Discussion in 'XMRV Testing, Treatment and Transmission' started by dana, Jun 27, 2010.
(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?
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.
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)
To mgb re Lyrica!
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!
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.
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)
Zoe, what about when the WPI opens its new centre. You may be able to go there for testing.
Sorry, what new centre?
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.
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.
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
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...
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/
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.
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
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
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
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
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
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
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
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
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
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
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
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.
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
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
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!
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.
You can also try a Google Site Search
Separate names with a comma.