BREAKING  THE  SILENCE.
By
Gurli Bagnall

“You only have power over people as long as you
don’t take everything away from them.
But when you’ve robbed  a man of everything, he’s no longer
in your power  - he’s free again.”

Alexander Solzhenistyn
 
26 January, 2008

The subject of  Dr. Rosamund Vallings’ recent award has been in the headlines lately and no doubt she has helped many suffering from chronic fatigue or chronic fatigue syndrome as found in mental disorders.  
  
Her own preference for the use of the terms CFS  and “encephalopathy”  suggests that this is so.    Myalgic encephalomyelitis, categorized by the WHO as a neurological disease, is another matter entirely.   
 
In the UK since the mid to late 1980s, the title of the condition went from ME to CFS to CF to CFS/ME and ME/CFS.  No wonder people are confused.  In this instance, confusion serves those who create it and the pharmaceutical industry well. Dr. John Greensmith commented that: “The next sleight is to make M.E. disappear altogether by referring only to CFS…..”   
 
To say: “I suffer ME  -  not CFS!”  is difficult when relying upon the signature of an antagonistic doctor for the very right to exist.   But unless we do,  we will continue to suffer and die in this hell on earth that has quite deliberately, been created for us.
 
On 21 January, 2008, Marc-Alexander Fluks  drew our attention to yet  another article published (this time)  in the Eastern Courier on 16 January, 2008.  http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4357227a6497.html

The following quotes are revealing: “An interest in helping those with chronic fatigue syndrome has been a decades-long passion for Rosamund Vallings… Her interest in chronic fatigue syndrome/myalgic encephalopathy started in the 1970s …..” [During Dr. Vallings  time as medical adviser to the Associated New Zealand Myalgic Encephalomyelitis Society, the name changed to the Associated New Zealand  Myalgic Encephalopathy Society.   This denies the scientific findings of inflammation of the brain and spinal cord in M.E. Consider too, the fact that Myalgic Encephalomyelitis has an official neurological classification under the WHO International Classification of Diseases, while myalgic encephalopathy has no classification at all leaving the field wide open to psychiatric maneuvering.]
 
“A lot of research being done is leading to exciting new approaches to treatment, she says…” [The  only “exciting” research that has been on the UK government’s agenda for many years, revolves around psychiatric therapies: cognitive behavioural therapy (CBT), graduated exercise therapy (GET) and psychotropic drugs.  In regard to the latter,  complaints about the dangers to which patients are subjected has sky-rocketed during the last couple of years, and the number of doctors who have become whistleblowers has increased dramatically.  A brief overview can be seen on:
http://youtube.com/watch?v=U2Sd73DQ2J0 ]
 
It leaves little doubt about the area in which Dr. Vallings  works.   How much of the precious funding available to ANZMES is being used on M.E. as defined by the ICD, and how much is being wasted on conditions that do not belong to this organization?
 
While still a member of ANZMES, I became concerned not only about the quality of the information supplied, but also the source of that information.   It was presented in a patronizing manner  -  in kindergarten terms   -    and was not helpful to those suffering ME.
 
On inquiring, I found that much of the material came directly from one of the major charities in the UK -  a charity that has been the centre of considerable controversy for a number of years because of its leaning towards the psychiatric model.
 
Professor John Campbell Murdoch, ex University of Otago, took over a practice in a small country town here in NZ a few years ago.  His particular interest is in ME and he is known in international circles for his work in that field.  
 
In 2005,  he commented on TV1 that victims of ME in New Zealand tended to go underground.  They rely as far as possible he said, on alternative therapies rather than medically prescribed treatments.  The interviewer  responded that this was surely an indictment against his profession and Professor Murdoch did not disagree.   

Clearly I was not the only person who had resigned her ANZMES membership.

At an international level, most of us face the same medical prejudices and attitudes. Practical help with such things as hospital beds and other equipment,  housework and shopping,  can be obtained here in New Zealand,  but sometimes only at a very high personal cost.  The applicant often  faces a long bitter battle to obtain the help that is legally his/hers.
 
When applying for a hospital bed in the earlier years  of my illness, the Accident Compensation Corporation informed me that I was to be interviewed by a CFS specialist who would assess my need for such equipment.   On the morning of the assessment,  I received a copy of an internal memo;  it had been faxed to me anonymously from the local ACC office. It stated clearly that the main object of the assessment was to find my condition (CFS) greatly improved thereby giving the ACC the reason  needed to “disentitle the claimant”.  It stated that a telephone conversation between a medical adviser to the ACC and the “specialist” indicated that she would be happy to oblige.
 
The report resulting from  the interview I had with this “specialist”,  made several recommendations which if acted upon, would have been injurious to my health.  Apart from drugs I had already tried and reacted badly to, the following stays firmly etched in my mind:
 
(1)  The blood test carried out by Dr. Les Simpson at the University of Otago, while not a diagnostic test,  showed typical features found in M.E.  The “specialist” rejected it out of hand as worthless.  (Later,  Dr. Simpson confirmed in writing that he still received specimens from her to test.)
 
(2) The "specialist" recommended a treadmill and temperature test presenting it  as a definite diagnostic tool.  She  claimed that ME was present if there was a drop in temperature during an energetic  ten minutes run on the treadmill.   (I already knew of someone who had been put through this. He collapsed on the treadmill itself and suffered severe burns.)
 
I can only make a guess as to where this so-called test originated. The Wessely stable springs to mind.
 
(3) The “specialist”  recommended a  referral to the pain clinic which, at that time, was trying  experimental exercise (running up and down a long passage) as a means of pain control.
 
(4) The “specialist” took my temperature twice and it was low each time.  No mention of that was made in the report.
 
(5)  As for the bed, the “specialist” recommended that the request be rejected on the grounds that it would encourage me to lounge about.
 

* This report was not written by a person who was knowledgeable about and sympathetic to the disease,  Myalgic Encephalomyelitis.  
 
*  It highlighted the common trend to disregard the patient’s complaints  as subjective and totally without merit not to mention truth.  
 
*  It  demonstrated a total disregard for the medical history.    
 
*  Most damning of all, it showed no concern for the harm it would have inflicted upon me had I agreed to accept her “expert” recommendations.
 
*  I still  have all the documentation  -  including signed letters from the “specialist” herself  -  regarding this regrettable incident.  
 

It is sad comment that in other medical situations, negligence  is a chargeable offence but when it comes to ME, it is accepted as common practice.   
 
Finally, and as a  matter of interest, the signature at the bottom of the “specialist’s” report to the ACC, was R. Vallings.
 
 
Gurli Bagnall
URSULA@xtra.co.nz
26 January, 2008