Discussion in 'XMRV Research and Replication Studies' started by Wildaisy, Nov 26, 2009.
Which drug do you refer to?
Huh? Do you mean vistide?
Well, Virginia, there isn't a Santa Clause.
But sometimes good things do happen. In fact, sometimes, orphans get new parents and sometimes little girls dream of becoming famous singers, and it comes true.
We'll have to wait and see if WPI turns out to be our Daddy Warbuck. But even if it isn't, there is always tomorrow.
So let's be optimistic, but cautious and reasonable.
Well, it's only rumor I now report, but a prominent scientist here in NY says his colleagues tell him XMRV and CFS is not panning out. I didn't ask for specifics and don't know if I should even post this but indeed caution is warranted until we get peer-reviewed confirmation. And even then we would need to know how causative the virus is.
I still have high hopes for it although in my case I'm not sure it applies. My case is so obviously sudden onset after a tickbite and bullseye rash, however I still wonder how many bugs were in that tick.
Vistide, valtrex, valcyte (fully acknowledging that Montoya's study was not the clarion call we'd hoped, valcyte still works for some people).
ME Research UK link is good!
I thought this link is to some very good reports. Would you please add this link to the links no discussion thread, just so people would have access to it? I don't know how to transfer links.
I'd rather hear rumours that the XMRV link isn't looking likely as soon as possible. The longer the hope builds, the worse it will be if it turns out the research is flawed. Bring on the bad news quick imo.
Me, too, Esther12!
No matter what, we can expect some rumors that it's not working since we know the CDC is using a flawed sample.
I doubt he was referring to the CDC.
I don't think the research was flawed, but it certainly was skewed. Thanks for posting the tidbit Jen...
Exactly Anne, you hit the nail on the head.
CFS could never be linked to huge percentage rates of XAND (misdiagnosed as 'CFS' - CFS is 'unexplained' remember). There are at least 5 different diagnostic criteria in use for CFS. Some not bad, some terrible. Those with vested interests (British NHS) and (American CDC) have already stated they won't be using Canadian criteria CFS ME but people with depression, obesity, medically unexplained chronic fatigue (tiredness) and stress. None of these groups have an inflammatory neuro immune disease state - by very nature of the cohort chosen. So the outcome is predetermined. (Hence the soundbite from Reeves, which mirrored Wessely stating they won't replicate the findings).
We all know mentally ill people without neuro immune disease symptoms are diagnosed in their droves with CFS. This makes up the majority of people I believe. When they say 25% of people are severely affected, reality will be around 20-28% of people test positive for XAND with 'CFS' or lower. What a co-incidence that will be....not! XAND is a progressive disease state, the longer XMRV is in your body, the more it damages you.
Yet we're told by the people who covered up the disease for 20+ years, that 'most people' get better. Yea right. Dysautonomia is incurable. Dysautonomia is incredibly common in ME CFS. Go ask a Dysautonomic if they got better with psychiatric measures and they'll bop you on the nose with a beta blocker. So we can discount the recovery sillyness. DNA Retroviruses do not go away like a bout of depression causing CFS can. A CFS that Wessely uses of 'No Specific Symptoms'.
Shall we say having Lupus has no specific symptoms?
Or Swine Flu?
Or Cystic Fibrosis?
LOL Maybe not. If it's something vague, then it's 'anything'. If something is 'anything' then it's also potentially, nothing - and nothing becomes CFS.
Who wants to think XMRV causes CFS, it doesn't. XMRV+ patients were told they have CFS. HIV/AIDS patients have CFS, Severe Diabetics have CFS.
(They all have a state of long term tiredness).
CFS does not explain the symptoms of XMRV damage, the criteria are too weak unless we use Canadian criteria - American government via CDC are not, British government NHS are not using Canadian criteria. Professor Peter White (Lauded by Reeves as an Autonomic expert) when he's a Psychiatrist - says that Canadian Criteria are not helpeful and 'confusing' and should not be used. He said that on BBC Radio 4, You and Yours.
CFS as we speak is being explained as long term tiredness. That does not explain mitochondrial problems, inflammation, dysautonomia, cancers, deaths, the works.
Misdiagnosed diseased people have been told erroneously, that they have CFS since these vague criteria where introduced by people who said it doesn't exist. When I got sick when John McEnroe was winning tennis matches - I was told I had ME and it was a virus in my body, 20 years later I'm told ME doesn't exist, it's called CFS and I can cure myself by saying 'NO' and a cure is possible in 3 days and this is advertised in ME Charity support magazines sitting in my kitchen. To my horror.
I would never have believed that ME charities in 2009 would be openly 'selling' ME (now called CFS) quite openly as a mental illness.
