Kati
Patient in training
- Messages
- 5,497
I understand Bluebird- You guys have done what it took to survive all these years.
I am still a rookie at this, been 13 months now- but know how it feels like to be sick forever.
I understand Bluebird- You guys have done what it took to survive all these years.
I am still a rookie at this, been 13 months now- but know how it feels like to be sick forever.
A
anne
Guest
Well, that answers the question of what Bill Reeves has been doing with himself lately...
K
_Kim_
Guest
Levi, his last paragraph hints that he's not even from the U.S., yet is able to make these glowing definitive statements about the CDC. This rumor isn't even close to being believable.
I agree that we should just bide our time and not be taken in by rumors.
C
cold_taste_of_tears
Guest
Throwing the dunce hat in the fire
On first glance this is logical.,Yet if you know what CFS is politically and medically - that would be impossible. CFS is a hotchpotch of anything that causes chronic fatigue in collaboration with a few other symptoms.
One of the criteria for CFS, is fatigue and 1 symptom. LOL!!!! That's not a disease process in anyone's book.
There are countless reasons to be told you have CFS, there are 5 different diagnostic criteria to begin with, and thus anyone can be diagnosed regardless of symptoms.
Oxford Criteria CFS used in the UK for CFS/ME is: ''No specific Symptoms''. and 'previous psychiatric history not a reason for exclusion''.
One man's immune disease is another mans mental illness when it comes to CFS and CFS/ME - which only exists in the UK politically via the UK government's NHS socialised medical service, and has no coding, and no label outside the country.
By logic, take 100 people diagnosed with CFS, and probably only 8 of them would have it ('it' being a unique inflammatory immune disease) - even if there was an agreed diagnostic test which XMRV will become.
XMRV does not need to have 80% of people with CFS testing positive to become a test for all cases of CFS as that's impossible to achieve.
It needs to be hitting high percentages with people who meet criteria of disease (Canadian Criteria). This has been done twice so far in the USA and in UK (London) and we are told they hold up.
The rates drop through the floor in replicating the WPI study when you chose the loose criteria for CFS that the CDC and governments around the world prefer. The ones that explain 'long term tiredness'. Depression causes long term tiredness, anything can.
Hence the state we're all in.
To expand on this, if I declared that Parkinson's disease was chronic long term tiredness - how many people diagnosed (with no test) actually have it?
Very few indeed.
Ironically the bragging of the Psychiatric profession of saying they won't be able to replicate the WPI study - is simply showing that the criteria is utter nonsense. Morally, they should use the SAME CRITERIA as the WPI - but they refuse.
Example:
That would be like saying a man, age 40, 6ft tall says he's the fastest runner in the world.
Vs
I chose a woman, age 80, 4ft 2 with myopia and say she's slower.
In other words - incompatible and pointless to attempt to repeat the 40yr old man's running time, unless I chose the EXACT specification of this runner myself.
CDC, and others with vested interests won't be doing that, ever.
They need their CFS to stay as a non disease and Simon Wessely needs to be able to keep describing patients as ''disgusting'' Source: Link and British Nurses need to be able to keep describing patients as ''Lazy Lazy Bastards'' and ''Fags''.
Source: Link And doctors need to be able to keep describing patients as ''piece of pond life''. Source: Link
This is how CFS is viewed, due to anyone claiming to have it, with no evidence required. ''Long term tiredness' remember? That's all you need and as long as it's ''unexplained'' then you're in, and you can wear the gold CFS badge.
The question arises, who invented the ridiculous criteria for CFS?
Psychiatrists and denialists of CFS, that's who.
By renaming Post Viral Fatigue Syndrome/Myalgic Encephalomyelitis ME...........as CFS.
Very few people (by logic) with CFS, would now have PVFS or ME.
Eradicating the original disease, hiding it in a vague fatigue syndrome that is a diagnosis of exclusion, not a diagnosed of immune/neurological origin.
