Who Will Stand Up For ME?

I posted "Who Will Stand Up For ME?" at Blue Coffee Mug on 18 October 2007.

For healthy and able people to understand what the fuss is about, I need to do bit of explanation. I will do my best, but it may not enough for you. I can only try...

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All over the world, people living with ME/CFS are also living with poverty, prejudice, misunderstandings and all kind of hardship that ill person should not have. 25% of sufferers are categorised as "severer". They are house bound and bed ridden with sever symptoms, such as severe pain, organ problems, respiratory problems, seizures, paralysis, muscle weakness and name a few.

When the British NICE (National Institute for Health and Clinical Excellence) announced their intention of producing ME/CFS guidelines, we felt hope because government finally took us seriously. But we felt betrayed when the end results came out. Many of us were furious because not only it is misleading the nature of illness, but also it is recommending harmful GET (Graded Exercise Treatment), CBT (Cognitive Behaviour Therapy) as a legitimate treatment.

GET (Graded Exercise Treatment) - People who is legitimately suffering from ME/CFS cannot tolerate exercise. One of the reasons why severity of the illness progressed from mild/moderate to severe is the GET. It only cause further deterioration to health who suffer from legitimate ME/CFS. The damage caused by the exercise is often irreversible. Some could die as a result. Some of the research for exercise and ME/CFS have wrongly chosen samples, not ME/CFS sufferer but depression patients or just tired people. (Because they only focus on fatigue. And not using the right sample, the result was "exercise help ME/CFS".) There was a research being undertaken by Australian group who found abnormal chemical in ME/CFS sufferers blood who participated in exercise research. However, they have not proceeded with the research further because of luck of funding. They are still waiting for money. While they are waiting for money, little government funds for ME/CFS research are mainly used for psychological. (Please! Get real! There are enough research done to prove that ME/CFS is physical not psychological...) In another exercise research, about half ME/CFS patients could not complete the exercise due to severer ill effect, and the research ignored the drop out samples.

CBT (Cognitive Behaviour Therapy) - In other words, positive thinking. ME/CFS is a neurological disorder which end up with immune dysfunction, failure of organic function, endocrine dysfunction and more that affects every system in body that necessary for us to function and be healthy. How much positive do we need to beat such psychical illness? No matter how seriously the patient participated in the therapy, it is impossible to cure the illness. And it ended up blaming patients for not being positive enough, or patients feel guilty for failing despite the efforts they put in.

The other fact concerns in UK is that government uses ME/CFS as a dumping ground for "wastebasket" cases. Doctors just damp the difficult patients in this category where they are actually suffering from MS or rare form of cancer. Medical practitioners really need to proceed with further expensive and/or specialised tests to identify if it is a legitimate ME/CFS or other serious illness. I feel that scepticism forces ME/CFS patients to be diagnosed as mental illness in Australia. This only forces condition patients of serious physical illness to progress further and further.

One Click ME Appeal is going to legally challenge the government's wrong doing. I am hoping this will change the international trend of neglect, abuse and human rights violation towards people who are seriously ill with ME/CFS. Before they can actually go ahead with this challenge, they need to have £20,000 by 5 November 2007. (As at 16.57 pm UK local time, Monday 22 October 2007, the Fighting Fund total is now £6,204.) I'm hoping to reach to someone who is well off to contribute some fund towards could-be-history challenge.   

This is not only the problem for British ME/CFS sufferers, but also for international ME/CFS sufferers and their carers. If we accept the British NICE guideline for ME/CFS, which deliberately ignored and manipulated facts and legitimate medical research for political reasons, about 250,000 ME/CFS sufferers in Briton will only cause more damage to their health (possibly irreversible) and some will die from the treatment suggested.

Who can guarantee that other country will not import the NICE guideline which is convenient for government and insurance company and not care about ME/CFS sufferers?

Who will be interested in researching and fighting to find the cause of the illness, nature of the illness, efficient management and cure for ME/CFS if the government declares the manipulative guideline that only offer harmful exercise and positive thinking as a legitimate treatment?

Following is the post at my other blog.

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ME/CFS often classified as “wastebasket illness“. We all familiar with cold faces of doctors, nurses, community support groups, social security officers, families, friends, teachers and any human beings who come across to our lives. We cried with frustration and desperation in silence. We are begging for people to see the truth of suffering, struggle and loss of our active lives.

You would say, “But all chronically ill people are doing tough. And there are many illnesses don’t have cure, either.” I agree.

But please listen to ME.

Have they been denied the credibility of their illness? “You have something called cancer, but it is really all in your mind. All you need is a positive thinking and these tumours will disappear no time.” How do you feel if this is all you can hear from your doctor?

Have they been forced to medication or treatment that they are more than certain that will make condition worse? “You are suffering from diabetes. The symptoms you are experiencing are actually your imagination. Eat more sugar and you will be fine.” Would you go ahead and eat more sugar?

I also have asthma. Although there is no cure for asthma, there are proven and effective medication and management in place. Comparing to ME/CFS, dealing with asthma is negligible for me. (I am not ignoring the facts that asthma could kill. As long as I know what it is and take medications, I am okay.)

In England, they spend tax payers’ money to come up with the guideline of treating ME/CFS that only cause more harm and damage. During the process, government authorities deliberately ignored critical facts about ME/CFS. Naturally, all ME/CFS patients and their family, friends and carer are horrified. Their government came up with a guideline of TORTURE. I could imagine the horror of ME/CFS patient who has no choice but undertake harmful treatment knowing that his/her health will only deteriorate further as a result. This is an organised human rights violation.

I’m Australian, but I fear that our government might import the ME/CFS guideline of TORTURE, because it may convenient for them and will fulfil some political purpose. It’s really a shame because South Australian government introduced internationally acclaimed ME/CFS Guide for GPs, but other states are still ignoring this excellent and accurate guide. If the federal government has to pick a guideline, I’m worried that they would choose NICE (torture) over the acclaimed Guide for GPs.

What can we do?

That is another frustration, isn’t it? Despite of motivation, eagerness, or heart breaking agony to be heard, nobody really hear us. No human rights advocate group would come for rescue as they are too busy with other unfortunate human beings. We are too weak to stand up for ourselves and march on the street, or deliver flyers or make phone calls.

I read One Click ME Appeal at Simon Wessely I Know it All today. To be honest, I haven’t read all ‘One Click Appeal’ page yet. (I’m having trouble reading at the moment. And if I wait until I read everything, it may be too late…) I hope this may be the answer. Any of us can support the legal appeal against the torture guide (NICE guidelines). It doesn’t matter if you are not English citizen. Please show your support by clicking. This may be your chance as a ME/CFS sufferer, as a family and a carer of ME/CFS sufferer, as a friend of ME/CFS sufferer, or as a person who believes in human rights to do something.

If you are British citizen or resident, you can also support e-petition “ME is real“, which I noticed at ChronicallyME.