XMRV CFS UK study #II

[thefreeprisoner]

I wouldn't mind a hug!

There's three for you.

and one more.

The marvellous Dr Judy did tell us to expect this. I for one am waiting for WPI's reaction.

Rachel xx

 

[starryeyes]

(((((((((((((Elliot)))))))))))))

I trust Kerr but I don't trust the Fukuda Definition and George explained in Chat that they can't have negative xmrv in PCR and then find 4 positives in (was it serology?).

 

[Gerwyn]

[/FONT]


It seems the question of XMRV being a mouse contaminate has been answered; it isn't a contaminate but a unique gamma retrovirus. So that's good the research community has a new virus to play with!





Interesting statement that was totally unnecessary for the study??? This sounds like a set up to add doubt to the serology tests performed by the Japanese and the upcoming DHHS.




Again they reiterate that it is not a MLV contaminate but a unique retrovirus in the human population.

O.k. that's my take on the abstract now for the study (science) I'll be back....

The huge variable in this study is the age of the bloodIn the "cfs" group the sampling began in 2003 and "preserved" .In the control group the blood from "healthy" volunteers was about a year old on average.The conclusions of the study could just as easily have read that" xmrv can be detected in fresh blood but not in "old" blood this could be explained that the viruses in old blood were much less viable in old blood "" PCr would be unlikely to work as it needs rapidly replicating viruses".alternatively as the prevelence of xmrv titre was much greater in healthy controls than cfs patients we must question the quality of the blood supplied by cfs patients . Unless you control variables you cannot reach the conclusions of these authors without at least highlighting this possibility.I haven,t read the rest in any detail but the science falls at the first hurdle!

The patients were supplied by Drs Selwyn Richards,janice Man.Proff david J Nutt Dr David honeybourne,drs luis nacul.DrAmlok Bansai proff peter behan and dr Abjit chaudry anyone know of them yet again we dont know what symptoms the patients actually reported
we could equally say that XMRV is present in patients diagnosed according to canadian criterea but not the feduka once again suggesting that the feduka criterea is too blunt an instrument

 

[IamME]

I've always had some doubts either way, but I think it is too soon to completely write off XMRV (even if that is the outcome in the UK for now).

What about the 50% or so of UK patients who've already tested positive? What about that three labs were involved in the Lombardi et al study?

I am not 100% convinced Kerr is totally aware of the politics as he has collaborated with SW and cites "emotional stress" as a causal factor (!) And as I say co-author Gow got Rnase L wrong, yet that is accepted by most biomedical ME/CFS researchers world wide.

I am not really up on the virology details as my brain struggles too much so will leave that to others to comment on, but I eagerly await the WPI's response.

And using the same selection crteria IS important. In the UK, CFS is most often diagnosed as a total exclusion and ME proponents such as Charles Shepherd reject any non-exclusory testing because they believe there is nothing to find. I note that some of the patients came from "Barts and the London Hospital Trust (BLT)", Barts is of course where PD White is, but that would only be a % of the cohort. Patients were also porvided by Selwyn Richards, another psychosomatic propagandist.

Almost all CFS clinics in the UK are of a psychosocial persuation. Nothing is said about how severe the patients were or what symptoms they have other than the stereotyped CFS sketch. They did find one seropositive patient -- could that be a refllection of just how atypical the psychosocial clinics attendees are?

I thought this was interesting:

The lack of neutralising activity in CFS samples compared to
controls could reflect an inability to mount an immune response in these patients.
However, in that case, the virus would be expected to replicate to higher levels in
CFS patients making it easier to detect by PCR.

and this:

However, it is thought likely that the term CFS
defines multiple diseases [15-17], and it remains formally possible that a fraction of
these are associated with XMRV. ... Following the findings reported here, it
would seem a prudent next step for subsequent studies to compare samples and
protocols between different laboratories around the world.

I couldn't find thsi in the PDF:

http://www.nimr.mrc.ac.uk/news/2010/xmrv-cfs/index.htm

Chronic fatigue syndrome affects a large number of people and our findings are likely to be very disappointing to these patients, their families and their friends. It is important that we keep an open mind about new scientific discoveries which point to possible causes of this often very serious condition. Replication is an important part of the scientific method and, as the initial findings have not yet been replicated, I think it will be important to develop standardised samples and assays for XMRV that can be rapidly tested by different laboratories around the world."

