Letter addressed to the European Commission the 22th November 2006. The letter is slightly edited for spelling errors and other minor things since the original document.
The disease Myalgic Encephalomyelitis (ME) is discriminated in Swedish health and care system
I write because there are huge problems in all levels of care in Sweden with the knowledge about ME. I hope the European Union can do something in order to require that its member state (Sweden) does not disregard one disease systematically in the health and care system.
P.S. ME stands for Myalgic Encephalomyelitis and has WHO ICD-10 code G93.3. Chronic Fatigue Syndrome (CFS) is synonymous for ME.
Situation for people that suffer from ME in Sweden
I live in Sweden and I have discovered that almost no doctor knows about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). This causes people that has acquired this devastating disease to go around with a disease that impacts their life in a profound manner for years without knowing what causes them to be handicapped. They might want to find out what it is in order to understand what has happened. Some people do aggravate their ME disease during this time because they do not know what it is and because the doctor does not know what it is. Some doctors might prescribe antidepressant medication, but this might cause the patient to get an aggravation of ME because of the toxic load (many ME patients do not tolerate alcohol, chemicals and medication well) and because ME may aggravate from stress. If the inset of antidepressant causes the patient to have anxiety for a few days so the body is in a state of emergency and the ME patient can not sleep for 72 hours, then it is likely the ME disease will aggravate permanently.
Many patients are disbelieved about their disease. Many patients are classified as hysteric, hypochondriac, psychosomatic, tired from not being at work, depressed, phobic, anxious or with a personality disorder. ME is also confused with burn-out.
Patients in Sweden try to make their doctor read "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (Carruthers et al, ISBN 0-7890-2207-9, year 2003, ), but doctors refuse to learn anything about the disease. So patients end up to try to treat themselves. The doctors do not know anything about why they should be careful with medication. The doctors do not know how to interpret patients symptom descriptions. As they know nothing about the characteristics of ME, they interpret things as psychological. So the patients quickly learns to be very careful when explaining things, because things can very easily be interpreted in the wrong way by a person without any knowledge about the ME symptom complex.
For example doctors may say: "Now, the summer comes and then there is more light so things will feel better". This is probably relevant to a depressed person, but for an ME person it might be the opposite! Many ME patients are intolerant to heat or cold! So the summer with high temperatures, may very well be unbearable to an ME person. If you tell the doctors that you sleep all the time because of the antidepressant medication, they do not react. They simply think you are still depressed and need stronger medication. But in fact many (most) ME patients are intolerant to medication and have to be monitored very carefully when giving medication so they do not have their ME symptoms getting worse.
Some patients get problems with social insurance coverage, because the doctors do simply not know enough about ME. Many doctors say they have not found anything wrong so the patients can go back to work. Some patients end up without social insurance coverage and have to go to sign up as searching for a job and in order to get unemployment aid.
Doctors do violate ME patients when they do not believe in that the patient is severely disabled by the patients disease. It is a form of violation to be disbelieved. I think a person normally feel dishonoured when somebody disbelieves him. Instead of giving a person with ME credit for doing such a good job in struggling with her disease, doctors do violate patients by for example saying: "I think you are only tired because you do not work any more. I will end your sick leave so you will come back on your feet again." It would be a great progress if the doctors would instead support the patients in order to keep the ME patients self esteem high in spite of a severely disabling illness.
The history could be very long for how ME patients have been treated by medical care. I do believe that some people that do not know they have ME, and get treated in a maladapted manner may commit suicide. If a doctor says "there is nothing wrong with you. You have only become so tired because you do not work any more", a person with ME may believe in it and feel totally worthless because he has "sunken so deep". The patient may feel it is all his fault he has sunken so deep - he let himself to get pulled down and he did not fight back enough. He may feel he is not able to struggle back to come to the surface again. He accuses himself for it. He get depressed. He get anxiety because he "realizes" he has dug his own pit. This can really happen. It happens all the time according to contacts with ME patients I have had. The story changes in details from person from person. But it is basically always the same.
