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Annette Whittemore on Nevada Newsmakers again

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, there is a presumption inherent in the claim "can find the pathogen". The presumption is that ME is caused by a pathogen rather than triggered by a pathogen. It could still be a form of immune dysregulation that multiple pathogens can induce. It would be easier in some ways if one pathogen were the cause, and we will know soon if XMRV is a candidate for that. So there is a large risk factor in spending a million or more dollars to search for a pathogen. If they find one, great, our knowledge gets a big boost. If they miss one that is there, it will slow down further search for many years. If there is no such pathogen, and all they find is many different pathogens in a random mix, then this would indicate that ME is a triggered immune dysregulation.

Since there are a range of outcomes, with uncertain risk, getting funding could be a problem. To me its a no-brainer - whats a million against the hundred billion or so ME is probably costing the world every year? However, funding agencies on tight budgets will necessarily think differently to me. They have short term goals and accounting cycles. It will take a statesman in a government or a government agency to push this, and so far nobody has stepped up to back ME research with enough influence to make things happen - not anywhere. (But I do not know enough about the history of the Japanese research.)

Bye
Alex
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Alex
also the costs of ME/CFS are simply going ot INCREASE over time, those who blocked research/help are criminals and should be dealt with like Milosevic etc as I've often said. Denial of treatment to millions of sick people is a Crime Against Humanity.

1) 17+ million folk suspected of having this disease now.

2) Increasingly aging population, so, while ME is lethal (or more often damages health), it takes a long time to kill, reducing life expectancy by 25 eyars or so.
As populaiton increases, and health knowledge increases longevity...you inevitably will have increasing numbers of ME patients.

3) If this is caused by a pathogen, then preventing it from being dicovered and treated opens the door to a pandemic etc, it is simply criminally insane!
Pathogens mutate. What happens if ME gets air-borne, or contact transmissable, etc?
Or some joker does find it and uses it as a bioweapon.

4) If triggered by variable causes, what the hell triggers this in the first place? Is it chemicals we have created and use now, or vaccines etc?
not knowing means the trigger could be over used.

5) Having a large umber of immuno-compromised people is a BAD thing, it (or rather, we, lol) become potential breeding grounds for superbugs etc.

So, it's in society's best interest to cure us!
However, intellience and compassion are always rather lacking in the "power elite" :p

My own suspicion is that it has one underlying cause, a pathogen, which then affects the immune system etc for it's own benefit, ie, modulates the immune system to avoid being destroyed but that causes problems.
so that when a certain tipping point is reached, triggered by some other extremely stressful event (infection, injury and yes, perosnal issues, can all cause extreme changes in the body, grief for example does cause bodily changes), that triggers off a chain reaction that leads ot autoimmune problems etc hammering the body
since most illness symptoms are actually the body's mechanisms to defeat disease, that is logical
we have many of the symptoms of the Flu because the body knows or thinks it has a viral infection, pretty obvious.
 

Eucalypta

Guest
Messages
63
Location
lala-land
I wonder, does anyone know about the physicians at WPI?
The only announcement that was made was for the Endocrinologist dr. Fredericks. Would he be the one responsible for the wonderful recovery of the patients Annette mentions in the interviews?

I'm asking because I have been planning to go to WPI and get treatment, was very excited about that propect for years. What holds me back is the fact that the, according to me, only physician is an endocrinologist. I really do not need or wish to see an endocrinologist. I was hoping for an infectious disease physician or a virologist. In my eyes that would have made more sense. I have seen endocrinologists before and they nearly killed me with their hormones so I'm not too enthusiast if that is their only choice.

Would love to hear if someone knows a bit more about the situation there.
 

Daffodil

Senior Member
Messages
5,875
eucalypta...there is also a doctor at WPI named Dr. Chitra Bhakta. She is awesome...very kind, cariing, and open-minded. she is also not afraid to use the hardcore drugs. She also has a practice in the santa ana, Cali area.

maybe she is not fully set up at the WPI yet..i am not sure.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
I wonder, does anyone know about the physicians at WPI?
The only announcement that was made was for the Endocrinologist dr. Fredericks. Would he be the one responsible for the wonderful recovery of the patients Annette mentions in the interviews?

