VillageLife
Senior Member
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- 674
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- United Kingdom
c'mon england!!!!!!
-
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CDC replication study delayed in order to prepare a press release?!
- Thread starter awol
- Start date
c'mon england!!!!!!
Francelle
Senior Member
- Messages
- 444
- Location
- Victoria, Australia
Very balanced viewpoint Bob - exactly what I have been thinking! Thanks.
usedtobeperkytina
Senior Member
- Messages
- 1,479
- Location
- Clay, Alabama
If a person is to keep credibility of providing reliable information, they should try to get a source on the record. If you can't, and the info is of great public concern, then it is ok to use anonymous sources, but some info about the credibility of that source should be included: "a top official in the administration" or "someone who has had contact with the XMRV researchers" or something like that. Of course, I don't expect that much from someone who posts anonymously on a message board.
Tina
Tina
So is this where people are getting the confusion about June 11? Because this has nothing to do with the CDC, you're aware of that, right? It's just some guy looking to make money through signing up people to his "teleconference."
JillBohr
Senior Member
- Messages
- 247
- Location
- Columbus, OH
Well, I am not a big world cup fan (I'm American you know) but if the U.S. wins (which I doubt), I will donate $10 to WPI. Anybody else in?
D
DysautonomiaXMRV
Guest
Low molecular weight RNASE-L Anti Viral Pathway, Elevated inflammatory Cytokines & now XMRV are all increasinly found in patients with well established CCC & ME
(Signs of organic disease) when people bother to look, and they bother because they wake up to the fact we are actually organically ill!!!!! To us, the patient, this seems absurd that 20, 30, 40 years have vanished and health agencies are only now having their sides poked in meetings by colleagues who are muttering - ''we really need to sort this CFS thing out''.
Now the CDC don't agree. All we heard from the May 2010 CFSAC meeting, was CDC's Elizabeth Unger mentioning about low cortisol curves and sub grouping CFS patients from these results. This research was looked at 20 years ago! By going down that route, and not Mikovits XMRV and not NKC/Cytokines of Klimas, and not genes of Kerr/Light - we're going backwards. Which is why the CDC proposed it. To stall for time. (Thing is, this will no longer work. The digital age and explosion in the 'average joe' having access to medical testing, (through leaps in health care provision) gives us access to laboratories, and access any time we chose). If Dr Peterson mentions RNASE-L, we get tested. If Klimas mentions NKC cells, we get tested. The CDC have no idea we do this - obviously, as they don't even discuss what we have found out, about our own bodies.
CDC are years behind 'expert patients', and we are experts in our own illness. We have years worth of bio-medical research stored in our brains that a desk doctor has no idea about. The best a desk doctor can do is take an interest in our test results and smile, or (more commonly) refuse to look at the results or act upon them. 'CFS' patients, thus remained 'mentally ill' in the community, because community doctors would not act on what patients were showing them. This is still going on now, with XMRV.
For political reasons, the CDC cannot 'find' CFS linked to anything, especially a single cause - or in the levels that Cheney & Mikovits do. (Just like Gulf War Syndrome and politics surrounding that potentially fatal condition). As the CDC effectively 'invented' CFS, how can the CDC use strict CCC criteria, or Ramsay ME criteria? They cannot. And so they ignore the work of the WPI, and the cohort they used - so the CDC's XMRV findings will (by logic), by massively lower than the WPI SCIENCE paper. This will deliver their remit of 'Not Scaring The Public', a quite astonishing comment made live on video during the 2010 May CFSAC meeting beamed around the world. We can thus, easily predict what the CDC will 'find' and we can easily understand why - there has been no CDC replication study 8 months on.
You cannot replicate something, that you know you must not find. This would be game over for CDC's invented 'CFS' condition. That 'aint gonna happen, too many ego's bruised. And so this arrogance of individuals gets passed onto policy. The blood supply in the USA, is still not protected. By protecting it, you tell the public CFS patients carry an infectious disease - thus confirming to the public CFS is an organic disease state. Yet officially, CFS is not an organic disease state, unless the CFS announce it is. And they haven't announced it, as they refuse to do a replication study.
It would be wise for the CDC to recognise this, accept this and say that the known classic immune dysfunction findings in people with CCC/ME is a state of neuro immune disease (obviously) as ME has been called a neuro disease since 1969, by the World Health Organisation anyway.
