I received early in the afternoon an email from a European Parliamentarian, following an email she had received !
The Oral Question on the “Lyme disease (Borreliosis)” is scheduled for Thursday morning as second point on the agenda in plenary. Since GUE was at the origin of the oral question and resolution, would you be available to introduce the Oral Question to the Commission at the beginning of the debate on behalf of ENVI?
You would have overall 5 minutes of speaking time allocated.
I would be grateful if could reply to me today to let me know if this is possible.
Here request to me is :
Dear Marleen;
Have you any hopes/wishes what I should say 🙂 5 minutes is Big time in plenary 😉
Best
I had very little time to answer !
You will see that I have not talked about co-infections and other modes of transmission because they are less receptive to these and I am sure that anyway, once we have more research, they will discover them. So, at the beginning, the most important thing is to have more money. The rest will automatically follow with the research ! These are points we will work on in the future … Rome was not built in one day either, but as soon as the first stone is laid, it is easier to continue building !
Here is my answer :
I think the most important is the need more research.
To begin urgently, a reliable laboratory test capable of detecting the disease as soon as you have been bitten, but also a test that can also indicate whether or not you have the disease, even if you have the symptoms already for several months, even several years.
Research is also needed at the level of treatments because in many cases, antibiotics are effective if you have just been bitten by a tick, but as soon as the disease has evolved without being treated, antibiotics can already relieve and patients can in many cases, go better for a while, but the patient often remains with disabling sequelae and many patients also relapse. More research at this level is needed to know why these relapses, how to avoid them and develop treatment accordingly. The bacteriophage treatment is a good track to follow and develop, it can already be a progress, I hope, but it can not exclude other tracks.
There should also be more exchanges between Member States regarding the progress of research. And the guidelines for screening and treatment should be more uniform in the Member States.
There is also the problem of training doctors, because there are still too many who do not know the symptoms of Lyme disease or simply not think about this disease, even if the patient has erythema migrans. Many patients end up in a wandering medical practice, go from doctor to doctor and undergo a series of tests often without result and end up being referred to a psychiatrist, or worse, who are interned in psychiatry.
Many patients who have not been detected quickly after the bite of a tick are not recognized in their disease, which causes social and financial disasters, as they become unemployed due to the deterioration of their state of health. Financially, they are no longer supported by any institution, they do not recognize this disease. For example, there are patients who are so sick because of the disease and they have also many financial problems, that they see only one more solution for their problems and that is killing them selfs.
Here again, we need better care, as well as the level of treatments, which are currently very expensive, because many products are not reimbursed.
It will be imperative to make greater efforts also at the level of prevention. (As you know, we are doing our best and intend to put our site also in English before the end of the year, and we already have our prevention flyer in 6 languages, but that is not enough. Europe should make more resources available for prevention.)
I would also like to ask you if it is possible to publicly thank in our name the Lyme-int association, Mrs Liadh Ni Riada, for following us in our request for having a resolution at European level, as well as all the MPs working on it. I would also like to thank all parliamentarians for their many very positive and promising responses for the future of the sick people.