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Discrimination against ME/ex-ME sufferers

Sat, 22/11/2008 - 2:38pm — Kathleen

I was diagnosed with ME in 1992 and in 2000, after years of trying different approaches, I had a breakthrough. I was always a hyperactive person so was devastated when I became unwell. Unfortunately when recovering I felt I needed to make up for lost time, not missing a minute of life and this has seen my body take a battering. Although my energy is back, I still have weird things happen to me and have spent much time in and out of hospital with things that were initially misdiagnosed because of doctors’ prejudices. In history taking they hear you have had chronic fatigue and automatically categorise you as “depressed”, refusing to run tests.

Since 2000 I have been misdiagnosed 5 times, being told I simply needed to see a psychologist, diagnoses all later proven wrong. The latest incident was when I lost control of my right hand. A rheumatologist at Concord Hospital dismissed me. He said there was no need to run tests because chronic fatigue patients always get weird things wrong with them but there is never actually anything wrong. He advised me along with another doctor to use my arm more and ignore pain. I did this until losing control of my left arm. The wrong advice caused more damage to my arms and I ended up requiring extensive nerve surgery to both arms which may eventually cost me my job.

I lodged a complaint with the Health Care Complaints Commission, but the Medical Board set the bar high, so unless a doctor kills a patient they are not interested. If a doctor was to discriminate against you because of your nationality you could take legal action, however doctors are allowed to repeatedly discriminate against someone based on them having an illness they are too narrow minded and sceptical to acknowledge.

You hear much in the media about how, if you get chest pains, notice changes in skin, find a lump in your breast etc. you should seek immediate medical advice , what a joke! Personally, I will be very hesitant to ever set foot inside a doctor’s room again – what is the point when they are so arrogant.

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Sun, 23/11/2008 - 7:41pm — Rachael

That really sucks, I

That really sucks, I understand your frustration with the medical profession its so rare that a doctor actually LISTENS to what a patient is telling them, and I hate that look they give you when you mention the words chronic fatigue syndrome. Like you said - you're then labelled either depressed, or you're put into the 'too hard basket' because we just have too many 'weird things'.

Having said that I can understand the doctors frustrations too - having someone turn up in their office, all tests coming back fine, but still sick, I imagine they'd be a bit of a loss as to what to do next, so I guess they do what they've been taught - just give out antidepressants.

At the end of the day there are thousands of diseases out there, they can't possibly diagnose everyone correctly and they can't spend weeks or months researching every single case that walks through their door. They're only human and they make mistakes just like we do.

But I can't wait for the day when they start teaching LISTENING SKILLS 101 at med school.

x rachael

Mon, 24/11/2008 - 4:45pm — Kathleen

Rachael Only problem is on

Rachael

Only problem is on every occasion I was misdiagnosed not one test had been run and I presented with very obvious symptoms. On each occasion it was said it is a waste of time running tests on ME patients as they simply have nothing wrong with them. If I am willing to pay for the test then tests should be run, especially when on each occasion they were very very wrong. It is not hard for a doctor when presenting yourselves to them unable to use your arms to run a simple ultrasound, which in my case identified a severe problem.

I would suggest as well as LISTENING SKILLS 101, they should go back to basics and become doctors not for the money or prestige but rather because they want to help people. The only reason I recovered from my ME was because the GP who was treating me had had it herself, proving the old saying, that before you can empathise with someone, first you have to have walked in their shoes.

Wed, 26/11/2008 - 6:07pm — DJ

I can certainly understand

I can certainly understand your frustration. It's horrible that doctors are so discriminatory. I'm sorry to hear of your experiences.

How do you take up a case as it does appear to be a discrimination issue that should be covered by anti discrimination law either under HREOC or the Anti Discrimination Board of NSW. It may be worth outlining the situation via email to HREOC for advice.

Fri, 28/11/2008 - 5:22pm — Kathleen

DJI will be writing to the

DJ
I will be writing to the my local member regarding my experiences. Yeh, they probably won't do anything but one has to stand up for their rights in the hope the same does not happen to others. The way the medical profession treat patients is absolutely disgusting and in itself can cause psychological damage. I am in the process of preparing something which I intend submitting to A Current Affairs or some such similar program. One of the doctors was stupid enough to put in writing his belief that CFS patient have nothing wrong with them, and this letter accidentally fell into my hands. As I am now well and trully over my CFS I have the energy to pursue this and intend to do so until something is achieved. I might even arrange some sort of petition from members to submit as proof that bad experiences with ill informed doctors is an epidemic that must be stopped.

Thu, 04/12/2008 - 6:50am — DJ

I agree the attitude can

I agree the attitude can cause real problems for the patient. After a while of not being believed many patients hate doctors and find it difficult to be polite and less likely to trust their judgement given past bad experiences and refusals to attend to things.

That is a good idea to write to your local member and other ideas as well.

The latest CFS-ME newsletter also recommends that if we are unhappy with any doctor we should be writing a polite letter of disatisfication so that they know they haven't treated or cured us and stop them from treating other patients so poorly. I've got a couple of letters I'm going to write to past doctors myself from that idea.

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