Now I've been sick at least nearly 19 years, as in inside my house for 16 of those.
I never knew what I was telling you, until 13years had passed.
I learn't the day a Royal Air Force ER medic ripped ECG leads off my hairy chest (ouch) and told me to not come to ER when I had chest pain.
This was despite a cardiac nurse telling me to ignore this and always come to ER when I have chest pain. LOL!!! Like a play almost.
When people do that, then destroy the medical records calling you words that rhyme with 'banker' then you know the game is up.
Even more so, when you get a written letter of apology from a doctor (you've never met) apologising about starting an office rumour
about you, and they didn't mean it. Seriously. The same person the military ER medic phoned up and had a chit chat about me - to
start that rumour. I don't have the medical records the hospital ''lost'' - but I do have the letter of apology admitting to the event.
LOL!!!!!!!!!!! So politics is very much involved in 'CFS' and medics can actually hate you so much because of the name (as a white racist
sees someone with a black skin) they actually go out of their way to try and kill you - accidently on purpose.
Without the name 'CFS' this would never have happened.
Remember the name 'CFS' was coined by people who call people with CFS - ''Disgusting''.
Is that not somewhat, malice aforethought? Pre-meditated?
I think so.
XMRV we are told - explains the original disease state of PVFS/ME - but it cannot explain CFS that the CDC and Psychiatric profession embrace.
(The people who tell me to go home and listen to classical music - in ER). Yes, in ER. lol. Not they loony bin, there they just say things like when
was the last time you had sex, and explain how you're capable of getting a girlfriend? And - we need to talk about you sex life.
So as you can see, CFS is a green light for people to take advantage of you (medically) in any way they damn well want, because it's legal.
If you're mentally ill - it's a free for all. Who believes your story? If CFS/ME = attention seeking, then the story is a fantasy.
PVFS/ME was re-labelled as CFS.
If one is to be accurate, one should actually say XMRV is PVFS/ME if the Canadian Criteria patients - test positive for XMRV in significant numbers.
Remember CFS is a 'malingerers excuse' according to the very people who use and like to use the name.
It is wise if you're diseased in any form, XMRV or not, that you don't use the term CFS - as it's based on a lie, and on an insult.
To recap, British Psychiatrist Michael Sharpe states:
''Abnormal physical signs are not compatible with a diagnosis of CFS''.
Source: Link
And Peter White (CDC Bill Reeves new buddy Psychiatrist) who runs the British CFS/ME treatment team in London, UK and sits on the tax payer funded British, Medical Research Council, (MRC) also states:
''Cancer, precludes a diagnosis of CFS''.
Source: Link
Which means 1) You can't have evidence you are sick and use the label CFS.
2) You can't have cancer and use the label CFS.
Guaranteeing CFS is nothing.
Guaranteeing you are viewed as nothing.
Guaranteeing you never get any access to medical tests.
Guaranteeing no money is ever spent on biomedical research on CFS.
Clever huh?
Sick, but clever.......
On first glance this is logical.,Yet if you know what CFS is politically and medically - that would be impossible. CFS is a hotchpotch of anything that causes chronic fatigue in collaboration with a few other symptoms.
One of the criteria for CFS, is fatigue and 1 symptom. LOL!!!! That's not a disease process in anyone's book.
There are countless reasons to be told you have CFS, there are 5 different diagnostic criteria to begin with, and thus anyone can be diagnosed regardless of symptoms.
Oxford Criteria CFS used in the UK for CFS/ME is: ''No specific Symptoms''. and 'previous psychiatric history not a reason for exclusion''.
One man's immune disease is another mans mental illness when it comes to CFS and CFS/ME - which only exists in the UK politically via the UK government's NHS socialised medical service, and has no coding, and no label outside the country.
By logic, take 100 people diagnosed with CFS, and probably only 8 of them would have it ('it' being a unique inflammatory immune disease) - even if there was an agreed diagnostic test which XMRV will become.
