe about the NHS in the UK. The denial, brush off and aggressive rudeness, and 10 min appointments with only 5 in which the doctor or Nurse Practitioner made their a snap decision, and the other 5 for their note taking which was aimed to Cover Their Butt rather than accurately reflect my complaint. I know because I would get copies of my medical records--a right over here.

Now, however, I do have a state program of health insurance and a doctor who believes in ME/CFS--hooray!--but he doesn't know or order all the kinds of tests discussed here, because these aren't considered standard yet. When and if XMRV or anything else is officially accepted as causative or determinative in the diagnosis, I am sure he will order those tests for me. He does, however, help me by treating the worst symptoms with medications, which are typical ones we speak of here, so this is "So Far, So Good", but there is still a ways to go.

I need to get onto Social Security Disability, but absolutely dread the long fight involved in applying because the kind of hard data they require is just the kind I can hardly produce, given the years of medical denial and unhelpful reponses to my condition, plus my capitulation or avoidance.

This is why we need definitive tests.....all rests on those.

Sing

 

[maryb]

Dys you are so very spot on with everything you said. I haven't been to my GP for over 18months and I never mention CFS/ME.
I was admitted to hospital for the 3rd time in 3 weeks with what I know now to be activation of CMV/EBV, causing vestibular disturbance so bad I couldn't move my head without vomiting, I was sent there by an out of hrs GP who was worried I was getting de-hydrated after 2 days of not drinking, the doctor on the ward looked at me so coldly and said 'well you'll have to drink because we're not putting you on a drip, this is getting to be a regular occurrence, you are getting dependent on it'(attention I think she meant). I'm very lucky I know and thank my lucky stars for my situation, a couple of weeks later private testing showed the viruses had been active.
I hate the NHS with a vengeance, for all the people who can't go off to a private doctor who will take their illness seriously, I'm not a lot better but I know I would have been a lot worse without private interventions.
I don't envy the USA the decisions on this one, I've seen how the very poor can't even manage diabetes well, which in this country is a doddle, ME seems to be out on its own like here, but at least in america if you have insurance you may be lucky and get referred to one of the eminent doctors working with it. Who do we have here?

 

[dannybex]

Ditto

thankyou DysautonomiaXMRV

Yes, thank you Dysautonomia. I was thinking late last night of starting a thread asking precisely what kinds of tests are allowed over your way, and woke up to find your detailed post. The situation is indeed beyond deplorable. I truly wonder how these people can sleep at night and/or if at least some of them are at some level sickened by their own behaviour. I'm guessing that they are all forced to tow the line, so there must be some (as coxy suggested) that hate the system because they truly do want to help -- and then they read of Myhill's humiliation and know what can happen if they dare to challenge the system.

The public system in the US (Medicaid/Medicare) is definitely better than in the UK, but not by much. One typically is allowed a physical exam and the very basic blood panel -- which turns up "normal" -- and then they suggest a myriad of antidepressants, blah, blah, blah.

Sometimes they'll run more tests, like for vitamin d levels, ferritin levels, certain infections, and even parasites -- but, the laboratories they use, are not of high quality, not sensitive enough, so the tests will come back 'negative' or 'clean'. I once asked my doc if testing for Lyme would be covered (even knowing that the lab test wasn't the best) , and she replied "Well maybe...if it comes back positive."

Plus no MRI's unless one has had severe vision or maybe balance problems which haven't gone away despite months of drugs to suppress the symptoms.

Thanks again for posting this. I know it can never happen fast enough, but here's hoping things will change soon.

Dan

p.s. Love Mark's "WTF".

 

[dannybex]

I was sent there by an out of hrs GP who was worried I was getting de-hydrated after 2 days of not drinking, the doctor on the ward looked at me so coldly and said 'well you'll have to drink because we're not putting you on a drip, this is getting to be a regular occurrence, you are getting dependent on it'(attention I think she meant). I'm very lucky I know and thank my lucky stars for my situation, a couple of weeks later private testing showed the viruses had been active.

Okay...weird question, but why is it do you think that the UK doctors seem so patronizing and demeaning? Is it a 'class' thing? Do they act (in general) the same way towards patients with other illnesses?

Certainly there are many here like that as well (Dr. Yes's situation is a prime example) -- but it seems to be a lot more prevalent in the UK, not as much so in Canada...

 

[maryb]

The other weird thing is if you pay privately you get totally different treatment. Hand shakes and serious listening body language, plus whatever treatment they want to give.
In the NHS some docs don't even make eye contact with you especially on the wards where they will look at notes and talk to the nurses as if you weren't there. A lot of the nurses are so different though, they do care however.
Is it a class thing? I really don't know, maybe more of a 'god thing' with the docs,they just act so superior and disrespectful of their patients. The NHS is a VERY hierarchical entity.