xrmv testing- australia

[mgb]

Just in case anyone's interested in the article printed in the Quarterly journal of me/cfs Australia (Victoria) "Emerge" Winter 2010:

From Professor Andrew Lloyd, Centre of Infection and Inflammation Research, University of New South Wales

"I would strongly advise against making arrangements for blood samples to be tested for XMRV by the newly formed commercial company associated with the Whittmore Peterson Institute in the USA. I suggest this not because I have doubts about the good intentions of the scientists at the Institute or the Viral Immune Pathways Diagnostic Laboratories (VIP Dx). Rather, this recommendation comes from the rapidly growing body of evidence against the findings in the original report in Science which raises serious questions about the both reliability and the significance of the original findings. In particular, there are now two published studies from the UK which have failed to detect the genetic material (i.e. DNA) of XMRV or antibodies against the virus in patients with CFS [1,2], and two others with similar findings are in press (one from Europe and one from the USA). Together these findings suggest three possible explanations: i) that the scientists from the Institute have unique expertise that no other well-credentialled laboratories across the globe can reproduce - this is implausible; ii) that XMRV is found in some patients with CFS and a smaller proportion of healthy individuals in the USA, but has little or no relevance to the illness (as patients from elsewhere across the world have CFS but don't have XMRV detected, and healthy people can carry the virus without illness) - this is possible; iii) the original findings are attributable to a systematic error such as cross-contamination of samples with a source of XMRV in the Institute laboratory. Only time will tell which of these three possibilities is accurate. In the interim, the reliability of the test being offered by Viral Immune Pathways Diagnostic Laboratories (VIP Dx) must be regarded with caution. If further data indicates that the XMRV association with CFS has credibility, then arrangements will be made to implement the test in Australia. More importantly, it would be highly inappropriate to consider anti-retroviral medication to "treat" XMRV detected by the VIP Dx assay - firstly as the test may or may not be accurate; and secondly as there is a real potential for serious harm arising from the use of antiretroviral medication (as is well recognised in the treatment of patients with HIV infection).

1. Erlwein O, et al. Failure to detect the novel retrovirus XMRV in chronic fatigue sydnrome. PLoS One 2010;5:e8519
2. Groom H, et al. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology 2010;7:10"

(Bolding is mine)
[I(]Can someone please tell me how to undo the italics please.)

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

 

[Melodie]

(From http://www.mecfs.org.au/about-us) "ME/CFS Australia is an affiliation of autonomous state ME/CFS organisations. It operates at the national level, approaching ME/CFS issues from an Australia-wide perspective. The organisation operates as a public, non-profit company limited by guarantee.

A key goal of ME/CFS Australia is to improve the access of people with ME/CFS to the healthcare system and to influencing decision makers to make the system more responsive."

Is it time for us to voice our concerns to ME/CFS Australia about Lloyd, Hickie and Wakefield?

 

[Megan]

Melodie,

I agree!!! Lloyd definitely has a position on this and it's a negative one. Though to be fair to CFS/ME Australia they had to include his article in their magazine to be balanced (he is seen as one of the main 'experts' in this country). Lets remember that they have also included many other more positive articles on XMRV, including the 'monkey studies'.

I think we should however be putting our concerns to them. My concern is less about the inclusion of his article than the weight he seems to carry withing the Australian medical/research community regarding CFS. We should be asking for other researchers to be supported and involved. If more positive XMRV studies come out then logically further research ought to be carried out by expert retrovirologists, which we do have in out country, and he is not one of them.

 

[taniaaust1]

ohhh just had to delete my post..

i got confused by the google adds on what i just posted.. i'd gone tears as i thought it was talking about XRMV testing in Australia being over $39,000 Fortunately it was just a google add for a lab in Australia for i guess a different testing.

(sigh of relief.. i'd hate to find out they were that much)

 

[Francelle]

To mgb re Lyrica!

Don't know if this is too late, but I am from Hervey Bay and there is a Chemist Warehouse here.

Thanks mgb.

I just read your message however I already went to the Terry White Pharmacy at the shopping centre on Boat Harbour Drive ago a couple of days ago. They charged me $155 for 56 caps of Lyrica 300mgs, so not too bad, only $5 more than Chemist Warehouse. However I am also on Motilium for Gastroparesis (severe delayed gastric emptying) and when I got my order there were ten packs. I nearly fell over until they explained that there were only 25 in each pack and I am used to 100 per pack. The packs looked the same until I got back to our caravan and found that it was definitely smaller than the usual size I get in Melb - lol!

