K
Knackered
Guest
That's exactly how I feel and exactly how I explain it to people too. Like having the flu at different intensities.
XMRV CFS UK study #II
- Thread starter Orla
- Start date
That's exactly how I feel and exactly how I explain it to people too. Like having the flu at different intensities.
a little rant about standing up and supporting Dr. Mikovits
i think all this banging and rattling back and forth between dr. m, dr vernon and others is great. make the noise louder and louder...even if dr. m turns out to be wrong she's standing her ground and rattling some cages to start looking at cfids seriously. she's tough as nails...i don't know if she's right or wrong but i'm glad she's on my team.
i'm happy the disagreement b/t vernon and mikovits is public...the start of HIV/AID's research was loud and messy. there were many, many disagreements over which scientific group's findings were right or wrong...but the most important thing is that research continued(s) to be done to find a cause and treatments.
...some people thought the ACT-UP people were being unreasonable...they should sit back and silently let the scientists go through the process...well they didn't, they and their friends were dying they stood up and screamed and it worked.
remember when ACT UP closed down the Golden Gate bridge at the height of rush hour traffic...people were so irritated...they were stuck in traffic...poor things...well people w/HIV/AIDS were dying!!!!!! and the world needed to stop and take notice.
I think Judy is our 1 woman ACT UP right now...whether she turns out to be right or wrong, we patients need to stand behind her...her theories may not be the final answer to cfids but the noise she is bringing to the party is just what we needed.
Thank you Judy M.
i think all this banging and rattling back and forth between dr. m, dr vernon and others is great. make the noise louder and louder...even if dr. m turns out to be wrong she's standing her ground and rattling some cages to start looking at cfids seriously. she's tough as nails...i don't know if she's right or wrong but i'm glad she's on my team.
i'm happy the disagreement b/t vernon and mikovits is public...the start of HIV/AID's research was loud and messy. there were many, many disagreements over which scientific group's findings were right or wrong...but the most important thing is that research continued(s) to be done to find a cause and treatments.
...some people thought the ACT-UP people were being unreasonable...they should sit back and silently let the scientists go through the process...well they didn't, they and their friends were dying they stood up and screamed and it worked.
remember when ACT UP closed down the Golden Gate bridge at the height of rush hour traffic...people were so irritated...they were stuck in traffic...poor things...well people w/HIV/AIDS were dying!!!!!! and the world needed to stop and take notice.
I think Judy is our 1 woman ACT UP right now...whether she turns out to be right or wrong, we patients need to stand behind her...her theories may not be the final answer to cfids but the noise she is bringing to the party is just what we needed.
Thank you Judy M.
D
dmarie4301
Guest
Yeah, lisag!!!! How can we stage something on the Golden Gate Bridge???? Im on the west coast. That would be awesome. Weve suffered long enough. And by a serendipitous connection, Dr. Judy connected XMRV in prostrate cancer to CFIDS, due to RNSaseL dysfunction, which turned out not ALL CFIDS patients have that dysfunction. But this is the type of accidents that create cures!
Knackered, we are in agreement. And thanks Cort for the info on Mikovits talk in Santa Barbara. I thot it would be videotaped....so more to read.
Donna
Knackered, we are in agreement. And thanks Cort for the info on Mikovits talk in Santa Barbara. I thot it would be videotaped....so more to read.
Donna
Lily
*Believe*
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Donna it is taped and is available on the WPI site @ http://www.wpinstitute.org/news/news_current.html
Vernon's suggestion that immune drugs may have skewed the UK results doesn't make sense, as it's virtually unheard of for patients in the UK to get immune treatment, that would be contrary to all official NHS advice, an exception to the rule if at all. Especially not from Barts and Peter White.
And if she's woried about patient selection, why not criticise the UK studies for not using the Canadian criteria? You need to be at least 50% disabled to fit the canadian and having exercise intolerance is essential. If Mikovits' original selection were more severe, it could be refining the test since then has made it now less necessary that they are severe.
If Kerr et al found XMRV in controls but not at all in CFS patients, something is wrong. Why would sufferers be completely untouched by it?