CDC can then keep non signs of organic disease CFS (I don't mean that offensively, I am copying the CDC's classification of CFS) and keep it as CFS. I'm sure many people wouldn't object. Yet the CDC refuse because to do this, recognises a 'sub group' of people with CFS are extremely ill and may even die from what we knows kills people with ME/CCC. How can they possibly do that? So they don't 'do' that, and bury their heads in the sand.
Meaning we have a divide of people who hate the label CFS who have organic disease and now a retrovirus, and people who accept the label CFS, and for them, it's quite appropriate.
No one benefits from this, other than health agencies - who escape responsibility of caring for the public, and protecting the public. Why would this situation NEED to occur? Why do millions of Americans have the reality of their disease hidden from them, their children, their familes and those who care for them?
What is the shame in having CFS that the CDC find so abhorant, that a patient cannot even be told the seriousness of their disease? It's not shame, it's a reason.
And now we know. The REASON is XMRV. Have the CDC not considered that patients, and lawyers will be frothing at the mouth to blame the CDC? They know wasted decades have passed - the CDC know too. NEVER FUND BIO-MEDICAL CFS RESEARCH is the CDC's policy and linked agencies. Patients didn't decide this, the CDC and other agencies did. Why? Who benefits? Patients?
The CDC know they were (and are in 2010) telling people to exercise themselves back into health, knowing that exercise causes: exercise responsive genes to turn on/off that harm cardiac and neurological function, as well as causing oxidative stress and inflammation!!!!! The CDC know this has legal ramifications. The science is there, and so they will not do the science themselves. Period. The CDC is entrenched in a belief system of denial and inabilty to come clean, because their hands are too dirty, and too many people have and will die from 'CFS' induced Cancers, and Cardiological Events caused by oxidisation of blood vessel lining caused by oxidative stress (atherosclerosis).
CFS cannot remain one big soup of multiple causes and outcomes, it needs to be separated into a single disease, or illness categories/entities and then, ultimately, not used for people who don't have CFS. Just like Diabetes is not used for those without Diabetes.
The main stumbling block for the CDC is............XMRV breaks the diagnostic critera for CFS, as does having any sign of organic disease!!!! Yet we are all lumped in together. The very name of this forum demonstates this: About ME CFS.
Cort was forced to use this name as it's entirely needed and appropriate, yet it's like saying About Epilepsy Parkinson's. One day we will need to split apart as we blatently don't have what the next person does and thus the CCC and ME's are furious they can't even have a wash and rotting away in bed, and a large proportion of CFS people don't care, get on with their lives, (albeit restricted) and can drive, travel by plane/bus, work, or work part time, go on vacation.
I could do all those things too, when I first got my condition, and I too had not a care in the world about bed-ridden people as no one told me they existed, and if they existed I didn't know where they were. So many people with 'CFS' can think back 15 years ago and remember we were told lies by our doctors:
''Your disease is ultra rare''.
''I've never seen anyone like you before''
''Dysautonomia is incredibly rare and nothing to do with ME CFS''.
Then it was:
''Take Anti-Depressants''
''I believe you you are ill, take anti depressants''
''Anti Depressants make people with CFS better''.
''Exercise makes you better'
''There is good evidence for CBT in people like you''
These lies continue today. Nothing has changed, it's gotten worse. All 'advice given was wrong, all false - all based on our ALLEGED deragned psychology rather than a virus in our blood. Who told these people to instruct us the innocent 'newbie' patient to take on board these ideas? People like the CDC. Go to their website today, what view do you have of CFS? Mental or Physical? Caused by Mouse AIDS, or stress response to a virus that we once had, and has now 'gone'?
As of today, I am telling people I have XMRV AIDS. AIDS is an Acquired Immune Deficiency Syndrome, but I have XMRV AIDS. I don't have HIV AIDS. When I want to make real impact I say MOUSE AIDS. (XMRV it's originally from a mouse). XMRV is a new human virus for sure, but is derived from a mouse. The retort of ''XMRV AIDS'' has slightly more effect on people who ask me what is wrong, and I tell them ''Chronic Fatigue Syndrome''And then go look on the CDC website about an illness I don't have, or even meet the criteria for anymore.