XMRV does not need to have 80% of people with CFS testing positive to become a test for all cases of CFS as that's impossible to achieve.
It needs to be hitting high percentages with people who meet criteria of disease (Canadian Criteria). This has been done twice so far in the USA and in UK (London) and we are told they hold up.
The rates drop through the floor in replicating the WPI study when you chose the loose criteria for CFS that the CDC and governments around the world prefer. The ones that explain 'long term tiredness'. Depression causes long term tiredness, anything can.
Hence the state we're all in.
To expand on this, if I declared that Parkinson's disease was chronic long term tiredness - how many people diagnosed (with no test) actually have it?
Very few indeed.
Ironically the bragging of the Psychiatric profession of saying they won't be able to replicate the WPI study - is simply showing that the criteria is utter nonsense. Morally, they should use the SAME CRITERIA as the WPI - but they refuse.
Example:
That would be like saying a man, age 40, 6ft tall says he's the fastest runner in the world.
Vs
I chose a woman, age 80, 4ft 2 with myopia and say she's slower.
In other words - incompatible and pointless to attempt to repeat the 40yr old man's running time, unless I chose the EXACT specification of this runner myself.
CDC, and others with vested interests won't be doing that, ever.
They need their CFS to stay as a non disease and Simon Wessely needs to be able to keep describing patients as ''disgusting'' Source: Link and British Nurses need to be able to keep describing patients as ''Lazy Lazy Bastards'' and ''Fags''.
Source: Link And doctors need to be able to keep describing patients as ''piece of pond life''. Source: Link
This is how CFS is viewed, due to anyone claiming to have it, with no evidence required. ''Long term tiredness' remember? That's all you need and as long as it's ''unexplained'' then you're in, and you can wear the gold CFS badge.
The question arises, who invented the ridiculous criteria for CFS?
Psychiatrists and denialists of CFS, that's who.
By renaming Post Viral Fatigue Syndrome/Myalgic Encephalomyelitis ME...........as CFS.
Very few people (by logic) with CFS, would now have PVFS or ME.
Eradicating the original disease, hiding it in a vague fatigue syndrome that is a diagnosis of exclusion, not a diagnosed of immune/neurological origin.
Now I've been sick at least nearly 19 years, as in inside my house for 16 of those.
I never knew what I was telling you, until 13years had passed.
I learn't the day a Royal Air Force ER medic ripped ECG leads off my hairy chest (ouch) and told me to not come to ER when I had chest pain.
This was despite a cardiac nurse telling me to ignore this and always come to ER when I have chest pain. LOL!!! Like a play almost.
When people do that, then destroy the medical records calling you words that rhyme with 'banker' then you know the game is up.
Even more so, when you get a written letter of apology from a doctor (you've never met) apologising about starting an office rumour
about you, and they didn't mean it. Seriously. The same person the military ER medic phoned up and had a chit chat about me - to
start that rumour. I don't have the medical records the hospital ''lost'' - but I do have the letter of apology admitting to the event.
LOL!!!!!!!!!!! So politics is very much involved in 'CFS' and medics can actually hate you so much because of the name (as a white racist
sees someone with a black skin) they actually go out of their way to try and kill you - accidently on purpose.
Without the name 'CFS' this would never have happened.
Remember the name 'CFS' was coined by people who call people with CFS - ''Disgusting''.
Is that not somewhat, malice aforethought? Pre-meditated?
I think so.
XMRV we are told - explains the original disease state of PVFS/ME - but it cannot explain CFS that the CDC and Psychiatric profession embrace.
(The people who tell me to go home and listen to classical music - in ER). Yes, in ER. lol. Not they loony bin, there they just say things like when
was the last time you had sex, and explain how you're capable of getting a girlfriend? And - we need to talk about you sex life.
So as you can see, CFS is a green light for people to take advantage of you (medically) in any way they damn well want, because it's legal.
