XMRV Replication Studies

[Rita]

News about the Spanish study in Institut Ferran from Barcelona, Spain .
Start of study: Postponed until further notice because of difficulties to reproduce the technique used in the original study.

 

[Esther12]

News about the Spanish study in Institut Ferran from Barcelona, Spain .
Start of study: Postponed until further notice because of difficulties to reproduce the technique used in the original study.

Worrying imo.

 

[fresh_eyes]

I agree, Esther. More info:

http://www.institutferran.org/investigacion.htm

Deteccin de la presencia del retrovirus XMRV en pacientes con Sndrome de Fatiga Crnica grave (criterios Fukuda y Canadienses positivos -certificados por un mdico experto-, impacto neurocognitivo demostrable y pruebas de esfuerzo test-retest (24h) con cada superior al 25% en la segunda y un mnimo de una alteracin analtica de perfil inmune), y poblacin sana.

Seleccin de 100 pacientes y 100 controles sanos. Estudio sin costo para el paciente. Los resultados de la analtica sern puestos a disposicin del paciente.

Fase: seleccin de candidatos.

Inicio del estudio: aplazado hasta nuevo aviso por dificultades de reproduccin de la tcnica utilizada en el estudio original.

 

[starryeyes]

News about the Spanish study in Institut Ferran from Barcelona, Spain .
Start of study: Postponed until further notice because of difficulties to reproduce the technique used in the original study.

Hopefully they'll get it sorted out quickly and get back on track.

 

[spindrift]

I,ve always thought that ME should be called mitochondrial encephalopathy-----the symptoms of MLAS, a known mitochondrial disorde,r and ME/CFS are virtually the same, virus gets in --immune system activated hpa axis down mitochondrial damage immune system permanently swiched on hpa axis stays down complete autonomic deregulation encephalopathy-------it certainly explains the whole range of symptoms

I have tried to get my doctor to check me for MELAS since there are many symptoms of it running in my family and I think some CFS/fibromyalgia is undiagnosed MELAS.
The doctor told me I would be much worse if I had MELAS and did not test for it. I still hold on to the idea that some CFS/fibromyalgia might be undiagnosed MELAS.
There are several cases where MELAS was first wrongly diagnosed as fibromyalgia.
I am glad to see that I am not the only one seeing a connection between MELAS and CFS/Fibro symptoms.

 

[Esther12]

I agree, Esther. More info:

http://www.institutferran.org/investigacion.htm

I'm increasingly dubious about this XMRV stuff. It looks like it''s either surprisingly difficult to replicate the WPI's work, or there's something wrong with the WPI's work.

 

[Hope123]

I'll admit that I thought, "Ho hum." I thought the library would be one of those disorderly, hard-to-navigate mish-mashes that are often connected to Yahoo groups. But when I visited... Wow! It's great. A really good easy-to-use resource.

I've scanned the board - how do I get access to the "library"?

 

[_Kim_]

I'll admit that I thought, "Ho hum." I thought the library would be one of those disorderly, hard-to-navigate mish-mashes that are often connected to Yahoo groups. But when I visited... Wow! It's great. A really good easy-to-use resource.

I'll have no mish-mash in MY library!!!

Thanks for the compliment! I have it sorted in alphabetical order by author, not by posting date, so it should remain easy to navigate. I have great hopes that collectively, we can compile the best and most complete resource for ME/CFS research. Glad you like it!

 

[_Kim_]

I've scanned the board - how do I get access to the "library"?

Hope, I've set it up as a private forum so that we aren't violating copyrights. And I've set the permissions to the forum for senior member access (> 100 posts). 83 more and you're in!!

 

[flex]

Exactly. "You're not in pain, you just feel like you're in pain." (*whoa, brain cramp*)

I don't think it is just an infelicitous use of language by Lloyd. I think I'm finally starting to comprehend where Wessely et al may be coming from: CFS is a virus that causes brain damage that makes you feel like you're sick for years. But you're not, so you have to learn to ignore your feelings via CBT and GET. Am I getting it?

Thats a good one . A bit like teaching healthy people to walk over hot coals or a load of smashed glass! Dont scream as you 're doing it just "put it to the back of your mind"!
The problem is dealing with the carnage of blood on the other side!

If CBT works for "over sensitive" people it should definately work for the healthy. So why dont we punch Wessely in the bollocks and see if he can ignore his feelings!!
Dont see him stepping up to the plate to play "Jackass Wessely"!!!

 

[Countrygirl]

Thats a good one . A bit like teaching healthy people to walk over hot coals or a load of smashed glass! Dont scream as you 're doing it just "put it to the back of your mind"!

Just a thought, flex, but I think the comment fresh eyes made is relevant to the claims made by the promoters of the Lightning Process. I've heard from someone with M.E. who was told at an ESA interview that she can work if she undertakes the three day Lightning Process. So, the DWP are promoting it now.

 

[Rita]

They wanted to do only by PCR tests.
It is better to wait, because they would have negative results, no doubt.
Two negative results in Europe with hundreds of patients would have avoided subsequent investigation and no recognition of the health authorities.