None of this is our fault, it's the people who have and remain participating in - a gross derilication of duty towards a huge amount of people, sick for various reasons, who where and still are, idiotically, given the same illness label. Even after 1 year, this would cause havoc in the general population, but 25+ years have passed. (1/4 of a century). CDC can't just hope XMRV is going to go away, it's not. The more people tested, and who now test positive throughout 2010 via the XMRV antibody test - the more pressure is asserted on the CDC to act.
Ignoring patients, is now, literally impossible - because too many are getting:
educated on the biology and immunology on ME CFS
communicating with each other, in real time, on a global level
realising what has been done to them in the name of 'science'.
This was only possible through, and via the internet - and thus it took so long. Without the internet we, patients, were kept in the dark and had no idea. Now, within hours - word spreads, and minds are opened to the truth and the SCALE of the situation.
Millions have XMRV AIDS, and were and still are blamed for their disease, given no access to drug therapy, have infected their family members and babies, and were told to 'Exercise' their way our of their dysfunctional mindset by CBT/GE/Pacing/Counselling NLP, Lightning Therapy, Gupta Programme etc.
For those who were told they have CFS, and lives are devastated- the CDC scandal couldn't be better written in a work of fiction - the reality is that terribly good.
(Signs of organic disease) when people bother to look, and they bother because they wake up to the fact we are actually organically ill!!!!! To us, the patient, this seems absurd that 20, 30, 40 years have vanished and health agencies are only now having their sides poked in meetings by colleagues who are muttering - ''we really need to sort this CFS thing out''.
Now the CDC don't agree. All we heard from the May 2010 CFSAC meeting, was CDC's Elizabeth Unger mentioning about low cortisol curves and sub grouping CFS patients from these results. This research was looked at 20 years ago! By going down that route, and not Mikovits XMRV and not NKC/Cytokines of Klimas, and not genes of Kerr/Light - we're going backwards. Which is why the CDC proposed it. To stall for time. (Thing is, this will no longer work. The digital age and explosion in the 'average joe' having access to medical testing, (through leaps in health care provision) gives us access to laboratories, and access any time we chose). If Dr Peterson mentions RNASE-L, we get tested. If Klimas mentions NKC cells, we get tested. The CDC have no idea we do this - obviously, as they don't even discuss what we have found out, about our own bodies.
CDC are years behind 'expert patients', and we are experts in our own illness. We have years worth of bio-medical research stored in our brains that a desk doctor has no idea about. The best a desk doctor can do is take an interest in our test results and smile, or (more commonly) refuse to look at the results or act upon them. 'CFS' patients, thus remained 'mentally ill' in the community, because community doctors would not act on what patients were showing them. This is still going on now, with XMRV.
For political reasons, the CDC cannot 'find' CFS linked to anything, especially a single cause - or in the levels that Cheney & Mikovits do. (Just like Gulf War Syndrome and politics surrounding that potentially fatal condition). As the CDC effectively 'invented' CFS, how can the CDC use strict CCC criteria, or Ramsay ME criteria? They cannot. And so they ignore the work of the WPI, and the cohort they used - so the CDC's XMRV findings will (by logic), by massively lower than the WPI SCIENCE paper. This will deliver their remit of 'Not Scaring The Public', a quite astonishing comment made live on video during the 2010 May CFSAC meeting beamed around the world. We can thus, easily predict what the CDC will 'find' and we can easily understand why - there has been no CDC replication study 8 months on.
You cannot replicate something, that you know you must not find. This would be game over for CDC's invented 'CFS' condition. That 'aint gonna happen, too many ego's bruised. And so this arrogance of individuals gets passed onto policy. The blood supply in the USA, is still not protected. By protecting it, you tell the public CFS patients carry an infectious disease - thus confirming to the public CFS is an organic disease state. Yet officially, CFS is not an organic disease state, unless the CFS announce it is. And they haven't announced it, as they refuse to do a replication study.
It would be wise for the CDC to recognise this, accept this and say that the known classic immune dysfunction findings in people with CCC/ME is a state of neuro immune disease (obviously) as ME has been called a neuro disease since 1969, by the World Health Organisation anyway.
CDC can then keep non signs of organic disease CFS (I don't mean that offensively, I am copying the CDC's classification of CFS) and keep it as CFS. I'm sure many people wouldn't object. Yet the CDC refuse because to do this, recognises a 'sub group' of people with CFS are extremely ill and may even die from what we knows kills people with ME/CCC. How can they possibly do that? So they don't 'do' that, and bury their heads in the sand.
