Imperial College study boost chances of replicating the WPI findings

[Marco]

Do you believe the IC study was simply a mistake, .

Do you believe I believe they were mistakes? Didn't you notice the inverted commas? Perhaps I was a little light on the irony.

If you remember back to when the WPI study came out many of us were concerned, not for the Wessleys of the world so much, but that well-meaning and unbiased researchers would fail to replicate the WPI findings because they were unaware of issues involved with patient selection plus the difficulties of actually pinning down this virus.

I'll offer you two alternative scenarios :

(a) The IC study was not carried out. Virologists worldwide naively accepted whichever patient population was offered to them, chose a variety of assay methods etc and either failed totally to find XMRV or the results were so mixed as to be unintelligible. The only group wise to why they failed are us.

(b) The IC study is carried out (despite Wessley's involvement) as a bona fide replication attempt using a well defined cohort with organic ME, using the same culture media, assays and protocols, in fact a waterproof study. And fails to find XMRV.

Personally I'm more comfortable with the factual scenario where a study has been produced that is shot full of holes, has produced a response that examines these flaws in great detail and has generated even more discussion of the issues surrounding ME and the agendas that involved.

The net has made the world a small place and a select group like XMRV virologists can't fail to be aware of the response to the IC study. Scientists are a competitive and territorial lot. Any virologist worth their salt also cannot fail to notice that the paper is co-authored by a psychiatrist who self-references ad nauseum and that the paper was published on a pay to publish vanity site.

I agree that governments and the media will neither bother or care to consider the respective quality of the two studies however I firmly believe that the science is in a much better place post the IC publication.

 

[ukxmrv]

I guess that the science isn't our problem in the UK it's the spin and it's always been like that. I presume that it is the same for you in France?

Although the science may be better it's the real life treatment of patients that is the concern to me.

I've already had replies to my NHS and other UK bodies become dismissive because of the IC paper. That's the way it will be until something changes in the UK.

The actual science has been deliberately ignored in the UK. We discovered that when we fought the NICE Guidelines here. All through the process science was ignored and patients were ignored. They (the psych lobby) had a huge steamroller of power that swept right over and crushed us. They still do and they will use it.

It may be different in the USA and I most sincerely hope that it is different in the future in the UK and France.

 

[Gerwyn]

Do you believe the IC study was simply a mistake, when the person who chose the patients has spent his life claiming ME/CFS is simply a belief, and critically that the belief in a virus causing ME is an example of 'Somatization Par Excellance'. What would be the chance of this 'mistake' of not finding XMRV happening in a person who declared XMRV wasn't in the UK before even doing the research? About zero.

Anyone aware of British ME/CFS politics knows it was a willfull design designed to harm the legitmacy of ME/CFS and DELAY FUNDING for bio-medical research. By delaying research, be it 1 year or 30 years, MORE people will die of Cancer, Cardiac Emergencies and Suicide.

Anyone who has Cancer due to CFS, or has been in a resusitation room like me due to cardiac issues, will understand the grave situation patients in the UK are in. The failed (by design) XMRV IC studies hand reaches out accross the atlantic and helps stall funding for research in the USA also. People in the USA are dying too. The IC study helps to de-legitimize the WPI Science paper (to the uninformed) and helps 'allow' news media to dismiss the XMRV finding. There is an interesting video of an unfortunate yet brave gentleman, (an American ) here giving his testimony to the CFSAC recently, since the XMRV discovery was made public. One can imagine if one has cancer due to CFS, the utter terror one would feel anyway, that is further heightened by news such as the designed fake XMRV IC study coming from the UK that can delay financing and interest into the disease.

Especially studies who employ people who are in agreement with other people that ME patients are 'disgusting' and should feel 'shame' for their disease - as Professor Simon Wessely says A man who just happened to have personally selected the cohort in the UK XMRV IC study that found zero incidence of the condition.

