Prof Kenny De Meirleir ME/CFS approach
Prof. De Meirleir (KDM) has the following approach to diagnosing and treating ME/CFS:
First, the patient meets KDM at either his practice in Belgium(visiting it is described in an article "The De Meirleir Experience"), or any of the locations he visits to meet patients(currently Norway, Sweden and Australia). Here, he physically examines but most of all, interviews his patients.
Tip: Be prepared. KDM is a calm person and will not stress you, but even the first meeting, which is longer(up to an hour), might feel short and you would not want to miss out on anything. So before the meeting, write down your symptoms, and when you got them. The history of your illness is important. Those with severe cognitive problems are helped by writing a short presentation about their symptoms and history and send them to him in good time before the first consultation, and perhaps, but not for sure, will he find time to read through it. It can also be of great benefit to record the conversation during the consultation and listen to it afterwards.
If your symptoms match the ME/CFS definition, you will likely get a diagnosis immediately. It might be worth noting though, that in some countries a foreign doctors diagnosis is not a very convincing one.
KDM tests extensively to exclude reasons for your symptoms. What is being tested depends on your symptoms, but can include:
- Immune function
- Intestinal function
- Viral infections
- Bacterial infections
- Food intolerances
and numerous others.
What tests are performed depends on what information has been gathered up until and during the examination.
Final diagnosis may take a while, 1-2 months, since many of the tests takes a long time to complete, and there might be a queue at the testing facility. Mostly he uses tests from labs in Belgium and USA, but other labs can be used as well to keep the costs down for the patient. For example, if a local(subsidized) lab can reliably perform any of the tests needed, this could be used as well.
Hopefully, by this time, the cause of the symptoms has been isolated and you meet again.
After final diagnosis, a treatment plan is made, detailing everything from diet to medication. KDM:s treatment is usually threefold:
Involves addressing the origins of symptoms.
- Modifying diets to accommodate food malabsorbtion and intolerances.
Assisting dysfunctional body systems.
- Support the immune system
- Reduce oxidative stress
- Improve gastrointestinal function
- Restore acid/base balance
- Oxygen therapy
Targeting identified core problems.
- Treat infections
- Normalize bowel flora using different trimesters of treatment.
It important to remember that he is a Belgian doctor, and therefore prescribes medication in use there. This might very well not match what is available in your country. However, he works with pharmacies in Belgium and other suppliers that can send you the medication. This also applies to needles and syringes.
After the beginning of treatments, you will meet KDM approximately once every three month to follow up and adjust the treatment.
It is a good thing to be prepared for the costs involved.
Meeting KDM himself is not very expensive given his status, he gets his paycheck from the University so even meeting him outside Belgium is affordable. Only Travel, lodging, and the Himmunitas administration needs to covered. So meeting him in, for example, Sweden, doesn't cost more than 150€(however, the first meeting, being a bit longer, is at 250 €).
But the really expensive parts are:
- Medication : Medicines are expensive, especially things like 4ME(~300€/month including shipping), but also some probiotics are also expensive. Antibiotics aren't. For some reason.
- Testing : Expect 1500-2000€ for testing costs, these are highly specialized tests. However, there will not be that much more testing done after that so it is something of a one-off cost.
So it is important to try to get Financial support from your local government.