Either way I really hope someone gets in a 100% replication test soon.
And if she's woried about patient selection, why not criticise the UK studies for not using the Canadian criteria? You need to be at least 50% disabled to fit the canadian and having exercise intolerance is essential. If Mikovits' original selection were more severe, it could be refining the test since then has made it now less necessary that they are severe.
If Kerr et al found XMRV in controls but not at all in CFS patients, something is wrong. Why would sufferers be completely untouched by it?
Either way I really hope someone gets in a 100% replication test soon.
D
dmarie4301
Guest
I dont see it. What's on there is the Mikovits talk that Prohealth videotaped in January.
She did a live talk in Santa Barbara in February at the Cheney Institute. It doesnt look as tho this has been transcripted or released as a video. Im sorry I msised it. Was hoping it would be released this week.
Lily
*Believe*
- Messages
- 677
She did the talk in Santa Barbara on Jan 22 - that's on ProHealth. She just did the one at Cheney Insitute in Ashville S. Carolina last week. It really wasn't as good as the ProHealth one in Santa Barbara, and they were basicially the same. At the Cheney one you couldn't hear as well or see the Slides.
Sorry I thought you said you also missed the Santa Barbara one. She mentioned only about 3 small things on the Cheney one that hadnt been mentioned at the Santa Barbara one. So you didn't miss much. They were having a blizzard during the S. Carolina one (or N. Carolina, whereever it was). But they will probably post that sometime soon.
Sorry I thought you said you also missed the Santa Barbara one. She mentioned only about 3 small things on the Cheney one that hadnt been mentioned at the Santa Barbara one. So you didn't miss much. They were having a blizzard during the S. Carolina one (or N. Carolina, whereever it was). But they will probably post that sometime soon.
D
dmarie4301
Guest
Oh so sorry Lily. I was mixed up on that. Of course, the first one was in Santa Barbara. Ok. So yeah, Cheney is in South Carolina. I wont worry about it then, if nothing new was said. Im hoping they come up with that antibody test soon, but it seems to me, until the Blood Bank comes up with an accurate, quick test, we wont get one either. If they do, then maybe standardization will have arrived and we can be on our way to better studies and tests. I hope.
1) Maybe the primary tissue of infection (or resevior) of this virus isn't in the blood. Doctors always assume blood tests can show everything, testing blood may not be the most reliable way to find this virus. An example of this is Lyme disease. PCR yeilds are extremely low, even in people with known infection. PCR of blood is just not a sensitive test in this case because the infection doesn't live usually in the blood.
2) Maybe they should take a step back here and look for reverse transcriptase activity. I'm no retrovirologist, but I'd think that in the presence of a persistent restrovirus, they'd be able to detect RT activity, even if they can't isolate the virus reliably. I *thought* i read that this is what they did with HIV before they figured out how to do more specific testing. Maybe the CFS patients would all have RT activity, even if they can't find XMRV using the current test. This might let them know if they are even on the right track. Of course I could be wrong about this...
3) Its not unreasonable that you'd have to culture something to get high enough yeild to detect it via PCR - especially if it replicates slowly. Take Bartonella as an example. Typical PCR can't usually find it, but PCR after culture can. In fact there is a researcher at NCSU who is basically rewriting the book on testing for Bartonella based on his "BAPGM" culture method. Perhaps this applies to this virus as well - and could explain why people doing "just" PCR can't find it if they don't culture it first. Anyone?
2) Maybe they should take a step back here and look for reverse transcriptase activity. I'm no retrovirologist, but I'd think that in the presence of a persistent restrovirus, they'd be able to detect RT activity, even if they can't isolate the virus reliably. I *thought* i read that this is what they did with HIV before they figured out how to do more specific testing. Maybe the CFS patients would all have RT activity, even if they can't find XMRV using the current test. This might let them know if they are even on the right track. Of course I could be wrong about this...