I am wondering the same thing, how do they have patients with these recovery stories (which implies that they have been treated at least a little while), and the first doc started Aug 1? Who else would have been treating these patients?
 

paddygirl

Senior Member
Messages
163
Maybe Dr Fredericks already had some patients in his practice who transferred. Just guessing.

One of the co - authors of the ICC is a Professor in the research dept at the medical school in my local University. His speciality seems to be Endocrinology. Prof Austin Darragh. I will take great pleasure in handing the
forthcoming treatment guidelines to my doc who doesn't really belive in ME/FM. Ironically my doctor takes care of the students thru the clinic at the school. Maybe I should introduce them.;)

Isn't that all the hormone systems? As women are over represented in ME/FM, I believe that 'hormone events' ie pregnancy and menopause have been put under the spotlight. As has testosterone.

Not the whole picture certainly, but I still aim to head there when the time is right.
 

Cort

Phoenix Rising Founder
Hi Nina

In my opinion, HGRVs to a good degree are make or break for the WPI. And to a part it's the WPI that has made them that. But the BWG or even Lipkin, as far as i'm concerned, won't necessarily be make or break for HGRVs, even though they are very important.

I agree researchers have the right to be wrong, but the WPI were very aggressive and confident about their findigs. If they aree right, then i think they did it very well. Also, as you know, i have always supported them and continue to do a number of things that will hopefully lead to more support for them. If they are right, then they deserve their place in history. But fact is, that we are not entirely sure yet, if they are correct about XMRV/MRVs. If they are wrong, then things look a bit different.

I really have a lot of sympathy for the Whittemore family and for the WPI and am grateful for what they've done, but in the end this is not only about sympathy, but about the destiny of myself and millions of people, so it's the results that matter most. But that's really just my opinion.

Its remarkable what the WPI has done for CFS even if XMRV or HGRV's do not work out. I do think they have tied their horses to XMRV in a very strong way that most Institutes don't.... and if it doesn't work out - its going to be difficult for the research side of the Institute. The treatment side is an entirely different segment in my opinion.....

Medical research is a really tough business..if it wasn't we would have cured cancer long ago. Even in XMRV fades and I think we will know alot more about that tomorrow - its amazing what this small Research Institute has done......
 

Cort

Phoenix Rising Founder
I just read the article on CFS Central again and maybe we have misunderstood the statement made there. It said they expect results to be made public in the next month. This could have meant "in September" and not "within 4 weeks". That would fit with what i read on the WPI's Facebook page, that they expect the results to be released at the IACFS/ME conference.

From what I've heard its being released soon (I heard tomorrow) and its major, major news.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Yes, me too. But probably better not to speculate too much and just wait... This enitre XMRV story has been so crazy... (that shouldn't sound like it's over, i can't tell what i'm expecting, i have no idea)
 

free at last

Senior Member
Messages
697
Im not feeling good about levy being in this big discussion tomorrow. if it was good news, i reckon he would be at home with a beer. Could be wrong. I know im speculating. Stop it. im telling myself
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hopefully we will get some indications ahead of time, maybe some less important papers or rumors or anything. The fact that Science is hosting the chat session might mean that the BWG paper will be published in Science. And because Science published Levy's negative paper they might want him there in the case of "positive" BWG results as well. But now i'm speculating as well... We just have to wait. Some things sound rather positive, some rather negative...
 
Messages
87
Where is this info coming from? I don't see Levy anywhere on the agenda...or any mention of Science hosting the chat session.
 

Daffodil

Senior Member
Messages
5,875
if the lipkin study is positive, why would john coffin be giving a presentation about how xmrv is a contaminant?
 
Messages
118
if the lipkin study is positive, why would john coffin be giving a presentation about how xmrv is a contaminant?

The Lipkin study has not even started. And Coffin's presentation is The case against HGRV's in humans, not contamination.