It is quite common for ME persons to be left by their partners. Of course, who would like to be with someone that is not well enough to entertain a normal relation. Without energy to speak at times. Bedridden most of the time. Unable to care for the most basic household duties as cleaning, making food and buy food. In some cases ME persons even are disbelieved by their family (parents, brothers and sisters). Very sad stories exist where persons have been disbelieved by the medical care and in addition has been excluded by their family. If one add on top on this that a person does not have knowledge about what kind of disease she is suffering from, one has a very bad cocktail. A person unable to care for oneself due to the disabilities from ME excluded from any help or support, and in addition accused from all sides to be lingering. In fact the person may end up believe herself that she is worthless, because she does not understand she is in fact struck by a severe illness.
Here in Sweden the medical care is to a very high degree in hands of the state (public). There exist no public unit for diagnosis and care of ME patients. All there is, is a private clinic in Gothenburg that make diagnosis and research on a vaccine treatment on ME patients. They do not take patients from the whole country for care. Not even the capital, Stockholm, has a unit for ME patients.
In Sweden the medical system must have primary care doctors that know enough of ME so they may suspect ME when they have a patient with typical ME symptoms. We also need ME specialists at regional level (landsting). ME patients can not travel very far.
I think it is a human right to have a medical system that does not exclude any disease from when performing diagnosis. Any patient attending a medical unit expects that he is evaluated for all possible diseases when going to a doctor. He does not expect that some disease is excluded. In Sweden this is a fact. The medical system systematically exclude ME as a possible candidate as diagnosis, but the patients are not informed about this. People with several years of post exertional fatigue, should of course have ME as an alternative when making a diagnosis! In fact, ME should be considered much earlier if one would like to increase the probability to get the patient to return to health, to decrease the risk of aggravation and to decrease human suffering. By understanding the disease the patient is able to make self-help strategies. If the doctor knows it can be ME, he can avoid treatments that may aggravate the disease.
Can European Commission do anything to improve the situation?
Is it allowed for member countries of the European Union to systematically disregard some diseases when performing diagnosis and when organizing care? Can over 4000 medical research articles about ME be ignored when organizing the medical care for the Swedish people?
I would wish that the Swedish medical system to have ME in mind when doctors perform a diagnosis. This means that:
Further I wish that the medical system to work together to be able to perform an early diagnosis. ME should be suspected after at the most 3 months after onset and be confirmed after 6 moths.
ME also strikes children. For children the time for diagnosis can be set shorter. The medical services at school and teachers should be aware of ME. They should also be aware of the special characteristics of ME among children. Usually ME expresses itself a bit differently in children.
Is it possible for the European Union to recommend their member states to use for example the Canadian diagnosis criterion for ME?
Wishes from the Swedish health system (landsting)
It is of primordial importance to diagnose ME early, because it is the most important way to reduce a life long invalidity. Patients with ME stay alive for decades, but with so limited abilities that they are more like dead.
I would like this to happen in the Swedish health system:
A PDF-document that contains the Canadian consensus document: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols", Carruthers et al, ISBN 0-7890-2207-9, year 2003:
From the internet site , which is primarily in Swedish language, a lot of links to information about ME in English language can be found.
RED laboratories in Belgium performs the RNase L test and the screening test FASTest for ME:
Ref. 1 Länksamling:
Ref. 2 Kanadas koncensusrapport: I "Journal of Chronic Fatigue Syndrome" finns: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (Carruthers et al, ISBN 0-7890-2207-9, år 2003). ( )
Ref. 3 Södra Australiens handledning: "ME/CFS Guidelines - Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) - Management Guidelines for General Practitioners" (ISBN 0 7308 9334 0, år 2004). ( )
Ref. 4 Bok: Pedriatric Chronic Fatigue Syndrome, Kenny De Meirleir et al, 2006/2007, The Haworth Press ( ).
Ref. 5 Bok: Chronic Fatigue Syndrome - A Biological Approach, Patrick Englebienne et al, 2002, CRC Press ( ) , ISBN 0-8493-1046-6.
Ref. 6 Bok: Enteroviral and toxin mediated myalgic encephalomyelitis/chronic fatigue syndrome and other organ pathologies, John Richardson, 2001, Haworth Medical Press, ISBN 0-7890-1127.