If you're mentally ill - it's a free for all. Who believes your story? If CFS/ME = attention seeking, then the story is a fantasy.
PVFS/ME was re-labelled as CFS.
If one is to be accurate, one should actually say XMRV is PVFS/ME if the Canadian Criteria patients - test positive for XMRV in significant numbers.
Remember CFS is a 'malingerers excuse' according to the very people who use and like to use the name.
It is wise if you're diseased in any form, XMRV or not, that you don't use the term CFS - as it's based on a lie, and on an insult.
To recap, British Psychiatrist Michael Sharpe states:
''Abnormal physical signs are not compatible with a diagnosis of CFS''.
Source: Link
And Peter White (CDC Bill Reeves new buddy Psychiatrist) who runs the British CFS/ME treatment team in London, UK and sits on the tax payer funded British, Medical Research Council, (MRC) also states:
''Cancer, precludes a diagnosis of CFS''.
Source: Link
Which means 1) You can't have evidence you are sick and use the label CFS.
2) You can't have cancer and use the label CFS.
Guaranteeing CFS is nothing.
Guaranteeing you are viewed as nothing.
Guaranteeing you never get any access to medical tests.
Guaranteeing no money is ever spent on biomedical research on CFS.
Clever huh?
Sick, but clever.......
Esther12
Senior Member
- Messages
- 13,774
Pretty sure it's only a joke. A few pages earlier the some commentator wrote:
Fortunately the mainstream medical profession have graciously placed the psychiatric profession in charge of this disease, and they will most hopefully remain the gatekeepers of these patients.
As we speak, researchers on several continents are likely scouring the psychiatric institutions and databases looking for hand picked hypochondriacs with mild symptoms and an otherwise clean bill of health to use as test subjects for studies to refute the latest XMRV research of WPI.
Here is a typical statement of one such researcher, which is critical of WPI. He apparently knows which side HIS bread is buttered on.
http://www.me-cfs.org.au/node/448
Future researchers will seek out the most neurotic patients they can find, and will screen out any folks with stable personalities, or evidence of viral re-activations or lymphomas. You see, the current state of ME/diagnosis is so vague that there are all sorts of patients to draw from. Psychiatrists will help lead the researchers to the correct set of patients for future studies.
The clear message from the medical establishment, as well as governmental and insurance interests is that XMRV research needs to be refuted as soon as possible, and those doing it need to be discredited. If that can not be done, the researchers will at least seek to muddy the waters and sow confusion. The only wild card is the competing interests of the pharmaceutical companies, but they usually play ball with us, which is in their interest in the long view of things.
I hope that this news of their dim prospects does not unduly distress any of these fragile patients. In the event it does, they should not hesitate to consult with a qualified mental health professional.
Skeptic
Scary that this sort of thing is close enough to reality to fool us though. I fell for his later comments at first too.
Anne,
Regarding the German test, from what I have been told by professional researchers, testing for XMRV is not that difficult. PCR testing is not rocket science, it is a very basic process with several variations. If one copy of a virus is present in a given sample, there are PCR tests that can detect that single virus. If the virus is present in the blood, a good PCR test will find it. On the other hand, if the virus is not in blood, but is in tissue or spinal fluid, then one must have the proper sample. WPI says they found XMRV in blood. The German test did not find XMRV in prostate tissues or the blood serum. So either some of the XMRV studies for prostate cancer have false findings, or the infection is regional. More studies will be required to find that out.
Regarding contamination, there are other known MLV type viruses similar to XMRV found in laboratories, and maybe even in blood, and that is the risk. In particular, variations of the MLV virus that have been used in gene therapy experiments over the years have been found in media used for testing in labs. That is the contamination risk, and it could appear in many different labs. Nothing to do with mice in the lab.