Meaning we have a divide of people who hate the label CFS who have organic disease and now a retrovirus, and people who accept the label CFS, and for them, it's quite appropriate.
No one benefits from this, other than health agencies - who escape responsibility of caring for the public, and protecting the public. Why would this situation NEED to occur? Why do millions of Americans have the reality of their disease hidden from them, their children, their familes and those who care for them?
What is the shame in having CFS that the CDC find so abhorant, that a patient cannot even be told the seriousness of their disease? It's not shame, it's a reason.
And now we know. The REASON is XMRV. Have the CDC not considered that patients, and lawyers will be frothing at the mouth to blame the CDC? They know wasted decades have passed - the CDC know too. NEVER FUND BIO-MEDICAL CFS RESEARCH is the CDC's policy and linked agencies. Patients didn't decide this, the CDC and other agencies did. Why? Who benefits? Patients?
The CDC know they were (and are in 2010) telling people to exercise themselves back into health, knowing that exercise causes: exercise responsive genes to turn on/off that harm cardiac and neurological function, as well as causing oxidative stress and inflammation!!!!! The CDC know this has legal ramifications. The science is there, and so they will not do the science themselves. Period. The CDC is entrenched in a belief system of denial and inabilty to come clean, because their hands are too dirty, and too many people have and will die from 'CFS' induced Cancers, and Cardiological Events caused by oxidisation of blood vessel lining caused by oxidative stress (atherosclerosis).
CFS cannot remain one big soup of multiple causes and outcomes, it needs to be separated into a single disease, or illness categories/entities and then, ultimately, not used for people who don't have CFS. Just like Diabetes is not used for those without Diabetes.
The main stumbling block for the CDC is............XMRV breaks the diagnostic critera for CFS, as does having any sign of organic disease!!!! Yet we are all lumped in together. The very name of this forum demonstates this: About ME CFS.
Cort was forced to use this name as it's entirely needed and appropriate, yet it's like saying About Epilepsy Parkinson's. One day we will need to split apart as we blatently don't have what the next person does and thus the CCC and ME's are furious they can't even have a wash and rotting away in bed, and a large proportion of CFS people don't care, get on with their lives, (albeit restricted) and can drive, travel by plane/bus, work, or work part time, go on vacation.
I could do all those things too, when I first got my condition, and I too had not a care in the world about bed-ridden people as no one told me they existed, and if they existed I didn't know where they were. So many people with 'CFS' can think back 15 years ago and remember we were told lies by our doctors:
''Your disease is ultra rare''.
''I've never seen anyone like you before''
''Dysautonomia is incredibly rare and nothing to do with ME CFS''.
Then it was:
''Take Anti-Depressants''
''I believe you you are ill, take anti depressants''
''Anti Depressants make people with CFS better''.
''Exercise makes you better'
''There is good evidence for CBT in people like you''
These lies continue today. Nothing has changed, it's gotten worse. All 'advice given was wrong, all false - all based on our ALLEGED deragned psychology rather than a virus in our blood. Who told these people to instruct us the innocent 'newbie' patient to take on board these ideas? People like the CDC. Go to their website today, what view do you have of CFS? Mental or Physical? Caused by Mouse AIDS, or stress response to a virus that we once had, and has now 'gone'?
As of today, I am telling people I have XMRV AIDS. AIDS is an Acquired Immune Deficiency Syndrome, but I have XMRV AIDS. I don't have HIV AIDS. When I want to make real impact I say MOUSE AIDS. (XMRV it's originally from a mouse). XMRV is a new human virus for sure, but is derived from a mouse. The retort of ''XMRV AIDS'' has slightly more effect on people who ask me what is wrong, and I tell them ''Chronic Fatigue Syndrome''And then go look on the CDC website about an illness I don't have, or even meet the criteria for anymore.
None of this is our fault, it's the people who have and remain participating in - a gross derilication of duty towards a huge amount of people, sick for various reasons, who where and still are, idiotically, given the same illness label. Even after 1 year, this would cause havoc in the general population, but 25+ years have passed. (1/4 of a century). CDC can't just hope XMRV is going to go away, it's not. The more people tested, and who now test positive throughout 2010 via the XMRV antibody test - the more pressure is asserted on the CDC to act.
