Imperial College now offering PCR XMRV testing

[MEKoan]

I don't want to comment on what transpired earlier on this thread. I just want to commend Muffin on her remarkably graceful and generous response. You have shown real strength of character.


All the best as you move forward during this difficult time.

Koan

 

[acer2000]

So what you all are saying is "The British don't care about what the people in the colonies think". I think we should go dump some tea in the harbor. I kid... I kid...

 

[Gerwyn]

Has any study ever looked for xmrv in peripheral blood mononuclear cells of men with prostate cancer? I thought researchers have looked only in cells taken from the tumor. (I can't remember which. Stromal cells? Epithelial cells?)

they have looked for and in some cases found xmrv specific antbodies in the sera of infected patients The ic protocol could pick these up

 

[Andrew]

Has any study ever looked for xmrv in peripheral blood mononuclear cells of men with prostate cancer? I thought researchers have looked only in cells taken from the tumor. (I can't remember which. Stromal cells? Epithelial cells?)

I have yet to see a prostate XMRV study that used blood samples.

 

[Gerwyn]

So what you all are saying is "The British don't care about what the people in the colonies think". I think we should go dump some tea in the harbor. I kid... I kid...

please dont take it personally and waste the tea! british psychiatrists dont care what british neuroscientists or neurologists think

they are more comfortable with subjective opinions i think facts frighten them

 

[MEKoan]

This is written from the perspective of the imperial college and is of course totally hypothetical!

We have a test that can now detect xmrv if present but we cant risk people with cfs having xmrv because we say this isnt true

so we will exclude any patients with real or suspected cfs from our new test so the following can happen;

we show the backgound level of xmrv in the "healthy " so our test is validated

We may pick up some xmrv in prostate cancer patients supporting this theory and gain plaudits from all

other patients negative for xmrv can later be reclassified as cfs at follow up questionaire so more evidence that there are cfs patients without xmrv

We can only win

Dont forget that these people as exteremly clever and as profs of medical depts ruthless they wont go down without a fight

I have seen this pattern so many times in the past to protect reputations or in the interests of political expediency.

Is it happening now? you might think so but I couldn,t possibly comment

This makes a great deal of sense to me, Gerwyn.

I think you've cracked it.

 

[Gerwyn]

the negative german study looked for xmrv antibodies in the sera of the patients KOHN et al retrovirology 2009

 

[acer2000]

Thanks George, but doesn't work like that on my Mac, there is an application for it, but too pea brained today to work it out, just glad someone has it
.

On the Mac (Mac OS X) there are essentially three ways to do this. You can do "command-shift-3" and it takes a shot of the whole screen. If you hit "Command-shift-4-spacebar", it gives you an icon of a camera and then you can select a window to take a screenshot of. You hit the key combination "Command-Shift-4" and it gives you a crorsshairs to outline the part of the screen you want to take a screenshot of. This last one is helpful if you don't want the whole screen, but don't want your shot limited to just a window. Any way you do it puts the file on your desktop after making a "camera" noise. There are also some programs you can download that add functionlity, but those are the basics built into the system.

 

[flex]

Hey Rachel,

As part of my journey I was diaguessed with with MS. During the weeks that transpired between being told I had MS to being told I probably didn't (I don't), I joined a couple of MS forums/message boards.

I was surprised to find out that people with MS are not necessarily treated sympathetically - not even by their neurologists. They reported being treated badly, having their experience dismissed, being told they could not really be as tired as they said, being told they were imagining symptoms and were not as disabled as they said.

The process of being diagnosed is long, difficult and often humiliating. Unless they lose their vision or the use of a limb, the process is long and hard. They worry about having their "diagnosis yanked" which happens more than you would expect especially if they do not meet the diagnostic criteria precisely. (The flip side of that is that there are people with ME who are diaguessed with MS because the criteria are not held to strictly.)

They have a lot of trouble getting disability unless their disability is obvious - blind, wheelchair bound, etc. They often find it very hard to get benefits when they are disabled by weakness, fatigue or cognitive issues.

And, many said that friends and family had totally checked out of their lives.

I was really surprised that they have so many of the same issues we do.

ETA I think it was the advent of imaging technology that turned things around for them - as much as it turned. A solid XMRV link would do the same for us but we would still have to deal with stuff if the experience of the MS community is anything to go by.

Amen to all of the above. I've been there too. People think that XMRV is going to change things in a flick of a switch. IT'S NOT!!! This denial and withholding of diagnosis and benefits is a political issue nothing to do with science. The science is out there, the docs just hold the access to the truth back from the patients. Its rampant accross all illnesses.