Cold Taste of Tears,
I appreciate the rant about CFS definitions. My point was that if XMRV is the real cause of CFS, it will be present in PWC and will be relatively easy to find in either research or clinical testing. Even the CDC will find XMRV if it is present in just a small fraction of their CFS population.
cfs since 1998
Senior Member
- Messages
- 771
What CFS "is" is not reliant on whatever certain schools of thought "want" it to be. As Erik Johnson wrote on Facebook in response to Mary Schweitzer's rant, "XMRV is not CFS":
A
anne
Guest
I was kidding about the mice. But aren't the chances that the CCF, NCI, and WPI all have the same contamination pretty small? And if their media are contaminated, wouldn't it be an equal opportunity contaminator? Is it reasonable to suggest that the media was contaminated for 67% of diseased samples and 4% of healthy controls--shouldn't the percentages be much closer?
Good question, that would be curious and I certainly don't know the answer, but I do know that people who understand retroviral research believe there is some type of contamination risk. Maybe there are contamination issues that involve interactions with test media.
If the WPI study is not confirmed, this will eventually be explained. False positives and contamination issues are complicated. A researcher told me there can even be interactions between genes and reagents in a PCR test that produce false bands, false positives. So if 67% of PWC and 4% of controls carry a gene that reacts with a given reagent, they might have a false positive.
And false positive risk is significant for antibody studies. There could be another MLV type virus that is cross-reactive with XMRV antibodies, and is common among PWC but less common in healthy people.
Connecting a retrovirus with illness is difficult, MS and Lupus both show evidence of retroviral infection, for example, but studies are not conclusive. Maybe we are in a similar situation.
Why should anyone assume that the German study is somehow mis-measurement? If I remember that study correctly they used real-time PCR which is more sensitive. So they are probably MORE accurate. Objectivity says any well-controlled study has equal weight, which is why multiple studies are necessary when there are conflicting findings. The conflict in the prostate cancer studies should make us more cautious about XMRV for CFS.
I sense a lot of bias here towards the WPI finding. But WPI should be subject to just as much skepticism as people are showing toward the German XMRV study, or any other research group. WPI is doing a great job of selling their findings, but still they could be wrong. The science is very, very early here. One study is just not enough, not by a long shot.
Kurt, there was speculation here if there is xmrv in ticks, mainly because ticks feed on mice first (not deer...)
Several lyme patients have asked that question.
Also, some lyme patients wonder if the reason for treatment resistant lyme is XMRV (from ticks that feed on mice first)
Can you ask your friend to test some ticks?
Can he develop a more sensitive PCR test for lyme? (there is a lab in Poland that has a new real-time PCR test for borrelia, and some patietns have tried it and it detected borrelia DNA but after they took some grape seed extract that butst cysts. Discussion found on lymenet when searching pcr poland)
Several lyme patients have asked that question.
Also, some lyme patients wonder if the reason for treatment resistant lyme is XMRV (from ticks that feed on mice first)
Can you ask your friend to test some ticks?
Can he develop a more sensitive PCR test for lyme? (there is a lab in Poland that has a new real-time PCR test for borrelia, and some patietns have tried it and it detected borrelia DNA but after they took some grape seed extract that butst cysts. Discussion found on lymenet when searching pcr poland)
Daisymay
Senior Member
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- 754
Mice first not deer....
Thanks for this but I'm not quite sure I understand, is it that ticks feed on mice and deer, why the mice first bit...sorry if I am being a bit slow here...
Thanks for this but I'm not quite sure I understand, is it that ticks feed on mice and deer, why the mice first bit...sorry if I am being a bit slow here...
jenbooks
Guest
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- 1,270
mice and ticks
Larval ticks feed on field mice. They are too small to effectively climb up a deer or human. So mice are their preferential host. I suppose other small ground animals would do as well. They also feed on lizards and the western fence lizard's blood kills borrelia. Nymphs feed on most any mammals and so do adults. Deer ticks apparently like to *mate* on deer however. There are three life cycles to a tick--larval, nymph, and adult. They take a blood meal and molt about once a year.
