Let's see what we can do together. An interview with Rob Wijbenga

Sorry : the sound quality of this important interview  recorded on the beach is not very good. Here is a transcript :

Sorry : the sound quality of this important interview recorded on the beach is not very good. Here is a transcript :

Stonebird (SB) : A warm welcome to Norfolk Rob

Rob Wijbenga (RW) : Thank you, it has been a pleasure to meet you Greg a great pleasure.

SB : It's wonderful you came all the way up. So how many interviews have you done now Rob with various clinicians ? Maybe you would like to say a little bit about this programme you have been awarded funding for, to go and interview clinicians.

RW : I haven't done, actually, a lot of interviews, as you know within our programme "Science to Patients" we are inviting scientists , researchers, to talk 5 to 10 minutes, on topics which are living within the community, the ME community, so they are based on questions from patients.

Just now Greg asked me to talk a bit about my experiences with scientists , confronting the most severe cases of ME, like his wife Linda is going through and like my deceased wife Karen went through.

First of all I have to say that talking to Greg, in life, first it has been a tremendous experience. It has, of course, revived, resuscitated a lot of memories I had with my Karen, because our lives are that parallel. We understood each other in depth.

Now, that said, I am a bit sad about the prospects Severe ME patients may expect from scientific researchers. That's of course a personal interpretation.

Two days ago I was at the Invest in ME Conference and it struck to me that all scientists are digging deeper into what they , let's say, call "ME" , within their own specialisms, but they are not really touching the central core of the most severe ME .
Now, let's hope that input from the patients themselves, from the most severe patients themselves and their care-givers, in time will help to influence the way scientific research will go.

As Greg said to me, it has taken already 30 years before it even dawned on scientists and even co-patients who have some life to live that there are persons laying in the dark, all over, in Holland, in England, all over the world, with no contact whatsoever .

I, as the Chair of the Dutch ME/CFS Association, am already searching, desperately, for two and a half years, for those persons in Holland and I virtually have found 5 to 6. So these are the persons who really need a voice from the shadows and my personal attempts to try and reach them and to hear their voices and to be an interpreter to their voices will be limited I can guarantee you.

So let me know about yourselves, through Greg, through his beautiful initiative Stonebird and he will inform me about it and let's see what we can do together to get scientists more conscious about the most severe cases of ME, about the persons who are laying in the dark, suffering indescribable pains with the only prospect that death relives them from their suffering.

So, if this will be looked at, if any scientist will watch this video, I hope it will a sign to him or her. Thank you. 


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