I do not tip my hat to killers, period. Especially when their mad theories have nearly cost me my life, literally. When it gets that personal, one must devote what little energies one has to set the record straight on state funded medical neglect- which is exactly what I do and will alway do when capable.

The imperial college study is so full of holes that it should be renamed the imperial science collander and given an X rating as not fit for public viewing.I won't go on about prostitution of science etc

 

[Marco]

I guess that the science isn't our problem in the UK it's the spin and it's always been like that. I presume that it is the same for you in France?

Although the science may be better it's the real life treatment of patients that is the concern to me.

I've already had replies to my NHS and other UK bodies become dismissive because of the IC paper. That's the way it will be until something changes in the UK.

My initial reaction was similar to yours. The treatment (sic) I received in the UK while useless was at least not malicious and my GPs were quite happy to discuss symptoms and make suggestions within their limited resources, but I don't underestimate the sheer cynicism of those in charge. As for France it appears to be completely psychologised. I gave my GP a complete list of symptoms which he read and then declared that in France we don't believe in this disease. I also passed on a copy of the WPI study to him and he at least agreed to look further into the research - most likely to debunk it - but at least he didn't bin it immediately. I didn't do this with any expectation of help - just doing my bit to spread the word. The problem in France is compounded by a national love affair with prescription medicines and an old school chauvinistic attitude whereby professionals, especially health professionals, do not expect to have any dialogue with their patients. They diagnose and prescribe and you take it!

I've now come to the view that the science is necessary but not sufficient - but it is necessary. In the UK for the foreseeable future, governments of whatever political hue will be seeking to make 'efficiency savings' and the NICE papers underline how appealing the 'cost effective' CBT/GET regime can be. Only irrefutable evidence of an organic cause will make any impact on the likes of NICE and their government paymasters. At least this time XMRV is not just limited to ME and should the general population start to worry about cancer etc then thats a whole different ball game.

 

[V99]

It's pretty sick, that it may have to take a retrovirus, to get some movement on this disease. So many people really learnt nothing from AIDS.

 

[starryeyes]

They will behave as they did with the Hemophilliacs - that was an absolute disgrace and still is.

uk, how did they behave with Hemophilliacs?

 

[spindrift]

Double Blind

I have not been tested for XMRV.
I hear by offer Simon Wessely to donate my blood if he ever needs a transfusion.

 

[Katie]

uk, how did they behave with Hemophilliacs?

I'm not 100% on the facts as I've only read one article on it in Private Eye and the don't have an online archive but here's what I know.

Back in the 70s, 80s and maybe early 90s(?) hemophiliacs were given blood when neccessary. Often the blood was tainted leaving both adults and children with Hep C, HIV and in some case CJD (mad cow) and other blood contaminants. It was also discovered that some of the blood used for them was bought from America where they drew blood from inmates in prisons which was not screened. These people are still fighting for compensation and have been treated appaulingly. Many have died, especially as you can't give a liver transplant to someone who can't clot. The government are still fighting against them and keeping it quiet. If I happen to find my copy of Private Eye I'll make this much more accurate. Someone else might be able to add/correct what I've written so far.

 

[thefreeprisoner]

Wow. I didn't know about that. I googled and found some stuff about it here:

Stories of people living with HIV and haemophilia

Rachel xx

 

[Katie]

Here's another site relating to the haemophilia scandal http://www.taintedblood.info/index.php It really is shocking, it's not just MEers that are convienently outcast.

 

[Cort]

IC study won't mean anything if other studies prove out the WPI's findings. There will be much bigger players weighing in - Dr. Mikovits mentioned top retrovirologists in the world. The DHHS crew will be very important (Dr. Mikovits is helping to oversee the studies). Interesting how the US media didn't pick it up much.

Katie is right - nothing from the UK is going to establish anything; the big results are going to come from the big internationally known labs in the US.

Small study, from questionable source - its not the kind of study that will be determinative of anything.

 

[usedtobeperkytina]

yeah, I know the news media made a big deal of the study. But the researchers would have actually read it and they would be able to immediately see the problems.

Tina