 

[Francelle]

I know we are meant to be totally impartial to the swinging pendulum of scientific research (XMRV in this case) until the pendulum settles convincingly at the point of truth or confirmation - however my pendulum (just quietly) is definitely booing the side of (dare I say it) the naysayers!

The whole historical saga of M.E. reeks of political agendas with resulting disempowerment of the patient, through and through. It's like a case of David and Goliath, the mega corporation versus the individual. It sickens me. It is evil.

I'm ashamed (just a tiny bit) to say it, but as I read much of what is happening globally with M.E and statements such as that of Andrew Lloyd as quoted in mgb's #41 message, I secretly hope that these self same people will have to eat their words very shortly.

 

[ZoeHines]

Travel to the USA or Belgium

Do you know of anyone that has traveled to the USA or Belgium to get the XMRV test done? I am at the point where I would travel to either, but I need help as I don't know how to actually set it all up (in regards to doctors and testing)

 

[mgb]

Zoe, what about when the WPI opens its new centre. You may be able to go there for testing.

 

[Ash]

Sorry, what new centre?

 

[mgb]

Ash - Whittemore Petterson are opening a new centre in August I think. They will be able to treat patients and I assume organize for XMRV testing.
http://www.wpinstitute.org/news/news_cmm.html

 

[ZoeHines]

They are scheduled to open a new research facility in 2010, to be housed in the University of Nevada, Reno's Center for Molecular Medicine.

 

[Ash]

oh, just their own taking forever to actually be built building - being in a thread about Australian's being tested I thought I'd missed some special new announcement about a planned WPI affiliated testing lab in Australia - stupid me, I'll be dead before that happens, carry on

 

[jonc]

Do you know of anyone that has traveled to the USA or Belgium to get the XMRV test done? I am at the point where I would travel to either, but I need help as I don't know how to actually set it all up (in regards to doctors and testing)

Zoe, I travelled to the US to see Dr Cheney and had the WPI XMRV test done as part of that visit. It's a very expensive way to get that test done though as Cheney charges a lot for consultations. Also, you will have to go to North Carolina.

I'm sure you can find other US doctors who will order the test for you though. I'm not sure who, but I'm sure if you post on the boards here you can find someone. It might also be possible to have your blood taken in Australia and couriered to VipDx - it wouldn't take much longer than being couriered from one side of the US to the other, so I'm not sure that it would be a problem if you could find a doctor here who would order the test for you.

By the way, I had my test done in early May and still don't have the results.

You might also want to wait for the upcoming serologic/antibody tests to become available so you can get that done as well as the existing test.

And then there's the question of what you actually do if you get a positive result...

 

[Tony]

You could contact REDlabs : http://www.redlabs.com/red-labs/our-tests/xmrv-testing.php and ask about doctors they deal with including Prof De Meirleir in Brussels. According to them the blood needs to be received within 48 hours.

Same with VIPdx: http://www.vipdx.com/

 

[taniaaust1]

I'd heard somewhere that the blood had to be recieved within 24 hrs? Im confused on seeing all the different things about the place.

I thought I heard that the WPI was trying to work with someone in Australia to set up diagnoses here (I hope my memory is serving me correctly).
.................

And till the tests are standardized and offically recognised.. most doctors wouldnt not pay any attention to such a test even if we had a positive one. It is highly doubtful to be able to get the treatment for the virus (AIDS drugs) .. till the tests are offically approved.

 

[Cort]

ohhhhh No.. everyone stay away from him ( Andrew Lloyd ).. BEWARE He's one of Wessleys cohorts. http://www.ncbi.nlm.nih.gov/pubmed/20466905 See link.. him and wessley work together.. He's against finding the XMRV and will use the wrong methods!! Note also P.White.. he's another buddy of Wessleys
..........

I recently (this week) asked my CFS specialist Dr John Graham about XMRV testing and he said he will get me tested as soon as it's available in Australia. (He didnt mention Lloyd doing the testing as i guess he knew he is in with Wessley). If it was being probably done in Australia.. im sure my specialist would of known.