Larval ticks feed on field mice. They are too small to effectively climb up a deer or human. So mice are their preferential host. I suppose other small ground animals would do as well. They also feed on lizards and the western fence lizard's blood kills borrelia. Nymphs feed on most any mammals and so do adults. Deer ticks apparently like to *mate* on deer however. There are three life cycles to a tick--larval, nymph, and adult. They take a blood meal and molt about once a year.
jenbooks
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Me too
Me too. Ten more characters (sorry I was not allowed to just post me too. I had to add 10 more characters lol)
Me too. Ten more characters (sorry I was not allowed to just post me too. I had to add 10 more characters lol)
Esther12
Senior Member
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- 13,774
I don't think anyone wants to have a retrovirus. I'd be quite happy if they came up with any compelling evidence that I'd just developed disturbed thought patterns and illness behaviours.
But if we have a retrovirus, I want to know about it. I'm also hopeful that this research and the interest it's generated will help us move away from the indifference and incompetence which has long been seen as an acceptable way to treat CFS. Which is why I'm so hungry for any news that might indicate it's been a complete bust instead.
edit: Whoops... only just realised I posted this. I had totally re-edited it, then decided it was too rambling for anyone to bother reading, so closed the page, forgetting it had already been posted. Blame the brain fog. My rambling post tried to explain how comlicated and mixed my feelings about all this were, but I expect most people here are the same, even if it's difficult to express clearly and concisely.
But if we have a retrovirus, I want to know about it. I'm also hopeful that this research and the interest it's generated will help us move away from the indifference and incompetence which has long been seen as an acceptable way to treat CFS. Which is why I'm so hungry for any news that might indicate it's been a complete bust instead.
edit: Whoops... only just realised I posted this. I had totally re-edited it, then decided it was too rambling for anyone to bother reading, so closed the page, forgetting it had already been posted. Blame the brain fog. My rambling post tried to explain how comlicated and mixed my feelings about all this were, but I expect most people here are the same, even if it's difficult to express clearly and concisely.
Precisely.
Sing
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XMRV is not the same as the mouse or the prostate virus
Here and elsewhere it was clearly stated that the XMRV found in the CFS patients was not identical to that found in the prostate cancer samples and not identical to that found in mice. The question of lab contamination via mice was brought up when the study came out and it was settled then. These retroviruses are different! I wish to put to rest the fears about mice and the rumor/belief that XMRV is part of the Lyme from ticks business.
I have also read, via the media links thread, that XMRV is a very simple, primitive retrovirus which replicates and changes very slowly.This is the opposite of HIV which replicates and changes so fast, the drugs have to keep changing too. Because of the slow replication rate, it is thought that anti-retrovirals won't work so well for XMRV because the current design of those drugs goes after the virus while replicating. At the same time, it will be easier to develop a vaccine because of the stability of the virus, it was said.
Cecelia
Here and elsewhere it was clearly stated that the XMRV found in the CFS patients was not identical to that found in the prostate cancer samples and not identical to that found in mice. The question of lab contamination via mice was brought up when the study came out and it was settled then. These retroviruses are different! I wish to put to rest the fears about mice and the rumor/belief that XMRV is part of the Lyme from ticks business.
I have also read, via the media links thread, that XMRV is a very simple, primitive retrovirus which replicates and changes very slowly.This is the opposite of HIV which replicates and changes so fast, the drugs have to keep changing too. Because of the slow replication rate, it is thought that anti-retrovirals won't work so well for XMRV because the current design of those drugs goes after the virus while replicating. At the same time, it will be easier to develop a vaccine because of the stability of the virus, it was said.
Cecelia
dipic
Senior Member
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- 215
I'd love to have something else too, but if this is what is causing all our grief or suffering, hell, I'll take it!
I never thought there would be a simple or pleasent explination/cause for an illness this profoundly debilitating.
I never thought there would be a simple or pleasent explination/cause for an illness this profoundly debilitating.