But they are. So I don't have this issue do I, if I have many positive test results for immune abnormalities and Dysautonomia/POTS, osteoporosis as a young male etc etc. That's not 'unexplained' chronic tiredness - or 2009 CFS. That's a disease process, probably caused by XMRV. I shall find out.
CFS has become a myth, part of folklore and jokes and gags in pubs on a friday night - my disease is not a joke, so I won't use a joke label.
CFS was invented by people in denial of neuro immune disease (CDC), let them have their CFS moniker. We already have a new one, XAND.
People who don't have XMRV can have CFS, who wants that label anyway?! Shall we all wear a dunce hat? Lets wear a label of shame and damage?
Err I don't think so.
If Diabetes had been wrongly labelled CFS, and only 'some' CFS patients have raised blood glucose when tested outside of the WPI study. Then CFS isn't diabetes is it?
Diabetes is diabetes not CFS.
XAND is XAND, not CFS.
CFS is unexplained.
XMRV is a virus, and not unexplained.
You can't have it both ways and say you have unexplained CFS and are XMRV+ positive - that's impossible or slightly bonkers.
Let's break it down like this:
Patient A: Mentally ill person loves to use the words CFS it legitimises their mental problem, they can be depressed and feel worn out and can't sleep since their boyfriend left them and they lost their job. This is Dr Oz CFS, this is Oprah CFS, this is Teitelbaum CFS.
Patient B: Diseased person with XMRV loves to use the words CFS it legitimises their neuro immune disease. Now they believe (wrongly) people will believe them because Donnica said it was real.
One of these people have to be excluded here. It has to be patient B, as patient B is the minority.
Looking at Patient A: They will be the winner here.
How can you erase CFS used an mental illness explanation? Impossible. You can't. The Insurance Industy and Governments can save billions by telling people they have CFS and sell them 'cheap' CBT/GE/Pacing. All involve the patient 'taking responsibility' for their illness and the patient curing themselves. Health agencies do precisely nothing. Huge cost saving.
Do you think they'll drop that? Never.
The only way this will change
Now if the government want to change the criteria for CFS, re-list it as an infectious disease that causes immune supression and inflammation - then I'll use CFS as long as Patient A cannot. But I won't when people are tapping their chin three times, and saying this is how I control my CFS. Or plugging my brain into a laptop and doing NLP. Then my disease is unexplained, and on the fringes of mental illness.
We understand this and that's all that matters. Lets get these blood tests back, see how it works out and get access to an immunologist and some medications - finally.
That's all we need to worry about guys, it doesn't matter if 0.1% of CFS patients have XMRV in the follow up study, what matters is we have it, and we can get treatment.
What matters is that the imposters who stop me from getting medical tests, (as the imposters 'recover') - so I should too?! are exposed as imposters.
Do people sign up to breast cancer forums, and tell people to stop feeling pity? Err...... They'd get banned, on here - they are embraced! Which says it all.
What matters is the imposters don't sign up to internet forums and tell me I should stop standing up for myself, and others who can't even speak.
What the buck?
I've been laying in bed in Hospital in an ME Centre with an 'ME Patient' who is going down the pub and getting drunk and coming back to the ward. He took my place in the ME centre (they claimed no beds left), and I was sent home -bed ridden. We both were told we had ME because ME became CFS, and CFS became 'chronic tiredness'. This guy was on my side, he agreed he didn't have CFS at all, but this was the label. He even offered me his bed in Hospital for him to get sent home. He was a good guy, just a drunk.
It didn't matter to the NHS ME Centre, that I couldn't even pee out of my own bed. The guy getting drunk was praised - he was 'getting better', I was blamed and told I was a fool, I'd be a in a wheelchair for the rest of my life, and that was by whom? Professor Lesley Findley, neurologist - at the National ME Centre. The man who says in AYME charity magazine.
''I can count the amount of patients made worse by graded exercise on the fingers of one hand.'' That's strange isn't it, when we read that people with ME (XMRV?) have inflammation before exercise that is higher - than healthy controls after exercising on an exercise bike. How strange, none of his ME patients are made worse from exericise - when it has to damaged you pathalogically if you have it!!!!!!!!!!!!! And how strange, that when I am made worse I am blamed for it.
Do Parkinson's doctors blame their patients for 'Shuffling'? No.
Do Breast Cancer doctors blame their patients for breast pain? No.
Are there cardiac doctors who say their patients are made better by high fat diet, no exercise, stress, and being overweight? If not, then why is this UNIQUE in our disease? Because of the name CFS - because CFS is 'unexplained' chronic fatigue. Doctors take advantage of this, as well as patients, as well as health angencies. It's a free for all. An orgy of deceit.