3) Its not unreasonable that you'd have to culture something to get high enough yeild to detect it via PCR - especially if it replicates slowly. Take Bartonella as an example. Typical PCR can't usually find it, but PCR after culture can. In fact there is a researcher at NCSU who is basically rewriting the book on testing for Bartonella based on his "BAPGM" culture method. Perhaps this applies to this virus as well - and could explain why people doing "just" PCR can't find it if they don't culture it first. Anyone?
D
dmarie4301
Guest
I was just re-reading my notes from Dr. Judy Mikovits' lecture in Santa Barbara. She said, but I dont quote exactly, that reverse transcriptase only comes from a retrovirus , so you can look for that to diagnose. So, yes, this seems like it would be one more way to detect this.
Interesting what you are saying about Bartonella. Culture tests through VIP have picked up more XMRV than the PCR. Quite a bit more, including people in the UK!!! There are people in the UK with XMRV!! Through testing at VIPdx, culture testing. Eventhough two studies cant find it in the UK, it is there.
Point 3 in what you said is true too, I believe from what I have understood from Dr. Judy. This is a time consuming test. They need something that will pick it up easier and accurately, to test the blood supply and put it on a lab requisition form like HIV is on them now!!!
But, as with HIV, there has to be proof that XMVR causes ME/CFIDS. I am interested in reading more about blood transfusions, and people who got sick after them. There were posts on that I will catch up on tomorrow.
I find it very concerning that young people are getting fatigue/pain problems at early ages still. WHATEVER WE HAVE IT ISNT GOING AWAY.
My son has brain fog....one of my first symptoms. He wanted to be a pilot, but cannot. We cant seem to find anything that works for him. WE MUST KNOW IF THIS IS INFECTIOUS TO OUR FAMILIES. I hate to see this happening to him. I cant help myself, how can I help him?
We need a true replication study.....and as many have posted, those studies that are taking their time, are more reliable. The more I think about this second UK study, the madder I get. It occured quickly right on the heals of the first one, and why? Someone mentioned this observation. Makes you wonder......
Interesting what you are saying about Bartonella. Culture tests through VIP have picked up more XMRV than the PCR. Quite a bit more, including people in the UK!!! There are people in the UK with XMRV!! Through testing at VIPdx, culture testing. Eventhough two studies cant find it in the UK, it is there.
Point 3 in what you said is true too, I believe from what I have understood from Dr. Judy. This is a time consuming test. They need something that will pick it up easier and accurately, to test the blood supply and put it on a lab requisition form like HIV is on them now!!!
But, as with HIV, there has to be proof that XMVR causes ME/CFIDS. I am interested in reading more about blood transfusions, and people who got sick after them. There were posts on that I will catch up on tomorrow.
I find it very concerning that young people are getting fatigue/pain problems at early ages still. WHATEVER WE HAVE IT ISNT GOING AWAY.
My son has brain fog....one of my first symptoms. He wanted to be a pilot, but cannot. We cant seem to find anything that works for him. WE MUST KNOW IF THIS IS INFECTIOUS TO OUR FAMILIES. I hate to see this happening to him. I cant help myself, how can I help him?
We need a true replication study.....and as many have posted, those studies that are taking their time, are more reliable. The more I think about this second UK study, the madder I get. It occured quickly right on the heals of the first one, and why? Someone mentioned this observation. Makes you wonder......
G
Gerwyn
Guest
The british study tried in 18 hours what it took the WPI 42 days to achieve
K
Knackered
Guest
Your posts are great Gerwyn, diolch yn fawr iawn.
G
Gerwyn
Guest
Here is a challenge for everyone
If you saw patients with the following symptoms what would your diagnosis be
Unexplained severe fatigue of more than 6 months duration
Cognitive problems
Flu like symptoms
Muscle aches and pains
Inability to fall asleep or stay asleep
Gradual onset of debilitating symptoms
Any Takers?
If you saw patients with the following symptoms what would your diagnosis be
Unexplained severe fatigue of more than 6 months duration
Cognitive problems
Flu like symptoms
Muscle aches and pains
Inability to fall asleep or stay asleep
Gradual onset of debilitating symptoms
Any Takers?
K
Knackered
Guest
Sounds like me other than the inability to fall asleep and gradual onset, mine was sudden so, "CFS"? I don't think they diagnose ME any more here in the UK.