I doubt the CBT/GET school will share these sentiments. :Retro mad:

 

[thefreeprisoner]

The patients were supplied by Drs Selwyn Richards,janice Man.Proff david J Nutt Dr David honeybourne,drs luis nacul.DrAmlok Bansai proff peter behan and dr Abjit chaudry anyone know of them yet again we dont know what symptoms the patients actually reported

Where does it say that?
I've got: Suzanne Hagan, John Gow, Frank Mattes, Judith Breuer, and Jonathan Kerr supplied the samples.

Suzanne Hagan and John Gow are CFS biomarker researchers from Glasgow Caledonian University. Frank Mattes is at St Barts (shudder) and edit: Judith Breuer is professor of Virology at Queen Mary University London.

Good point about the age of stored samples and PCR.

Rachel xx

 

[ukxmrv]

Dr Gow was also involved with some of the original old work to try and replicate Dr de Freitas's work. Ask IamME said previously he belongs to a group who say that Rnase-L is not involved with CFS and ME.

 

[George]

And positives were found

but only using the "serology" test. They ended up with 26 positives, 1 from a CFS patient and 25 from the healthy controls, then they narrowed this down to only 4 because they set the "serology" test up to pick up a kind of wide range of things, what is up with that???

The PCR test is usually the first test used to identify a chain of nucleotides from a virus and their set up looks really really solid, they spiked the samples to make sure they were getting the right reaction and were able to determine to as low as 16 copies per sample which is really good. Once you set up a good set of positives from PCR you use them to create culture or serology test. You use the PCR positives as a way of testing if your culture tests work. The culture and serology tests are easier, faster, cheaper but you got to have something to test against. So what's confusing me now that I'm thinkin' is . . .

Why they didn't pick up the positives in the PCR test but picked them up in the "serology" test???

 

[OurDayWillCome]

By Kate Bishop:

Despite using a very sensitive PCR technique similar to that applied in the earlier US study, the UK study failed to detect any traces of XMRV in the patients.

and

Replication is an important part of the scientific method and, as the initial findings have not yet been replicated, I think it will be important to develop standardised samples and assays for XMRV that can be rapidly tested by different laboratories around the world."

More here:

http://www.nimr.mrc.ac.uk/news/2010/xmrv-cfs/index.htm

I don't think it is time to become discouraged. Hang on!

 

[IamME]

The patients were supplied by Drs Selwyn Richards,janice Man.Proff david J Nutt Dr David honeybourne,drs luis nacul.DrAmlok Bansai proff peter behan and dr Abjit chaudry anyone know of them yet again we dont know what symptoms the patients actually reported
we could equally say that XMRV is present in patients diagnosed according to canadian criterea but not the feduka once again suggesting that the feduka criterea is too blunt an instrument

Selwyn Richards is into this gumph:

http://www.emotionalprocessing.org.uk/sundry files/Researchers.htm

http://www.emotionalprocessing.org....th/Emotional Processing & Physical Health.htm

http://www.emotionalprocessing.org.uk/images/EP%20&%20Physical%20Health/chronic%20fatigue%20syndrome.htm

See here:

http://www.facebook.com/topic.php?uid=154801179671&topic=10776

This guy 'co-author Selwyn Richards' is rude and arogant and not intrested in research. I really thought I was finally going to get help, I had pain inflicted upon me, I was insulted and walked out.

Check this

... We are meant to be reassured by the fact that the Southampton Clinic is modelled on the Wareham Clinic in Dorset. From correspondence I've received from PWME who've attended the Wareham Clinic, I'm not reassured at all, as Wareham seems to show a strong psychiatric bias of it's own. One ME patient at Wareham was told she was having treatment based on physical strategies for dealing with ME; they then wrote to her GP saying treatment was focused on 'identifying and challenging negative thought processes that could have hindered her recovery...

Taken from http://www.meactionuk.org.uk/RiME_CFSME_Centres_Condemned.html

 

[Trooper]

First..

SH, JG, FM, JB and JK provided patient samples.

Then...

We thank the following clinicians who
provided patients for the present study;

Dr Selwyn Richards,
Dr Janice Main,
Prof David J Nutt,
Dr David Honeybourne,
Dr Luis Nacul,
Dr Amolak Bansal,
Prof Peter Behan
and Dr Abhijit Chaudhuri, and Mark Quinlivan for retrieving samples.

I wonder how 'onside' this list of clinicians are?

ETA.. Sorry, I meant to ask about the second list only.

 

[vdt33]

Well, this is not how I wanted to start the week -- with this new XMRV research article with negative results. But if I remember correctly, Judy and Coffin both said that retroviruses are NOT ubiquitous. HTLV-1 hardly exists in the US, but it is widespread in Africa. So it won't exist in every area of a country or every area of the world.

