Video interview Prof. De Meirleir and Dr. Byron Hyde November 09

[Frank]

http://www.youtube.com/watch?v=cu08EOwFVns
http://www.youtube.com/watch?v=7u78b-ahi74

Prof. De Meirleir talks about:
-How his career began
-Approach and treatment
-Virusses, Elaine De Freitas
-The H2S test
-XMRV
-The future


On this link http://83.248.209.25/ you can also find the interview with Dr. Hyde on the right side.

Thanks to CarlaNL for posting this, please have a look at her global CFS website: http://www.diagnosesupport.com

 

[Sing]

Excellent. Thank you!

I enjoyed watching the video Dance in Public Space on the bottom right. There are 3 such dances.

 

[ukme]

Very interesting and what a sweet interviewer as well!

 

[jewel]

Thank you for posting this.

 

[anne_likes_red]

Thanks Frank

Very interesting.

 

[Kati]

According to him, ME doesn't exist- CFS doesn't exist. The different criterias for ME/CFS have a varying number of patients according to the definitions themselves. Each patients has to be assessed individually and find what is going wrong- and everybody is different.

That would be a perspective a bit different than our doctors in the USA, but he seems to be very knowledgeable about what can go wrong at the cellular level- and how to test that.

 

[ukme]

So people aged under 30 he says he is disappointed if he can't get them better by 90%..seems like a bold statement to me. Anyone been treated by him?

 

[Alexia]

I find that he contradicts himself a bit.. first he says that he always new there was a retrovirus causing the symptoms (after the work of Elaine De Freitas) and then later about XMRV he says that it will only be one of the problems causing some symptoms but not really the most important...or did I understood wrongly?

Another aspect is, as far as I understood, in December (after this interview) he tested some patients and found XMRV in a high percentage of them. What test he used I don't know.. I've read somewhere that he may have used a test from the group in Sweden where they are also doing research on XMRV. This is all information that I read on internet if is true or not I have no idea.

I also read on Dutch/Belgium forums that he's telling his patients he will test them this month, some already made appointments to have the blood taken for the test. Again I don't know which test he will use.

 

[Dr. Yes]

Thanks very much for the links, Frank.

Best quote (from Hyde): "You can do a lot with half a brain!"

I didn't expect Hyde to be so soft-spoken, but man did he take a swipe at WPI! "Contamination", "advertising"... harsh. This was from November, from the same trip where he made his other well-known remarks, and I wonder if he's softened his position since then (though I kind of doubt it).

Also surprised to hear he doesn't treat at ALL, and sends patients out to specialists for treatment of diagnosed pathologies (I hope he coordinates and advises about those specialists' treatment recommendations, at least). He's one of the real good guys and was there at the genesis of the CFS mess (see Osler's Web, etc), but he's definitely very hard-assed, realpolitik in his views. (And he pretty much admits this.) Definitely a unique, and valid, approach, though he doesn't seem as interested in immune dysfunction as many others. My sense from reading what I could of his own writings is that he is a strict clinician, and forms his model based more on intense clinical evaluations of patients than on hypotheses drawn from research.

Interesting also about the shrinking thyroid glands he mentions so prominently. I knew he had mentioned them before, but not in great detail.. Now how in the world am I gonna get THAT test done..!! A bit weird to hear him recommending thyroid supplements a la Teitelbaum et al (to some extent).

As for DeMeirleir...
Alexia, I understood DeMeirleir to be saying that he knew from DeFreitas' work that a retrovirus was somehow involved in some patients, though he may not have been aware at the time of this interview that the WPI feels this is a different retrovirus. His position on XMRV may have changed since this interview, too. I believe here he was saying that XMRV may play a key role in a subset of ME cases, but not in all, so in that sense it is only a "piece of the [overall] puzzle".

Does anyone know if the big H2S study (300 patients) DeMeirleir mentioned in this interview has been published yet? Too zonked to go searching just now..

