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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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Firestorm, once again thank you for your hard work researching and transcribing. I love the podcasts and found the implied remarks very interesting as just a few months ago many were calling for security in the BWG study, LOL!!
I think we need someone in the US to write about all this and I nominate Trine Tsouderos. She did a podcast/video with Vincent Racaniello , and I was very impressed with her science based viewpoint and her veracity about checking facts thoroughly before publishing articles.
I will come back and post the TWIV with Trine for those interested in hearing her. It was the one at the Chicago conference.
Again thanks.
Barb C. :>)
They made some good points, but once again they were biased in heaping all the suspicion and burden of proof on the 'pro-HGRV' camp. They even implied that Mikovits might have tampered with the samples and might do so again in the Lipkin study if security wasn't tight enough. That made me feel ill that they would go that far (yet remain silent on all the real scumbags in ME 'research).
The discussion on this thread shames the patient community.
And insults a woman who has made great efforts to try to do some good for us.
Shame on you all.
Thanks Firestorm, your forum name suits you. I had not had a chance to post this. Yes this was the blog and although I was somewhat impressed with her, this interview, restored some of my faith in the media.
Yeah I know not everyone likes what she says but I think it's the message.
I had forgotten about Amy Dockser-Marcus in my foggy brain. Another good reporter, IMHO.
Barb C. :>)
Well, not too happy that Prof. R. said I was incorrect about ME being associated with all those viruses and cancers! According to Alan Dove, we get all these infections- HHV6, enteroviruses etc- because we sit around in an inactive state!! Will have to comment later as I have to go.
But that doesn't tell you anything about the cause of the disease.
I nominate Jon Stewart (or alternately Dave Berry). I trust him a lot more than Trine and we might at least get a good laugh. Trine knows where her bread is buttered and I'll give you a hint it's not from ME patients. However, Trine has a bright future as a "newscaster" for Fox News, CNN or any of the other faux news channels. I actually kind of like Trine but I haven't seen any evidence that she really gives a damn about making progress in ME or any other disease. I have seen a lot of evidence of her sucking up to the black hole of waste and lack of accountability better known as the medical-industrial complex.
I'll take Amy Dockser-Marcus or David Tuller. I can trust whatever they have to say good, bad or indifferent. Trine has an agenda that roughly translates as anything that moves the needle to 100% of US GDP towards status quo medicine=good. Anything that might impede this goal=flying saucers, conspiracy theories, Elvis is alive, etc.
Can you give me examples of these claims.? They are opinions and not facts. Nothing wrong with opinions but need to be stated as so.
I think Jon Stewart or Dave Berry would be a hoot. We can always use a good laugh.
Barb C.:>)
your outright fraudulent scientists involved in XMRV and in ME science in general e.g. CDC/Weasly school including McClure.
Still I did 'like' your post Esther and would echo its' sentiments entirely.
I don't know how many UK ME patients would support you Esther in your views on McLure and Wessely. Patients with ME who had a XMRV test chose not to work with her. Someone approached her and posted to Facebook. Other patients chose not to work with her as they were put off with her blanket assurances that there was no retroviral involvement in ME and they felt further put off by her decision to speak at a psych conference last year.
From your comments about being swayed by Gerwyn at the time it seems as if in many ways you lurch around and make up your own opinions on things depending on the loudest views being posted at the times. If you disagreed with the views being posted and could conter-argue with scientific views why didn't you say something?
I'd lke to see you post on why you felt that the Wessely/McLure study was ever a good one and also on McLure's prostate cancer studies from a scientific point of view rather than just more opinion after the event and well away from the long threads about them. Plenty of patients posted pros and cons of those studies at the time but I can't remember ever seeing any actual critiques of the science from you then.
It may be your opinion that there are less places to hide in retrovirology but it still doesn't make the McLure/Wessely study any better. Why not go back on the earlier threads and see if you can answer some of the concerns patients raised at the time in a scientific way?
McClure may have made a couple of poorly judged comments to the media, but she did nothing close to fraudulent, and it looks as if her claims about XMRV/CFS were correct. I have no understanding as to why any patient would think it a sensible idea to link McClure and Wessely in this way, in a letter to virologists.
I think it is important to remember how scientists are going to view this:
1. McClure and Wessely (and many others) were correct in saying no link between XMRV and CFS.
2. Mikovitz and Lombardi, (and a few others) were wrong in saying there was a link, and especially wrong to continue to hold that belief long after it was clear that it was wrong.
That it. From a researcher point of view, that's all there is.
So if someone starts talking about how Wessley or McClure are bad and Lombardi and Mikovitz are good, to an actual researcher, that's going to end up sounding like they are arguing that the sky is green or something. It sounds completely delusional.
Joshua (not Jay) Levy