by Gurli Bagnall 27 July, 2006

Audrey Adcock (Co-cure 7/27/06)  gives a positive opinion on the ME clinics and urges all to give them a chance  - to regard our mugs as being half full rather than half empty.

It reminded me of a letter to the editor recently published in The Press (Christchurch, New Zealand) in which a doctor commented on an article regarding medical error.  He felt it was most unfair that little credit was given for the progress already made towards safer procedures and treatments.

The trouble with this argument is, that the statistics do not bear it out. In fact, according to hospital statistics alone, medical error is the largest and most serious epidemic the world has ever known.

Members of the public who fall within those statistics have been crying out for changes to the system for  decades.  I believe the cry started to be heard internationally in the 1960s and with the subsequent widespread use of PCs, the voice is getting louder all the time.

The author of the letter to The Press used the same reasoning we hear repeatedly: If we blame and allocate shame to those in the medical profession who kill, maim and dispense disease, everyone will be too scared to speak out and no progress will be made.

The question is, how long much longer do we have to wait for a safe health service?  Having already waited for roughly 50 years, should we let things carry on to another nice, tidy round figure -  say, 100 years?  It seems to me that many in the health services place less value on lives than they do on their personal possessions.  Who amongst them would put up with shoddy mechanical, electrical, plumbing etc services before suing for damages?

Due to medical "error", there is already an army of people who have grown to old age without knowing for even one day, what a normal life is like. Typically, if they complain, they are ignored, told they are depressed, or are informed with enthusiasm that great strides are being made to control medical  error and the patient must just be a patient patient! In short, "Stop complaining!"

And what about ME? What about clinics that are set up supposedly for ME, but which in reality, are for psychological and psychiatric therapy only? What about the specific attributes required by staff members as set out in the recruitment literature?  What about the continued eroding of patients'health due to the never ending misdiagnoses?

Ms. Adcock states that due to the experience gained as a mother of a child suffering from ME: "I can reckon to know as much about the medical and political aspects as most, especially those whose interest is more recent, and I am deeply saddened and frustrated that just as we have a foot in thepolitical door - yes, I mean the Clinics - protests and grumbles threaten to have this door slammed shut. Do you think we shall be offered anything else?"

The personal experience of others is that the door has already been slammed. It was slammed shut to ME sufferers even before the clinics opened.  Genuine ME sufferers were never offered anything.

Ms. Adcock advises that:  "Only through the Clinic will the staff come face to face with pwme - this has been a hidden illness for too long. I foresee a steep learning curve for these new Teams. They will realise that reality is different from rumours. we must encourage everyone to get themselves referred to their Clinic - to demonstrate just how many pwme there are. And especially the severely  affected. Domiciliary visits are mandatory. Never mind who does the visiting in the first instance, this will have a profound effect, and numbers count."

The reality which Ms. Adcock, despite her experience, seems not to realize, is that the severely affected, very often can't even keep appointments with their GPs. I personally have had to cancel appointments because I have been too sick to even have a home visit.  As for that learning curve, time and time again, from politicians to nurse aides, the learning curves presented to them in the form of indisputable evidence was, and continues to be, ignored.

The balance of power too, is against people with poorly understood conditions such as ME. The only power a patient has, is his voice.  That is, if he is not too weak to use it.   On the other hand, psychiatrists have the power to incarcerate us in mental institutions if we speak too loudly.

Details of a recent case may be seen at:

Co-cure:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0607c&L=co-cure&T=0&X=74DEFD36847404998D&Y=URSULA%40xtra.co.nz&P=1370

Victim's account:   http://www.lyme-rage.info/elena/statejun06.html

"There is still a long way to go,"  says Ms.  Adcock,  "but cooperation will gain more than confrontation or shrill protests which appear somewhat hysterical. Have faith. Seize this  opportunity."

In the meantime, people are dying.  See Co-cure:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0607c&L=co-cure&T=0&6847404998D&Y=URSULA%40xtra.co.nz&P=2919

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0607c&L=co-cure&T=0&X=74DEFD36847404998D&Y=URSULA%40xtra.co.nz&P=3071

What life saving strategies do the clinics have?  How do the Clinics deal with heart failure or any organ failure for that matter?  How many will die of such failures, or cancers or despair -induced suicides while undergoing a course of Cognitive Behavioural Therapy and psychotropic drugs?  In whom should we have faith?

"Seize this opportunity," Ms. Adcock urges. What opportunity? From my hospital-type bed and motorized wheel chair,  I don't see the new clinics presenting any opportunity at all.

Rather than castigate a group of seriously ill people for being "shrill" and "hysterical", it would have been more appropriate if Ms. Adcock had praised them for their courage.

Gurli Bagnall
Patients' Rights Campaigner
Marlborough
New Zealand