Are you saying they used the wrong patients?
During another long night of very little sleep :Retro smile: I have been thinking about this.
As with everything to do with ME/CFS it is not like the way things usually happen in medicine.
The studies are trying to answer two questions -
1. What is the best way to detect an infection with XMRV?
and
2. Does XMRV cause CFS?
It makes you realise it is no wonder they are getting negative results, they are using a test to see if people with CFS have XMRV but they are also using people with CFS to test their procedures. When they get a negative result, they are assuming it is because of the patient group and that their testing is sound but neither group used a positive blood sample to validate how they did the testing,
They should be using a known positive blood sample to test and refine procedures until they have robust methods to detect it.
Only THEN should they be using the most sensitive procedure to see if people with CFS have XMRV.
That is actually what the WPI did. They are now looking for the best test but their procedures were robust before they started looking at people with CFS.
We know that "CFS" is not one illness, in fact, one of the problems in the UK is that a lot of people told they have CFS DO have a primarily psychological disorder. We mustn't forget that. CBT makes some people a lot better.
When they have a proper test for XMRV (and if it is a cause of ME/CFS) then it will sort out who has the actual disease and who does not. There will be those with coeliac disease, autoimmune disease, Behcets Disease, on and on, all previously misdiagnosed.
Science NEVER answers two questions at once and that is what is happening here. People with AIDS were a clearly defined patient group and all samples were from people who had the disease so HIV was easier to find. A negative sample means very little unless you know if it is negative because of the test or because the illness is not there.
They should be using the best available samples in these confirmatory studies and frozen blood from 1985, I don't think so...
Mithriel
As with everything to do with ME/CFS it is not like the way things usually happen in medicine.
The studies are trying to answer two questions -
1. What is the best way to detect an infection with XMRV?
and
2. Does XMRV cause CFS?
It makes you realise it is no wonder they are getting negative results, they are using a test to see if people with CFS have XMRV but they are also using people with CFS to test their procedures. When they get a negative result, they are assuming it is because of the patient group and that their testing is sound but neither group used a positive blood sample to validate how they did the testing,
They should be using a known positive blood sample to test and refine procedures until they have robust methods to detect it.
Only THEN should they be using the most sensitive procedure to see if people with CFS have XMRV.
That is actually what the WPI did. They are now looking for the best test but their procedures were robust before they started looking at people with CFS.
We know that "CFS" is not one illness, in fact, one of the problems in the UK is that a lot of people told they have CFS DO have a primarily psychological disorder. We mustn't forget that. CBT makes some people a lot better.
When they have a proper test for XMRV (and if it is a cause of ME/CFS) then it will sort out who has the actual disease and who does not. There will be those with coeliac disease, autoimmune disease, Behcets Disease, on and on, all previously misdiagnosed.
Science NEVER answers two questions at once and that is what is happening here. People with AIDS were a clearly defined patient group and all samples were from people who had the disease so HIV was easier to find. A negative sample means very little unless you know if it is negative because of the test or because the illness is not there.
They should be using the best available samples in these confirmatory studies and frozen blood from 1985, I don't think so...
Mithriel
G
Gerwyn
Guest
I absolutely agree these have always been at the core of my criticisms of the british methodology Use a proven test first before attempting others
G
Gerwyn
Guest
The answer to the question is idiopathic chronic fatigue---Feduka cannot differentiate
Well, Gerwyn, if I was a GP I would diagnose it as depression. And I'd prescribe SSRI's, because that would bring me one step closer to my all expense paid trip to the Bahamas (thank you pfizer).
But, if I wasn't a GP and I actually gave a sh*t, I would start testing for any of a dozen or so possibilities (see exclusion list for CFS).
But, if I wasn't a GP and I actually gave a sh*t, I would start testing for any of a dozen or so possibilities (see exclusion list for CFS).
K
Knackered
Guest
Surely the people doing the studies should know this and know the difference between sudden/viral onset and gradual onset. Or do they think we're all the same?
This is exactly what's wrong with calling our illness CFS.