XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

[Sean]

Sunshine

I don't dispute that patients in the UK (and Belgium, etc) are getting a very raw deal, they are and they have my deep and genuine sympathy. It is an appalling situation, that has to fixed.

My point is that you can't blame it on socialised medicine. ME/CFS patients are getting a raw deal in every country, in every type of medical system, with some places a lot worse than others.

 

[Sunshine]

Good points.

Abuse and neglect (of course) takes place in the states, however you mention children and not adults. Children are always a target for anyone as they cannot defend themselves.
UK is worst in the world for a 'rich' nation and it's ME/CFS crisis though (was 5th richest nation in the world). This is well established and few would argue if one has followed the politics for 30 years.

Other Euro countries are as bad, but not due to politics and due to poverty. We all know the UK (politically) is the source of the disinformation, the CDC even copy the UK's psychiatrists. After all , we invented 'ME'. Australia is appaling too, copied the Wessely school hook line and sinker. However Australian's infrastructure is sprawling due to a lower GDP, the country is not that involved politically in ME/CFS with America, and the experience in deception and abilty to deceive the public is quite limited. Australians mostly 'take no bull', an attitude that serves them well. I think we're all in agreement there is no health care for anyone universally, and all patients are tarred with the same brush of psychiatry.

All countries are appaling in dealing with ME/CFS then, no country treats the illness, it's just that a select few have extreme cases and these are reported most in the UK. America remains the Noah's Ark for ME/CFS, for those who's pockets are lined with gold.

Outside of the political illlness ME/CFS, America is an embarassing country for health care and millions and millions are left to die of course as they have no insurance. Conversely, come to the UK and you get free health care, house, education and social welfare benefits without every having to work one day in your life. Hopefully there will be a cure, and we can all go to the moon and start a new life.

 

[Daffodil]

i think spain has socialized medicine doesnt it? they have been at the forerfront of treating CFS and even have a law that people with CFS have to be treated within 3 months of diagnosis.

 

[Tony]

Thanks Jemal for the transcript and to everyone who gave a good sense of the type and influence of the show. Extra big kudos to cansado for doing the interview!...

My impression is that Van der Meer was sidelined by the interviewer and was more focused on what De Meirleir had to say...

 

[Sean]

Australia is appaling too, copied the Wessely school hook line and sinker.

That is not true. Certainly some here tried to go down that path, and got some distance, but were pulled up before getting too far. Check the 2002 Australian clinical guidelines, they could have been a lot worse. They are certainly not even close to disaster that UK patients have to deal with.

Broadly speaking we are one of the better countries in which to have ME/CFS (though a long way from ideal, or even acceptable). I would much rather have it here than either the UK or USA.

 

[Sunshine]

Hi Sean, that's very true. Looking back at my rant at 4am, I should have said was that the UK is the leader in psychiatry, as a weapon against it's people. However, our suffering is indeed generally universal no matter what country we live in. I wonder how many people will write about ME/CFS in years to come, from all over the world. I can't wait to read those books once people are well enough to write them! Also I wonder if once we are able to walk around, travel and not be so ill if we can make lots of new friends who have shared our horrible experiences? That would be a big positive from years or decades of negatives.

Jemal well done for the transcript, it must have taken ages to do.

The Dutch TV interview is online with english text now for people who cannot understand Dutch.
http://www.youtube.com/watch?v=ep0uZwlL_Rw

Interesting the lady in the video we're discussing in this thread, says she had to move from Holland to Belgium to get the antiviral drugs. Maybe in a few years, we'll be linking videos to anti retroviral drugs too. What a step forward that would be.

 

[Jemal]

Not sure who did the subtitles on the Youtube video, but good job. I also noticed many improvements in the translation.
I will link the version with subtitles in the first post of this thread.

 

[Gemini]

Ok, a transcript. I am not a professional translator, so chip in if I make any mistakes.

Jemal,

Excellent transcript.

Thank you very much!

Gemini

 

[ukme]

Thanks Jemal, it was good to read

 

[pictureofhealth]

Thanks Jemal and Sunshine - seeing the full video excerpt on YouTube complete with English subtitles really helped to bring it to life.

As you say - van der Meer does really seem a bit unsettled (but good for him for giving the interview - that's quite brave under the circumstances). He seems genuinely to be grappling with the 'earth shattering' possibility of a massive paradigm shift! I'd love to see an interview with Prof W in the UK admitting as much - but not entirely sure he has the courage.

De Merleir seems so laid back and calm, happy even! His moment has finally arrived! Is he presenting at the US XMRV Conference next week? I couldn't see his name on the list of speakers.

Mariska (hope I have your name correctly?) - I thought your interview was very clear and helpful - thank you!

 

[Sunshine]

Is he presenting at the US XMRV Conference next week? I couldn't see his name on the list of speakers.

Hi pictureofhealth, it was reported here that Dr De Meirleir was going to give some news about XMRV in Europe over in America.