This is my first time to post. My mind is so slow that I have trouble keeping up with threads. It may be next week before I post this. Haha!

I have had ME for 35 years. I am 65 years old and very lucky to have survived this long. I found it interesting when I reviewed the list of ME epidemics that there were several occurring in my area of Texas over a period of about 8 years during the time I became sick -- epidemics in Galveston County (adjoining Houston), San Antonio, and Dallas/Ft. Worth beginning in 1965 and ending in about 1973 or 1974.

It seems a bit suspicious to me that the two groups finding negative results for XMRV were so FAST at coming up with their results. It seems to me that they would want to take plenty of time to be sure their results were reliable. Many of us don't have much time left. I hope they think about that when they are doing their research. Lives are at stake. Researchers need to examine their motives and get out of this line of work if they are engaged in competition games or motivated by financial conflicts of interest.

Another thing to consider is that which sequences researchers choose when they search for XMRV retroviral with PCR can affect the results. Plus PCR is not considered a very reliable test in most of the medical community, though I believe there have been some improvements made in recent years. That's obviously why the new test in Reno is a culture test. It is the most reliable kind of test.

 

[anne]

CAA on Facebook says Dr. Vernon is reviewing the study and will post tomorrow. I'm guessing she has some information on replication studied in the US, so it will be interesting to see her impressions.

George, you are one smart puppy. Thanks so much for applying your ample brain to this.

 

[ukxmrv]

Dr Main runs the CFS clinic under Imperial College. She supplied patients to some of Dr Kerr's gene expression research.

 

[bullybeef]

To my mind, Wessely has had his way somehow. But I think were missing something here, Cancer. The IC retrovirologist, Professor McClure's exact words were, "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK." There is no mention that they may have actually found XMRV elsewhere.

Then, Wessely is suddenly involved in offering XMRV tests to prostate cancer patients only with a 200 fee attached. This question has been asked already, but why would he offer a test for something they couldn't find? But did they find it? I believe they did and this is their plan of action.

Eventually, everyone in the UK with ME/CFS will have another battery of blood tests done. The reason for these tests will be 'routine'. When blood test results show some patients to be XMRV+, they will be reclassified as having a yet to be named pre-cancerous virus (or PCV), XMRV won't be mentioned. The people whom are negative will go on the have CFS and be probably treated even worse then we are now in the UK. The PCC positives will enjoy a new treatment regime and Wessely and Co will have gotten away with it scot free, and continue to mistreat possible false negatives in the process.

My reason for this: One thing they can’t be seen to be doing is mistreating potential cancer sufferers. I doubt even they could cover that one up.

Corruption is rife, and there are many people, both here and in the States with blood on their hands. If they can separate XMRV from ME, without completely burying the effects of XMRV, then they will do it.

Obviously, all of this depends on whether XMRV becomes proven to cause cancer. That, I am expecting to be the case.

 

[valia]

This is the study the Imperial college knew would back them up, it's British, they wouldn't find XMRV in CFS would they.

 

[Trooper]

Prof David J Nutt is also associated with Imperial College.

http://www1.imperial.ac.uk/medicine/people/d.nutt/

 

[Gerwyn]

quite and which bits of xmrv were missing it only has one unique sequence it was a non infective clone why was it non infective

 

[fingers2022]

Is it really this difficult?

[QUOTE, it would seem a prudent next step for subsequent studies to compare samples and protocols between different laboratories around the world.

Thanks funkster, this almost throwaway comment seems to have been passed over. Surely we can cut the crap and to the chase by these guys getting their heads together to find out which lab got it wrong? This could save time, money and angst - how do we get the scientists to extract their craniums from their posteriors and take this seemingly simple step?

Satch

 

[dmarie4301]

Yes, disappointing

I thot Mikovits was working with Kerr on this study, so why the huge discrepency? In my mind now is that maybe XMRV is going to end being nothing, just like all the viruses we have. What IS going on?? Did Wessley somehow stick his fingers in this one too? I will be awaiting WPI's response and Dr. Vernon's response as well.

Ive been waiting on the Serology (antibody) test promised to us by WPI by the spring time. Is it going to any better than the culture test???

Maybe Nancy Klimas will jump in here too, cuz she said in the early days of HIV, tests were inaccurate, etc.

Im so glad this board is here....you guys are right on top of the latest.

 

[George]

Quick note;

This is not "THE KERR" study which is due out in June. This one was done in Novemeber/December.