MEと併存疾患と除外診断

With the patients we see, other conditions with similar symptoms have usually already been excluded. For instance, a malfunctioning thyroid (hypothyroidism) or a thyroid that works too hard (hyperthyroidism) ; the adrenal disorder Addison’s disease; Cushing’s syndrome, when too much cortisol is produced; Lyme disease caused by bacteria called Borrelia; rheumatoid arthritis, diabetes and other autoimmune disorders.

Sometimes there’s a discussion whether or not it could be MS, multiple sclerosis. Because for some ME patients, the difference between a diagnosis of MS and of ME is really small. Sometimes ME patients have minor brain lesions, identified through brain research or an MRI brain scan. But usually these are too small and their location doesn’t correspond with MS. On the other hand, 25% of the ME patients also have an elevated protein level in the spinal cord fluid, which can lead to the discussion as to whether or not it is in fact MS. But really ambiguous cases of MS form an exclusion diagnosis.

In total we have listed about twenty conditions in the ICC which form exclusion criteria for ME. This is of course not exhaustive.

In future, it is likely that a number of those exclusion criteria will be included as a co-morbidity, as a condition that can be the result of, or which may occur simultaneously with this complex condition. At the moment, I can’t give a definitive answer on this, but it concerns only those cases with similar symptoms. And those with a clearly different biological picture, specific to those conditions, which have nothing in common with ME will be definitely considered as exclusion criteria.

What things can best be tested for first?

I believe that neither a computer nor a general consultation can replace a physician. The clinical picture of the people we see varies tremendously. It depends on whether the disease is in an advanced stage, or if the condition is in its first six months. These are totally different clinical pictures. The approach, in addition to the classic clinical investigations and the asking of questions, the history – what happened in the years prior to the disease – is very important. And the family history. As well as what kind of toxic exposure there might have been. A global anamnesis is of great importance here.

Next, very specific investigations into the possible mechanisms of the dysfunction of the different organs must be performed. A broad screening is desirable to establish what is playing an important role in the disease persisting. Actually we look at a number of vicious circles within the different mechanisms. We try to break through them with the existing resources, so that they are neutralised. That’s the best we can do today, because it’s a chronic disease.

I don’t think that the aim is to cure every single ME patient, but our aim should be a good quality of life for every ME patient. To get as many people as possible who want it, back into the labour process and back to work. And to give a normal life back to all the young people who haven’t yet suffered irreversible consequences from this disease, and to let them forget they ever had ME.

Is ME contagious?

I think we will be able to say more about this in 2013. Today we can only talk about published, not about unpublished research. But we do suspect that a subgroup of patients can be contagious, in certain circumstances. In general it’s assumed that patients aren’t contagious. Just a few governments have decreed that ME patients are not allowed to give blood. There are five, I believe, including Belgium, the Netherlands, Canada and Australia. Most countries still haven’t taken a stand on this.

In the coming months I expect that this subject will be discussed in more detail, because we are also looking for infections, infectious proteins. I expect more light to be shed on this in the coming months. But overall it’s not true to say that every ME patient is definitely contagious.