His new findings on 7 September 8 and presented at a workshop of NIH in Washington

http://www.forums.aboutmecfs.org/sh...s-XMRV-findings-in-Europe&p=115353&viewfull=1

 

[filfla4]

Yes, I read that too. But he's not on the list of speakers. Is he presenting or not? Does anyone know?

 

[pictureofhealth]

Thanks Sunshine -

I think I saw 'Merleir Presentation at US Conference' and the dates looked so similar - I missed the fact that there will be 2 different conferences happening.

2 Conferences though! Wow - how cool is that? How on earth are we going to be able to keep up with all the articles after that?!!

 

[George]

This was a nice summary on ProHealth

Key Backer of Psychological Theory of ME/CFS Does Apparent 180 on Dutch TV
August 31, 2010

Featured in a YouTube video with English Subtitles, the August 30 Dutch TV show “Een vandaag” showcased interviews regarding the watershed August 23 NIH/FDA paper published by PNAS* that reports evidence of a retrovirus in many ME/CFS patients. The program features:

• Dr. Kenny De Meirleir, MD, PhD, a leading ME/CFS physician-researcher with a lab in Brussels, Belgium (REDLABS) who offers tests for XMRV;

• A Dutch ME/CFS patient who tested positive for XMRV and has started treatment with antivirals by De Meirleir in Belgium;

• And apparent acceptance of a possible retroviral involvement in ME/CFS by Dr. Jos WM van der Meer, until now a prominent force behind insistence in the Netherlands that ME/CFS is a psychological problem. Van der Meer - chairman of General Internal Medicine at Radboud University Nijmegen Medical Centre and co-author of a recent paper reporting failure to find evidence of XMRV in ME/CFS patients’ blood - termed the NIH/FDA research & the possibility of viral involvement “earth shattering.”

 

[filfla4]

I missed the fact that there will be 2 different conferences happening.

Apart from the workshop in Washington on XMRV, which is the other conference and where? Thanks!!

 

[meadowlark]

Canada's Health System

Hi Sunshine:

Brain fog is making it impossible for me to use the quote system as it should be used. But though I don't want to beat a dead horse, I'd like to reply (very gently) to this:

"Just as in the UK, it is countries with 'free' (tax payer funded) socialised medical health care systems where the psychiatrists become kings and write the rule book. The European treatment of ME/CFS patients (psychiatric care or nothing) is a lesson for Americans wishing to enter into 'Obama Care'."

Canada is a country with taxpayer-funded health care, and psychiatrists are not our kings and don't write the rule books. Obviously, it was Canadians scientists who wrote the stringent Canadian Criteria. And I have never been aware of psychiatrists having any particular influence on the ME/CFS issue here. In fact, in Ontario, ME/CFS is officially recognized as a medical illness and psychiatric causes are officially rejected. I have no opinion of Obama Care, but it is just as possible that it will go in this direction as in any other.

Governments react to our illness in a whole range of ways, regardless of the political system. They are all compromised in various ways. And of course, they sometimes have heroes too. We need a lot more of those.

 

[sphynx on roundabouts]

Thank you for doing a great job on tv!

After watching the video clip of the xmrv item I want to say thanks so much to the lady who did the interview. Having the reporters and cameraman in your space must have been a little stressful and exhausting so thank you very much for using your energy for this wonderful piece of tv. Your paintings look beautiful so I hope that as time moves on and your treatment takes effect that you'll be able to spend many hours at the canvas without feeling and bad effects. For now I hope that you can take lots of nice healing rests on your sofa with good music in your ears :sofa:

 

[cansado]

Thank you and the others for saying this. It was exhausting indeed, and I haven't even watched the interview yet!! I am a little afraid it will cause more stress as I am still very tired from it. It is great to be able to paint. THank you all for the friendly responses.

 

[valentinelynx]

Still wondering why Van der Meer said it might be better if you died from this disease... because we are living disabled and that's a hell for some/most of us? Or maybe we would get more attention and get help quicker??

In case no one else has said this yet. I'm pretty sure this was an attempt at the old joke (it comes into my mind a lot):

"The good news about CFS: It doesn't kill you.
The bad news about CFS: "It doesn't kill you."

(in case you don't get it: ...because you feel so awful, you would rather die than live like this for the rest of your life.)

 

[pictureofhealth]

Apart from the workshop in Washington on XMRV, which is the other conference and where? Thanks!!

filfla4 - Sorry no my mistake - it looks like the same Conference (ie the one & only Conference) but just got confused as his name is not on the list of speakers.

Just got confused between CDC/NIH mentioned in different places as the conference organisers and then Bethesda/Maryland & Washington & all these apparently different locations being quoted for the same conference etc. (I know I know - And I've only just got up today!) Roll on drug trials.

Let's see what happens! Wherever Merleir surfaces in the US he is apparently presenting a poster with findings ....