http://www.me-cfs.org.au/node/448
I have not seen this before has it been posted? Does anyone know anything?
I have not seen this before has it been posted? Does anyone know anything?
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Australian Research
- Thread starter joyscobby
- Start date
heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,099
- Location
- australia (brisbane)
hi
i think he is trying to save his own turf. He's the doc involved in the dubbo cfs studies here in australia. Not a great deal came from these. His biggest quote was these initial viruses like ebv are hit and run, they damage us then leave( which i think happens to some). The studies using valcyte show that ebv, hhv6 etc are still active in cfs and now its believed that xmrv can reactivate these viruses. So all these new studies really shoot him down because he didnt find any evidence of ongoing viral causes.
I think its because testing in australia for ebv etc is only positive if have igm antibodies, they dont recognise elevated igg antibodies as being a current or reactivated virus.
i think he is trying to save his own turf. He's the doc involved in the dubbo cfs studies here in australia. Not a great deal came from these. His biggest quote was these initial viruses like ebv are hit and run, they damage us then leave( which i think happens to some). The studies using valcyte show that ebv, hhv6 etc are still active in cfs and now its believed that xmrv can reactivate these viruses. So all these new studies really shoot him down because he didnt find any evidence of ongoing viral causes.
I think its because testing in australia for ebv etc is only positive if have igm antibodies, they dont recognise elevated igg antibodies as being a current or reactivated virus.
Eric Johnson from I&I
Senior Member
- Messages
- 337
It's certainly interesting. At least it's way more correct that a lot of the pathetic comments by other credentialed persons!
> if this statement is accurate the reliability of the designation of the
101 patients must be cast into serious doubt (as diagnosis of lymphoma
precludes a diagnosis of CFS).
This is a small technicality. If he wants to worry about this, that's cool -- it's not totally beyond the pale or something. But it's so minor that that is a matter of taste as to whether it's worth any sweat. I'm pretty sure all these people were dx'd with CFS when they /didn't/ have lymphoma. Obviously, few people fully recover from CFS -- so it would be a big shock if one of these people had CFS-like symptoms that were caused by CFS, then their CFS gradually went away but lymphoma sustained the same symptoms. I mean, come on. This might happen in one person in this sample, but not in 20 people from the same 100-person sample.
> In the recent study, the 101 patients are reported to have met
diagnostic criteria for CFS, but perplexingly no details of their age,
gender, or illness characteristics were provided - except the indication
that the illness in these patients was causing "severe disability". This
information is critical to allow the reader to understand how comparable the patients in the study were to 'typical' patients with CFS in the USA and worldwide.
Definitely fair, but not a big deal to me. They were honest in admitting that they chose severe patients (which is a normal thing to do).
> the finding of a retrovirus in the blood would seem to be highly
significant, however so called 'endogenous retroviruses' (ERVs) are actually found commonly in humans and generally cause no ill effects.
There's little point in raising this unless you have a theory about why an XMRV-like ERV can't be amplified from normals by PCR. Every ERV should be amplifiable in all humans that have it, unless the WPI, NCI, and Cleveland all screwed up -- which is possible but not likely.
> the remarkably comparable "discovery" of a retrovirus in patients with CFS made by Elaine Defreitas
More than fair to mention -- but really, accurate balance would mean also mentioning the NCI and Cleveland partial replications prior to publishing. That's an unusual step which probably was partly inspired by the history of the DeFrietas claims.
> if this statement is accurate the reliability of the designation of the
101 patients must be cast into serious doubt (as diagnosis of lymphoma
precludes a diagnosis of CFS).
This is a small technicality. If he wants to worry about this, that's cool -- it's not totally beyond the pale or something. But it's so minor that that is a matter of taste as to whether it's worth any sweat. I'm pretty sure all these people were dx'd with CFS when they /didn't/ have lymphoma. Obviously, few people fully recover from CFS -- so it would be a big shock if one of these people had CFS-like symptoms that were caused by CFS, then their CFS gradually went away but lymphoma sustained the same symptoms. I mean, come on. This might happen in one person in this sample, but not in 20 people from the same 100-person sample.
> In the recent study, the 101 patients are reported to have met
diagnostic criteria for CFS, but perplexingly no details of their age,
gender, or illness characteristics were provided - except the indication
that the illness in these patients was causing "severe disability". This
information is critical to allow the reader to understand how comparable the patients in the study were to 'typical' patients with CFS in the USA and worldwide.
Definitely fair, but not a big deal to me. They were honest in admitting that they chose severe patients (which is a normal thing to do).
> the finding of a retrovirus in the blood would seem to be highly
significant, however so called 'endogenous retroviruses' (ERVs) are actually found commonly in humans and generally cause no ill effects.
There's little point in raising this unless you have a theory about why an XMRV-like ERV can't be amplified from normals by PCR. Every ERV should be amplifiable in all humans that have it, unless the WPI, NCI, and Cleveland all screwed up -- which is possible but not likely.
> the remarkably comparable "discovery" of a retrovirus in patients with CFS made by Elaine Defreitas
More than fair to mention -- but really, accurate balance would mean also mentioning the NCI and Cleveland partial replications prior to publishing. That's an unusual step which probably was partly inspired by the history of the DeFrietas claims.
Eric Johnson from I&I
Senior Member
- Messages
- 337
> The studies using valcyte show that ebv, hhv6 etc are still active in cfs
Do you mean Montoya, or are there others? I think it would take more than one lab to make this a "fact."
Do you mean Montoya, or are there others? I think it would take more than one lab to make this a "fact."
cfs since 1998
Senior Member
- Messages
- 625
Lerner:
http://www.ncbi.nlm.nih.gov/pubmed/12582420
Valaciclovir group increased energy score 1.12 points after 6 months versus 0.42 in the placebo group (I don't see a p-value though). After that the trial went open-label and at 36 months the treatment group had improved 3.2 points. This is using Dr. Lerner's EIPS scale of 0-10.
Eric Johnson from I&I
Senior Member
- Messages
- 337
Thank you. Never heard of that paper before.