 

[thefreeprisoner]

Would anybody like me to transcribe this?
I prefer to transcribe positive talks about XMRV because of the Google potential, but let me know if this would be useful to everybody and I will get right on it.

Rachel xx

 

[Sing]

Again, these are excellent interviews of two excellent, independent clinicians and thinkers whose work is entirely with- -and for--ME/CFS patients. But there is much more coming soon, with research projects in the works , and it will be fascinating and so helpful to find out what these two doctors are thinking in another six months or year. Let's follow our main doctors and researchers very closely!

Song

Today, it appears, "Sing" feels like being "Song"!

Happy Valentines, you all!

 

[Frank]

I find that he contradicts himself a bit.. first he says that he always new there was a retrovirus causing the symptoms (after the work of Elaine De Freitas) and then later about XMRV he says that it will only be one of the problems causing some symptoms but not really the most important...or did I understood wrongly?

I think you misunderstood Prof. De Meirleir. I think he wants to explain that he always knew that there were virusses involved. They could be important in causing symptons. But he's wondering what the cause is of the virusses being present in the patients. He doesn't fully believe XMRV is the big thing, but still is open to research in that area.

 

[Alexia]

Frank, yes I understand your point and he's right thinking that if our bodies are not strong enough to maintain the XMRV dormant while 4% of healthy people are it's because there are underlying reasons and correcting those problems maybe allows the body to recover. I know that this disease is very complex and that Dr. De Meirleir does what he can with the existing knowledge and I really appreciate that.
Being in Belgium are you a patient of Dr. De Meirleir?
(I lived in Belgium for a couple of years and although I got ill there sometimes I miss your country!)

 

[Dolphin]

Would anybody like me to transcribe this?
I prefer to transcribe positive talks about XMRV because of the Google potential, but let me know if this would be useful to everybody and I will get right on it.

Rachel xx

FWIW, I'm unlikely to watch the videos but would read a transcript so if you do one, great.

@others: Please specify if you are talking about KDeM or BH (maybe some people could edit some of posts?) its not clear to me from some of the posts.

 

[oerganix]

Thanks Frank! Those are very interesting videos. Do you know the name of his colleague who developed the urine selftest for a biomarker that he mentioned? And the paper he said will come out next year; do you know the name and location of that research effort?

The urine selftest is developed by professor Chris Roelant, he works for the company Protea Biopharma. I don't know anything about the study.

 

[acer2000]

I'm curious, has anyone done had a positive H2S test and done his treatment for GI issues and seen the kind of improvement he talks about? I want to take the H2S test, but I am on antibiotics right now so I can't. My understanding is that he thinks the H2S is made by bacteria in the gut, does he know which ones? And what antibiotics does he use?

 

[Ronan]

Im a patient of his for about 5 years and took the H2S test when it first came out. I tested positive. I dont know about any of his other patients but i was about 25 when i went to see him after been unwell for about 3-4 years. I am still prity much the same as i was when i first went to see him, probably functioning at a slightly higher level now but nothing really significant. I know he plans to use the WPI test if he gets permission so i will be going for that soon enough i hope too.

 

[Frank]

Being in Belgium are you a patient of Dr. De Meirleir?
(I lived in Belgium for a couple of years and although I got ill there sometimes I miss your country!)

No, i'm not a patient of De Meirleir yet. I do have a first appointment with him but that's months away. first i am going to give LDN a try in combination with what i think are bacteria that make the DPP-IV/CD26 enzyme. BTW Your always welcome over here

 

[Frank]

Thanks Frank! Those are very interesting videos. Do you know the name of his colleague who developed the urine selftest for a biomarker that he mentioned? And the paper he said will come out next year; do you know the name and location of that research effort?

The urine selftest is developed by professor Chris Roelant, he works for the company Protea Biopharma. I don't know anything about the study.

 

[oerganix]

The urine selftest is developed by professor Chris Roelant, he works for the company Protea Biopharma. I don't know anything about the study.

How weird that your response is attributed to me in post 15. Anyhow, thanks for the info.