EMECC Clinician's Work in Treating ME Patient in Fanø Could Cause Others to Reassess Treatment of ME

A recent article in the Danish newspaper Ugeavisen mentioned the work of Dr Jesper Mehlsen - co-chair of the European ME Resarch Group (EMERG) and European ME Clinicians Council (EMECC).

It concerned the case of one severely ill ME patient who had been under the supervision of the Fanø Municipality.

The article suggests that the treatment of the patient by Dr Mehlsen has eased the burden on the parents of their daughter and may provide reason for other Danish municipalties to learn something from this case.

Fanø Municipality has acknowledged inadequate case processing, insufficient support for the family and has apologised for the fact that the municipal treatement and approach to the family has been characterised by too much control and too little trust from the municipality.

"There is a great realisation that Fanø Municipality has come to. The municipality has corrected the biggest mistake it has made. Now it can concentrate on helping instead of concentrating on controlling. It will be a great relief for both the family and their sick daughter. She has long been stressed and felt guilty about the pressure and workload her parents have lived with. They had to take care of her, and they had to fight with the municipality, health authorities and who else has been involved in their case" said Dr Mehlsen.

For more than a year, Dr Mehlsen had been treating the 30-year-old ME patient Marie Louise Ilsøe Gustavussen in Fanø. Marie Louise is not recovered but is feeling better than she has for a long time.
Dr Mehlsen is sure that Fanø municipality's latest move is very good for the sick woman.

Dr Mehlsen believes that this development in the Fanø case could be an example for similar cases in other municipalities in Denmark.

It is estimated that around 14,000 Danes suffer from ME.

Of those, between 400 and 500 are just as badly affected as Marie Louise and usually just as badly treated by the responsible municipality, according to Dr Mehlsen.

The estimate of 14,000 ME patients in Denmark is based on an actual study, that showed that almost 40,000 Swedes are affected by ME.
Converted to Danish conditions, this corresponds to around 14,000 Danes.

Dr Mehlsen, who runs an ME clinic, is currently treating 470 patients.
About 20 of them are in the worst affected group which, like Marie Louise Ilsøe Gustavussen, is dependent on constant help around the clock.

"It is a task for which the sick and their families need more help than they currently receive. That is why the development on Fanø is so important.
I hope that other municipalities will look at Fanø Municipality, and I also hope that Fanø Municipality itself will make an effort to learn from themselves and inspire others based on the experiences that this ME case has given and the decision that has now been taken" says Dr Mehlsen.

Dr Mehlsen, who works in Copenhagen doctor, is probably the doctor in Denmark who has seen and knows the most ME patients.
He thinks that the situation looks brighter for them now than it did just a year or two ago.

" Something is happening both in the municipalities and in the health service, which is to the benefit of the ME patients who are not hardest hit. They meet more understanding and better deals. It is going in the right direction.
But for the very sickest, such as Marie Louise, the Danish healthcare system does not yet have an actual offer", said Dr Mehlsen.

"In those cases, you must do as Fanø Municipality now does:
Ensure that the family, who take care of the sick, have the framework, aids and the care assistance that makes it possible to cope without the relatives having to put everything else aside".


Through his clinic in Copenhagen, Dr Mehlsen has contact with around 470 ME patients.
Two medical students are working on a study of their situation.
The number of patients is so high that the study is being met with great professional interest.
In Denmark, there is a need for more documented knowledge about ME patients and their disease.