Sean Says: Are you seriously suggesting that patients in the USA are having a wonderful time? You been paying any attention to the horror stories coming out of the USA, including how difficult the insurance companies are making it for ME/CFS patients?
No. There is no effective treatment. A wonderful time is impossible. A small proportion of ME/CFS patients in America get good health care, and most get zero, none. I understand that. Yet.........USA is the Mercedes Benz of health care for ME/CFS. ME/CFS patients fantasise of coming to America over the last two decades, to see: Dr's.........Cheney/Lapp/Peterson/Lerner/Klimas/Montoya/Bell/ etc. Failing that, there are some excellent hospitals, which for $$$$ accept patients with ME/CFS for testing and diagnostic services. These places do not exist at all in Europe, despite Europe having a much bigger population than the USA.
People in the USA are not locked in psychiatric wards with CFS unless they are proven mentally ill, in the UK they are, even if a ME/CFS patient is proven FIRST to have a heart condition or nervous system damage and no sign of mental illness, if you are bed ridden and you get inside the system, in you go...... People in the UK can be pulled out of the beds by the police and locked away, even when they have no evidence of depression if a psychiatrist says so, again due to the belief in the UK CFS/ME is a 'faulty illness belief'. There is child abuse in the UK. So yes I am seriously suggesting America gets the best deal in the WORLD for ME/CFS health care, it does. FACT. Rules do not exist for ME/CFS Someone wants to refuse to come to your aid in hospital, then they will. Who will believe you?
This may shock if you get crap health care (if any), but I think you don't understand that outside the USA, ME/CFS is a political disease where patients as well as their families can be threatened to keep their mouths shut if you tell people you will go the newspapers and expose the hospital or medical staff for abuse. In the USA you have rights, its part of your constitution. In UK and Europe and the 'state' healthcare, you have no rights. Americans can sue people, can sue doctors and take them to court. You cannot take anyone to court in a socialised medical system, no doctor is officially employed by the hospital. They have legal immunity and are 'guests'. FACT. If you persist and tell them you're gonna report them anyway, they 'lose' your medical file as to remove proof you were ever there, or they make you the patient, a guest!!!! Yes a guest of the hospital, not a patient. How about that?
If the state kill you (ME/CFS) or not, the best your family get is an apology. It is exceptionally rare anyone can win damages and prove their case due to corruption. In Eastern European countries, bribary is common place for basic medical provison such as an anesthetic at the dentist, and pain medications in hospital. There you put money in the nurses pocket and you might get a lignocaine injection if you're lucky. In these countries, ME/CFS does not 'exist' - literally. So you won't even get a label to go with the neglect.
Compare this to 'Ampligen' in America and the ease of obtaining anti viral medications. Sure 200 people may have got it in total (I have no idea how many), but 200 is better than none. Americans have private health care (if they can afford it). ME/CFS patients have a choice to try medications in the USA, and get access to pain drugs. (
These are illegal in the UK and in parts of Europe). 2009 UK NICE guidelines on CFS/ME forbid the use of antiviral drugs even!!!. LOL. Doctors are paid NOT to refer anyone (ME/CFS or not) into hospitals and are given financial incentives by the UK NHS not to, this is a FACT. Imagine going to a hospital in America with a virus and the doctor says, I can't treat your infection it's illegal. LOL!! Welcome to the UK.
Private health care does not cover ANY chronic disease in the UK. These people go home and rot. (MS, Parkinson's etc). Yet for ME/CFS people it is psychiatric ward and possible death, or nothing. The most safe way to stay alive in the UK with bed ridden ME/CFS is to never get into a hospital, that is a sure fire way to get locked up. It's best to stay out and get your (double annual visit) to the out patients department. So you may have breast pain, or a bleeding bottom, or convulsions, or acute episodic shortness of breath attacks but you will NOT get sent to a specialist and you will not get transfered from ER to a hospital bed, but sent home (unless the admitting problem is very dangerous). Once you are out of danger, you are STILL sent home! No doctor, no referal for the next plan of management. Rules state ME/CFS patients MUST be treated in the community by a desk doctor (who cannot treat you) and not a hospital doctor. LOL!!! Seriously. They have to ask for a referal to allow you permission (for example) to get an ECG in a cardio department. Doctors in Canada can do the ECG there and then in the doctors office, as they can in America.
