ME sufferer

Carer of severely-affected person with ME           since Nov 2003

The story of Birgitte - wife of Leiv.

Birgitte contracted a virus on Nov 2003 .   She was diagnosed as having ME by Professor Dr. Harald Nyland Jan 2005.

Birgitte was hospitalized in January 2004 (in the main hospital in our city) to be ”scrutinized” by the following departments:

  • Medical

  • Neurological

  • Immunological

In February 2004 Birgitte was diagnosed as having VIROSE  by the head doctor. Her own doctor thinks it could be Myalgic Encephalomyelitis as does the main hospital's head doctor.  He calls it Post Viral Fatigue Syndrome.  

Birgitte is left in a corridor at the hospital as no tests turn out medically positive (neither do the tests which have been sent to another hospital in Trondheim). She is sent back home, but becomes even more ill and is finally sent to the psychiatric ward of the same hospital in June 2004.  Here they diagnose her with KONVERTION Neurosis, but she refuses compulsory training and electroshock treatment as she knows that she isn’t suffering from any psychological disease and has this also documented by the diagnosis of the doctors previously.

At this point some external doctors (experts) were contacted. All of these are of the opinion that it is ME and one produces a specialist declaration which is sent to the main hospital.

Birgitte is put into the nursing home in August 2004.  The head nurse receives a treatment manual for seriously sick ME patients (written by the Norwegian ME organization) and promises to follow this.  At this point in time Birgitte was able to sit in a wheel chair, could use the toilet and could move her arms and legs. 

However,  she is put under conditions of extreme stress in the nursing home.  Due to a total lack of knowledge and competence of this illness the nurses and the nursing home doctor still think she has a psychiatric illness.  The treatment manual from the Norwegian ME organisation is, therefore, not being used and the patient is getting more and more ill. 

The leaders of the nursing home say it is the patient's own fault and that she is manipulating the situation. The patient says she cannot tolerate noise and light (something very common for ME sufferers). She has to fight, explain,  manage, and several nurses are unfriendly and rough.

A formal complaint is sent to the county chief medical doctor. She puts up a case against the hospital's psychiatric department  and the nursing home. What then happens is that doctors and management give their comments to the case. The chief MD does not investigate the clinical conditions even if the patients experience totally differs from the statements from doctors and management. 

Another letter is sent to the chief MD, but so far no answer has been received.

A new complaint is made, now to the Patient Ombudsman of the county.  The ombudsman says there is nothing he can do as the case already has been to the chief MD.

Birgitte’s GP calls and says she feels incapable and no longer competent and no longer wishes to be Birgitte’s doctor. The problem is that Birgitte won’t take enough painkillers. If she had done then she could have taken the treatment from the nurses.  Besides, a GP cannot intervene in the nursing situation.  It is not allowed by the law.

Today Birgitte is nursed by about 8 nurses.  Three or four of these are able to take care of her and her condition is better when they are on duty. The other nurses make mistakes and do things wrongly. This results in Birgitte deteriorating again, resulting in more symptoms and bodily low function (which now is almost zero) and she gets symptoms storms (all ME symptoms, but severe. She is feeling really sick).

The local health authority and the management of the nursing home say they ”are doing the best they can”.

In the letter to the chief MD an individual plan was asked for (this is a patients legal right)  coupled with a competent nursing and evaluation system. 

This is not even considered; only daily KARDEX notes about the patients condition and what the nurses have done i.e. no critical evaluation of the nursing, only critical comments about the patient and her perceptions.

This is a totally unworthy situation for a patient to be in and the situation must immediately be changed to a situation of competent nursing and follow-up system.

In January 2005 the patient got the ME diagnosis from the neurologist Harald Nyland when he visited her at the nursing home.

Despite all of this the management still think that the patient is to blame for her deterioration and current situation and she is treated accordingly.