 

[Gerwyn]

I don't want to comment on what transpired earlier on this thread. I just want to commend Muffin on her remarkably graceful and generous response. You have shown real strength of character.


All the best as you move forward during this difficult time.

Koan

i agree completely AMEN

 

[Martlet]

So what you all are saying is "The British don't care about what the people in the colonies think". I think we should go dump some tea in the harbor. I kid... I kid...

Boston Tea Party <--- The invention of ice-tea.

 

[Martlet]

Muffin

Yes, you were very gracious, but you have misread the English. Just go a few miles north of where you lived and people can sock you right between the eyes, along with the best of 'em. I had to relearn how to talk when I moved from S. Yorkshire down to Suffolk.

Anyway, you take all the time you need taking care of what you need to do. And if you are taking time away from us, hurry back because we will miss you.

 

[flex]

No, thefreeprisoner was correct in her assessments on the differences between how the English write and how the Americans write. I thought about that later on after I responded. I realized that when I said, "give him enough rope to hang himself" that the Brits may think that was a threat and not just a saying we use in the US. I then thought about how different our humor is and how we do respond differently to each other. So, I think I am OUT of the business of writing to the English. I am too American and that comes across and not in good ways. So, she is quite right and has made very valid points. I was watching Inspector Lewis last night and noted again what I saw when I lived in England. We do have very different cultures and the things that the Brits say to each other would be considered very rude here anc vice-a-versa. I should have known better since I did live in England and saw first hand the very real differences. We may speak English but our culures and how we react to eachother, etc. ARE verry different. And I SHOULD have remembered that. I did think that having a Yank shake them might make them realize that they are being watched by the world, not just the people in the UK. I did come across as angry, a very angry American, indeed.
So no more writing to the Brits. I'll stick to the Americans where they are used to getting hit between the eyes type of writing. The British seem to talk around things and use snarky jokey but almost nasty comments to get their points across. The Americans just hit you in the face and you know you got hit in the face.

So, FreePris has done me a favor. I really should have known better. It is time for me to concentrate on my family as I just don't have the energy to be angry at the CDC/NIH and deal with a true life and death situation - and one that may leave a 9 year old without a father. So thank you for speaking up about the differences. It was all correct and dead on.

Firstly Muffin,

I have to admit I have not read anything you have sent to any UK authority. However I see no reason why you should not do so. I am a Brit. This issue affects all of us worldwide. As for humor differences and culture differences I don't agree either. We have many different personality types on both sides of the pond. If your letter was threatening in any way that would be a different matter and of concern whether you were American or from Timbuktu. There are plenty Brits who are capable of damaging the cause as well as any other nationality.

I really think that people are being a bit deluded if they think we can carry on as we have the last 30 years. IT HAS NOT WORKED!! No threats and no violence is essential but outright telling the truth as it is seems crucial. We should not run and hide and be afraid. This is a dirty fight led by the establishment we should fight back with equal sensible vigour. This is not the old England of the village green and "lets play cricket".

We need people form all over the world working for the same cause holding authorities to account in whatever country they happen to be in. Martlet you have lived all over the world and got involved with the Obama campaign as a Brit and he WON!!

The more letters these charlatans get telling them we know their game the better as far as I am concerned. It must be peaceful and not deemed to be threatening anything else is down to individual expression.

Discouraging people from being involved in advocacy is wrong in my opinion.

Muffin, thank you for the concern you express for us Brits and please do not be discouraged from being an advocate for any world citizen.

 

[MEKoan]

Muffin, thank you for the concern you express for us Brits and please do not be discouraged from being an advocate for any world citizen.

Thank you, Flex, for highlighting that the those who mean you harm will have a easier time of it if you stand alone. We who have been in this for decade upon decade understand. I try always - though not always successfully - to take the peaceful approach but I am resolute in my commitment to the global community of people with ME/CFS. Were I to ask before speaking about something which affects those with ME/CFS, as Rachel suggested, who would I ask? We have radically divergent opinions about how best to respond. We are allowed that as we all have the good fortune to live in societies where free speech is valued.

peace out,
koan

 

[VillageLife]

Today im asking my self why are they testing prostate patients and not CFS patients for XMRV.

(i think they were going to test both- but they got so much stick from the CFS community they changed there 'story'

 

[Martlet]

Flex, I did work on the Obama campaign, but every half a dozen or so people I contacted asked me where I lived and I had to go through the spiel, telling them that I live in the USA and am the wife of a retired US serviceman. Had I been abroad, I would have been told to mind my own business. In fact, in the run-up to the war in Iraq, I received phone calls from all over the USA from people telling me to mind my own business and that if I didn't like it here, I should go home. That was an awful time when even one of my closest friends turned on me, accusing me of meddling in US affairs and calling me names as we ate breakfast in a local cafe until the waitress stopped serving me and the entire roomful of people were staring at me. Also, I could not have a PAID job on the Obama campaign because I am not a US citizen and even though I am legally allowed to work here, it was still seen as potentially damaging. The Republicans don't employ non-citizens for the same reason. So, while members of the general public may have no problem with those from other countries joining their cause, I do know that official bodies take a very different view.