You may have a dreadful life with your illness, and this is unfortunate and I am sorry if you suffer. If for one second you think that the average American with severe CFS thinks they could cope in the UK for one week with severe ME/CFS, try again. Severe ME/CFS patients in America are on 15, 20+ tablets a day to try and stay alive, they may have to sell their home, dog and ex-husband to get there, but they can and often do (not always), but often. They have a doctor they can call if paying a monthly fee for this service , and a doctor who can administer morphine and other powerful drugs. Here there is 911 and an on-call doctor service at night that phones you back if it's an emergency. The problem is, we have a chronic neuro disease.
In the UK, you are not allowed to see a doctor, if your GP (desk doctor) says so. You are aware of this? I'll say it again. Once a person (who is told ME/CFS is a psychological disease) can stop you from going to a hospital, this is it. No tests, no cancer screening, no heart check ups, no asthma tests. NOTHING. As previously stated, there is no private medical health care for chronic disease (any disease!), so even the rich suffer too. Many Americans who are educated/fortunate/hard working and blessed with health, work their butts off to pay ridiculously high insurance premium.
What if these insurance premiums were prevented for any disease in America?! They are in the UK. So you have to go do your CBT brainwashing and 'prove' you aren't psychotic or do nothing. That's if you are very very lucky and get into a 'CFS/ME' specialist centre, a re-branded psych 'rehabilitation' programme. The treatment: CBT, Occupational Therapy, keeping an activity diary, graduated activity and anti depressants.
There are 8 state funded beds for ME/CFS in the UK for 250,000 patients. There are no private beds. America is a palace of opportunity for the rich and the priviledged for sure, but for those with money, there is choice. Every single world ME specialist (except Kenny De Meirleir in Belgium) is American. And they are American for a reason because of the legal ability of these doctors to be allowed to treat patients.
In Europe it is illegal to 'treat' ME/CFS patients in the state health care system for biological problems known to be found in the illness, unless the state allow it, As Naturally, as CFS/ME is called a biopsychosocial disorder by the state, no treatment for biological problems are allowed. Dr Sarah Myhill (supporter of ME/CFS patients in the UK) has had her right to practice as a doctor (MD) taken away, for the crime of..................(drum roll) giving ME/CFS patients vitamin B12 injections. God knows what they'd have done to her if she'd thought of Valcyte.
It is better to have no money to pay for health care, than to go to a 'free' health care system sit in a doctor's office for 'free' and be told you cannot have basic medical health care, because you are insane. Or to have angina and have a medic laugh at you and walk off, knowing they will NEVER get caught. That my friend, is worse. On top of that, no humans rights and therefore when things go wrong, no one is sued and no one is stopped. If someone wants to threaten to kill you in a hospital they do it, you are not believed as you have 'CFS/ME' a mental illness according to the UK state. Back over in America, someone does that and as you paying $1,000 per night, per room you have some respect and you have some power for you bucks spent.
America remains the cream of the crop, the absolute best option for ME/CFS treatment in the world. Everyone envy's Americans and their Nancy Klimas and WPI. Yes 0.00000001% of people may get to see her, but she exists, she is real, she is allowed to see people, and she isn't stopped by attempting to help people with ME/CFS. Outside America, thinks aren't quite the same even if they are already very bad in the USA which I fully understand. I also understand from reading this forum, a significant number of Americans are getting medications to help cope, which are banned outside the USA due to state corruption and total control of the politicised illness label ME and CFS.
You get a bad deal, we get a worse deal. I am totally in agreement Americans do not get wonderful treatment for ME/CFS, they get none as the state do not provide a bean. Only by paying very high insurance, or having the cash are some Americans able to access private specialists.
This thread is about Dr De Meirleir in Europe. He is a maverick who follows the American model of health care. He is also threatened and trashed by people like Van De Meer and his fellow medics who hate him for sticking up for people. REDLABS, (thanks to the Americans at the WP/VIPDX) now has the XMRV culture test. No one knows though, as MULV FDA paper wasn't allowed to be published in the British press.
It would be funny if it wasn't so tragic.