 

[flex]

Just a thought, flex, but I think the comment fresh eyes made is relevant to the claims made by the promoters of the Lightning Process. I've heard from someone with M.E. who was told at an ESA interview that she can work if she undertakes the three day Lightning Process. So, the DWP are promoting it now.

Isnt it true that Eztehr Ranzon claims her daughter suffering from ME for 15 years was cured in three days via the Lightening Procees and Ranzon is now patron of an "ME charity". She is also involved in a lot of Infomercials on TV and she wants to be an MP in Luton.

What is is they say, "where there's muck there's brass". Too bad that you have to ride on the backs of the sick to get notoriety. Wasn't she supposed to be the consumers champion?

 

[Katie]

Isnt it true that Eztehr Ranzon claims her daughter suffering from ME for 15 years was cured in three days via the Lightening Procees and Ranzon is now patron of an "ME charity". She is also invilved in a lot of Infomercials on TV and she wants to be an MP in Luton.

What is is they say, "where there's muck there's brass". To bad that you have to ride on the backs of the sick to get notoriety. Wasn't she supposed to be the consumers champion?

I've met Esther Rantzen, she's not a pleasant woman and was especially odious to a wonderful woman who had organised a fundraiser for AYME and treated her like snot. She even told me off for fidgeting in a photoshoot, I told her I was trying not to pass out (we were standing, I was ill and trying to run my own fundraising project at the time). She was awful, rude, fake and superficial.

 

[Alice Band]

Esther,

Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so).

The IC research wasn't anywhere near an attempt to replicate.

Do you know about something else? If so , please make this clear.

I don't think that it is fair or reasonable to keep putting a negative slant on things or to distort the reasoning process by making these statements when they are untrue - unless of course you have any proof.

 

[flex]

I've met Esther Rantzen, she's not a pleasant woman and was especially odious to a wonderful woman who had organised a fundraiser for AYME and treated her like snot. She even told me off for fidgeting in a photoshoot, I told her I was trying not to pass out (we were standing, I was ill and trying to run my own fundraising project at the time). She was awful, rude, fake and superficial.

Here is the link to prove the above, notice its the ME centre for CFS and "fatigue syndromes". I bet it is government backed with a link to some dubious characters!
http://www.nmec.org.uk/

 

[flex]

Esther,

Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so).

The IC research wasn't anywhere near an attempt to replicate.

Do you know about something else? If so , please make this clear.

I don't think that it is fair or reasonable to keep putting a negative slant on things or to distort the reasoning process by making these statements when they are untrue - unless of course you have any proof.

Well said Alice, it is also true that IC could not have their study replicated because nobody really knows how the hell the carried it out. Also, Cleveland Clinic and the National Cancer Institute have already replicated the WPI and approved their scientific techniques. This was then left open to peer reviw over six months.

The "replication" is in the desire to replicate without being fearful of the findings.

 

[Alice Band]

This is probably just a misundertanding, Flex.

 

[Esther12]

Esther,

Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so).

The IC research wasn't anywhere near an attempt to replicate.

Do you know about something else? If so , please make this clear.

I don't think that it is fair or reasonable to keep putting a negative slant on things or to distort the reasoning process by making these statements when they are untrue - unless of course you have any proof.

I don't think we should dismiss the IC report as completely as some here want to. Unless it was deliberatly fraudulent (which would be an incredibly stupid thing to do, with so many other replication attempts going on) there was some genuine problem with their ability to find XMRV or the CFS XMRV link is not as strong as the WPI research might have indicated. There were differences between the WPI and IC tests, but from what I've read, virologists would be surprised if these differences in techniques explained the differing results - scientists can end up with an unwarrented confidence in their techniques and current understandings, but I'll still give their oppinions some weight at this early stage. We'll have to wait and see, but the IC work would seem to indicate that replication attempts might be more difficult than we'd hoped. The IC group also reported that they'd heard others were having difficulty replicating the WPI results, and I've seen a couple of people here post similar things. We now have this Spanish group who have put their replication attempt on hold, apparently because they were having trouble too.

The evidence to support my statements is already in this thread. I understand that a lot of people are hoping for the best with this, I am too, but to me it seems that some people are being unduly XMRV-positive in dismissing some of the worrying early reports rather than I am being negative by being worried by them. I'm really hungry for some solid news about blinded replication attempts, but so far the hints and rumours have been less good than I'd hoped.

 

[Alice Band]

Esther,

I genuinely don't think that there is any evidence in this thread to determine that IC was a real attempt at replication.

Can you please point to them as I have read this thread very carefully and cannot see them? Please give this some thought as you seem fine to read large amounts of text and send replies.

My suspicious is that you have failed to understand the original Science study and therefore failed to understand what would be needed to replicate it. I may be wrong and apologise in advance if so and with sincerity.

These threads can be read publicly and I would hate someone to read your post and think that it was based on fact - if it isn't.

This topic is too important for non-facts and misunderstandings to be presented as proof or anything other than opinion.

The Spanish one hasn't been shown as a true replication study - we have no proof. Maybe they realised that it wasn't a true replication study and pulled out?