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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dear everybody,
You are right. The information was not first hand and that's why I made this clear in my first post. I can only quote someone if I hear them say it directly to me. And of course then it has to stand the test of time and my Alzheimer light is not always helping. In the case of the conference I made notes, like at university, so I' pretty sure they are correct.
I don't want to speculate on something and I will be more carefully phrasing my words the next time. I think dr. De Meirleir is a fantastic physician, researcher and person. He is highly intelligent and a well-spoken guy. In Belgium everybody knows him and he is highly controversial. If you go to a medical doctor, your cardiologist, pharmasist or talk to a friend-scientist everybody is warning you. I think you don't get these reactios as much in other parts of the world.
In my search for an honest and objective picture of DML, I sometimes seem to get inflicting and inconsistent information. It's not a personall matter but these inconsistencies 1) with telling us that anti-retrovirals are not usefull and 2) the serologytest not being usefull, are absolutely raising questions in my highly critical mind. Therefor I asked you people what to make of it? I'm only getting more confused.
Mark is right. I will not speculate on anything in the future. I'm sorry!
Love,
Berthe
Berthe, I'm sorry if you read my post as saying you should not speculate. Actually, I was saying quite the opposite. I would, and will, defend your right to post questions like the one that formed this thread. You were confused about something you heard second hand, and you asked the question here. There's nothing wrong with that: that's one of the things this site is for. People have responded, they have helped to clarify what this rumour might be about, we've heard that Dr de Meirleir prefers the culture test to the serology test, so it seems clear that was part of the "chinese whispers".
I'm sure you've learned from this thread that sometimes it's better to try to pursue questions like this behind the scenes first, and that second-hand information and rumours can cause tension sometimes, so a bit of caution is a good idea. Others have been through that learning process too, myself included.
There's no harm done here, I think. We've had a chance to talk this through, lots of people have given very positive testimony about Dr de Meirleir, we understand that he is not anti-WPI as was suggested, so the record has been set straight. It happens all the time, so please don't feel bad about it all.
And you said you won't speculate on anything in the future: please don't follow that plan! It would be a great shame if you felt you couldn't speak your mind here. You've brought a really valuable perspective to the forum, and we're pleased to have you here. Just carry on with the good work you're doing.