BEWARE of anything with the term "Fatigue clinic"

I think we give Dr. Wessely entirely too much credit and too easily lump people into the 'Wessely Group'. Its easy to do but I don't know if its accurate. Dr. LLoyd has a reputation of being a very independent researcher. His research history is nothing like Dr. Wessely's.

His Dubbo studies involved taking 4 groups of people who came down with different infections and tracking their immune response, pathogen status and gene expression results to see what happened in the group that came down with CFS. (the study, one of the most important in CFS, was funded by the CDC - which shows how hard it is to easily characterize many research groups on CFS). That's hardly anything Dr. Wessely or any other behaviorists would be interested in.

I know that some of his comments and writings have ticked off people but to simply lump him in with Wessely is too simplistic, I think. For one thing it ignores a good deal of past work - none of which looks Wesselyish at all.

I don't know what his views are now or if his interests have changed or if he is now focused on more behavioral avenues. That very well may be but it has not shown up in his publications - his last paper looked at Heart Rate Variability.

He definitely does not believe a retrovirus is the heart of CFS - he stated that very early - he does not think it fits the disease; he's certainly not alone in that category and he certainly has alot of people disagreeing with him. Personally, I would not go to him or anyone other than a WPI licensed lab to get tested for XMRV. It may be best to follow Dr. Klimas and Dr. Bateman's lead and wait for a validated test to come out.

Here are Dr. Lloyds publications over the past few years

Reduced heart rate variability predicts poor sleep quality in a case-control study of chronic fatigue syndrome.
Burton AR, Rahman K, Kadota Y, Lloyd A, Vollmer-Conna U.
Exp Brain Res. 2010 Jul;204(1):71-8. Epub 2010 May 26.PMID: 20502886 [PubMed - in process]Related citations


2.
Comment on "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome".
Lloyd A, White P, Wessely S, Sharpe M, Buchwald D.
Science. 2010 May 14;328(5980):825; author reply 825.PMID: 20466905 [PubMed - indexed for MEDLINE]Free ArticleRelated citations


3.
Serum cytokine levels in postinfective fatigue syndrome.
Cameron B, Hirschberg DL, Rosenberg-Hassan Y, Ablashi D, Lloyd AR.
Clin Infect Dis. 2010 Jan 15;50(2):278-9. No abstract available.PMID: 20034348 [PubMed - indexed for MEDLINE]Related citations


4.
Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings?
Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D, Lloyd A; International Chronic Fatigue Syndrome Study Group.
Aust N Z J Psychiatry. 2009 Jan;43(1):25-35. Review.PMID: 19085525 [PubMed - indexed for MEDLINE]Related citations


5.
Postinfective fatigue syndrome is not associated with altered cytokine production.
Vollmer-Conna U, Cameron B, Hadzi-Pavlovic D, Singletary K, Davenport T, Vernon S, Reeves WC, Hickie I, Wakefield D, Lloyd AR; Dubbo Infective Outcomes Study Group.
Clin Infect Dis. 2007 Sep 15;45(6):732-5. Epub 2007 Aug 6.PMID: 17712757 [PubMed - indexed for MEDLINE]Related citations


6.
The experience of cancer-related fatigue and chronic fatigue syndrome: a qualitative and comparative study.
Bennett B, Goldstein D, Friedlander M, Hickie I, Lloyd A.
J Pain Symptom Manage. 2007 Aug;34(2):126-35. Epub 2007 Jun 4.PMID: 17544246 [PubMed - indexed for MEDLINE]Related citations


7.
Gene expression correlates of postinfective fatigue syndrome after infectious mononucleosis.
Cameron B, Galbraith S, Zhang Y, Davenport T, Vollmer-Conna U, Wakefield D, Hickie I, Dunsmuir W, Whistler T, Vernon S, Reeves WC, Lloyd AR; Dubbo Infection Outcomes Study.
J Infect Dis. 2007 Jul 1;196(1):56-66. Epub 2007 May 24.PMID: 17538884 [PubMed - indexed for MEDLINE]Related citations


8.
Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study.
Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group.
BMJ. 2006 Sep 16;333(7568):575. Epub 2006 Sep 1.PMID: 16950834 [PubMed - indexed for MEDLINE]Free PMC ArticleFree textRelated citations


9.
Therapy Insight: fibromyalgia--a different type of pain needing a different type of treatment.
Dadabhoy D, Clauw DJ.
Nat Clin Pract Rheumatol. 2006 Jul;2(7):364-72. Review.PMID: 16932722 [PubMed - indexed for MEDLINE]Related citations