 

[MEKoan]

Hey Martlet,

Don't you think that example - I know you did not raise it first - is a bit of apples and oranges? Attempting, as I did myself from Canada, to play a part in a sovereign nation's election process, specifically, is very different from being part of the ME/CFS community and advocating for good science and productive, transparent scientific cooperation globally. I don't think they are analogous.

 

[thefreeprisoner]

Muffin, my hat is off to you.
Even when you've been going through hell, even when you're so angry and fearful, you've been generous, gracious and ever so sweet in your response to me. I'm blushing.
I wish you all the best. If there is anything I can do for you, please let me know. Thinking of you.

Rachel xx

 

[Martlet]

I know you did not raise it first

No I didn't, and I wouldn't have because I agree that it is not the same thing.

Attempting, as I did myself from Canada, to play a part in a sovereign nation's election process, specifically, is very different from being part of the ME/CFS community and advocating for good science and productive, transparent scientific cooperation globally. I don't think they are analogous.

Everyone is free to write to whomever they choose, but it depends on whether we want our letters to have an effect. What is our aim? If it is to appeal to people's "better angels" then we need to do it respectfully, with personal stories. If we want to write angrily, then we have to have an "or else" with which to beat someone over the head, figuratively-speaking. "Stand with us or else you won't have my vote/I won't pay my taxes/we won't fund your (whatever)" can work, but "Stand with us or we will be watching you" really has no effect. Watching them and then what? They - whoever they are - already know the world doesn't give a biscuit over what happens to us and that the only people "watching them" are a handful of sufferers who cannot affect them, one way or another.

I think Americans would do better to concentrate on changing what they can over here, knowing that if the CDC comes over, then the British will follow very quickly.

Sorry if I sound like a cynic, but I've been around politics for a very long time, one way or another.

 

[flex]

I think Americans would do better to concentrate on changing what they can over here, knowing that if the CDC comes over, then the British will follow very quickly.

Sorry if I sound like a cynic, but I've been around politics for a very long time, one way or another.

Martlet,

I don't really agree, this is not a border issue to me. Wessely and co work for Multi nationals. When the US want a rent- a-biostitute to deny GWS they call on Wessely. I don't see the American officials telling him to mind his own business then. Large global Pharma is involved in vaccines that could potentially damage our children.

British beef was being sold around the world whilst the UK government was denying BSE. This is a global economy with global corruption spin and cover up. We have every right to complain to who ever we want if it affects our life. Wessely affects Muffins life and millions of others in numerous countries. It seems you are suggesting that we should play by the rules of the Status Quo. Again, THEY HAVE NOT WORKED! this is the era of mass communication and the establishment don't like that - all the more reason for us to research and question anyone we like. From what I gather Muffin spent some time in England. This means she or any family member could have potentially caught a disease here that our government has an obligation to protect against. They are clearly not doing this.


If people fell out with you for your politics Martlet, more fool them, because you seem like a million carat gold kind of person. I am quite surprised that a moderator on a global site for worldwide expression should appear to take the stance to stick to your own backyard. We have to let the establishment know that times have changed and we will continue to hold them to account.

Also don't forget that the CDC is still a very tactical issue, the science has been out there for years. Just accepting XMRV for whatever role it plays does not stop the psych lobby and their conspirators from saying "you also have a functional somatic disorder". This is exactly the tactic being employed by the APA for the new DSM. Reeves has only moved down the corridor on the same salary. We all have to take a look at the politics of the DSM V and stop thinking this is about good scientists versus nasty scientists

"Starting Feb. 14, Reeves will be senior advisor for a NEW mental health surveillance program that will explore how various diseases and conditions affect mental health."

It seems you will get marched out of one door in the CDC with a positive XMRV test straight into the office of MR Reeves to be given your mental health diagnosis then sent for CBT and GET because "your physical illness wouldnt cause such disfunction". Just like they say to people with Lymes disease and MS.

The science is not going to "settle" this in the CDC so that the corrupt UK and US authorities, insurance companies etc all roll over and give us a big apology. If this was purely a scientific issue it would have been over years ago and we may have all had a cure by now. I have seen this belief an unsettling amount of times now and am concerned that we are playing right into their hands as we sleep walk into another disaster.