Susceptibility of (XMRV) to retroviral restriction factors

[free at last]

Ok fair comment it is mostly negative information lately, but if you do see something positive, i hope you will post it up ?
Yes its sparked interest, but it will i feel also have a detrimental effect too. There will be many who had already made up there mind about the condition unfavourably. who might, just might for a milli second there, have been less sure of the, its all in the mind veiwpoints. Who for a brief instant might have been thinking, hey maybe i was wrong, hey maybe those folks really do have organic illnesses. who will now smugly walk away and say i knew it was too good to be true, what a fool i was for beliving for a second those folks are genuinely ill.

its ok i wont make the same mistake, another big discovery gets put foward. ( we know a lot of these people ) and many which we do not no doubt.

It wasnt the WPIs fault, Judys or Annettes. how could they know the way this was going to turn out. At least for a millisecond they gave us respect, and uncertainty from all those self righteouse people, doctors, shrinks, Family, yes even family members, who will now say what a waste of time beliving for a second. the damage this could cause will be grave.

Thats what i meant about going against the ME community. There are those who likely are loving all this. and many who will turn there backs, from the girl who cried wolf. even though, at the time she was our light. and even if wrong. will always be our light. I would rather someone tried with all there heart and be wrong. then to turn the other way, because its whats expected of there peers around them. or they too becaome the outcasts. yes Judy M is in many ways a outcast now. But one with a careing lions heart. the others are just self opinionated cowards and sheep. who will now be even quicker to dismiss the condition. God i hope Judy does well in the BWG, and lipkin finds it. the only trouble is i dont think either will happen. such a sad affair. which had such promise. would have been the biggest medical turnaround in history. something so many just for once truely deserved

 

[currer]

Hi free at last,

Hope your'e OK. I wonder why you feel so demoralised about XMRV? I cannot see any problems, I still think the WPI right, the opposing science is loudly publicised, but without foundation. They do not want to find out what is wrong with us, so they are not prepared to give the evidence the consideration it deserves, but jump into tendentious and theory driven rationalisations, intended to shut down further investigation.

As far as ME being psychological, there is a paper due out which should stop that argument once and for all. I am a little worried that it still hasn't appeared, in case there are political blocks to publication, but really things are much brighter, JM is not wrong, please dont loose faith. Mikovits and Ruscetti know how to find viruses.

Haven't you heard about the latest addition in Genebank the JHK virus, another MLV virus found in blood taken in 1989.
There is a repeated pattern of not following up retroviral discoveries in ME.
The furore about XMRV is just a political cover. There are many MLV variants. The Paprotka et al. paper is irrelevant to the full picture - even if you did eliminate XMRV, it is only one variant among many found in blood.

This is so embarrassing to the pharmaceutical and political establishment they have to discredit the original discovery. And they are going to try their utmost to do this.
You must think for yourself and not believe what you hear without analysing it.
Dont get depressed - there is a revolution going on, but it wont be pleasant.

 

[free at last]

Thank you currer, its just all going to be to little to late, even if you are right. i am doing ok in one sense, the FLU type symptoms ive been pretty on top of for years, with odd relapses. but compared to some. i know im lucky now. as i dont get that much, compared to the past.

but other things are going wrong that my doctors just dismiss, i cant even get them to take my latest symptoms seriously. pain in my chest wall,coming and going ( but never really going away) had a heart trace. they say its just ectopic beats, maybe, if sometimes sever ones.

but not just pain in my chest ( this is new the last few weeks) my left shoulder feels like the bones are seizing up and might be connected to the chest pain i dont know.

arthritis maybe ? i get bad psoriasis on my face. which i know is auto immune, as is arthritis, it speaks of immune dysfuntion, and symptoms similar to coeliac dsease im also getting .

what if judy is right. i should be able to tell my doctor ive been diagnosed with xmrv, but i cant. i havent said a thing. why do you think i havent ? becuse he will lisen to the negative research and dismiss me again. yet he does say oh you just have some inflamation take pain killers. but eventually like all of you its going to kill us 20 years earlier,feels like maybe im noticing the beginin ofa new era in my ME life. one thats the beggining of the end. i hoipe not. but thats how i feel. we need proof and we need strong proof now.
thank you currer your considerate i can see that if judy does well in the BWG you bet im telling my doctor. otherwise im waiting now to see if i get worse and who knows finally become disabled. yes im low. youve all been there. its just bla bla bla isnt it. many of you are worse off. and that makes me feel like a fraud

 

[RedRuth]

@ Mark, I think you make some very valid points and I am aware of the pressure to have a 'practical application' (there's a buzz phrase that I can't quite remember) to your research but as I pointed out, scientists with permanent positions (ie all the academic staff at a University) can and do carry out independent research, particularly pilot studies. I do see that it's entirely possible that funding bodies like the MRC or The Wellcome trust may have a bias against funding research into ME but to translate that into not trusting the work of scientists funded by them or even doubting their integrity is, frankly, ridiculous.

 

[currer]

Hi Redruth, As has so frequently been said here, the bias is that positive papers never see the light of day.
Arguing from what gets published in this field is itself distorted from the outset.


Free at last - Try not to worry, I have been ill thirty years, I have not developed any cancers yet. These symptome get us all down, they take the pleasure out of life, but though they feel bad they are not usually life-threatening.
You sound pretty down, I know the waiting is a strain, and all the attempts to undermine the WPI and destroy our hope.

My symptoms have changed over the years, I think the body tries to cope in different ways as time goes on.

I am going to my GP next week and I am going to discuss all the research with her.
I think it is very important to get the information out. She can make what she likes of it. I am determined that she will know what we know.
Even if she does not believe me she wont forget what I tell her.

I have discussed the research with her before and she was very receptive and interested.
She resents the rubbish she is fed about ME, she has several patients she wants to help, she knows the current orthodoxy does not give her the help she needs to care for patients.
She has a right to know what is going on. I believe research into ME has been blocked for a generation because of fears on the part of pharmaceutical companies that there is some link to vaccines ( as some do develop ME after vaccination) When you look at how they treat autism you realise they keep an eye open for suspicious illnesses turning up that might damage their market position.
They have treated both patients and doctors who want to care for patients as their dupes.

The truth will out. There are so many scandals at the moment, things that have been covered up for years coming to light, I think the time is ripe for justice for us at last. The fact that the WPIs findings are being attacked so much shows that they are being taken very seriously indeed. A tribute to the importance of their work. It is hard for us to watch, that's all.

 

[free at last]

That was a very uplifting post, and i know you are so right in what you say Currer. Your right i should tell them even if i am dismissed. But i try to have a relationship with the doctor, where im not judged all the time. sick of being judged you see. which is why i hope for positive information to counteract all the negative information that has been pouring out. So my doctor has to listen. can not dismiss you see. but really i should try to educate, or im letting everyone and myself down by being bullied into silence by ther opinions. i will think about this.
And yes the positive papers are being with held. if the playing feild is so fair as some want us to belive. then why is that happening, what are they afraid of, if the WPI are wrong then its there reputation that is on the line. Journals could just add disclaimers. saything the veiws are of the wpi alone. what would be so hard about that. and what of the recent german positive findings. why is that not published ?