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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.
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Yes, Dr. Mellors implied that during the Q&A after the XMRV conference. There is a thread discussing it. http://www.forums.aboutmecfs.org/sh...lors-Expert-in-Infecious-disease-amp-HIV-AIDS
Regardless of who is being nominated or what their credentials are, it is not unreasonable to ask the what the criteria are by which the selections will be made. There are inherent biases/preferences in any decision-making process, and this question helps to clarify what is important to the decision-maker.
I think that would be interesting to know. Why Dr. Peterson or Dr. Mikovits or even myself was not chosen I have no idea. I really wanted Dr. Peterson on there. We do know that the panel has included many prominent ME/CFS spokesman and researchers but how they choose who they choose I don't know. I assumed that I had posted too many controversial blogs. I certainly had the knowledge to serve as patient representative but they didn't choose me. Maybe they didn't want to pay for the cross-country plane trip
But these people are only one set of nominees.
Lipkin did do a study on ME/CFS and bornaviruses and he is now participating in two important studies. Its possible that even though he's believed a pathogen is involved he hasn't seen a pathogen he felt could account for CFS.
The question is in what kind of context do you want to place him and other prominent researchers that enter the field now? Is your glass going to be half empty or half full? Do you want to focus on what they haven't done (not many researchers have worked on CFS!) or do you want to applaud the fact that major researchers are finally stepping into the field, or, in this case, that one of the top pathogen detectives is now engaged in two studies on CFS?
Some of these people are definitely not jumping on the XMRV bandwagon and they have real questions about it and they are not alone. Read the latest article in Science - the field is described as being in a 'zone of chaos'. They may very well have some opinions that do not accord with ones you or I hold. They may bring even MORE questions and sharper questions than we've seen in the past but they are pathologists and infectious disease specialists - they are not CBT practitioners - and they clearly believe infections and pathogens play a key role in this disorder or they wouldn't be there.
Of course if they get selected they'll bring more heft to the Committee - something that's definitely needed. Do you think they going to vote against increased funding for ME/CFS? Or against funding Centers of Excellence? Their role is to help guide the govts response to CFS - to prod it to do the right thing. Whatever they think of XMRV they are certainly going to advocate for more funding into the pathophysiology of this disorder.
That was in reference to a paper that came out suggesting that similar viruses to XMRV may be found in the glandular tissues of pigs - which could possibly be transmitted to humans using supplements. All that indicated was that the patient community basically wasn't up on the XMRV literature and that Dr. Mellors was!
XMRV (xenotropic murine leukaemia virus-related virus) is a gammaretrovirus that has been detected in human patients with prostate carcinoma, chronic fatigue syndrome (CFS) and also in a small percentage of clinically healthy individuals. It is not yet clear whether the distribution of this virus is primarily limited to the USA or whether it is causally associated with human disease. If future investigations confirm a broad distribution of XMRV and its association with disease, this would have an impact on xenotransplantation of porcine tissues and organs. Xenotransplantation is currently being developed to compensate for the increasing shortage of human material for the treatment of tissue and organ failure but could result in the transmission of porcine pathogens. Maintenance of pathogen-free donor animals will dramatically reduce this risk, but some of the porcine endogenous retroviruses (PERVs) found in the genome of all pigs, can produce infectious virus and infect cultured human cells. PERVs are closely related to XMRV so it is critical to develop tests that discriminate between them. Since recombination can occur between viruses, and recombinants can exhibit synergism, recipients should be tested for XMRV before xenotransplantation.
Kati- 1) Split the CFS and prostate patients. By recommending this, he is ASSUMING that this makes sense, when in fact we already have tremendous research synergy (Klein/Silverman/Singh), who is forging ahead in this field for both causes, and the learning they gain is helping both, and creating synergies. By following on his recommendation, this will ensure that discoveries the ME researchers make may not percolate to the prostate community, and vice versa. Let the science lead that decision – and so far the science shows no indication that this split should be made. Especially as the recent musings on prostate cancer from XMRV are that it may not be directly oncogenic, but that it may cause a state of chronic inflammation (sound familiar to ME/CFS) that in turn causes the cancer.
2) CFS patients are getting viruses from irresponsible “parenteral” routes (i.e. we’re shooting up so many quasi-treatments from dubious alternative sources that no wonder we’re infected”. A great “blame-the-patient” message if I ever heard one:
Enemies....that's a powerful word! Mellor is an enemy now......jeez.Then again, maybe the CAA is thinking along the lines of “keep your friends close and your enemies closer”. I wouldn’t go so far as to call these 2 individuals enemies, but they sure have said some things that should cause our community significant concern.
Muffin- My suspicions of the Federal government and their real motives are just too strong. The games that the CDC played on us with assistance from the other Federal health orgs, and others, has burned that suspicion into my brain. Maybe things have changed. Maybe getting the real heavy-hitter researchers on CFSAC will push us forward.
By the way - last year the CAA nominated Dr. Mikovits, Dr. Peterson and Dr. Donnica...the whole WPI slate. (I have no idea why none of them were selected)
I found out that federal employees like Dr. Ruscetti, Dr. Lo and Dr. Alter are not eligible to serve on advisory committees.
The CAA is trying to pack the CFSAC with retrovirologists - I think that's a pretty timely move by them.
Every group, even Phoenix Rising, can nominate individuals.
Have to be a group to nominate someone or can individual patients nominate someone?
I really do worry about not having some treating physicians on the committee. I think it would strike a nice balance if there were at least a couple nominated and voted on. Are there any out there left? I wouldn't want a bunch of academics with no empathy for our suffering.
I can only speak for myself but I don't feel Mellors is an idiot. Obviously he is extremely intelligent in many ways. But at the same time I feel his comment shows a real disconnect from the task which we should be following which is pinning down the test for Mulv's in human beings and looking at the pathogenis in patients. If he thinks we need to look at Kutapressin or some treatment like that contaminating cfs patients as some kind of high priority of research I would worry where he would spend any new funding.
Ok, what activism mode do we go into, mellors and dodd sound concerning if not a few of the others
If these researchers were the cake, Dr. Ian Lipkin was the icing on it. Dr. Vernon told me he's believed ME/CFS was caused by a pathogen since he treated people with CFS in the mid-1980's in San Francisco