10.
Exploration of the gene expression correlates of chronic unexplained fatigue using factor analysis.
Fostel J, Boneva R, Lloyd A.
Pharmacogenomics. 2006 Apr;7(3):441-54.PMID: 16610954 [PubMed - indexed for MEDLINE]Related citations


11.
Immune response genes in the post-Q-fever fatigue syndrome, Q fever endocarditis and uncomplicated acute primary Q fever.
Helbig K, Harris R, Ayres J, Dunckley H, Lloyd A, Robson J, Marmion BP.
QJM. 2005 Aug;98(8):565-74. Epub 2005 Jun 13. Review.PMID: 15955794 [PubMed - indexed for M

 

[knackers323]

Dr LLoyd is also a complete and utter wanker. When I seen him he was more interested in big noting himself by telling me of his reputation in the medical community and wasnt interested in looking at any of my previous test results or running any of his own. I told him that I had an almost complete 'cure' within a week of being on a certain antibiotic and his answer was that he 'didnt see that as worthwhile of following up as only a small number of those with cfs can be cured with such treatments'. I responded that as Id been helped so much by the antibiotics and the fact that cfs was destroying my life, there was a good chance I might be one of that small number and it was worthwhile to me to follow it up. He responded that he 'has no interest in doing that, it is a waste of time and wont be doing it'.

He then told me that I have this for life and I just have to live with it. This upset my mother and he told her not to worry as those with cfs can still live full and happy lifes. He prescribed CBT and told me he wanted me back at work within 12 months.

There are so many things wrong with what he said that day I dont know where to begin. Does he not think that if I could work without destroying myself, that I would be?

This guy had no desire to try and help me and was either very unintelligent or a delibrate prick. I had to pay $300+ for his 'help'. People like this with these attitudes dont deserve to be practicing and enjoying the lifes that thier fees allow them to have. But as they are fully aware, they are a law unto themselves and realise there is nothing we can do about it as we are in a position where we are dependable on them.

 

[mgb]

Knackers- so sorry for that to happen to you. The last doctor I went to spoke over me and dismissed what i was trying to tell him, then went on to big-note himself. So arrogant.

This email came this morning

Discover the future of health
The University of Nevada, Reno, the University of Nevada School of Medicine, and the Whittemore Peterson Institute for Neuro-Immune Disease invite you to the grand opening of the Center for Molecular Medicine

Saturday, August 21, 2010
10:00 a.m. to 12:00 p.m.
Center for Molecular Medicine


University of Nevada, Reno
Reno, Nevada
Map & Directions

Discover this one-of-a-kind facility and take a glimpse of the future of health
For more information about the Center for Molecular Medicine please visit medicine.nevada.edu/cmm or wpinstitute.org

 

[ZoeHines]

Zoe, I travelled to the US to see Dr Cheney and had the WPI XMRV test done as part of that visit. It's a very expensive way to get that test done though as Cheney charges a lot for consultations. Also, you will have to go to North Carolina.

I'm sure you can find other US doctors who will order the test for you though. I'm not sure who, but I'm sure if you post on the boards here you can find someone. It might also be possible to have your blood taken in Australia and couriered to VipDx - it wouldn't take much longer than being couriered from one side of the US to the other, so I'm not sure that it would be a problem if you could find a doctor here who would order the test for you.

By the way, I had my test done in early May and still don't have the results.

You might also want to wait for the upcoming serologic/antibody tests to become available so you can get that done as well as the existing test.

And then there's the question of what you actually do if you get a positive result...

Did you need to have the XMRV test sent to Dr Cheney or did you just go and see him and he ordered what you needed? My in-laws live in North Carolina, so it wouldn't be too much hassle for me to get there. Was it just one visit with him?

Anyone have any ideas when serologic/antibody tests will become available?

There is nothing I can do if I get a positive result, I get that! I just want to know. I am so sick and tired of having friends and family telling me I am faking, rolling there eyes, I just want to know!

 

[mgb]

Zoe Have you emailed Whittemore Peterson? Maybe they can suggest something for you. I would love to have the test to for the same reason as you. Would just be good to know if all this new information relates to me in anyway. I know Theda Myndt from Western Australia (she has been in the media if you haven't heard of her) she sent her blood to Redlabs I think. Don't know if she has her results back yet.