Ignoring patients, is now, literally impossible - because too many are getting:
educated on the biology and immunology on ME CFS
communicating with each other, in real time, on a global level
realising what has been done to them in the name of 'science'.
This was only possible through, and via the internet - and thus it took so long. Without the internet we, patients, were kept in the dark and had no idea. Now, within hours - word spreads, and minds are opened to the truth and the SCALE of the situation.
Millions have XMRV AIDS, and were and still are blamed for their disease, given no access to drug therapy, have infected their family members and babies, and were told to 'Exercise' their way our of their dysfunctional mindset by CBT/GE/Pacing/Counselling NLP, Lightning Therapy, Gupta Programme etc.
For those who were told they have CFS, and lives are devastated- the CDC scandal couldn't be better written in a work of fiction - the reality is that terribly good.
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Hi Mr Kite... I think you've missed the main reason for the thread... Cort has said that there was going to be a CDC research paper published soon... but he has received information that it has been delayed so that the CDC can write a press release to accompany it... So it looks like there is going to be a CDC research paper published, and a press release... but we don't know when. (I think I've got these details right.)
I think that anything else at this stage is just speculation.
Cort
Phoenix Rising Founder
- Messages
- 7,390
I have a couple of sources actually - not a boatload (or even a carload) - but a couple
All I know now is what everybody else knows....there's going to be a paper at some point. I don't know if the wait is discouraging or encouraging. Its clear that they can't shut the door on XMRV - which is good - but they also can't say anything positive about it either. At the very least they seem to be taking a good hard look at it; a change from times past and very different from Dr. Reeves who said something like 'They're not going to find it" as I remember.
Cort
Phoenix Rising Founder
- Messages
- 7,390
England draws US in the World Cup.....a tough day for the Brits - so sorry to hear that.
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
England vs US in the World.....a tough day for the Brits - so sorry about that
Yes, if the U.S. wins, I'll give $1,000,000 to WPI... :Retro wink:
(BTW, that's a joke, not a promise) (But I really wish I could!)
I have the right to say pretty much anything I want to say within the rules here. And so does everyone else. I never even got close to "demanding" that anyone say or not say anything, the way you characterized it, or ever told anyone to say or not to say anything. I merely presented my opinion regarding all the speculation being irresponsible. I'm pretty sure that's not against the rules to say, is it? So if you don't agree with me, then don't agree. People can say whatever they want, and I hope you're not saying that doesn't apply to me, too.
Nina
Senior Member
- Messages
- 222
England vs US in the World.....a tough day for the Brits - so sorry about that
Don't worry about that. As the English national player Gary Lineker put it, “22 men chase a ball for 90 minutes and in the end, the Germans win" :Retro tongue:
Except the CDC has denied knowledge of any such press conference, right? So speculate that there will be one anyway all you want. I don't really see the point of it -- why not just wait until/if one actually does come out and there actually is something to discuss -- but knock yourself out if you want.
Just at least try to be clear that you're talking about something that doesn't exist, unlike even here where you still maintain there will be a CDC press release, which the CDC denies. Not saying it's your fault, but if you have come to that apparently mistaken conclusion from reading this thread, that's my entire point: speculative rumor and misinformation tends to cloud the facts and adds confusion rather than clarity.
jimbob
ME/CFS84-XMRV+
- Messages
- 321
- Location
- myrtle beach, s.c.
When I logged on and went to the BUZZ (kill) page, it was like getting punched in the stomach! But we all need to take a breath here and realize there is good news (vipdx/canadien study) popping up that the CDC will have to acknowlege sometime and show their cards! As far as speculation goes, it might be the only thing keeping some of us going right now by lifting our spirits a little.
JillBohr
Senior Member
- Messages
- 247
- Location
- Columbus, OH
Das war lustig!:Retro smile:
Yes, that would be great if you could donate a million dollars and have the US win to boot.Yes, if the U.S. wins, I'll give $1,000,000 to WPI... :Retro wink:
(BTW, that's a joke, not a promise) (But I really wish I could!)
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
I'd even help the U.S. to win if it meant the WPI got a million dollars!
redo
Senior Member
- Messages
- 874
It's been a week now since the first post in ths thread, which means the press release should come out today.
Does anyone know if they've given an exact date?
I don't know if the answer is somewhere in the thread, but it's too long to read through in my state.