Who was the one all along with a genuine immune disease, Dysautonomia/POTS. It was me. Yet I was the failure.
How interesting when I state this, when I state the ORIGIN of the hate towards me - random mysterious people sign up to this forum saying what they do in my signature below. It's obvious who these people are.
How did this happen? With the label of CFS, that's how.
Try that experience since 1991. It's nearly 2010. Nothing has changed, it's gotten a lot worse. Now Professor Findley at the National Me Centre is referenced by Phil Parker of the 'Lightning Process' fame - the cure in 3 days for ME CFS by saying 'NO'. Err......
CFS must die, but the patients must live.
Do Asthmatics worry if people with CFS have lowered lung output during shortness of breath? They don't care, we shouldn't care about CFS - a useless label that's caused nothing but harm suffering and misery for millions of people around the globe. Not just me, millions of people.
The last thing anyone should be doing is holding onto that label, and/or worrying if 'the government' tell us levels of XMRV don't match the WPI study.
By logic and vague diagnostic criteria, they cannot until CFS is altered to be as serious as HIV/AIDS.
Currently it's a clown disease, and clown science.
My nose might be red, but I'm not jumping through hoops any longer to applause.
sayōnara CFS, bonjour equality.
And that's all I have to say.
How do you mean?
Hi Guys! For what it's worth, I've been taking 3200mg. of Acyclovir for nearly 4 years non-stop. Acyclovir (used to be Zovirax) and Val Acyclovir (or Valtrex) are the two Herpes-family antivirals most commonly used for a range of Herpes Viruses....I have Shingles.
Valtrex is made into Acyclovir in the body...and you need less of it and less often than Acyclovir - but my Insurance covers the cost of Acyclovir only!
I asked my Dr. what will happen if I test positive for XMRV and he said we will ADD an Anti-retroviral (as in a "cocktail")...but there are over thirty already in use...and another ten or so in the works...I wasn't told which one it would be.
I have another 1-2 years to continue on with Acyclovir, at best, so I'm adding an immune modulator to acyclovir...if shingles stay suppressed for 3 months I can titrate down by ONE dose (800mg.) of the antiviral.
So you can see how agonizingly slow these processes are! This is just MY protocol...of course, everyone is different. In other words...DON'T try this at HOME!LOL
Funny...I was going to remark on how much my cognitive/memory has IMPROVED with antivirals...but I just realised that I might be posting sort of off-topic here!? Just having an "off" day! (sorry)
How was it skewed?
It's my understanding the the vast majority of the patient cohort was defined as the 'sickest of the sick'. So hopefully followup research will be more balanced and include those who may have more function yet remain disabled -- while still fitting the same criteria/definitions used in the original study.
I think he means their patient cohort was very carefully chosen to maximize the percentages who would test positive.
Who knows. I report a rumor--I didn't ask the details--it's not my business as a nonscientist. They share their information as an insider network--but it may take a while to write up a study, pass peer review, and publish...
Perhaps at the end of day, XMRV will be shown to be significant in a portion of CFS/ME patients--but not the overwhelming majority. Who knows.
I certainly find it notable and interesting as it's a human retrovirus.
For that blogger to say it is nearing consensus as the "cause" makes no sense to me, as there are other organisms that can cause that picture (such as borrelia).
And besides we already know that there are distinct cohorts, for instance, those in Incline Village or Lynbrook got sick in outbreaks that looked like bad flu's from which they did not recover. Those outbreaks suggest a highly contagious organism.
Other people have had slow insidious onset. And sometimes family members come down with it and sometimes they don't.
That doesn't look like the same entity anyway.
I have no idea if any of these rumors--that there is a consensus and confirmation of results not yet published; or that the results aren't panning out--are valid.
So we just have to say at this point they're all rumors. Might as well report them and just patiently wait.
Thanks Jen...so articulate and very well said. I wanted to mention the cohorts, subsets, etc., but fizzled. Your brain is working a lot better than mine.
p.s. And then there's the issue of the Defreitas retrovirus not being the same as XMRV -- which brings up the question I asked on another thread: Are their other retroviruses involved besides these two? And which came first, the immune dysfunction or XMRV, etc? Okay, I'll shut up.
The patients in the WPI study had to at least be able to get to a doctor. They were not the sickest of the sick.
The sickest of the sick were excluded even if they fit "the same criteria/definitions used in the original study."
If you are looking for a more balanced cohort, you will have to go into the homes of the housebound, the bedrooms of the bedridden.
Weren't some tests run on tissue samples from past patients? I'm not certain where I read the 'sickest of the sick' quote, but I believe it may have come from or been attributed to Dr. Peterson. Don't quote me on that however.
Cold Taste of Tears,
You can also try a Google Site Search
Separate names with a comma.